Nearly 30 years ago a child was born to a dear friend of mine. The child had a birth defect the hospital could not treat and my friend smuggled the baby out of the hospital to another state where she had found a hospital where they were doing groundbreaking surgery that saved her child. The baby grew up, went on to get her masters degree and lives a normal life. Had the mother not had sufficient means, support, and courage the young woman I know well today would not exist. The surgery is now commonly done in hospitals around the world.
As I read the comments here, I must ask, "Do you know anything about these cases other than what you have read here in this particular column? Have you read The New Yorker pieces by Aviv?" If not, go and do so because with knowledge of what really happened, it is likely that your opinion will change or, at least, you will not be so cock sure of what you have written. The Aviv piece on McMath opened my eyes to how our definition of clinical death was arrived at during the 20th century, and how it is now being questioned by the very experts who made it. The young woman I know would have been allowed to languish on life support until clinical death. Alfie Evans wasn't even given that luxury. And, because of her case notoriety, McMath is still unable to get the treatment that might save her.
Why are we quick to condemn women and doctors for killing their fetuses, yet slow to make efforts to support the lives of wanted children and the elderly?
35
It's interesting that Ross wants to extend unnecessary and inhumane medical care to brain dead and rights to embryos while supporting policies that deny basic healthcare to much of our society because it costs too much and interferes with huge giveaways to the rich at the expense of the poor. That is what religious "conservatism" has become.
And he wraps these "moral" arguments in self-righteous, medieval religious doctrine from a church that condones and covers up child molestation and mistreatment of women.
39
I wonder why Mr. Douthat makes no mention of Alfie's most proactive supporter, Pope Francis. So often Mr. Douthat makes so much noise about the terribleness of Francis in many a column. And now, when both are in agreement, not even a sentence?
19
So many comments chastising Douthat for advocating for family directed medical decisions, but at the same time being anti-abortion. I just wonder if the hypocrisy goes both ways? Are you advocating for free and unencumbered access to abortion, but when it comes to a sick child/parent, the state gets to choose treatment or lack thereof. Seems to me, you can't have it both ways.
8
"Yes, that choice may be wrong; it may have its own dark or foolish motivations. But those are risks a humane society has to take, so that in our weakest moments we can hope to be surrounded not just by knowledge or power, but by love."
Mr. Douthat, you ended your remarks with these powerful statements. Do you apply these same statements to capital punishment; to a woman's right to terminate an early pregnancy?
Please consider this question.
14
The hospital in Italy was prepared to treat Evans. The hospital in the U.K. no longer had to use its precious, NHS-depleted resources on him. And they still refused. About a day or two before his son died (after being taken off the ventilator he needed), his father made a plea to more than a million people in Alfie's corner to back off. It read like a hostage note.
Alfie Evans died because the hospital -- and all of socialized medicine -- had to save face. They simply couldn't risk the chance that he could survive elsewhere, lest they should have some explaining to do.
6
The contradictions just jump out at us, loudly and explicitly. Sigh.
3
The United Kingdom has decided to discontinue treatment: fair enough. But why can't the family take *their own child* to another country for care, where the financial obligation is no longer the UK's concern? This is the question. Some of our readers, however, unable to answer this question, prefer ad hominem attacks on Ross's faith and supposed political stances.
11
Mr. Douthat completely misconstrues the basis of the New Yorker article about the Nevada couple who were living on their own and capable of managing their own affairs being taken advantage of by state appointed agents. It was about thievery of old people by state enabled (privatized) crooks. It was a warning to all older Americans about how their life savings and retirement accounts (supposedly safe) can be stolen, and how they can then be drugged and illegally imprisoned. The “legal guardians” and judge in this case should be in prison and all their money be awarded to their victims. Please don’t bend the truth, Mr. Douthet to make your point. https://www.newyorker.com/magazine/2017/10/09/how-the-elderly-lose-their...
10
This column is so facile and shallow. it's hard to know where to begin. Let's start with my doctor friend who told me about a wife who urged him to pull the plug on her husband who looked to have poor prospects. My friend held on and the guy recovered. The patient's first words were "did she try kill me?"
I have two close friends who are CASA's, court appointed special advocates, and better people than me. One of these worked as a special Ed teacher all his life. His wife worked in social services. These folks have told me so many stories about disfunctional families. They include both heart warming outcomes and tragedies that seem so unfair they just should not exist. These stories show both that the system works and that it fails. No system can be perfect. Without the system there would be no successes at all. One thing though is pretty clear as to to me and that is that the system in this country at least leans so far over backwards that many children are put unnecessarily at risk. The people I know who are intimately involved with it agree, though reluctantly, because they see that the system is imperfect too.
There is one big thing we can do in this country at least. We can fund the system comensurate with the problem. The conservative government here in AZ shows little care for poor people and even less it seems for the people who staff their social service agencies. They starve them of resources and pay them peanuts.
8
I enjoy your column and your writing and appreciate your insights, but I puzzle over your apparent failure to see the connection between religion, perhaps your beloved religion in particular, and what you describe as "the coming world of post-familialism, the world bequeathed to us by sexual individualism and thinning family trees."
A religion that allows for individual interpretation of a rule-making god necessarily gives rise to individual realities custom-built to satisfy each individual's desire to command his or her own fate as a self-god typically at the expense of, among other things, important family relationships. Raised in a devout Christian household as part of a much larger devout Christian family, I've witnessed religion's corrosive effects on the family firsthand throughout my life. Respectfully, religion, defined as I see it as a god-centered basis for human understanding, is the cause of the problems for which you seem to think it is the cure.
12
As in all these issues we have costs and the question is whether we should pay for Alfie or pay for numerous others would need preventative care. We have a political system that has 50% of those in power arguing for reducing medical care for the poor at the same time advocating for extraordinarily expensive care for others. How does Mr. Douthat reconcile those two competing needs. Why should we spend thousands (millions?) on Jahi and Alfie, yet not spend a similar amount on preventative care for the poor?
25
It is worthwhile considering why some of us are willing to bear any cost and shoulder any burden for some people at the end of life, but we do not support people trying to escape poverty or war.
22
Always, always, always thought the prism and prison of his religious beliefs.
Those beliefs have costs. They cost human bodies left bereft of human minds and it is our minds that make our bodies the vessels to contain what Douthat would call the soul and I call simply the life and person. Without a mind. There is no person.
Other costs? Enormous medical ones that society bears because unless they were multi-millionaires the families would not and could not. In the case of the girl cited by Douthat I believe all such costs have been borne by Medicaid.
Douthat supposedly functions as a conservative voice in The Times. But it isn't. It is the voice of his church and it does not belong on a secular Op-ed page unless a completely apposite view of religion is as prominently and frequently featured.
20
Ross briefly mentioned class bias in this write-up. From the comments of hospital officials and various experts quoted in the media, I was able to learn, reading between the lines, that Alfie’s parents were not well-off.
That I was able to tell this at all is sort of part of the story. “You should know that this child’s family,” the experts seemed to say, “well, they’re not very educated or well-regarded. And they’re *religious*.”
It’s as if they were communicating to newspaper-readers that this family was not in the ingroup. “Don’t worry, *you’ll* get to decide *your* child’s fate if she’s ever sick. But we can’t have the rabble making demands on our system, thinking they know best ...”
5
Parents are rightly the natural guardians of their minor children and presumed to have their best interests in mind. We shouldn't and don't set that aside merely because someone else might make different choices, but there are times, as in the case of abuse or when parents insist on providing or declining treatment against the great weight of medical evidence, in which society as a whole must protect those children. I don't doubt that Alfie's parents acted from love, and as a parent myself I realize I can't say what I would do in a situation I've not had to face, but medical professionals are bound by their oath not to cause harm and the treatment the parents wanted for Alfie, in their judgment, would harm him. Instances in which a parent should be stripped of decision-making should be, and are, rare.
As for guardianship, I know laws and procedures vary greatly by state, and while the Parks story was terrible to read, it bore no resemblance to the procedures in Texas where I practice guardianship law. To the extent that states need to shore up their policies to ensure the rights of the proposed wards are protected, such as by mandatory appointment of attorneys ad litem and visits from court investigators, I hope such stories serve as wake-up call.
Ultimately, when we're protecting the vulnerable we have to collectively decide where we fall in balancing the rights of the vulnerable and freedom of families to make decisions.
11
The problem for me is not that the doctors said there was no hope, but the fact that the government would not allow Alfie to leave the country, even though there were doctors and facilities ready to take him. If Britain's medical experts were so sure, then they could simply wash their hands of the matter and let Alfie go. But if somehow Alfie continued to live weeks, months or even years in someone else's care, that would not speak well of an all-knowing government, would it?
10
The government, on advice of physicians (and ethicists) concluded that keeping Alfie alive - anywhere - would constitute harm to him. That is a serious argument to explore, once you get past anti government rhetoric.
15
It’s ironic, America’s preeminent Catholic journalist, Ross Douthat, writes persuasively of a parent’s right to keep a child alive even though that child’s life, medically speaking, is close to being beyond life. If only Douthat could see himself advocating for sensible end-of-life treatments, whereby a suffering old man, in mortal fear of being warehoused in a for-profit assisted living facility, could easily, with doctors and loved ones by his side, end his life with pride and dignity. Isn’t life and death merely a matter of perspective?
9
Is it really too much to ask that people like Douthat do even the slightest bit of research before putting together these columns? Not a soul in the world wants to see a little boy dying needlessly, but to continue to parrot these half-truths based on nothing more than your own biases, is at best dishonest.
The family division: http://www.bailii.org/ew/cases/EWHC/Fam/2018/308.html
The first appeal: http://www.bailii.org/ew/cases/EWCA/Civ/2018/550.html
The Supreme Court: https://www.supremecourt.uk/news/permission-to-appeal-determination-in-t...
The European Court of Human Rights: https://hudoc.echr.coe.int/eng-press#{%22itemid%22:[%22003-6046074-7771568%22]}
The second appeal: http://www.bailii.org/ew/cases/EWCA/Civ/2018/805.html
19
Thank you for this.
4
Sooner or later Americans are going to have to face the fact that medical resources are limited, and in the way of other scarce goods must be rationed by some process. And if we don't sit down and discuss what kind of process this is going to be - well, then, it will be chosen for us out of cold, pragmatic necessity. I am thinking not so much of as cases like Alfie's, but of the millions of old people, in various stages of hopeless decay and misery, being stacked up and warehoused in nursing homes around the country. It all comes down to the right to die with dignity, to be able to choose one's time while one still has the faculties to do so.
5
You say that decent societies let families take care of their own. But nowadays, decent families expect society to take care of their family members. Society will pay, either by taxes or donations or increased cost of insurance, for the care their children need. Sometimes this care has little or no change of given the child an extended brain-dead life. Why do these people think the qualify, the value of a life, is measured in length of days? Why do these families--many of whom argues on Christian legal grounds for more and more care to keep the child alive, not value the next stage of life, the one after death?
4
The Julie Belshe case hits home with me. She apparently spent years extracting her parents from the talons of the caregiver, but as one who has negotiated the care of my elderly parents I wonder where Julie was when the caregiver began grasping with those talons. It’s not that easy to gain legal control over the lives of elderly people. I’m sure there are cases where it happens but Ross appears to believe that with less government supervision these cases would be fewer.
Furthermore, it’s the social safety net that supports the agencies like Adult Protective Services who would assist Julie in her quest. The very safety net conservatives want to dismantle.
8
No matter how you decide - patient's rights should trump any other rights. That is what the judgement was in Alfie Evans' case.
Parents, children, relatives all have emotional baggage that blinds them from seeing patient's best interests.
8
What breathtaking, rank hypocrisy from the pen of a hard right Republican apologist whose party's avowed ideology is to not only to deprive the citizenry of affordable health care, which would help pay for the enormous medical expenses associated with these agonizing treatment decisions, but also shred the social safety net, particularly Medicare and Medicaid, which would be a "backstop" to avoiding the certain parental bankruptcies following such choices. How stone deaf can you be to your own totally unselfconscious pronouncements! Amazing.
34
"What breathtaking, rank hypocrisy from the pen of a hard right Republican apologist whose party's avowed ideology is to not only to deprive the citizenry of affordable health care..."
There's enough hypocrisy on both sides to choke a whale. The left wants the government to stay out of the womb but has no problem with government keeping parents from taking their child out of the country for medical care because only government knows what's best.
3
hm 1342
How would you like the govt to permit parents to take their child out of the country to submit her to Female Genital Mutilation? Look it up, in case you don't know what that can entail.
And the child is a conscious, sensate being vulnerable to suffering, not a pre-humanoid growth inside of & living off the pregnant woman's vulnerable, sensate body, as a fetus is.
Those who see no difference are not judging on the basis of empathy, but of identity, status & ownership.
Your smarmy columns are typical of right wing (not conservative however) tactics. Find something people can agree on and then quietly shift the blame for it onto, for example, “sexual individualism” as the cause of family breakdown, which is so far from a core cause of our American society’s ills as to be laughable - if it did not reveal your core sadness of spirit. I am sorry for your suffering but could you try and refrain from spreading onto the rest of us?
18
I am a Catholic. And a taxpayer. I have no problems with privately funded caregiving that has no particular end or goal. If someone has deep pockets or access to private funding then they have options that others don’t. This is the way the world works. I accept this.
Knowing what to do and making agonizing, life altering decisions for others is not easy. But it’s part of being human. I may make different decisions than you. There are no demons.
We do need some norms regarding what constitutes life. These norms are not cut in stone. And they evolve with advances in medical care which make the decisions more difficult.
We are human. We love and fail and let go, imperfectly.
5
I agree with the assertion that the family needs to have the primary say in these matters, but as long as we cling to the myth that terminally ill patients of any age or people in persistent vegetative states can always beat their conditions with the "correct" medical intervention, putting "love" ahead of evidence-based medicine will lead to needless suffering, unresolvable grief, and ethical nightmares for the families of dying people. This is a death-denying culture, raised on the Myth of Progress and a belief that all illness can be cured and all lives can be saved. We do better to concentrate on quality of life rather than quantity, on living with the reality of our mortality, and on listening to the bodies of dying people rather than the voices of political or religious voices that shout down good medicine and common sense.
14
"Although in the case of Evans, their expertise was undercut by the boy’s refusal to swiftly die, as predicted, when his breathing apparatus was removed; he lived for five days before expiring."
This statement makes it clear that you never actually read the court documents on young Alfie's state. No medical professional was shocked by the fact that he didn't immediately die. It was stated by several medical experts in testimony that they could not say if he would die within minutes or days. The facts that they were underscoring was the that he was suffering multiple uncontrolled seizures a day, there was no treatment available or diagnosis, and there was nothing they could do to stop the continuing damage to what was left of his brain, so it was best to remove the machines and artificial interventions so allow nature to take it's course instead of forcing him to endure more seizures. That's what palliative care is. Once the machines were off the parents got 5 beautiful days of holding and cuddling their precious son, sleeping with him, comforting him, LOVING him in ways that were not possible with the machines keeping him bound to a bed and cords and tubes.
No one wants to watch their child die, but would you rather spend months having to stay to the side never being able to hold your child again or would you rather kiss and cuddle them as they slipped on peacefully when their time came?
28
Thank you for this beautiful and evidence-based comment.
9
I hope that those demonstrating and praying for Alfie Evans will spare some compassion for other parents who come to America to save their children's lives. That these parents come from Central America does not make their lives or those of their children less valuable.
For a tiny fraction of the money used to keep beating the heart of a brain-dead child, possible for no money at all, we can let refugee families enter this country and stay here. If you would argue for sparing the life of Alfie Evans, I would ask that you spare the lives of those fleeing from gang violence or the war in Syria.
As you might put it in a different context, don't let government regulations block their free movement when lives are at stake.
19
As always, I enjoy reading the rebuttals to Douthat’s column in the comments as much or more than the column itself. I still enjoy reading it to get the conservative point of view without having to watch Faux News, however.
4
Pope Francis even voiced his opinion on the Alfie Evans case. He wanted the child to be brought to Italy to be admitted to a children's hospital for further evaluation and treatment. They may have been able to provide a life-saving treatment if only the English hospital had given the little boy this chance.
It is outrageous that the hospital's rights trumps the rights and wishes of the Evans' family. Is this what socialized medicine looks like? If it is, I hope it never comes to America. This is absolutely disgusting that this boy was denied treatment at no cost to England. Shame on them.
4
I'm afraid your conclusions are based on some inaccuracies in what the facts are.
"They may have been able to provide a life-saving treatment"
Sadly, the child had irreversible brain loss and damage.
"the hospital's rights trumps the rights and wishes of the Evans' family"
The legal standard to which the courts must (and did) adhere is the best interests of the child.
"Is this what socialized medicine looks like?"
This has nothing to do with who is paying. The legal standard used by the courts applies whether treatment is public or private.
I live in the UK and have experienced the socialised medicine provided by the NHS. Alfie Evans spent a year at Alder Hey hospital at no cost to his parents, who are not affluent people. The principle that health care should be available to all regardless of means is the mark of a civilized society.
9
Please. Check your facts. The Italian hospital was offering exactly what had been available in Britain: continued life support. In other words, hooking Alfie up to machines that would maintain basic bodily functions. Bodily functions that Alfie obvious could not sustain on his own. They were not offering any treatment to alleviate or improve his condition, because those treatments don't exist. Alfie was well treated by Britain's socialized medicine. He was on life support, in a semi-vegetative state, for almost a year and a half. How long should we chain people to machines before we admit that death is inevitable?
11
WPLMMT: If children/people can not have access to affordable health care due to minor infections that if treated on time could save them, then give me socialized medicine any day. Medicare for All!
4
Not to worry, soon we'll have AI that can decide all these things, and then the problems will be solved permanently, and our digitized utopia will soon be upon us.
3
I just want to understand better why most people and much of the medical establishment have turned the act of dying into something shame-based: to be feared and avoided. There is a vast difference between proactively killing off the sick/disabled/aging versus mobilizing every available resource to maintain the beating of a heart with no other indicia of live/consciousness. We each need to confront the limits of our humanity. We need to make peace with not knowing what the afterlife holds. Religion used to be good at that but no longer. Too political. Now the conversation has to be lead by people of good faith across all institutions. This conversation also needs to confront what it looks like for society to be passively encouraging suicide by the forgotten man/women. We are all hypocrites.
7
Patricia: You contradicted yourself in one paragraph. Either you are capable of accepting death as a part of life without holding onto quantity of days but of quality of life, or you are blaming society by "passively encouraging suicide by the forgotten man/women". Whose the hypocrite? Am I? Are you?
Since Ross is married, he can't become the priest he wishes to be, so he becomes the moral scold who does the bidding of the Catholic Church in his columns.
When I used to visit my father in a nursing home, his roommate was a younger man who had an unfortunate motorcycle accident THIRTEEN YEARS EARLIER and he was tube fed- completely reactionless, unmoving- eyes staring like a doll on a shelf- and it never ever changed. I can only imagine him screaming inside to let him go.
22
Mr. Douthat neglects to mention the fact that Ms. McMath’s continued ventilatory and feeding support, enormously expensive, is paid for by Medicaid and the Children’s Health Insurance Program. Of course, this in itself says nothing about the ethical situation surrounding her, but it is ironic coming from a member of the Right, who would love to slash Medicaid with block grants and say that we don’t have any money (after copious tax cuts) to take care of people who won’t lift a finger to help themselves (Senator Orrin Hatch referring to CHIP). For Mr. Douthat and Mr. Hatch, who obviously have never taken care of a patient, I assure you that Ms. McMath and Mr. Evans cannot lift a finger, not because they are lazy and living off the dole, but because they literally cannot move. This hypocrisy on the Right’s part know no bounds.
23
Shayan. I bet that if Douthat had his druthers, he'd cut off a lot of poor people's treatments for chronic diseases & pain in order to finance lifelong life-support for the completely & hopelessly unconscious -- no matter how much they suffered.
Someone once said that he heard Mother Teresa refusing heavy-duty pain meds to agonized patients because "pain means Jesus is kissing you." Hope it wasn't true, but I can't help hearing echoes of this sort of traditional Catholic suffering-doesn't-matter behind this article.
5
This is another sad case where Ross and the right-to-lifers are completely missing the point. It is almost exactly like the Terry Schiavo case.
Let's go back to that one, specifically Bill Frist, the Senate majority leader and a heart surgeon, claimed ... without ever examining Ms. Schiavo ... she was "not somebody in persistent vegetative state."
At the time the physicians responsible for her care knew, from CT and NMR imaging, that she literally had no upper brain left; she had a brain cavity filled with mushy fluid.
She was brain dead, with some brain-stem responses left, and a beating heart. But anyone seeing those scans knew she was dead. The diagnostic imaging could not be revealed due to patient privacy concerns; but her relatives who were trying to keep her "alive" did know, and refused to accept it.
Afterwards there was an autopsy, it confirmed the reality. Frist appeared on three network TV shows, agreed with the autopsy conclusion and then bizarrely claimed "I never, never, on the floor of the Senate, made a diagnosis, nor would I ever do that," he told NBC's "Today" show.
Poor Alfie is another of these sad cases. The Mirror (UK newspaper) reported that "The most recent scan referred to in court showed that only around 30 per cent of the white matter, “or perhaps less”, remained in Alfie’s brain."
Ross and all of the folks yammering like him are cruel fools like Frist, playing the "experts know nothing" game.
22
Often I don't agree with you, but, from my vantage as a retired physician, you got it right.
5
The value of reading any Douthat piece is in direct proportion to Douthat's hypocrisy du jour.
This piece is one of Douthat's most readable.
6
Very simply.
Parents don’t get to rule over the rest of society in a perceived benefit (as the parent sees it) for their child.
People in the medical profession are not slaves to the parents whims, however well meaning.
Further, the doctors and nurses are also acting, as they see for the best, under their own moral lights and professional training. They operate within what is expected by regulation and the social norms that regulate their profession. The desires of the parents are included in this to a point, but they are not dictatorial over all other interests.
Further, it should probably be assumed, like with the parents, that baring some recognized malfeasance, they are not trying to do harm.That even if you disagree with their conclusions, the people in the medical profession are acting in good faith.
I hope that the next time Mr Douthat needs the help of the people in the medical professions, he realizes that these people are not the devils he makes them out to be.
Otherwise, he should depend on his faith, and forgo their care.
15
Stalin would agree with you. The U.S Constitution and the rights guaranteed under the due process clauses, not so much. Neither doctors nor the "state" enjoy such power or authority as you proclaim.
2
With all due respect, it is not that simple.
Medical professionals should not be slave to parent's whims; they can always refuse to provide treatment which they believe to be ill advised. But that is not the same as preventing parents from seeking and receiving medical care for their child from other medical professionals, who are presumably as able and well meaning as the British doctors and bureaucrats.
2
How is it our, or any so called civilized society, finds more than enough money to make weapons meant only to kill yet cannot find enough cash to preserve life?
We labor under a very sick, to the point of deranged, political leadership.
Our political leaders and those who support them could easily fill the pages of the most demented scripts ever penned.
5
Ian MacFarlane: And yet, do we preserve "life" to the both that people remain skeletal and in vegetative states until "life" is a mockery? I don't want warfare either but I would prefer Medicare for All so that all that stand a chance of quality of life have access to affordable healthcare.
3
Religious beliefs aside, has this writer ever heard the phrase "quality of life?" Which is better - quality or quantity? I am certain that there are many of us (myself included) who have a "living will" because we care more about quality than quantity. Not to mention the toll it takes on relatives who have a loved one whose life is being supported by machines.
6
Enough of this talk of "quality of life." Almost always, it's one person deciding that ANOTHER person doesn't have enough of it.
Susan, if you want to have a living will, then fine, but you do NOT get to make such a decision for anybody else.
2
Wow! Guess I hit a nerve. That said - one person DOES NOT have the right to tell that other person not to "pull the plug." That is now why lawyers have to be dragged into the decision.
1
Better it be lawyers and bureaucrats than the child's parents? When other qualified doctors and medical professionals were prepared to treat the child?
Maybe it was the best decision for the child, but I am not sure that I have so much faith in our government's wisdom and compassion.
1
I’m bothered by this essay’s assumption that experimental treatment would have been innately virtuous for Alfie Evans. A similar proposal emerged for Charlie Gard in which a researcher with a grant publicly stated that there was a small some chance that some muscle function could result from treatment. Perhaps scientific knowledge might have been advanced, but what about the patient’s quality of life. That is exactly the issue addressed by the Nuremberg Code in the wake of human experimentation by Nazi scientists.
Everything in a technological society is more complex than before people developed the ability to artificially support life, a relatively recent development. The ethics of what can or should be considered a patient’s “best interest” is a big challenge for twenty one year old parents, especially when submerged in an emotionally laden situation. We should also keep in mind that our human brains are not fully developed until the mid-twenties.
While Alfie survived longer than expected, we should ask if experimental treatment would have changed the course and quality of his life? If not, would he have faded out of the news to the anonymous life of a test specimen? Who then would be his voice?
I share much of Douthat’s affirmation and defense of life, but his perspective is incomplete by presuming that every life benefits by its preservation and that families are always best prepared to make such decisions.
40
More important than so-called "quality of life" is the VALUE of someone's life.
3
And who decides their "value?" You?
5
Also, the column presumes that the "family" is a cohesive unit with the patient's best interests in mind and heart. Especially in the case of the elderly, I have seen first hand that when the life of an aged, brain impaired patient is at issue, the third wife (for example) may completely disagree with the children of the first and second wives and no coherent viewpoint can be expressed to the medical professionals. The patient, who may have no meaningful "quality of life" remaining, thus becomes the unknowing pawn in a power struggle between parties the professionals have no means of reconciling.
1
The medical expertise was not undercut when the baby did not die instantly but five days later.
If there ever is a time when the saying in the Lord's prayer " Thy will be done" applies, this is it.
To insist, to keep a helpless suffering baby on life support, just because medicine makes it possible is to reduce the suffering, helpless child to no more than a vegetable.
It up to us for us to have mercy and let the Lord's will be done.
We do, should have, ethics and morals, it is what makes us human, to be a Mensch.
9
I’ve scanned the comment and not found mention of anyone’s having read the New Yorker articles cited....which I have. They describe a serious US public policy problem, regardless of whatever happen to Alfie in the UK. Ranting about the one percent and the failure of capitalism isn’t going to resolve the underlying problem described by the articles: non-responsive or criminal bureaucrats acting unethically, and often illegally, under cover of a government that has become muscle-bound by voluminous regulation.
5
JPE in Maine,
I read the New Yorker article cited about the elderly in Nevada. Only someone who does not expect to get old - and they say that one's old age is an unbelievable prospect until one reaches 75 - would find it anything but horrific.
1
I read the New Yorker piece also. We shouldn’t talk about elderly people who are at the end of a good life in the same context as infants whose only hope is for a brief existence of suffering. Keep in mind, in the New Yorker article, it was corrupt “caretakers” who had a pecuniary interest in keeping their wards breathing, no matter what the consequences.
2
JPE: Then call Scott Pruitt as he will rule by princeship but will indeed wipe out ALL government regulations, many meant for our "quality of life".
"stripping parents who were not unfit of their ability to act as parents". But what mother or father can possibly decide, and give the command to 'stop life support'. And if they do - how can they not be tormented for the rest of their lives? 'Not only did I fail to stop him being attacked by a terminal condition - I decided to terminate my son's life.'
Better to allow the parent to say 'I did everything I could, and more, to keep him alive - it was the judge who made the decision'. Perhaps a lifetime of anger at the system, and the experts - but not at yourself.
2
Indeed, the judges did Alfie's parents a big favor by let the judge be the one to "blame." Kudos for the judge to take on this tragic burden.
4
crosem: I would hope after the fog of grief has finally drifted away, that loving parents won't blame anyone but feel blessed that they had a chance to get to know their child briefly but could not withstand the suffering their child was enduring.
2
Apparently unbeknown to you, many parents have made the decision to remove their children from life support. Their decisions are made in private, generally after discussion with health care providers, and thankfully without the ballyhoo that accompanies the cases cited by Douthat. I cannot say whether or not the parents are wracked by guilt for the rest of their lives - but I would not be so arrogant as to think that parents making such a decision must be wracked by guilt.
Cherry picking cases does nothing to help discussion of what does happen in the USA. Try Sun Hudson, Israel Stinton, or any number of cases where a child or adult had been pulled off life support in the US due to a physician consensus of braindead, against parent/guardian wishes. The conservative stance that Alfie's case is unique to the UK is a blatant lie. This is an ethical issue that occurs regardless of the type of healthcare plan. The difference in the UK is that they heavily emphasize the rights of the patient over the rights of the parents to selfishly continue futile care. Every conservative article on the Alfie case emphasizes the effects of such decisions on the parent or caregiver, and none emphasize the effects on such decisions on the MOST important person, the patient. As a nurse who has taken care of chronic ventilator patients whose caregivers won't let go, yes, these patients can and do suffer needlessly.
16
Because of the advancing of medical technology, these parents were given a terrible choice which was to fight for the life of their child who could only be kept alive by technology or let the child die. The medical system of the UK made the choice for them and by doing this gave one of the greatest gifts anyone can give to parents of a dying child which is to take a lifetime of pain and guilt away from the parents and place it on the government. Forgive what may seem like callousness to some, but I belong to that small club of parents that brought a child into this world that would have been too sick to survive a few decades ago. She eventually died, and I did not have to live with the burden of having to make that choice between life and death. Let the parents heal as best as they can. And, if you truly care about the life of the most vulnerable like Alfie and the elderly left alone to die, then please look to how we do not give decent medical care to our own members of our American society.
6
As long as we have a GOP Congress (or substantial members thereof) we will have rationed health care according to whether you "deserve" health care or not. Clearly the impetus this past year by the GOP was to cast millions out of health care affordability.
For every middle class and poor family, this is a direct equation between caring for a sick individual or paying rent, buying food, education for the rest of the family.
As long as the focus of the GOP as the party of (now sarcastically stated) family values remains ONLY on the 9 month in-utero period and ignores the rest of life for that child, his parents and siblings....the GOP has nothing to add to the discussion.
You going out to fight for prenatal care, postnatal care, child care, handicapped and elderly care.....or continue the party line that the wealthy and corporations are the only ones deserving of "entitlements?"
Even a priest who prayed in Congress to consider the poor along with the wealthy and the inequality of our national life was fired by the GOP!
6
“Indefinitely on a feeding tube?” Okay, who pays for this? Upwards of $1M a year in all likelihood. Would these parents be so quick if they had to pay? Denial of death is peculiarly American. As tens of millions of selfish Baby Boomers pass 65, watch the medical system keep them alive with ever more expensive interventions and drugs. Conservatives in particular seem particularly cowardly about the inevitable. Odd, considering conservatives also profess their belief in god. Just in no hurry to meet her. Disclaimer: I am 74, have advanced prostate cancer, and have signed a living will stipulating no life extending care at the end.
4
The "selfish baby boomer" thing is really getting tiresome. My eternal apologies for being born in 1954.
4
I am a liberal and I support the rights guaranteed by the U.S. Constitution. While I applaud your decision, having the same "physician directive" in place, I carefully stand watch for the due process clauses.
1
I agree with Ross on the supremacy of the family's decisions. But for UK citizens to insist on fellow taxpayers paying for a patient's transport overseas, or his care there, is not fair.
2
One of the dismaying aspects of this desperately sad story was how the suffering of a dying child was hi-jacked for publicity purposes. This was not a case of family versus the "medical establishment". The English court's and the hospital's only concern was the child. The Guardian article of 24th April gives useful background.
https://www.theguardian.com/uk-news/2018/apr/24/alfie-evans-parents-lose...
5
So, keeping children alive or not is a family decision.
But abortion is a state decision.
Nice going, Douthat.
9
Both this hospital decision and the decision to abort one's own child entail deciding that another human being should not get to live.
1
bmmg I didn't realize that allowing a child with a rapidly deteriorating degenerative illness that's body was already in the process of dying to be removed from machines protracting that death was the same as deciding that they shouldn't get to live. God and nature had decided that it was little Alfie's time to go. Removing the human implemented artificial means prolonging that process only allowed the inevitable to occur.
I am a devout Catholic and a neurologist. I enjoyed this column. There are a few larger issues to point out:
1) People who favor maintaining the lives of the severely injured need to be adamant in their support of the social safety net. No family or community, no matter how cohesive and loyal, is prepared to shoulder the costs of modern medical care without comprehensive social support. To do otherwise is to be a contemptible hypocrite.
2) There needs to be more education of the public about different states of neurologic injury. Brain death is not the same thing as a persistent vegetative state or a minimally conscious state. Also, a lot of phenomena can look like responsiveness but are not.
3) For Catholics in particular, there is actually a lot of guidance offered on these questions, but it's also easy to get confused without a certain amount of background reading. There are a lot of bad arguments whose errors are hidden with woolly thinking and imprecise speech.
9
It occurs to me that the word "vegetative," so often used to describe brain dead or semi-brain dead individuals, is inaccurate. Vegetables can survive on their own. People who can only survive hooked up to machines don't have a vegetative existence; It's much worse than that; they are science experiments existing for the benefit of delusional family members. Who pays? This essay carefully avoids that question.
5
This column is a mishmash of pet conservative theories lacking in rational intellectual underpinnings.
What exactly do you mean by "post-familialism" and why have you conflated it with the other issues you raise in this column? I am into the 5th decade of my life and all around me I see adults working hard to create and sustain family units, many of which include children. Regardless of the sexual orientation of such adults, or the marital status of such adults, there is a strong commitment to the families these adults have created. I never understand why those families aren't accorded respect from the "pro-family" crowd. If you were willing to extend your concept of "family", you would see that the family, as a concept, is indeed alive and well in 21st century America, pressures and hair-raising headlines notwithstanding.
Additionally, what are the connections among "post-familialism", "sexual individualism" and "thinning family trees” and what does any of that have to do with the medical care and treatment of individuals who persist in a chronic vegetative state?
Finally, as others have noted, why have you failed to address the proverbial elephant in the room--the cost of care implicated by the cases you cite?
No one is free to make any decision they wish when they are asking others to pay the cost. Isn't that, in many respects, a "conservative" concept?
8
So Mr. Douthat you have no problem will Ella Grace Foster, a 2 year old, who died from what started as a bad cold but who's parents believed that only God mattered and took her to a faith healer. Do you believe that the Turpins, accused of holding their 13 children hostage are being denied their right to defy concensus?
If these cases were yes or no, then it would be easy. It is becuase these desisions are so hard and so important, that they cause so much angst. In the Foster case the state acted too late, defered too much (unless you believe that a parent has the right let a child die by witholding medical care).
5
Foster's parents caused her death. Evans's parents wanted desperately for him to live. Therein lies the difference.
1
Who will pay the annual millions of dollars of medical bills? When we are presented with these astronomical bills, we all know which way we'll go.
I just spent 45 days in the hospital (with a good chance for survival) after which I asked my doctor what my medical bill would be like if I had not had insurance. His answer: somewhere around $1 to 1.4 million. Multiply that by 12 months and you'll end up with an annual bill that 99.9% of our population could ever afford.
Mr. Douthat, are you ready to get your checkbook out? Are you ready to declare personal bankruptcy for all the Alfie's in the world? The (religious) conservatives who won't allow us to have universal health care, have already clearly stated their opinion: it's too costly so just let Alfie die at home without ever receiving any healthcare in the first place. Put your money where your mouth is, Mr. Douthat; you can't have it both ways.
8
Stalin was reputed to have said that "a single death is a tragedy, a million deaths is a statistic."
Herein lies the attention deficit disorder of "conservatives" like Ross Douthat. While they support policies that prioritize the redirection of resources (Medicare, Medicaid) to the .1% that don't need them, they wax poetic about the sad individual case that is a tragic outlier.
Is it because writing about the mass outcomes of "conservative" policies that dreadfully hurt, sometimes kill, and too often impoverish millions isn't a compelling personalized narrative that feeds the emotional inflammation that distorts our politics?
5
How good of you to reference Stalin. How about our own Constitution. Have you ever heard of due process? By your reasoning we should abandon it for some political notion of the "greater good." No thanks. Stalin would have agreed with you.
1
This you bring up about a humane society. You Conservatives have again and again fought against humane programs in the US that could help millions, such as Obamacare, etc. Here Ross chooses some rare times where death is a given in God’s world and decides we need a more humane world. It just may be humane to let these individuals go on to heaven. Why would we want to keep them from the afterlife, unless Ross doesn’t really believe in it. No Conservative Republican should be lecturing the rest of us on being humane. This article is just more Conservative subterfuge. No Ross a few heartbreaking stories like this doesn’t make one humane in anyone’s eyes and certainly not God’s.
3
I believe that right wingers played doctor in the Terri Schiavo case too. If you believed them, that poor woman was up walking the halls and chatting with the nurses. Oops, autopsy showed that was impossible.
Real doctors don't rely on invisible sky people to make decisions. If the family can afford the millions of dollars, or pounds, for continuing care, fine. If not, I would much rather spend my tax money on help for children who are the future of our society.
4
No, Terri wasn't walking the halls or chatting with the doctors. What you fail to realize is that she was STILL a human being deserving of life, and that her husband failed to provide any actual evidence that she wanted to die.
The case of Alfie Evans is further complicated by the fact that the child's death may very likely be tied to vaccine injury. This is not a subject or direction that the UK want to see further explored. Once Government is in the role of God, we are all doomed in any event.
2
Tough decisions, indeed.
And who makes these decisions? A panel or committee of usually anonymous individuals.
Death panels are already at work in the UK, and appear to be well on their way to being established in the US.
Many commenters seem to feel it's all right for an anonymous panel to make such decisions for others; however, how will you feel when the decision affects your parent, or your spouse, or your child? Or you?
1
If you were to read the backstory, you would immediately know that Alfie's medical staff had been involved 24/7 for his entire life. To say that they (anonymous strangers?) didn't care about Alfie's wellbeing is preposterous and insulting. You also do the many judges involved a serious injustice: they too care and have probably spent countless wakeful hours trying to find the right decision; they did not make these decisions in a split second.
The death panels you refer to definitely exist already in the US: they are the heartless religious conservatives in Congress who just want to let people die if they can't afford health insurance while simultaneously lining their avaricious pockets with tax cuts. Had Alfie been a kid from the projects, he'd be long dead today without ever having had an MRI or seen a doctor. Death panels indeed.
7
Please don't count me among "liberals" like you. Who is the "heartless" one? I was a kid from the projects many years ago. I still would not want government deciding my fate in this manner. Let's not add to the death panel mentality and rush to eviscerate due process.
If only the religious conservatives had such passion for the many amongst us without adequate health care insurance.
9
Death is a clinical, cultural and legal construct. Discord amongst these engenders inevitable moral distress. Clinical views are evolving fast with our improving ability to conceptualize brain function in the absence of manifest consciousness. It isn't surprising that traditional distinctions between life and death are lagging behind. Those of us in the clinical disciplines must be respectful and - within reason - deferential to prevailing norms. At the same time we must keep the public and our law makers aware of what can be known and what could be done in order to minimize the ambient moral distress.
1
I truly wish that all families were wise enough, kind enough, rational enough and realistic enough to always make the best decisions for family members, whether those decision are medical, educational or social. And in general we let parents of minors make decisions on the basis that they are. It's only when parents' decisions appear to be actively harmful that the courts are asked to step in.
To pretend these situations don't exist out of an irrational reverence for families, all families, regardless of the flaws of the individuals comprising them is to set a dangerous ideology over the reality of children's needs.
2
Strange that some commenters here declare that this is all down to wicked "socialist" medicine. Did they sleep through the Terri Schiavo case -- where US courts likewise overruled the parents' desire to keep their child alive? And such decisions are regularly handed down by US courts:
"Steffen Rivenburg Jr. was removed from life support Thursday afternoon. The child’s biological parents filed court orders to keep their son on life support, but a Montgomery County judge denied appeals, deciding the doctors know what’s best.”
http://myfox8.com/2017/06/09/baby-dies-after-judge-denies-appeal-to-keep...
“Two weeks ago, the final chapter in Israel Stinson’s young life was closed when a Los Angeles Superior Court judge ruled that the child was brain-dead and could be permanently removed from a ventilator.”
http://www.miamiherald.com/news/nation-world/national/article101240392.html
“In just the last 18 months, Boston Children’s Hospital has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.”
https://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6...
6
Ross you lie at the end about parents and a dying child. You yourself point out the girl in New Jersey is not dying. She is in a perpetual coma, or is merely vegetative. I’d say she is condemned to a perpetual coma or being vegetative. Rather like the cocooned life forms in the movie the matrix. I find it gross that your ideological prejudice condemns that soul to such a state.
5
Wih all the craziness coming from the right I look forward to Ross's columns even if disagree with him. But what is this? No comment about the baffling Fox diatribe, or how the GOP is flailing about? Are you trying to change the subject? Why isn't the right addressing the elephant in the room, pun intended.
2
When it's time to "get off the bus"...GET OFF THE BUS...period! When Doubtthat's god fails to provide a merciful exit, expert opinion must be brought to bear to end needless suffering. This piece is just another attack on science (medicine) by an admitted Christ-yelper...it's magical thinking in the desperate effort to create another medical "miracle" that would "prove the existence of a "loving" invisible grandfather in the sky.
6
Douthat isn't making a right-to-life case or imposing a religious view here. He is arguing only for the right of a parent to make the most urgent decisions about the care of a child. Is that right absolute? Of course not. But the exceptions should be rare: instances of abuse or clear felonious self-interest, for example. Alfie Evans' parents don't fit that description. Should the society at large shoulder the burden and expense of what some might objective call futile care? Arguably not. But the Evanses had found two other nations and a well-regarded pediatric hospital willing to offer that care; and yet a British judge insisted that the child could not be provided that care. The arrogance is astonishing and repellent.
1
You missed the whole point, as you are blinded by your partisan views. Please examine the facts more closely. Your "liberal" friends like me might want you taken off life support instead.
1
Why do you want to torture these
children and their parents? Can’t
they just live their natural life spans? Why does life support mean life?
6
"the world bequeathed to us by sexual individualism and thinning family trees" ?
More accurately though would be to blame the culture of greed that seeks to maximize efficiency through the marketplace. There is nothing so cold and ugly as the decisions made by corporate bureaucrats to maximize short-term profit. They even hide behind their "prime directive" of maximizing shareholder value when criticized for their heartlessness.
Marketplace religion is the enemy, Mr. Douthat, not some imaginary sexual individualism or thinning family trees.
4
Once again I will say that although I don't always agree with Ross Douthat, in this statement he raises important issues.
2
There are far too many threads in this column. The demise of the nuclear family? Thank politicians who’se greed shoved corporations and their greed to the forefront, but remember that those politicians walked out the front door of American homes. Given the age of most of our pols, the nuclear family was intact when their moral compass was developing.
Now let’s talk about Alfie being a UK citizen. Laws there favor the rights of the child. While I grieve for his parents, I also know of no treatment on earth that can regrow brain tissue, so pragmatism in the face of reality favors the UK laws here.
The treatment of the aging here in America? Appalling. A good research project would be a walk through all the so-called “nursing” homes, who’ve proven to be nothing but abusive-care centers. I’m of the age where I’m considering what’s facing me. I don’t want to be kept alive by machines while being hurt by unqualified caregivers, but neither do I want to burden my offspring with my care should I become a drooling automaton.
We are far too attached to the emotional charge of cases like Alfie’s, while ignoring the need of little girls like Shania Davis, who died from asphyxiation while the man her mother sold her to was having sex with her. Look it up.
7
Ross, this looks like more of the ordinary conservative choking on gnats while swallowing nails. There's no weighing the issues in conflict, no recognition of competing claims. Preserving innocent life is a good; protecting family rights is a good; husbanding scarce public resources is a good; but none of these goods is sacrosanct nor unlimited.
Families who want to pray over their sick minor children instead of routine lifesaving medical intervention, lose custody of the child, though preventable deaths also occur.
You claim Jahi McMath is alive despite the judgment of the professionals trained to make that judgment, without even contesting their competency or claiming expertise in the area.
Suppose she is; even suppose she is aware, and suffering, continuously. It is as logical to claim that her mother is extending her suffering as it is to claim she has preserved her life. Jahi at least had a real life.
The infants in the publicity storm had none, nor any chance of ever interacting with their environment, never any conscious personal existence. You and yours lavish attention on these hopeless bits of incomplete protoplasm and ignore the preventable suffering of millions of poor children, whose lives could be transformed by
intervention.
7
I read the story regarding Alfie Evans in the New Yorker, and although I have a lot of empathy for this young girl and her mother struggles, there is one very large question which looms over all of these similar cases. Don't that argues that these lives should be given the equivalent stature of all human life, presuming that medical resources are infinite, in making this argument. However medical resources are finite like everything else on this planet. Ms Evans mother exhausted all of her personal finances, and moved to New Jersey, where, because of the influence of the Catholic Church, she could secure government funding to assist in the care of her daughter. It will cost millions of dollars to keep Ms Evans alive. This is money that won't be available two children in general, with regard to their treatment, research on other diseases, and to improve the lot of many other children. I know it is a difficult decision to make, but sometimes these decisions have to be made when allocating scarce resources.
4
Existing in an extended artificially maintained limbo dependent on machines is not "life." Let's pay for good basic medical care for all people, but not for maintaining vegetative states or extending suffering.
6
I'm wondering what clinical expertise this author, who clearly feels medical decision making within his grasp, possesses. As an RN I can attest that families are sometimes more interested in avoiding the unavoidable death of their family member to the detriment of the patient.
Elderly relatives living through the horrors of dementia, no longer themselves, not remembering the very people who are making life and death decisions for them are subject to torturous procedures in the name of love. Families clamor for open heart surgeries in 97 year olds, demand feeding febile mothers who choke on every bite, provide shakers full of salt to congestive heart failure patients who are drowning in their own retained fluid, worsened by the salt they sprinkle on so mama's food tastes better. Attempts to provide education regarding exactly what that added salt is doing to mama is met with hostility.
Are all families and all cases hopeless? Of course not. I see very ill people go home in stable, thriving condition regularly. But those who don't, in my experience, stand a chance suffer frequent admissions, each time weaker, only to expire in the presence of a nurse. Take your loved one home, in a familiar place, with faces they know and trust, to die in peace.
9
Technology has long since led to a blurring between "can" and "should." There are diseases and natural conditions (such as aging) that cannot be cured. Yet people can be maintained with a heartbeat for years after any meaningful existence has ceased. And too many times we insist that be done. Just because we can keep someone "alive" does not mean we should. To try to do so is the worst form of "playing God" because we are going against a natural and inevitable process out of arrogance and self-involvement (usually emotional, as opposed to materialistic).
I have been involved in many situations such as this one, and they are all heartbreaking when the child dies. But what makes my ethical core shake is when we torture a patient who has ceased (or never had) the ability to live even close to a reasonably functional life in order to satisfy the emotional need of family and friends. These decisions are terribly painful to make, even for non-family care providers. The child has to come first, and if there is no hope for life, they deserve the chance to take the natural course (with provision of comfort care as needed) without being artificially kept "alive" for the sake of someone else.
4
It been said a sign of great intelligence is having two opposing ideas in ones head. The columnist appears to to accomplish this; but the caveat should be that one should be aware of the opposing nature of the ideas. Mr. Douthat does not it seems realize the deeply contrary nature of this column and his many other missives. It renders the arguments force-less and risible.
1
My daughter is an ICU nurse in a neuro-trauma ward. Every night she goes home, she wrestles with what happened at work. She has a long commute and sometimes she shares with me on the phone what she can. It's not pretty. Joy is measured in teaspoons and anguish in buckets. I think she is becoming more and more spiritual a she is confronted daily by our fragility and our need for compassion. She understands that "pulling the plug" simply means letting someone who should have been dead by now die peacefully, without tracheal tubes, catheters and wires . But never, ever would she entertain the type of armchair discussion Ross Douthat favors in many of his columns. For her death or debilitation are her daily reality, not accessories for some clever rhetoric.
13
There are countless children in this country who have treatable conditions, but who will not receive the needed medical care because they lack insurance coverage.
Where are 'Alfie's Army' in those cases? Oh, right, they are voting for Republicans who are busy denying children (and the poor and the old) the medical coverage, and thus the medical care, they so desperately need.
The hypocrisy of this article is absolutely breathtaking.
18
For what its worth: I am infertile. My wife and I think about adoption often but I always wind up rejecting it out of terror at the prospect of being even more directly under surveillance and coercion by the system Ross describes here.
"Death panels" are clearly a fact of life (no pun intended) in the UK, and we in the US can expect to see them any day now.
Really sick kid? Pull the plug.
Old person costing too much under Medicare? Pull the plug.
And when will it come to: Taking too much and producing too little? Pull the plug.
Ask not for whom the bell tolls....
Why are families better equipped to make such choices than doctors? Some families, perhaps; but considering the incredible number of cases of neglect, abuse or sheer stupidity of parents, children or guardians, I’d rather rely on trained professionals. Should parents who believe that vaccines cause autism be allowed to infect their kids with measles? Should Christian Scientists be allowed to pray away their elderly parents’ cancer or pneumonia? It’s easy to cherry-pick sympathetic cases, even though I see no proof that the brain-dead girl is anything but brain-dead. But as a general rule, I’d trust science rather than pray for a miracle that almost never materializes.
10
The links between Ross's argument and the logic of abortion choice are striking. I also wonder about the immense casualty list (of children and others - they have families, fathers and mothers too) the US is prepared to continue to see continue as a consequence of foolish and outdated gun laws!
3
I know of no family, none, where the parents or adult children were deprived of the right to make decisions for their loved ones. If the "state" and "medical establishment" you so hate has done this, generally speaking there is a very good reason. In fact, I have heard of elder abuse by adult children, usually too overwhelmed caring for an elderly parent because of lack of funds to get help. I can not speak to the issues of the 3 minors you mention. Two of them are English, so the laws are, obviously, different. I can guarantee that if the American minor you wrote about is being kept alive using tax payer dollars, Republican so called pro life voters would be up in arms. So please stop preaching about the sanctity of "life" when you and your lot clearly have a very skewed view of what life is. Maybe if more Americans could afford to stay home and care for sick relatives, they would. That is not feasible for the vast majority of us.
5
But when a woman wants a medical procedure called an abortion, which by the way is legal, you and your cohorts want to deny her "CHOICE". You can't have it both ways, Ross.
15
Ross probably believes in “miracles” and that false belief supports his opposition to any amount of fact and expertise. We all understand the strength of emotion and familial bonds; this reality dies not inform decision, but makes objectivity unlikely.
11
Such a blind, willful column. Increasingly I see in Douthat the religious version of toxic masculinity. Only he--and his Catholic Church--know best.
These people have such extraordinary egos to think they have the right to intrude on and use these situations for their crusade. Feels good I guess, but poor Alfie Evans and his family.
14
Immediate death was NOT predicted. It was known he would live for a few days before finally succumbing. By this statement you have put a totally wrong impression of the competence of the unfortunate doctors whose lot was to care for the brain damaged child with vicious ignorant parents..
11
I agree, Ross. It's best to allow individual and families to make their own health care decisions, with minimal government inference. In cases like Alfie's, and re: abortion as another example.
4
The title use of the term "expert" suggests that the physicians involved were wrong in their assessment of the two children.
I have heard nothing to suggest that there is a therapy that could offer them meaningful mental function.
So, what evidence to you have that they were wrong in this regard?
7
We don't know nearly as much as we like to think we do. We don't know what will happen when we turn off the life support, for one thing, as both cases here showed. We don't know what the outcome of the treatments abroad might have been. The universe is unfathomably vast and the sum of our knowledge comes to a pinprick on its face but we like to claim that we know what will happen whether we keep trying or let go. This hubris would be funny if we did not want to impose it on others who believe differently, and if we did not live in the post-family world Douthat describes. We think we know life is a zero sum game and that the Alfie Evanses take more than can be justified by someone who we think will never give back. We think that death is for the best for them, and that we would choose the same for ourselves if we were them because we can't imagine their suffering. We think their faith is a pernicious foolishness and the world would be better off without it. We don't really know any of this for sure but we are sure its best that we make these hard decisions for those too weak to do so and we think we are doing it because we want what is best for everyone.
1
I am with you if you are saying that all life is precious and I would go further to say that life belongs to God. But it seems in these cases that God has called back to Himself Alfie, Jahi, Charlie and the many many like them. When, based on everything we can discern, it is not unreasonable to withdraw artificial supports for these types of cases. Families might choose to pull the plug and should not be demeaned for the decision. In a similar way the carriers, both state and private might choose to not spend money on cases with poor outcomes but instead to preserve the resource for patients who can enjoy some quality of life.
2
This essay ends with the false choice between knowledge and power one the one hand or love on the other. Compassion and honor also must be accounted for in the complex calculus of when to let go. Existence on a ventilator and nourished by a surgically inserted feeding tube is not life, it is just continuing. Love that is based on selfishness or lacking the honor to let life end as it will is no kind of love, certainly not love that is deep and abiding.
We have consensus of what death with dignity means in our country. A miracle would be to see one so afflicted rise up from their bed and walk, talk and smile. Artificially prolonged existence in the presence of overwhelming evidence of a permanent vegetative state is just cruel and unusual.
11
This opinion piece would be more useful if it noted that the law in the United Kingdom prohibits parents from demanding specific medical treatment against the decision of medical providers. Until I knew that, I didn't understand completely what was going on with all of the UK cases involving terminally ill children. UK commentators have noted that this priority for doctors' decision making applies both to private insurance and NHS patients.
5
Mr. Douthat chooses to view Alfie Evans as a glass half empty, an example of government overreach . My glass-half-full view is that the Alfie Evans case is an illustration of how precious resources (in this case, medical resources) are directed toward those who can most benefit from them and away from those who cannot further benefit from them.
Perhaps if we lived in a Panglossian world in which medical resources were infinite, we could spend enormous amounts on the few without loss to the many who just need basic care, but we don't. The fact is spending on health care is limited by those very people who decry that we should act as if the spending were infinite. We cannot have it both ways.
10
Yes Ross. Your last sentence is a beautiful summary.
Jim, Wilmette, Ill
3
Does your mythology... I'm sorry, faith... always blind you to the single -- and usually most potent -- argument against the positions you take in your columns? To you, religion is always the final arbiter, no matter what the question, and no matter who suffers because of the piously judgmental worldview that you have chosen to create from it. Religion is rarely the answer to any question except, perhaps, "What reason can I use to justify the unjustifiable?"
10
Mr. Douthat puts some of the blame on sexual individualism. Huh???? i wish that he would go into detail about that. It seems that he constantly looks for any tree to bark at that does not meet his puritanical standards.
9
None of us should go gently into that good night, we should rage, rage against the dying light. But we should, in a legal and binding way, also make our wishes known to our family- let me go or not.
A child or baby has no such luxury. That decision will only make sense with family consent and either way you will never know if the decision was the right one.
4
Jahi is dead. She is deceased by virtue of brain death, which is death. The mother is in denial of this obvious fact and has gone to great lengths to warm a corpse in her dwellings. The poor girl needs to receive an appropriate ceremony of passing and to be buried.
13
Greedy offspring should have the right to control the bodies of those who gave birth to them. Or soulless bureaucrats.
It's a brave new world, comrades!
2
Dying is part of life. Sometimes the greater love is letting a person go.
I read the story of the mother who dragged her daughter to New Jersey and I thought it could qualify as child abuse. I know how heart breaking it is to lose a child and I hate to judge a mother but I guess I am when I say that I think she did everything for herself rather than for her daughter.
And it always come down to money - the parents could never afford the expense of these extraordinary measures and even state money is not limitless ever. So how many other children who actually had a chance would benefit from the millions spent here.
9
Different societies have different views as to how and by whom these very difficult decisions should be made. In the UK, the law is that in situations like those of Alfie Evans and Charlie Gard the courts decide, and the decision is made on the basis of the best interests of the child after reviewing all the evidence. And that is what was done.
"But in each case that judgment was deployed for wicked ends, stripping parents who were not unfit of their ability to act as parents, denying them the ability to choose not only last-ditch treatments but even where and how their ailing children died."
In my opinion the real wickedness came from the Christian fundamentalists who inserted themselves into the situation for their own ideological purposes, giving the parents false hope, the "supporters" who threatened and abused the hospital staff caring for these children, and the baying mob outside outside the hospital who tried to force their way in.
https://www.theguardian.com/uk-news/2018/apr/28/call-from-god-american-p...
https://news.sky.com/story/great-ormond-street-staff-receive-death-threa...
Shame on them. They made the parents' already devastating ordeal immeasurably worse. And I say this as someone who lost a child aged 10 months from complications of open-heart surgery.
15
Members of the mob outside of the Alder Hay hospital threatened to burn the hospital down and threatened the lives of the hospital's medical personnel. See Alfie Evans: police issue warning over online abuse of medical staff
https://www.theguardian.com/uk-news/2018/apr/25/alfie-evans-struggling-a...
If people in the UK want to give family members more control over the treatment of their terminally ill relatives, they need to change the law which provides that family members cannot demand a treatment over medical opposition. See https://wapo.st/2I34AeO
Unless Douthat has inside information from secret sources, Jahi McMath remains clinically dead. That's a medical term referring to the death of the higher brain. The brain stem is what controls breathing, circulation, etc, so it's no surprise that parts of her body are still alive. Alfie Evan's brain had been destroyed and replaced by water and cerebrospinal-spinal fluid. He had long since lost the ability to see or hear. He still had a brain stem and the doctors knew it might keep him alive for a few days, but it was beginning to fail too. And unlike Jahi, the rest of his body was failing and the child was in considerable pain.
Normally I would strongly defend the right of parents to keep trying to save their child, even in cases where the child was brain-dead. But as the doctors filed in legal papers for months, Alfie was in extreme pain (and no, your body does not need a higher brain to feel pain). So I do not know enough to know what was right for the British courts to do. Mr. Douthat obviously knows far less, but is willing to promote ignorance.
13
The family must also have the choice not to have a child.
There was once a state that coerced and forced women to bear more children...for the good of the fatherland.
It did not end well.
3
Remember when the Left lambasted and ridiculed Republicans during the single payer system debates for claiming single payer inserts a triage system the Republicans described as "death panels?" Ahem?
1
The "death panels" argument was a gross distortion of what the proposed law actually said: that Medicare would cover the cost of appointments for patients to discuss with their doctors end-of-life care including living wills and health care directives. In other words, to help people prepare for situations like these so there would be no ambiguity in how to proceed.
11
The UK law which prohibits families of patients from demanding specific medical treatments over medical opposition applies to both NHS and private insurance patients in the UK. See Alfie Evans, the sick British toddler at the center of a fierce legal battle, has died
https://wapo.st/2I34AeO
1
Ross Douthat and Newt Gingrich have recently written columns about Alfie Evans as part of an effort to to discredit the idea of Medicare for All that will be a centerpiece of the Democrats in the 2018 and 2020 elections. They will engage in what the British call "shroud-waving" in which a single identifiable death is used to block efforts at reducing the tens of thousands of statistical deaths that happen in due to inadequate preventive and primary medical care, bureaucratic waste to the bewildering complexity of our health system and environmental causes such as unrestricted ownership of guns, inadequate access to fresh fruit and vegetables in "food deserts" and a score of other issues.
18
One Alfie is a tragedy, millions of mothers and children denied healthcare is a statistic, to paraphrase Stalin.
When is this going to stop? Cherry pick one or two tragedies to exploit, used to display your fake and hypocritical concern for the babies.
I love how I love Him (Jesus), to paraphrase the Simpsons.
This kind of article, this kind of fake religious piety is infuriating, immoral. Ok, we get it, you're a good Catholic, now go and mind your own business.
19
The catechism of the Catholic church does not require the use of Extraordinary Measures to do a natural death. For a Catholic come up the issue is a lot more complex than this article presents it to be.
7
Ghouls like Ross Douthat, Brett Stephens, and David Brooks are given regular opportunities in these pages to hold forth on the virtues of the free market and to wag their fingers at the supposed moral failings of everybody else while there is not a single honest-to-god socialist with a regular column in this or any other major newspaper. This should tell us everything we need to know about the national “newspaper of record.”
8
Rachel Aviv's New Yorker article about the eldercare guardian revealed a predator who knew how to work the legal system. Systems designed to protect children and adults who cannot forcefully advocate for themselves generate revenue and employ attorneys, physicians, social workers and religious counselors who have vested interests in these systems. Public policy affects private lives. Here's my story; I am a college- night- school educated baby boomer who has, within the past decade, come to learn that I've lived my life missing a snippet of my brain; an MRI scan following a later- in-life accident revealed the damage. I've experienced life-long physical problems and "free floating," often intense anxiety. I struggled for decades to act "better" and to better myself without conscious awareness of severe and multiple childhood trauma inflicted on me, by the way, amid religious culture. Brain damage inhibits ongoing cognition and memory, which impacts ongoing comprehension. Luckily, my natural inclinations led me to take up x-country skiing and inline skating which likely stimulated the neurogenesis that eventually led to my memory recovery. Neurogenesis and neuroplasticity occur best amid good diet and freely chosen physical activity in environments not available to many brain injury patients. Brain injury, quality of life and healing potential exist along continuums spanning lifetimes. One size does not fit all. Sad.
4
Think of what it costs to keep a child like Jahi McMath alive. Now think of our tax cuts. Maybe this is what Father Conway was praying about before America’s Number One ‘Cafeteria Catholic’ Paul Ryan booted him out.
22
"were not unfit of their ability to act as parents" : What does this mean? Their proposed actions would have caused avoidable severe harm to a child without mental capacity. Bizarre that Americans care about the "rights" of foetuses but not the rights of children.
7
It means that the parents were seen as rational, informed and motivated (by their love of their child) to act in the child's best interest.
Maybe they were right, maybe not, but they were not incompetent or malevolent.
Hence the debate, cost aside, of who deserves to make the decision about when and how a child dies: the parents or the state?
1
I do respect Mr. Douthat’s reasoned positions even when I don’t agree (which is often).
For this column: I just want to ask if he has visited Jahiri? Has he witnessed the signs of consciousness? As a physician I have often seen distressed families imbue random movements with hope of recovery in the severely brain injured. I’ve also seen physicians inappropriately dismiss intentional movements elicited by loved ones in similar circumstances as random.
But unfortunately brain dead when rigorously determined is dead, no matter how much we wish otherwise. No air quotes are needed, Mr. Douthat.
7
If you so morally concerned about these cases, what about uninsured and under insured that your party refuses to acknowledge have any basic right to health care. All out war on Roe v. Wade, pieces about the absolute fringes of medical care, but crickets when it comes to how morally reprehensible the republicans are towards health care. Thank goodness I have good insurance because your morality makes me sick!
14
The removal of paid care in this case may make full medical and economic sense, although as Ross points out, little Alfie not dying for 5 days puts a bit of a crimp in the expert opinions. The real issue is how comfortable any American is, right or left, with the slippery slope we are on as well - the euthanasia programs in Europe have now spread to things such as depression - are we soon to follow?
1
Still, little Alfie did die in 5 days. Natural life is not an on and off proposition. Should Alfie have been artificially kept alive for years because his brain and bodily function was such that, holistically, his body didn't die naturally automatically? As for depression, many people suffer emotionally and physically in a circularly perpetuating cycle. I suspect that many people who have considered suicide want their suffering to cease and if that suffering ceased, they wouldn't want to die. No one wants to suffer. Suffering does not ennoble a person. Our culture, including and especially moralistic and religious culture suffers a lack of compassion.
3
" But in each case that judgment was deployed for wicked ends, stripping parents who were not unfit of their ability to act as parents, denying them the ability to choose not only last-ditch treatments but even where and how their ailing children died."
Do you mean that women should also have a choice when it comes to having an abortion?
9
Oh, so you support the idea that families should be able to stay together rather than be torn apart by ICE and Trump? Or does your "situational ethic" not bend that far?
9
Well, there, he said it. The reason to have children is so that you won’t be alone when you are old and dying. Douthat’s Catholic “family values” is just window dressing to prettify a deep (and selfish) human need.
5
There are always abuses in any system. The elderly are much more likely to be abused and victimized by their children or someone that they know than by the state. I don’t condone either.
Regarding parents medical treatment of their children, it cuts both ways. There have been cases where parents don’t want to provide certain medical treatments to their children based upon their religious beliefs.
Most parents are likely overcome by emotion in these situations but I would agree that great deference should be given to the parents wishes. I don’t know if a bad decision is any better or worse when made by an individual versus a governmental entity but an individual decision can be changed much more quickly.
It's disheartening to see the NY Times giving a platform to anti-expert ideology, this time around fed by Christian extremism. What the columnist calls "plausible medical arguments" is the actual consensus of the medical community regarding a comatose patient with little to no useful brain function. In times of rampant polarization and populist politics, it's horrifying to see the NY Times condoning the creeping of religious beliefs into medical decision-making.
14
Ross, you write nonsense, where is this money going to come from to keep these children alive? You write that the child was unable to breathe unaided and had minimal brain function, what is the quality of life for that child? Is his care for today and into the future going to come from your tax dollars or even our nonexistent nationalized healthcare, unlike England? You do believe in individual responsibility and certainly not the evil called socialism.
All those wonderful Christians that have too much to say about others personal decisions and quick to condemn but certainly not on their tax dollar, hypocrites, indeed.
16
I do not know where Ross is getting his information about Jahi McMath, although I have seen similar claims posted on anti-choice and conservative Catholic websites, as well as Nailah McMath's Your false equivalence smacks of concern-trolling.Facebook page.
There is absolutely no evidence that Jahi McMath has improved since being declared brain-dead. The MRI showed a brain shrunken, misshaped, and riddled with gaping holes. The family has not allowed any reputable, third-party neurologists to examine her. No follow-up test results have been released. The family has released a few photographs of her, heavily made up and covered in blankets, eyes closed or hidden by sunglasses. A few video snippets show twitches consistent with random spinal reflexes. It would take more footage to prove they are responses to outside stimuli, but the family does not offer any.
Mr. Douthat, if this Lazarus miracle had occurred, why would they hide it? Letting outsiders examine her would bolster their case -- but they don't. Use your common sense, Mr. Douthat, and ask yourself why?
Calling the late Ms. McMath "brain-damaged" is like saying the preserved corpse of Lenin suffers from a degenerative disease. A flatline brain has all the awareness and life quality of the corpse at a wake, laid out lovingly in its casket. The body is there; its inhabitant has departed.
15
By all means- let’s have the “President” and the Pope and the Supreme Court weigh in!
Here we have Ross pitching for The eternal sunshine of the spotless mind . No thanks
2
Mr Douthat: Tell us how your embrace of the death penalty squares with your attempted embrace of the culture of life. The Pope you despise suffers from no such embarrassing contradiction. I'm a bad speller: how do you spell hypocrite?
6
Ah, the "Precious Preborn Paby" crowd again when they want to distract themselves from having destroyed Obamacare, funding gaps in CHIP and defense of AR15s in the hands of "well regulated militias" that roam the streets of the US. Here's one child they don't have anything to do for except find it terrible and pray a little. Hypocritical as always, Christian only in a very modern sense. The doctors didn't have "plausible medical arguments that the limits of treatment had been reached", the kid was brain dead. "Experimental treatment" isn't a thing, if you can't even correct the failure to keep your mitochondria in cells or mice. I hope that his inability to see, hear, feel touch extended in part to his inability to feel pain.
4
I just read the entire 23-page (single- spaced) judgment in this case, & it made me cry. Everyone opining about it should take the time if they care enough to comment on it:
https://www.judiciary.gov.uk/wp-content/uploads/2018/02/alder-hey-v-evan...
During the winter when the case was heard the medical professionals at the Vatican hospital Bambino Gesu gave evidence saying they thought transporting Alfie to Italy might be too risky to try; they feared he'd die in transport or soon after arrival. This would've been terrible for the parents, as they'd be apart from their large families & support systems. The Italian doctors also held out no hope for any prospect of any recovery; tests show Alfie's brain is gone.
But then various right-to-life activist organizations & gadflys got involved, & the medical evidence took a back seat in the court of public opinion.
Alfie's father said if Italy didn't work out, he wanted his son moved to Munich, in the care of a German doctor who gave extensive evidence. This physician's testimony held out no hope for any recovery. But at the end, he added a coda where he said that given what Germany did to disabled children in the Nazi era, German MDs would err on not turning off life support if the parents still wanted it...
The judge comes across as thoughtful, compassionate & very respectful of the parents. The dad's position on his son's case also seems to differ from the view held by Alfie's mother...
8
Mr. Douthat, Jahi Mcmath's present state of existence strains the definition of the word "alive" beyond it's true meaning. Her family's refusal to allow her to be relieved of her mortal shell is nothing short of barbaric. Imagine, if you would, living out the next decade or two or three of your life flat on your back with no way to eat, drink, move, breath, open your eyes or utter a single sound to communicate with the outside world. If your faith is one that supports condemning a young girl to such a cruel fate, I respectfully question whether it is a faith worth nurturing. Not all life is worth living for its own sake. People would think you mad if you were to keep a beloved dog suspended between this world and the next in the deplorable state that Jahi McMath is forced to "live" hers. Let us reason together with our God given brains.
10
For shame, Mr Douthat!
Have you actually read any of the detail of this tragic case? How dare you talk about “wicked ends” when talking about dedicated medical professionals and compassionate judges whose sole motivation is the best interests of their tiny patient, regardless of the needs of his grieving parents?
Read the medical evidence, read the court judgements, and then come back to us with a piece of responsible journalism, instead of this emotive nonsense.
15
If I am to understand the "conservative" position, there are two standards to apply: when parents plead against all odds for a miracle cure for their dying child, Alfie Evans, then their wish is paramount. However, when parents of a evidentially brain-dead child, Terri Schiavo, plead for her right to die in peace then the State has the right to intervene.
9
Why are the parents not trusted in situations like this ?
Who made these medical workers and Judges -
"the wisest of all humans" -
so wise that only they, and no one else
shall decide whom shall live and whom shall die.
2
Absent universal healthcare, how many Alfie’s just die at home or die quietly in the hospital? How many children die because their parents have no money or insurance, can’t afford medications, or surgery or treatments? How many children go to bed hungry because Paul Ryan and other “budget conscious” Republicans want to incentivize the poor by cutting food stamps? How many million Americans can’t afford what Republicans have done to health insurance? Where are the devout protectors of fetuses when it comes to healthcare, food, and education for children?
Douthat calls expert medical opinions plausible? Based on what? “Experimental treatment”in foreign countries?
Ross could reference the CDC Mortality Morbidity stats, talk to experienced physicians, or check the Kaiser Family Foundation https://www.kff.org/health-costs/ but that’s not Douthat’s goal. His goal is to exploit terrible childhood tragedies for political ends.
As a RN with over 40 years of experience, it is appalling to watch another propagandist unearth the Terry Schiavo tragedy for exploitation. Ross Douthat should use his status to call on doctors and other experts and then attend a few autopsies of persons who were adjudged “brain dead”. Failing that, Douthat should consider what his ridiculous declaration of imminent domain over the uterus of every woman in America in the name of religious dogma. What does religious dogma say about the poor, the hungry, the sick, execution, imprisonment, war, nuclear weapons?
15
I disagree with Mr. Douthat so regularly and strongly, over moral issues. Yet I continue to read him. Here I am drawn to his basic assertion that family and love should be allowed to trump blind justice and expertise when possible. Life is so complicated. There are "no one size fits all" solutions, but family and love should weigh heavy on the scales.
2
A disgusting piece of trash. Douthat lives in a fantasy that 'family' values always result in good. If the definition of 'conservative' is not wanting change and fantasizing about a fake past period in history, Douthat qualifies. The TRUTH is that families all too often abandon the elderly - and have done so for ever. Again, I say, 'disgusting piece of trash'.
6
The stories of Alfie Evans and Charlie Gard have nothing whatsoever to do with sex. Yet Ross Douthat has attempted to exploit them in the service of his obsessive, puritanical crusade against the pleasures of the flesh. This is lame, Ross. Really, really lame.
7
While these cases certainly tug on everyone's emotional, ethical and philosophical heart strings, the issue that is not addressed by RD is who pays for these heroic measures? Governments have many people to provide for and difficult decisions, as painful as they may be, must inevitably be made in light of limited resources. Had Italy wanted to come to the rescue, couldn't the Vatican have offered support?
5
Mr. Douthat leaves for discussion state vs family. In referencing the reader to the New Yorker article about elder abuse in Nevada, a huge seed of fear descended on me. His article is an important discussion on individual vs collective rights, and “who pays” for the medical cost decision has to be factored in. But the New Yorker article focuses on criminal practices growing out of states rights, not family rights, re aging seniors, and should terrify retirees. I urge people to read it.
4
The defenders of the U.K. legal system loudly proclaim that a child is not the property of its parent (for the child’s good, of course) Instead, Alfie became the sole property of the NHS. Was Alfie better off because of this? We cannot ask him now because he is dead. The NHS decided he was better off dead - and who are his parents to debate the wisdom and benevolence of the British Nanny State? How dare they? They did not even attend college! This ugly incident was not about the best interests of a dying child - it was a blunt and brutal display of the Nanny State's power.
2
I am a regular reader of Mr.Douthat's column. This one is special. Well done.
2
It’s the gays fault! It’s the pill’s fault. It’s the sexual revolutions fault. It short it’s the fault of anyone who has supported a more tolerant society. What claptrap!
I wish the a courts would have allowed Alfie to go to Rome but it’s not because I think the court was wrong. There was no right or wrong here just bad choices. To read a column by someone who supports a group that interferes every day with the most private of decisions and blocks children from getting the mots basic of health care or even clean water is infuriating. You don’t really care about Alfie, Mr. dothat, you care about how you can use his death.
As usual somewhere in the morass there is a kernel of something I’d agree with, that is, that the conservatorsjip programs are often motivate by greed and power. I’d love to see some of your “conservative leaders” enact regulations to stop the abuse but they won’t because there’s big money in it and you would be scream about liberals wanting to interfere.
And as an aside, Ross, you need to get right on the power of the Pope. Just saying.
11
Great response. Ross is really hoping "post-familial" gets some traction and he can monetize it for a couple years. He is a Charles Murray Republican .
2
Perhaps “amused” is the wrong word, or maybe “perplexed” is better, but I am always mistified how conservatives get amped up about issues that generally call for no sacrifice on their part. They want the government to stop others from doing all kinds of things, but the minute any type of sacrifice is requested, they are silenced. We could really help these same families, and many more, by having a rational national health system, and we could truly help all those aborted babies conservatives care so much about by having more social and educational programs for parents and children. Oh, wait a minute, this might call for some sacrifice or contribution. Never mind.
13
The mirror image of this is assisted suicide. If I, and my family perhaps, agree that it's in my best interest to commit suicide why should the state intervene to stop me?
If Ross is saying that the state can only intervene to keep a person alive, why does it issue weapons to its agents and why does it allow those agents to kill certain citizens? Why does a mentally disabled person standing on a street corner with a knife deserve to die by gunshots while a 2 year old with a terminal condition must be kept alive at all costs? Certainly the family of the disabled person might have a different opinion. And while the courts seem to have all the time necessary to litigate the 2 year old's future that thoughtfulness isn't accorded the disabled person.
I don't mean to minimize the anguish those families feel and the heroic efforts they take to keep their loved ones alive. And certainly those whom we empower to take care of our most vulnerable must be punished if they abuse that power. But the state makes life and death decisions all the time. Ross wants to give one group the freedom to live in their own way while denying other groups the same control over their own lives.
6
Fine. Let' see Douthat forego modern medical care for himself and his loved ones because it's based on science and facts. And while he's at it, he can donate most of his salary to pay for pointless treatments for others. He is entitled to his opinion, however fantasy-based, but he should stop trying to deny reality when it doesn't suit him.
7
Parents must be able to choose the treatment their child needs. But parents cannot choose to terminate a pregnancy.
There, in a nutshell, is Douthat's duplicitous positions.
17
Mr. Douthat, I do not know how much experience you have with hospital care and if you have experienced the triumphs and tribulations of what occurs in our critical care units --you are fortunate if you have not. In her article, Ms. Aviv balanced a discussion of the precarious philosophical underpinnings of the concept of 'death' in the context of modern medical advances with the personal experiences (both joy and despair) of extending life beyond conventional medical advice. When we ask people to "make a choice", because it's their right and entitlement, in these circumstances when their loved one suffers a life-threatening illness that is often sudden and without warning, we are setting them afloat on a sea without a course. Physicians and nurses require many years of training to work in an ICU, and we try guide with our expertise. We certainly do not know your loved one as well as we do, but we have cared for many people with similar conditions. Articles like this which seem to pit the citizens against the medical establishment benefits neither. There is not only a financial cost but a human cost as well to most things we do in the hospital, if you had more experience with that I think you would be less glib in saying "yes, that choice may be wrong...but those are the risks a human society has to take..."
9
" the Family rather than the system gets to make the choice ". Sure, Ross. EXCEPT when the Family is a pregnant WOMAN. Do you have an inkling of the tremendous hypocrisy of that statement ??? Or, perhaps it's of no importance, to a Man AND an upstanding proponent of your Church. Not your body, Not your business. Is your actual purpose to infuriate those that are NOT forced Birthers ??? If so, excellent job. As usual.
15
“Such a system is custom-built for the coming world of post-familialism, the world bequeathed to us by sexual individualism and thinning family trees.”
I was wondering when you would attempt to make your tired point about all of society’s ills being the result of sexual freedom and women being free to leave bad marriages.
9
When insurance is involved, we are talking about how to distribute resources. Whether we like it or not, they have to be divvied up in some manner. If a family has the money to pay cash for everything and not simply cost shift to others, there is no problem.
Currently, Congress and many states want to take away food and Medicaid from the poor, unless they are working ie., "earning it". Again, the conservatives are concerned with how the pie gets divvied up in a group setting.
Perhaps Ross would support slowly dismantling the suffocating military state, nation-building and world policing so as to free up money for food for the poor, medical care for the needy, birth control to prevent abortion, child care, and mandatory pre-k education so as to foster responsible, educated citizens since, by his own admission, resources are limited.
16
And then there is the cost of prolonged and often times care without only a sliver of hope, most often dashed when the end comes.
Choice is something that deserves respect when it is paid for by those making the choice. Who pays, often decides, most often and in the case of non state actors, that choice is clear and limited to the actors and their like minded friends.
In the British cases, the choice is paid for by the State. In the US case cited, it is unclear but my guess: the State.
And, I add, I don't think the State decisions are based totally on economic cost. There are many, myself included, who believe that a life without cognition and in a vegetative state is fruitless and a burden our loved ones should not bear; nor do we wish to impose those cost on fellow citizens...where it often falls.
18
The lack of free universal medical care condemns tens of thousands of poor and working class Americans of all ages to an early grave, but conservatives like Douthat are fine seeing them sacrificed on the altar of high profits and low taxes for the rich. Yet they gnash their teeth when the tiny minority of parents with means to do so (whether of their own or donated by zealots largely indifferent to far more effective uses of their monies) are prevented from prolonging the macabre experiments in our brave new methods of artificially maintaining the appearances of life.
The potential prospects of those who die in emergency rooms because they can’t afford regular doctor visits are a million times more certain than those of Algiers Evans. Until Douthat comes out for Medicare for All no one should take seriously his claims of being “pro-life.”
29
You are talking about the privacy rights of people to make choices about termination of life and quality of life. It is a personal decision. I agree. Therefore, you are also making the case for Roe v Wade.
40
As with all of Douthat's writings, this one, too, rests on his belief in an omniscient, altruistic while at the same time wrathful, vengeful god. Belief, in brief, in and of a myth.
He barely brings up this god in today's essay because to do so in depth would open the door to a discussion that would burn through his word limit many times over. So he shames his readers, or attempts to, with phrases like "humane society," putting the blame, the burden on civilization and letting his omniscient and all-powerful god off the hook.
Fine. We'll take it.
Also left untouched are the subjects of limited resources and allocation of same. I have read the articles Ross's column mentions. Rachel Aviv does not ignore it, but its impact on society's viability in terms of its ability to provide the best for the most is the core of the problem. In the end, Ms. Aviv, too, does not provide a satisfactory solution.
The monetary outlay to provide for every instance of a Charlie, Alfie or Jahi and keep them...alive is not really the term we should be using, as to be "alive" is so much more than to turn oxygen into CO2 and to produce bodily wastes indefinitely...is enough to substantially worsen society's obligation to provide for its members in a way that sustains and assures long term survival of the whole of its members.
Ross errs when he conflates medical survivability at all costs and con games played on the elderly. The latter is a matter of greed and little else.
16
Millions for one (or a few), but nothing for millions. I suppose that makes perfect sense in a conservative's world.
44
To wrestle with Douthat here, I think one must accept that it is entirely possible that a seemingly comatose patient, apparently with little useful brain function, might in fact be conscious. This demands a certain humility about our actual ability to measure the subjective experience of one so afflicted. Having said that, I think consciousness, like running marathons, is overrated. Self-awareness in such a context would just mean more agony in all but the rarest cases (think S. Hawking). I, for one would happily have my relatives set the dials to zero and just let it go. To say otherwise, is to inject a mawkish and religious element into a tragedy.
19
It's ironic to read of "choice" in this essay concerning "control" of the fate of a loved one on life support and/or a feeding tube, by an author who opposes "abortifacient" contraception or a woman exercising her "choice" to terminate a pregnancy before viability.
I don't consider a fertilized egg to be "life", nor would I consider myself "alive" if I rely on machines for breath and nourishment while in a vegetative state. There is a huge difference between living a life, and merely existing.
No one gets out of here alive, as we all become aware of at some point in our lives. As a veteran, and former motorcycle rider, I'm in no hurry to meet the Grim Reaper, but neither do I fear it. We all meet our end eventually. A living will states one's choice. I wish no extreme measures to be taken to prolong my life, and "Do Not Resuscitate" will be on my patient chart. If I am incapable of consciously making the decision, I trust my survivors will tell the doctors to "Pull the plug" so that I might finally see what lies on the other side of the transition we call death
38
You have taken the words out of my mouth. Well put! This opinion piece exemplifies why personal choice is critical - and equally critical is to write your “living will” people!!
3
The question you want to ask a self-described conservative making this case is, what's "love" got to do with it?
Doesn't the market rule all? Who exactly is going to finance desperate parental fantasies or 40-year vegetative states, in a country where were told (by conservatives) that health care isn't a right, it's something you pay for?
33
Douthat conveniently omits the cost of care for these children. I find it odd that conservatives who do not want to provide universal healthcare to children will defend the millions of dollars spent to keep alive children who cannot eat or breathe on their own. In the case of Evans, I feel the family should have been allowed to take the child home, but where resources are limited, the state is not required to provide endless life support. Since Alfie Evans was not obviously in distress, his parents should have been free to take him home or to Italy at their own expense (or with whatever funds were raised by the case of this well publicized white child's health needs). Toddlers or dying in droves for want of basic medical needs all over the world. After all of their needs are met - proverbial low hanging fruit in medical terms - I will hold up signs outside of a hospital for these tragic but highly debatable cases.
17
The question, as posed, is -who has the responsibility/right to advocate for "the best interest of the child"? In some states, most actually, parents can withhold treatment from a child based on religious grounds, even when the treatment can reduce pain and suffering. It is not established Federal law who, other than the parents, have that right.
As for the selling of elderly patients rights to outside conservators - I expect that an investigation will eventually turn up some combination of lack of funds to vet people, graft and corruption. We have a history of creating bad institutions from good wishes.
7
In describing the situation of the young California girl, Mr. Douhat states that she “has survived for years despite confident medical predictions to the contrary, and she now gives pretty decent evidence of retaining some form of consciousness, some ability to listen and respond”. At a time when thousands of people in this country are unable to receive medical care because they lack insurance or have less than adequate coverage, is this the type of “life” we want to support? I understand the desire to keep a loved one alive, especially if that desire is underlined by sincere religious beliefs, but unless the person wanting to support that loved one is fully able to do it without any (and I mean any) public assistance, I strongly believe our limited public funds must be used to help those with a prospect of more than “some form of consciousness, some ability to listen and respond.”
19
Mr. Douthat is drawing attention to extreme cases, because they put a vexing problem into sharp relief. It's a useful device to encourage us to see things from his point of view. But just because medical science CAN sustain a life far beyond viability doesn't mean it OUGHT to be done. Rest in Peace can be a beautiful thing to say—if only the science would let it happen.
16
Ross Douthat's opinion reflects the typical American credo that privileges one's freedom over anybody else's or anything else. The typical American is a contrarian and a renegade who is only willing to accept his own's wisdom as a matter of law and policy. The U.S. Bill of Rights is not absolute, but, in practice, we view our individual rights and freedoms as absolute.
We are not just Americans; we are all (each of us) scientists, preachers, doctors, lawyers, ethicists, teachers, mechanics, journalists, and more, all without training, because we are American and we have the divine right to be all these things here and abroad. President Trump's advocacy of these values might seem extreme, but it is fully consistent with the political and social logic ("I count; you don't") that has been put forward to characterize American Exceptionalism since (and even before) the foundation of the country.
I (and the other 6.7 billion earthlings) respectfully disagree.
12
Young and old alike need Advocates when it comes to the Medical profession and the State. Neither England or California have a right to prevent the parents of children from making decisions concerning whether or not they can seek other medical advice.
The same is true of the Elderly. If Adult children are not advocates for their elders then hopefully they have a best friend or two who will advocate for them. The elderly are as vulnerable as children.
At least most children have parents who will advocate for them. And the State has no right to take that away from the parents and especially the Medical professionals. Shame on the doctors who did this.
2
Neither Douthat, or those posting responses to this column, are systematic in their approach to these issues. Infants not yet born, children with terminal diseases, and the very elderly who are no longer competent, are all similarly situated. Who gets to speak, to decide, since the infant in the womb, the terminally sick child, and the very elderly person, cannot speak for themselves? What principles are brought to bear to assist us? And if we find such principles, do we want to place the interpretation of them in the hands of doctors, guardians and judges, who may have 'cool wisdom' (and may be given compulsory powers by the state), but will shed not a tear when the sentence is the end of life or life support. I would rather see a jury drawn from the local community make such difficult decisions - if we have to make decisions under circumstances of incomplete information, then let people do it who can hear the testimony of both raw personal emotion and cool expert wisdom. It is extraordinarily difficult to balance love against the real world cost of continuing life care for a comatose person, and the local community is best equipped weigh that balance. Ultimately it is our government and our systems, and our lives being decided, not the experts, doctors and wise judges, just as the desperate and loving parents or children or relatives are our neighbors.
1
and will these local communities pay the annual millions of dollars of medical bills? When presented with the astronomical bills, we all know which way there going to go.
I just spent 28 days in the hospital and when asking my doctor what my medical bill would be like if I had not had insurance, he said somewhere close to $1 million. Multiply that by 12 months and you'll end up with an annual bill that 99.9% of our population could ever afford.
8
Your local community looks very different from mine. And how do you know that doctors never shed a tear when their patients die?
I remember my father after a fourteen-year-old girl with a congenital heart defect died, in spite of the team's desperate efforts to keep her going. I will never forget his description of the code protocol, of her naked on the table, her gown stripped off in their haste, and I will never forget his face as he said "We couldn't save her."
Doctors are people. Their reactions are human.
1
Douthat doesn't grapple with the basic question the British court had to answer -- what was in Alfie's best interest? I understand the desire to allow the parents to decide, but Alfie was not a thing and merely the property of his parents. Ongoing invasive treatment that has no medical benefit can inflict actual harm and suffering. The Italian and German hospitals that had agreed to receive Alfie could not offer any treatment or cure for his condition. They could only offer the same palliative care Alfie was receiving in England, although those hospitals apparently also agreed to potential perform surgeries on Alfie (such as a tracheotomy) that would have allowed his parents to respirate the baby at home. Should the parents have been allowed to move the terminally ill baby to another country for surgeries that would be of no benefit to him, but would have involved additional pain and risk?
23
Ross makes a number of thoughtful points. I disagree, however, that single parents or non-traditional families would not have the strength/commitment to fight for their offspring. Parents remain parents no matter what their marital status/sexual orientation, and married parents could disagree on the best course of action just as easily as single ones.
5
All the more reason to have your own wishes clearly written out and known to anyone who might make those decisions. Do not let the courts, the lawyers, or the do gooders interfere with your life. Get a living will and health care directive done today. I have had the misfortune (twice) of having a religious do gooder try to interfere with an individual's written directives and the family's wishes.
14
My disagreement is summarized by Mr. Douthat’s last paragraph: because I believe that a humane society and humane individuals, must, to the best of their ability, choose the most ethical and responsible path. That is all the more important when all possible outcomes are devastating.
And I would personally hope that if I were in a situation like this, someone would help give me the strength to make the hardest decision possible, if my decision making was prioritizing reduction of my own suffering over that of someone I cared about deeply.
5
These are important questions, worthy of a lot of discussion. It's always hard to condemn someone to death even when that person has effectively departed. It's hard to determine when such a person no longer exists.
It's the flip side of the argument about when life begins and similarly doesn't lend itself to easy resolution. Religious beliefs play an important role. God decides who lives and who dies and when that should happen; leave it in God's hands.
Should we trust the "system" to make the decision? For abortion, the answer Ross provides seems to be: yes. For end of life decisions, not so much.
I can agree with that because both the system and individuals make terrible mistakes, but I'd come down in a very different place about how to build the system.
2
The beginning of life decisions are - as a rule - straightforward; the end-of-life decisions - ah, now there's the rub.
The two ethical cases have one thing in common: how is the dignity of the human person to be respected - indeed even to be acknowledged in some instances?
As Ross argues, the test cannot be some utilitarian, market-driven measure of "worth" or "value:" the intrinsic worth of human life must always be the axiomatic foundation.
Medical technology - where it has shed light and where we are still in the dark - makes end-of-life a far more challenging circumstance, even for those who adhere to the notion of intrinsic human worth. Suffering only has redemptive value for the sufferer; everything else is torture.
Our society would be better served if the intrinsic value of human life were understood and practiced throughout. Even so, in modern medical settings, our "doing-to" versus our "doing-for" has its limits and dividing lines can be difficult to discern, even especially for those of well-formed conscience. Though we hasten it at our individual and collective peril, we should nonetheless find spiritual consolation in the melancholy truth that death - when it finally comes - is always a blessing.
1
What is not clear and seems unstated is the question of who is the payer for Charlie, Alfie or Jahi. If it is the state through Medicaid funding or Britain's NHS then there should be some clear norms of when funding for extended life treatment is denied. After all there is a clear limit to resources, viz. our tax base or insurance premiums and prolonged treatment is sometimes ineffective.
If the parents/family seeks to fund the treatment themselves then they should have that right.
I suspect the former although, like in other opinion pieces, Ross is disingenuous in his argument.
10
I thought that a third party had agreed to assume the cost of Alfie Evans care and asked that he be moved to Italy for that purpose, with the consent of his parents. Regardless of whether I am correct, I'm curious as to whether you would you agree that it would be fine for the child's treatment to continue under such circumstances, or should it be solely the parents' own means that matter?
1
Payment was not the issue in the Alfie Evans case and was never raised.
2
Of course, I only argue that with public funds and also private insurance where the burden is born by all, that it is not wrong to set standards of how much health care and end of life support to give. But should there be funding from another source by all means let them provide the care.
I had not read anywhere that there was an offer of private funding for Alfie but if there was it seems inappropriate for Britain to deny the parents and Alfie that care.
No government should declare that a family cannot try to extend life. BUT... no society should be required to pay for a family's inability to let go, and use precious resources that could save another. That creates, to say the least, tricky ethical calculus.
Our ability to understand what is going on in the inner life of a person kept mechanically breathing with an atrophied brain is non-existent. Anyone who thinks he knows for sure is seeing what he wants to see. It's reasonable for a government to refuse to pay, but not reasonable for a government to disallow someone to pay privately for their own hope.
As for the elderly? Family needs to get their head out of the sand, and face the reality that Mom and Dad need their help. When we don't see that our elderly need services, or refuse to believe that they cannot help themselves, we run the risk that the state will appoint a guardian. If we want to protect our elderly, we need to get a lawyer and do just that.
Protecting people who are losing or have lost their ability to protect themselves, gets complicated. For conscious breathing people, who are losing the ability to think, the ethics are fairly clear: getting good care that keeps them safe and protected, is a necessity. For the rarer cases of people whom we cannot tell if they have sufficient brain function to be considered alive, that is just a much harder judegment.
8
Compared to the inhumanity of our insurance company overlords who consign millions of poor people to a life without any, or completely inadequate, healthcare, these isolated, heart-tugging stories are a pittance.
At least the motivation that affects the individual cases cited is a utilitarian concept among doctors: in a system with limited resources use those resources to help as many people as possible.
The insurance company model is a simple cost-cutting one with little consideration of doing good for the highest percentage of the population as possible. It unfairly prioritizes corporate employees and shuns the indigent.
Which group, the doctors or the insurance companies, most thoroughly acts against the tenets of Douhat’s religion? To me it’s a no-brainer.
42
You always raise fundamental issues that I enjoy reading and thinking about (even as I often disagree), but in this case: why do you avoid discussing abortion?
If parents should be the ones making end of life decisions against an intrusive state/medical complex, why can't they make decisions to decide to abort an unwanted fetus without state intrusion?
37
I follow Mr. Douthat's reasoning, about parental or filial, perhaps irrational, love, and how this may go against some (pseudo-)objective expert assessment by doctors or judges. I even follow him when he points out that in many cases science doesn't actually know what will happen and that, as a consequence, it may actually be wiser to let experiment or nature do its thing. However, he fails to mention the elephant in the room, to wit who will bear the cost of such a course of action. At the end of the day, resources are finite and doctors and judges must take into account what the cost to society of experimental treatments may be, should the community be called upon to fund it. Which brings us to the uneasy and morally suspect compromise... Let family decide, when science is no longer able to provide an answer, but also let them bear the full cost of the desperate choices they have to make.
10
You are comparing Alfie Evans, whose brain was fatally compromised, to elderly people whose brains still function fine but who are conned by thieves. You can do better than this, Ross, I know you can.
20
What utter nonsense. No one's expertise was undercut. The boy Alfie Evans died within a few days of being of being taken off life support exactly as predicted. No doctor ever said his life would become extinct wthin 25 minutes.
In fact the NHS spent hundreds of thousands of pounds keeping this child on life support long after it was adjudged by numerous well qualified doctors that his chances of survival were nil. Not only that but the family received legal aid to contest the decision which wound it's way over several months through various levels of the British legal system right up to their supreme court. To suggest that "Expert" medical opinion was not repeatedly tested in the most rigorous arena is complete nonsense and grossly irresponsible on the part of Douhat.
Next time Douhat or any member of his family has a major medical emergency I've little doubt he'll be falling over himself to seek the assistance of those medical "Experts" whose expertise he dismisses in the case of Alfie Evans.
113
Agree John, I think Douthat did not think this through sufficiently before writing.
The legal system in the UK is setup to protect the welfare of the child, not the parents, in this case. Alfie Evans’ suffering would have been prolonged at the expense of his parents misguided sense of love.
28
As Paul, NJ, says, the best interests of the child is/was the legal issue under UK law in several recent cases in England. Addition, despite the title, this column is about several different issues in the US and UK, only tangentially related, that should not have been conflated.
Very poorly written.
The governments of Poland and Italy, and the Pope offered assistance. The plain fact is that the parents were prohibited from taking Alfie from his hospital room to avail themselves of the aid noted above, or even to die at home. This is a denial of parental rights, a most glaring case. This baby was denied water and nutrition, but once he was breathing on his own, that was resumed. That entire family was suffering.
While I don't agree with Douthat's detestation of government and experts, there have been more than a few publicized cases of elderly people being deprived of liberty and property by greedy hospitals, nursing homes, probate judges, lawyers and relatives. No matter how well you think you've planned for your old age, you can't always protect yourself. Some states have more corrupt (or dysfunctional) probate systems than others. Most could stand improvement (but not eliminated).
6
The reason the courts acted the way they did is because they represent the best interests of the child. What the parents want is to be taken into account, but not the deciding factor. So the courts have to decide what should happen, trying to base the decision on the facts and try and leave the emotional components out of the deliberation. We all will have the opportunity, likely many of them, to weigh in on similar situations: the dying parent being kept alive by machines is the most common. But make no mistake, being kept alive is not a benign process: Having tubes shoved into you, having holes cut into your neck to breath, not being able to move independently, not being able to eat, not having any meaningful interpersonal relationships, not being able to talk, and not being able to say what your wishes are. And as gut wrenching a decision as it is, sometimes a "neutral" third party needs to answer the question that cannot be posed to the patient: Is this any way to live? It's a very difficult question. Sometimes the answer is "No". And sometimes we also need to answer the following question: Who are you fighting to keep the patient alive for? The patient or for yourself?
39
"In our weakest moments we can hope to be surrounded not just by knowledge or power, but by love."
Gee, Ross. In my weakest moments I hope to be surrounded by health insurance.
102
@Hollywooddood: The quote you singled out is interesting. Social conservatives from the Taliban to the men who run the Catholic church are obsessed with denying women power, both outside the home and in it. They don't want women to even have power over their own bodies. Limiting access to education is, of course, one way to accomplish this. Like many anti-feminists, Ross Douthat likes to set up a false dichotomy: women can be well-educated and successful, or they can be loved. Pick one. It isn't true. Giving birth to a brood doesn't guarantee that you'll be "surrounded" by their love after they leave the nest. It makes no sense to base what you do with your life on what might happen when you're on your deathbed.
10
Alfie’s death is sad. But it was natural. He had a degenerative, incurable brain disease. By removing him from artificial life support he died a natural, merciful, peaceful death after already living longer than he would have without any life support to date. Sure, they could have kept him in life support and maybe he would have lived a few more years, but for what? And doing so would have cost millions, at the expense of healthcare for others. Just as the sad case of Jahi has cost taxpayers millions of dollars. Unfortunately there is not a bottomless pit of money for healthcare in this world and tough decisions need to be made. It is completely understandable that the parents in these cases want to keep their child alive longer. I’m sure anyone in their shoes would...but if anything be else was in the same hospital with a blood clot threatening to dislodge and travel to their brain and kill you any moment, I doubt they’d want to be told “sorry, we don’t have the resources to remove that clot, we’re putting it all into keeping a brain-dead person alive as long as possible.” These are terrible decisions but they need to be made.
79
If you're going to use the megaphone of the NY Times to discuss the Alfie Evans case, then you need to give a full account of what was at stake. This wasn't about the government overturning parental wishes, but about grieving parents versus anguished medical personnel dealing with a child whose brain had degenerated so much that there was no possibility of restoring function and that to move him would be to actively harm him. You can disagree with the outcome of the court case, but you may not reduce this to a simple morality tale.
164
The essential point about Alfie Evans is in the court judgment (which I suggest Mr Douthat actually reads):
MRI scans showed "the almost total destruction of his brain".
"Almost the entirety of Alfie's brain (has) been eroded leaving only water and cerebral spinal fluid."
Any talk of 'treatment' was nonsense. This was a body with almost no brain left, sustained artificially. The child was already dead for all practical purposes.
56
Life at all costs: that is what you are promoting.
But we send soldiers to their death.
We kill criminals.
We pay police who shoot unarmed black men.
So families that can pay their own way can choose. Up or Down.
Live or Die.
What about families that cannot pay for medical care for their loved one? Should one child be allowed to bankrupt a whole health care system or even a whole country?
When treatment is futile and even painful for the patient, should we keep them alive with an artificial method devised by science? Or should we allow them a natural death? Should we even allow a cancer patient to consciously and conscientiously withdraw from treatment? Should we force life-saving treatment on unwilling and competent patients?
Families are at risk, not because of government programs, but because extreme alt-capitalism has deprived workers of appropriate pay allowing wealthy investors and CEOs to scoop up even more wealth. Families did work well when one parent could earn enough to allow the other parent to stay home to care for the patient. But our inflated and insane capitalistic competitive system destroys workers and families. Why don't you write about that?
46
The definition of 'alive' as implied in this piece, is a bit to vague for me. If we reduce a person to the level of the jellyfish, it is alive only in the sense that the jellyfish is alive.
17
Does Mr. Douthat really think doctors and institutions making life-changing medical decisions without the consent of patients and their families is a new phenomenon!?
How many women (and men) were forcibly sterilised in the 20th century? How many people of colour experimented on? How many disenfranchised people institutionalised without recourse to appeal?
Yet somehow, in his ahistorical view, Douthat manages to blame "sexual individualism" for this ongoing denial of medical rights to families.
He then attributes the struggle on behalf the children, in two cases, exclusively to "fathers," and in the other to an "extended kinship network."
No mothers, apparently.
The irony is that the system which writes out familial decision making as too 'emotional' or 'irrational' is the same as ever its been. And, in a subtle way, Douthat perpetuates it by excluding mothers. He himself wishes to disenfranchise weaker actors from making decisions about their health and well-being.
He creates an unacknowledged dilemma by objecting to cold, patronising institutionalism, and individualism that tramples on the rights of the weak, while arguing to uphold the conservative patriarchy which has always undergirded these aspects of society.
That he can't see this historicity, and so mistakes the old for new and grasps for unlikely culprits, things that upset him in the present, is also nothing new.
10
As so often happens with Douthat, he takes an excellent, compassionate, and convincing point (families should have the right to take care of their kids, even if doctors say they are “dead”), and then muddies it up with one of his pet peeves (in this case, his weird belief that low birth rates are a bad thing).
Mr. Douthat, I have no children. And yet I do not fear the gross invasions of the state and the medical establishment in my old age that seem to keep you up at night. Like anything else, Mr. Douthat, you just plan for it. You just plan for it. And, in the meantime, you look with satisfaction on falling birthrates, and enjoy a world that is that little bit much less “bleared, smeared with toil.”
I think it’s a happy bargain!
11
Personally, I consider misguided those parents who make the decision to keep their brain-dead child alive, even though the child has no hope of recovery, Still, I will agree with Ross Douthat that we ought not deprive them of their right to make that decision, however misguided it may seem to me. But I would deprive them of the opportunity to use insurance money or government funds to pay for expensive health care, potentially for many years. Given our society's limited resources and myriad problems, I do not think that other buyers of insurance or taxpayers should be compelled to subsidize decisions that fly in the face of doctors' determination that a patient's case is, sadly, hopeless.
16
"... in a small apartment in New Jersey, in the care of her mother, she is very much alive."
Like a fetus, she is alive, but she is certainly not living.
They said all the same things about Terry Schiavo. Bill Frist, a medical doctor and the leader of the World's Greatest Deliberative Body, looked at a video screen of the woman and pronounced her not brain dead, even though her doctors said her brain had liquefied.
This led to Congress coming pretty close to passing the equivalent of an unconstitutional bill of attainder to protect this woman and the President of the United States of America had one of his many vacations interrupted to fly almost 2,000 in his 747 just to sign the bill.
THAT is what happens in conservative America when you get the government involved in deeply personal decisions.
And while we are at it, Ross, what about all those old people that conservatives don't want using medicare tax dollars for extra ordinary care late in life? No problem kicking them off the machines then, huh?
42
Ross, I think you should ponder the implications of the word choice as you use it for end of life decisions. It's the word that the abortion rights advocates use in their case.
10
I too read about Jahi in the New Yorker. I don’t know if I would want my child to live like that but I was offended that her family was not allowed to treat her as they saw fit, having to flee to NJ. She is their child to love and care for. And by the way Ross, I’m a card carrying liberal.
3
I had to wait almost to the end, but I found it, the eventual cause for the issue of the day to be laid at the feet of the sexual revolution. Is there anything Douthat won't blame on that?
14
Oh yes, if the government removes life support that's a bad thing, but when your health insurance coverage tops out or limits treatment, that's ok.
33
It's got a weird logic to it, if you think about it. Deny vast numbers of people ordinary health coverage, you're likely to wind up with more brain-dead people on machines, with conditions that might have been treatable earlier in the course. (Not the case with Alfie Evans, but the point remains.) Somehow it's only when the person is a helpless vegetable (or a fetus) that Douthat and his conservative ilk become suddenly deeply concerned to keep them technically alive at all costs. Perhaps to salve their consciences over not ensuring everyone had ordinary medical care in the first place?
4
People in the midst of an emotionally difficult time don't make the best decisions. This author offers zero concrete evidence to back up his claims. A brain-dead human being does not "retain some form of consciousness." The brain is no longer working. That's the point. I'd like to know where Douthat gets his evidence--from Jahi's mother, a grieving woman clinging to a fantasy, or an objective medical doctor, many of whom have already provided conclusive evidence to the contrary of the unsubstantiated claims here.
15
Sadly, Jahi McMath is alive but really dead, the heart artificially kept alive by oxygen generated by ventilators. The case lives on in law courts lives because a rogue medical expert testified that "brain death"--as distinguished from cardiac death--is not death, a finding not medically recognized and because there are medical malpractice issues to be resolved. When the ventilator is removed, Jahi's heart sadly will stop quickly and with God's mercy, quietly. A very good factual exposition of the legal and medical case is found at Chest Journal, "The Uncommon Case of Jahi McMath," April 2015, at page 1144.
The neurologically dead exhibit physical characteristics which are illusions of life mistaken--as Douthat mistakes them--for signs of life: healthy appearances; steady, regular breathing; a healthy, peaceful countenance, all through the magic of the ventillator. Periodically, a patient might make "Lazarus signs, autonomously blinking an eyelid or moving a finger, all false signals of life. Medical science holds brain death is death, and the science is not refuted.
While Douthat presents the issues as ethical and communal, he also opposes complete, universal healthcare coverage and government intervention in markets. But, the costs of keeping the neurologically dead alive for an indeterminate period with no real idea of the life to be led thereafter are troublesome. Minimums of $5,000. per day, some higher, quickly exhaust insurance coverage limits. What then?
14
As long as the family is paying for the extraordinary treatment, then the governments role is limited but if the person is alive on public money then the case is different. Clearly the public has a interest in how public money is spent. Douthat does not deal with this delemma in his column and, thus, his lofty generalities lose much of their force. Show me the money Mr. Douthat.
12
I found an online 2012 article in a medical journal that gave the cost of paediatric intensive care in the UK as £2,800.00 per day. Alfie Evans was admitted in Dec 2016. I don’t know what the figure is for today but even going by 2012 figures, if true, the cost of diagnosis and then keeping him alive has been huge.
2
Dearly beloved progressive cohort,
That the simple premise of this column should evoke such furious excoriation, much of it referring to social issues barely tangential to the actual subject, will keep me sleepless tonight, as it should you as well.
The indefensibility of the bare-bones examples used to make this column’s point; that some of the dominant liberal social values we have championed as a response to, and as redoubt against, an atomized, corporatized society, and those unintended ones that have parthenogenically sprung from the detritus, a fait accompli whose resultant terrors we fully share with this columnist, even if differently apprehended, have created social ills beyond the power of any polity to remedy, should be apparent to all.
That a culturally conservative conscience should so easily pique our own, speaks for itself. We owe him, at the least for pointing this out.
2
In his well reasoned essay, Mr. Douthat explores the overpowering will of the medical complex's deep state. In his next essay, I hope that he explores the Republican cure for this ill which is to bar the poor and disadvantaged from receiving life saving medical treatment.
12
Immortality at who's expense? Why is this question not addressed in this piece? Even if one goes down the path of every life is sacred, only the belief in an infinite resource model allows for immortality.
If the parents have infinite resources then it is the parents decision. Otherwise the decision is societies to make. It is fine to disagree with the decision, but that does not render the decision incorrect.
7
When columnists write about medical issues I wish they would vet their medical information with independent medical experts. Unless you have access to the medical records, it’s highly unlikely you are getting your facts correct. There is a difference between brain death and brain damage. Jahai is brain dead and there is absolutely no credible evidence that she is responding language or purposeful movement. When you perpetuate incorrect information you do your readers a disservice. After removing a terminal patient from a ventilator, one cannot always predict when death will occur. Families have asked me and my usual response is hours- days. These are difficult issues for families and medical professionals but we are not obligated morally and legally to provide care that is considered futile. Families are under tremendous stress when confronted with these decisions but the medical professionals are not the enemy.
52
When there were just a few billion of us on this rather small planet, family was certainly the center of so much life. But with 7.3 BILLION now spread around our globe, often times in individual diasporas, it seems that to be wishing for the family of old is a bit too much like MAGA with a bit of lipstick. Certainly it is a wonderful thing that parents can care for children and that elderly can be looked after by their adult children, society is also deeply involved.
RD failed to mention that Jahi's care costs $150,000 per month, and even with her extended familial network these wonder treatments were not brought about by anything but advanced society. The same society that is maligned here as being too inhuman to be trusted. Sorry to tell you Mr Douthat, but you can't have it both ways.
25
It's not MAGA with a bit of lipstick, it IS MAGA. Douthat is an extraordinarily self-deluded individual who imagines himself morally superior to President Trump, but his politics are pretty much the same.
3
Describing Jahi McMath as "brain damaged" is like describing the preserved corpse of Lenin as "suffering from a degenerative disease."
Look up her MRI online -- just massive loss of brain tissue. The family has never released results from follow-up tests, nor allowed a reputable outside neurologist to examine her. The few photos and video snippets they released show a girl who looks dead, and makes movements consistent with involuntary spinal reflexes.
I'm sorry, Ross, no matter what you read on Nailah McMath's Facebook page or "right-to-life" websites, there is zero evidence that Jahi is better or even alive. If the family believes a medical miracle occurred, you have to ask yourself: why are they keeping it such a secret? The logical inference is that no recovery has happened. She's irrecoverably flatline, a temporarily animated corpse who deserves the dignity of a decent burial.
A strange world, where we put corpses on ventilators but price living people out of life-saving cancer treatments and life-giving prenatal and maternity care.
96
And, when the antiabortion zealots get their way, we insist women give birth, then walk away from mothers who don't have the means to care properly for the infant.
9
Good conversation starter Ross as there are no easy answers to the dilemmas portray. Who is to say whether the state or the family is more caring or competent to determine the best care especially for the elderly? Surely there are many families who would gladly take on this responsibility but also many who wouldn't or couldn't.
Ideally, the elderly person him/ herself should decide under whose care they would prefer to spend their remaining days. However, in many cases, due to the decline and/or unwillingness of families the only solution will be either private or state financing nursing care. We should all work to make sure that that care is a good as it can be.
5
As far as the elderly are concerned, both the state and the relatives can be caring or greedy, and either should be able to stop the other from being greedy. Parents should not be left to the unaided and unsupervised care of children or spouses who may know little and have little experience about dealing with the elderly, even if they mean well. And where money and effort are concerned, they may not mean well in a variety of ways. And outsiders must be willing to spend the money and effort, and have the resources, to do a good job and supervise those who are acting directly. We know that even religious organizations sometimes need outside oversight to prevent them from doing horrible things.
Withdrawing life support from terminally ill or incurable people, whether children or adults, is another area where experts and family need to keep an eye on each other. Sometimes experts may want medical resources not to be wasted, but sometimes experts or the state may want life to be prolonged for no good reason, or a religious reason that the relatives and the terminally ill person may not accept.
2
The stories of these children is a story of Utopianism vs. medicine. In an ideal world, these children would've been able to be cured. The doctors charged with their care said they couldn't, and that keeping them alive was cruel. Of course we can sympathize with the parents - what a dreadful, dreadful situation to be in - but if the terminally ill could just move from doctor to doctor, and from system to system, until they found someone who said what they wanted, then there'd be no medical resources left for the living. There's no reason to believe the doctors were wrong.
14
I don’t see a through line in these two stories. YOU see state overeach. But I see two entirely different situations.
Extreme medical interventions to save lives that are not savable is not only expensive but also painful for the families involved and for the patient.
Allowing eldery people who can speak for themselves to be abused by strangers in the name of “caring”for them is a scam perpetrated by the State to steal family money.
In the one case the State is adjucating a medical decision and taking the side of medical experts.
In the second the State is empowering a stranger with no apparent expertise or reason for being involved to take control of the money and property of elderly people who have not only families, but the ability to care for themselves. Its a horrifying Kafkaesque story that I think should be brought to everyone’s attention.
8
I don't feel I am taking you too far out of context here Ross when I say that it sounds like you are advocating for pro-choice. Letting the family decide. Does this mean you would be ok with abortion in cases where the immediate family consents? Is that significantly similar to the choice your discussing here. Because it sounds like you are telling the law and the bureaucrats and the politicians to stay out of the medical decisions families need to make with their own set of values. And I don't think there is room for a blanket policy dictated by the religious right and the conservative politicians who do their bidding to eliminate choice for abortion in at least some contexts when taking a pregnancy to term is a significant problem for those who it will impact most. Your words here could be construed as advocating on behalf of such families. What say you?
37
"Letting the family decide." - With conservatives, this always means "as long as they make the decision I approve of."
5
We should always remain skeptical of attempts by institutions to replace human relationships. That said, the issue for elderly adults is not whether government is better than family. The issue is that there are few real protections for vulnerable adults and minimal supports for caregivers.
My sister, dad, and I cared for my mom in her final years. It would have been easy to take advantage of her. I had access to her bank accounts and all her personal records. My parents also owned their own house, and it would have been difficult for anyone to know if she was neglected or abused.
That six-year journey was the most important of my life - and the most demoralizing. We had amazing support from friends and family, but our saving grace was the state and my employer. My parents did not qualify for Medicaid, but MN shared the cost of my mother's adult daycare. When my father (who had been covered on my mother's plan) was rejected by private insurers for pre-existing conditions (pre-Obamacare), MN offered insurance through a state-run plan. When my mother experienced a medical crisis, I used paid family leave to stay home, because my sister and dad (who were hourly workers) could not.
It is easy to laud family values and family involvement. But unless the system itself is set up to support low- and middle-income caregivers, and unless we put more effort into ensuring that vulnerable adults are protected from abuse and neglect, such sentiments mean little.
49
Good for you for stepping up with such dedication. I do think many people overestimate the ability of families to care for dementia patients at home. They can wander off, become violent, accidentally burn down the house, choke on food, refuse medicine, or hurt themselves in a thousand different ways. Their social needs are different and so are their waking/sleeping cycles. It is a contant grief and frustration, comparing before and after, progressively lowering your expectations.
My dad ended up in a high-quality "memory care" ward, with 24-hour attention, a safe environment specially adapted to dementia, and social activities -- care level that that no private home, even a well-meaning one, could provide. The staff accepted him as he was, never having known the brilliant, curious, accomplished and passionate man he had been. They never got impatient or grief-stricken at his deficits. And if they were strangers to him, it didn't matter. To a man without memory, we were all strangers alike.
He had been a good provider and careful planner -- there was money for quality care in a facility that met his needs, once my mother could no longer manage him. Most people don't have the resources we did. They should.
14
Ross Douthat presents this case as family vs. the state/medical complex, with the state over-ruling the family. What about the Terry Schiavo episode? Her husband accepted the medical opinion that she was brain dead, and wanted to withdraw life support and let her die, as he asserted she would want, versus her parents, who believed she had a level of consciousness? Despite Congressional action, court involvement ended with two decisions: to abide by the wishes of her husband, and to accept the conclusion of court-appointed experts that she was brain dead. An autopsy proved this to be true. Absent clear directives from the patient, family wishes should prevail. But the judicial system and the medical community are needed to protect the patient. These things can get messy.
16
"But it is the task of our present to ensure that where the family still has the capacity to choose for an aging parent or a dying child, the family rather than the system gets to make the choice."
But what if the family makes illogical choices? Choices that do not serve the patient? It is the well-being of the patient that is the concern, not the family. Sometimes the families might need help in understanding that the patient should go gentle into that goof night. If the patient cannot rage, then it may not be the families call to do so.
19
Exactly. What in the case of a Christian family who wish to refuse medical treatment for a sick child because it runs against their religious beliefs? Are they allowed to let their child die from a treatable condition because that's a sign from God that they didn't believe hard or well enough?
Between 1975 - 1995, 172 children died in the US because of religious motivated medical neglect.
The whole 'parents know best' argument founders on cases and situations like these. Parents don't always know best. They may love their children deeply, but they may not always act in their best interests.
3
Mr. Douthat: What if the roles of the family and state were reversed? That is, what if it was the family who wanted to terminate treatment, and the state that wanted to keep the young patient alive? You have written this article as though it were a critique of government involvement in personal family decisions. But perhaps it is just an expression of your pro-life views? That would be fine, because I'm sure your views on the value of human life are rooted in a sincere and passionate moral conviction. But don't write an article pretending you are complaining about government intervention in family affairs, if in fact you would be in favor of such intervention when the government is taking the side of "choice," as it sometimes does in cases of, say, aborting a fetus when the life of the mother is threatened, or when an unborn child tests positive for severe genetic disorders.
41
Jahi McMath, to most observers, is not "very much alive". Mr. Douthat does have a point that a decent society should not have the incompetent and corrupt guardianship court system that exists in Nevada. Are these things related? Yes in the sense that its government vs family but no in the case of Jahi McMath where, according to Rachel Aviv's reporting, the system (after her tragic medical complication) California demonstrated great expertise, thoughtfulness and wisdom. We don't need a theocracy, we need competent and compassionate government.
70
Mr. Douthat and I have different definitions of what constitutes a meaningful human life. To me, human life is about being conscious. I cannot imagine that I would want to continue living if I ever become entirely senile, much less brain dead. Mr. Douthat, though, does not consider self-consciousness the main criterion that constitutes a human life. Instead, he believes that a human being who is brain dead should be kept alive so long as he or she has a pulse.
I ask Mr. Douthat: How can we get along and live in the same society with people who hold fundamentally different definitions of what constitutes a human life? I think we should agree to tolerate differing views. I tolerate Mr. Douthat's definition, even though I do not share it. But I know from his many writings on euthanasia and abortion that he does not tolerate mine--in fact, he believes that I condone murder.
50
It seems that it's human nature to respond to the up-close and personal. People need to know a person's story. The doctors give the thumbs up, or thumbs down, and there is intense interest in the case. Yet when presented with thousands, and thousands of people killed by firearms, fires, traffic accidents, air pollution, lack of health care due to our dysfunctional health care system, people so often just shrug their shoulders. Hey, you can't save everyone! There is no single person to identify with. Nobody you can root for. No joy of seeing the person saved. It's just a bunch of statistics. It's pitiful to see people fighting over a single person with a fatal illness, or non-functioning brain, feeling they are taking a stand for "life." At the same time they are supporting government policies that are basically allowing thousands to die without a robust effort to reduce these numbers. I don't see much of an effort to reduce these anonymous deaths.
44
In the debate over the issue of single-payer vs the Rube Goldbergian system the US has under the description of free enterprise, what gets lost is the fact that each approach has its advantages and disadvantages. Under single payer, every citizen is guaranteed health coverage and in most cases at least in Europe and Canada, the coverage is pretty good. And of course we all know about skyrocketing premiums, costs and deductibles in the American system.
That being said, I became acquainted with a top physician who once served on Hillary Clinton's failed health insurance panel back in the 1990's. He pointed out to me that one should keep in mind that under single payer -- and he used the UK as an example -- they will pull the plug on you much more easily than under the US private coverage system. That single payer builds in a triage policy as a way to keep down costs in a system that unlike in the US, is far more constrained when passing on costs. The Republicans during the debate over Obamacare totally overstated the triage policy by describing them as "death panels." But the Alfie Evans affair clearly shows that although the label "death panel" may be overripe, there is certainly more than a few percentage points of truth, too.
5
Socialized medicine does use triage to keep costs down. But so do we -- we allow people who cannot afford regular medical care to suffer and die because their illnesses are discovered too late or not at all, or because they cannot afford treatment. I might be blind today, if routine -- but not cheap -- annual visits to my eye doctor had not revealed the onset of glaucoma.
7
Sitting here in the UK, we're cynical though that the reason the money driven US healthcare system will take longer to pull the plug is because they don't get any money once someone is dead.
See the debate over mammograms. There is significant scientific evidence that you can carry out mammograms with reduced frequency with little risk than they are recommended in the US and many countries do exactly that. But in a system where providers are paid per mammogram, the argument is made that a high frequency of mammograms are required and the scientific evidence is unreliable.
Hmmmm.
5
That’s wrong and your opinion obviously comes from a person who has no understanding of the single payer system. The Evans case had nothing to do with single payer. In fact, the Evans family asked for a treatment that his doctors believed was harmful to their patient. Under the basic rules that apply to all doctors in the English speaking world that left the doctors with no choice but to ask for a ruling from the court. And the court agreed that the treatment proposed by the parents would be of no benefit to the patient. Because the patient was a minor and in a vegetative state the patient could not make that decision himself.
Absolutely nothing to do with the single payer system. Any ethical hospital would do the same, in the uk or the us.
Your willingness to label this a problem of the single payer system indicates the political motive behind your comment. It’s also an ignorant comment, as is Douthats opinion. In this case the result was a rational decision, based on the best medical opinions available.
The religious and the desperate would prefer irrationality and maintaining the illusion of the living dead - not for the benefit of the patient but for the benefit of others who, quite understandably, can’t bring themselves to realise its time to let go.
6
The British baby had "catastrophic degeneration" of his brain, irreversible, untreatable by meds and services anywhere, the staff attested and increasingly encroaching on the healthy remaining part. Like a Tay-Sachs child, this one had no future, even if the decaying could have been stopped tomorrow. No thinking, no speaking, no walking, no crawling, he was too far gone for all of that, and he would soon have died taken off life-support. And he did. His parents expressed understanding and gratitude for the Health Service and hospital personnel. They were at peace.
We must accept reality.
106
A famous philosopher once wrote: "I think, therefore, I am". Without the capacity for thought or conscious brain activity, the individual becomes a living corpse. That is not a condition I would wish for myself, and certainly would not wish it on others. Terry Schiavo's husband was driven to bankruptcy via the demand his brain dead wife be kept on life support. When he could not longer pay towards that, it fell to the State. Eventually, the State accepted a judge's ruling to allow Ms. Schiavo to be taken off life support. She died a short while after that. Aside from the arguments resembling how many angels can dance on the head of a pin, the issue of selfish use of limited resources to keep a corpse breathing needs to be addressed. No hospital staff straining to care for the viable patients under their care should have to also care for the dead.
7
In my case, the system wanted to keep my mother alive even after she and her doctor had agreed on an advance directive for no more heroic measures. She had had enough after 6 months of hellish rehab and wanted no more. (Full disclosure, to this day I've never seen the advance directive). She had made it clear to me on multiple occasions that she had lived enough. It took some time, with the last crisis (and a lot of abuse directed against me) before they would let her die a natural death. Too often the right wing hallucinates this moral terror where the vulnerable are left to die. The much more common case is that the medical establishment tortures people who have no hope of meaningful survival. We all die Mr. Douthat, it is how we live that matters.
147
I take offense to this article, Ross, not because disagree with many of the injustices you chronical here.
No, it's your sweeping generalizations about how "liberal" values are decimating the sanctity of families.
its a common theme of so many of your columns, but its absolutist. Every week it seems, papers carry stories of families who torture or starve their kids, or drive the whole family over a cliff.
Just as government systems are often bad--the case of the involuntary guardianship was harrowing) or physicians try to arrogate too much power over family health decisions--so are families often unable to properly carry out family responsibilities because of substance abuse, mental illness, or just plain irresponsibility.
And as another example, single people and strong networks of close friends, oftentimes have healthier and more loving relationships and ties than formal families.
in other words, Ross, I wish you would focus on the underpinnings of social and medical conflicts--poverty, unjust laws, lack of separation of church and state, underfunded education systems, and gazillions of firearms--instead of the political "who" you are blaming for many of these ethical conundrums of modern society.
134
@ ChristineMcM (my) Massachusetts
Christine, early every morning I read Dagens Nyheter and the New York Times focusing first on Opinion and comments, the second new at DN. Since it takes much time and much thought to read the article, sample, the comments, and maybe write a comment I increasingly try to find a comment that speaks for me.
This morning, your comment on Ross says everything I might have said, but you closer to the American scene than I say it better.
As for DN a distinctly intellectual OpEd writer takes a position on the Swedish Academy story - don't know if any Times readers are familiar with that - that I disagree with strongly. So far, no comment there worthy of support.
Thanks for speaking for me. In a month I will be on the ground in MA to make my own observations.
Only-NeverInSweden.blogspot.com
Dual citizen US SE
17
"...the family rather than the system gets to make the choice."
Some choices, but not all choices, eh?
126
"In our weakest moments we can hope to be surrounded not just by knowledge or power, but by love."
If conservatives such as Mr. Douthat have their way, love is all we'll have. Not health care. Not aid to the poor or the hungry. Conservatives like Mr. Douthat have gutted the Affordable Care Act. Medicare will be the next casualty. Cutbacks to food stamps and financial aid to the poor inflict pain and misery on the most vulnerable. Where is Mr. Douthat's love for these people? When Mr. Douthat expresses the same concern for these Americans, I will listen. But like all conservatives, Mr. Douthat is very selective as to those lives he deems worthy of saving.
100
There are so many inaccuracies and hyperbolic statements, to say nothing of straw people set up and blown down in this essay, that I have a hard time admitting that its primary premise - if a family exists then they should be given the right to make decisions about their loved ones - is correct. I comment on only one of the many absurd statements that Mr. Douthat makes in getting to his conclusion regarding the "will" of the Medical-Industrial complex. This implies a monolithic culture of like minded professionals with the same goal - aside from more or less practicing with the patient at the center of decisions, there is almost nothing further from the truth. Attend almost any medical staff meeting. or read any medical journal with a pro and con article on what seemingly is a basic standard of care and the idea that Medical Professionals could be acting with a common will about anything, particularly something like depriving patients and families of their right to make critical decisions is laughable. Attempting to get consensus among Physicians on almost anything is regularly referred to as "like herding cats" in the medical community. Your subject is important in its own right and does not need a bogey-man to strengthen it.
25
Where is the disclaimer that the writer is an ultra conservative Catholic in order to give the reader some vital context? The situations are all tragic, but distilling it to the simplistic choices the writer offers is borderline exploitation of the issue for religious reasons.
73
Seems pretty simple really - the British Drs. didn't know how to treat Alfie. The parents found Drs. who were willing to take a look and try to help. What is the problem?
Our knowledge doubles every 13 months isn't it possible that a another set of minds may have new ideas and treatments that might actually have helped?
Alfie lived for 5 days much longer that his super expert Drs. believed was possible. Arrogance. It's hard for me to imagine any parent being OK with what happened here - liberal, conservative, religious or atheist. It's a parental rights issue.
1
The Italian doctors accepted the British doctors prognosis. They were willing to continue to provide palliative care; at no point did they believe or state their help would change the outcome for Alfie. He would still have been left with a destroyed brain.
The case was heard in different courts at many levels. No one could produce any evidence about the diagnosis/prognosis being wrong, despite the family being given multiple opportunities to do so, and his medical tests being available for review by other doctors.
Parents are not omnipotent, they can make mistakes just as easily as any of us can. Someone has to look out for the interests of the child and it's laid out in British legislation that the hospital and the courts both have a duty to do this.
Extrapolating to, "the coming world of post-familialsim," from two or three (or even five or six) isolated incidents thousands of miles apart is a typical scare tactic of conservatives who think they have been appointed defenders of family and family values as an evil government, abetted by a declining society, seeks to strip away all that is human from helpless victims of a godless regime. Want to see families separated from loved ones by a cruel government? Endorse Donald Trump's immigration policies and proposals; then we'll be talking some real numbers.
110
How curious it is that religious folks - represented here by Mr. Douthat - are so quick to point to the imprecision of scientific/medical predictions, but rarely turn that same level of skepticism back on the tenets of faith. True, the medical experts could not provide a precise prediction as to when this unfortunate child would die. If that stands as a reason to doubt the soundness of policy made on a scientific basis, then religion - which is infinitely worse at revealing truths or making predictions - should be completely excluded from any policy-making process.
79
"In each case, the doctors and judges had plausible medical arguments that the limits of treatment had been reached. (Although in the case of Evans, their expertise was undercut by the boy’s refusal to swiftly die, as predicted, when his breathing apparatus was removed; he lived for five days before expiring.)"
The doctors in this case made no such predictions that he would die quickly. They are at a severe disadvantage in cases like this as patient confidentiality prevents them speaking publicly outside of the courts yet the father can come out every day and spout a collection of unverifiable claims about the behaviour and reaction of the medical staff which some of the media are more than happy to repeat as fact.
In the court transcripts a number of the staff suggested it could be anything from minutes to days from ventilation being removed.
90
When a patient's viability is limited to the need for machinery and attendant care, how many families can accommodate either the cost or the housing of such machinery? Very few. How many hospitals are limited in their resources to sustain the brain dead at great cost? Most.
17
Thank you for the facts minus the rhetoric.
5
Why is all about the will of your god until that will interferes with your agenda? For that matter it's not even about family choice if that family choice interferes with your agenda. Ask Michael Schiavo.
65
If it we followed "God's will" alone, none of these people would be alive in the first place. It was a human decision to provide life-saving intervention. It is a human decision to stop intervening when the life is beyond hope of saving. And who is to say that Ross Douthat speaks for God? Perhaps God speaks through the doctors that are actually caring for these children, that it is time simply to give them love and comfort and peace from futile interventions.
23
And I now look forward to your columns advocating for expanded Medicaid and Medicare benefits to pay for the type of home based care you say is best for the elderly and disabled.
Here in the Sunshine State the waiting lists for home based services for the developmentally disabled and frail elderly are years long. (Thanks Republican legislature and governor!!)
241
I believe this is where the part no one wants to discuss comes in to play: if we have universal healthcare, at some point, money has to come in to play.
It’s not that I disagree that families need to (ideally) make decisions together, it’s that if a condition is known to be fatal & said person statistically cannot grow up & contribute right back in to the same system, the likelihood of the necessity of a 3rd party stepping in is almost writing on the wall.
The bottom line is that we are all going to die. If people can afford alternative treatments (& many do bankrupt themselves, both in the US & abroad when seeking those treatments) okay, but again, hard a question as it is, if a heart transplant is going to give a 48 year old man with 4 kids a shot at another 10 years to see them grow up, do you pay for that or do you pay for alternatives that involve personnelle and resources that are going to a baby who ultimately can’t survive to adulthood, or even early childhood?
I don’t like these questions. I don’t enjoy thinking about a life in this way as it does lessen the value of what a person brings to their loved ones. That said, dollars will eventually come in to play. When they do, the question is inevitably going to be: what’s the true cost & is it one society is willing to pay?
18
At least you "get" that these cases DO expose how hard and cynical we have become as a society. In my experience, hospital personnel are yuppies. Young careerists who think family ties are silly, old fashioned, inappropriate for today's world, and they truly don't understand why some of us still love our parents, spouses, or children. As far as the expense, I don't understand why robotics and other technical advances can't lower some of these expenses.
1
Money comes into play regardless of whether or not we have universal healthcare — except for the very rich who are not constrained by affordability. Absent universal healthcare, plenty of people miss out on health care because they can't pay for it, even in situations where there are known treatments with close to a 100% success rate.
5
In the case of the two British children, the question was not about money, but their quality of life as they inevitably died of tragic, incurable disease. Whether or not you can pay for treatment should be secondary to the question: is this necessary treatment or is it medical abuse? Is it ethical to put a terminal child through more pain and intervention to ease the emotional distress of the parents?
The state can force parents to get their children professional medical care even if it's against their religion or they believe in some quack therapy. The state should also defend children from parents who are so locked in the battle to keep their child alive that they cannot accept that hope is gone, and only suffering remains.
9
Saying that America deals with its old people by throwing them in a nursing home might be an exaggeration but it's not entirely inaccurate. For a lot of old folks in America, old age means living in a nursing facility. Not exactly against your will but under the understanding that your family will not be able to provide the care you'll need in your final years because well, they have lives of their own. So you go live there surrounded by old people who are also there waiting to die.
There are other ways of doing it of course. My wife comes from a culture in which it is the young's responsibility to take care of the old. Once her parents become too old to care for themselves, they will probably come live us. It will be a big life adjustment for me, while for her it is just the order of things. America needs more of that. For too many Americans, old age means the old-folks-home scenario. We can do better than that.
6
I think Mr. Douthat is wrong, and that his religious reasons for believing as he does are demonstrably invalid. I certainly don't see living on as a semi-vegetable as a positive outcome or a victory for Jahi. Maintaining physical signs of life in perpetuity does not equate to even miniscule quality of life for a human being. Rather a living death extended over years. That's a horror for the victim.
26
It’s wonderful to care for the elderly at home but should I assume your wife can afford to quit her job to care for her parents? Should I be in the same situation, I know I would not be able to.
5
Jahi is not a semi-vegetable. She is a zombie, an animated corpse without a functioning brain. Her family is abusing her body and her memory.
1
Mr. Douthat, I hope your next editorial will recommend that the tax cuts for the rich and corporations be rescinded to pay for the humanitarian approach you espouse here. Identify which military programs should be eliminated. And finally, inform us as to how much our ungodly high medical insurance premiums will need to be increased for these programs.
Without those answers, your column is little more than magical thinking in an environment where your conservative colleagues prevail.
300
But this the consequence of the money values placed on health care (and thus life) by the GOP. Nine months in utero--sacred. Prenatal care, post natal care, care of the handicapped --no way, we need that money for tax cuts for the rich and "entitlements" for corporations.
My health care has gone up 58% thanks to uncertainties caused by the GOP. The ACA is predicted to rise 98% in the next few years effectively pricing the middle class out of health care if they pay for their own (as almost 50% do).
The GOP has made it clear that if poor, you do not deserve health care, food or help. Only the wealthy need government help so we can accept their crumbs. As someone pointed out: "trickle down" implies that the top of the heap gets the bounty and those further down the hill get less and less.
Vote the GOP out of office this year.
170
No. The GOP did not put money value on care or on human beings. The whole culture has done that. The whole culture is shallow, superficial, and cynical, not the GOP exclusively. Here in the US, a much mocked GOPer named Sarah Palin personally fought a battle similar to the Evans', and she valued her brain damaged child over economic concerns. And Dems mocked and ridiculed her for that. In fact, she was correct about "death panels". Death panels WERE at work in the UK, in both the Evans and Garth cases, and the Obama Administration tried to implement them here in the US, with his Administration's IPAB and MACRA, which would have ended treatment for many critically ill Medicare patients. In fact, several EU countries with "socialized" government health care are euthanizing human beings, some possibly without the victims' consent. In fact, the UK's NHS is government health care. I am an Independent, not a Republican, but the devaluing of human life is NOT the GOP's fault.
Sarah Palin's son, Trig, is not brain damaged. He has Down Syndrome, a congenital birth defect often associated with pregnancies in women of advanced maternal age, such as Mrs Palin. He never would have faced a "death panel" babies with Down Syndrome, though faced with multiple medical issues and mental/educational handicaps, often live well into their adult years these days. Trig Palin has absolutely nothing to do with this discussion as he was never in any similar medical condition to Alfie Evans.
The primary journalistic motivation of Ross’s op-ed today pretty transparently is that of a conservative ideologically railing at the power of an increasingly intrusive state to dictate limits on individual rights to serve its own bureaucratic convenience – and ideological ends beyond convenience, such as the conviction that individuals MUST cede way in all matters to collective interpretation as controlled by elites.
I have a lot of ideological sympathy for Ross’s argument, but so should all Americans.
One should fear the encroachments of bureaucracies on what we always have taken to be individual rights, regarding one’s own disposition as well as that of family members. Some will argue that adherence to state authority is largely what makes a broad-based social welfare state work, and without it the number, variety and complexities attendant to exceptions make such a framework both unaffordable and otherwise unmanageable.
I’d suggest that if the choice lies between sustaining individual rights or a marginally more efficient bureaucracy, then if what is American in us is to survive, we must choose individual rights.
4
What about the encroachments of privately owned, profit-making bureaucracies: shouldn't we fear those, too?
13
Nice sentiments, Mr. Douthat, but you neglect what may be the most significant issue of all: the cost of such medical care. How about using cases like these to insist that affordable medical insurance become the law of the land? So long as the right-wingers in our government get to decide which Americans qualify and which don't (i.e., on how much money you need to have in order to make certain that you and your family get to continue living despite the severity of your respective medical conditions) it hardly makes sense to talk in theoretical or theological terms about the importance of human life.
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stu:
Ross's examples are germane to a trend towards minimizing individual rights to serve the convenience of the state, and much of that DOES have to do with money.
You look at any Euro universal healthcare system where the state is dominant in paying for it, and you have bureaucrats making such decisions every day on the balance between hope and affordability. The underlying premise is that some must die to afford greater protections for the many.
Whether or not we ever get to a universal healthcare framework here -- by either your definition of that or mine -- we will see that dynamic working in it, as well. And judgments will be made based on the personal convictions of elites we empower, as to WHO dies so others may live, and for WHAT reasons.
Ross has a problem with empowering elites to make such decisions over the wishes of individuals. I'm not sure that I fully agree with him, but his is a legitimate argument to offer, and an important matter for us to resolve as a people.
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Except the cases that prompt these discussions have nothing to do with money and everything to do with a judge balancing the interests of a child with that of a family.
The key thing is the child has rights too. Whether that's the right to not die in a case where parents want to refuse a blood transfusion on religious grounds, or the right to not get dragged around like a lab rat for experimentation or sustained because the parents cannot let go when it is in a terminal, hopeless condition and potentially suffering.
As far as money goes, it does impact what overall treatments on offer but is NOT a case to case consideration. Further, even if you want a drug or treatment that is not available from the NHS it is not a problem to get this privately as long as you are a consenting adult.
The issue comes when you are not in a state to legally make informed choices, either because you're a minor or an adult that is unconscious/not sane and didn't leave any prior instructions.
The UK legal stance on this is that your family does not have free reign to do what they want with you, hence the court cases when disagreements happen.
Actually, we do have that European problem here now, as you describe it. It's called Medicare.
Often conservatives aregue that old people on this government insurance program are costing the system too much and should not be given the care they need to prolong their life.
My father who was the first Jew to attend his Jesuit High School back in Poland in the early 1920s said all religions were the same. He arrived in Canada in 1925 and withstood the tribalism when he would say all religions are the same the differences are man made.
My father was always an orthodox Jew but his Jesus was my Jesus and the Jesus of the House Chaplain. I do not recognize Ross Douthat's Jesus, is there a gospel I haven't read written for those who prefer a 19th century American neoliberal liberal?
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I am sure this comment has some meaning --after all, so far five have recommended it -- but it eludes me. And for sure what it has to do with Douthat's column eludes me.
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First, do no harm. Second, do not prolong or extend suffering.
Period.
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Most comatose patients are heavily sedated and on pain killers, therefore are NOT suffering. The "suffering" excuse is just a rationale to get rid of "inconvenient" human beings, and/or make more money from a hospital bed.
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That is wrong. There is always a cost to any intervention. Medications may fix one problem, but often have adverse effects of varying severity. In critical care, the interventions as so invasive that it is almost impossible to imagine that the patients are not suffering. Sedation and analgesia are used to minimize suffering, but use must be balanced between relief of discomfort and trying to maintain enough consciousness so that the patient can be safely weaned off life support. Accordingly, studies have shown that many patients suffer PTSD after a course of intensive care treatment and that their families also suffer PTSD. The unfortunate part is that most lay people who have not gone through it are unaware, and by the time their loved ones are in an ICU bed intubated with multiple lines and drains they are so invested in that course of action (aggressive life-preserving treatment) that they will continue to push for all treatment even if there is little to no reasonable expectation for a good outcome. This is not doctors playing God, in fact most nurses and physicians working in the hospital would not want aggressive ICU treatment for themselves if they are faced with poor prospects for recovery from a grave illness or a terminal diagnosis -one guiding principle considered when treatment these patients is "do unto others as you would do for yourself"
Me, have you ever been in an ICU or seen comatose patients? I have. Even sedated people on painkillers try to tear the tubes out of their throats or rip out their IV's, and have to be restrained. The suffering is real, and in U.S. hospitals, you are far more likely to be kept alive against your will than the reverse.
If you have current, documented facts to back up your claims about "getting rid of" patients for money or convenience, let's see them. If not, stop making stuff up.
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It is at best difficult to look at a picture of a toddler such as Alfie Evans and not be heartbroken for him and his parents. However, what exactly is the point of keeping someone alive who is in a semi-vegetative state, with no hope of recovery? What is the point of keeping someone who is brain-dead tethered to a feeding tube with no hope of ever having any kind of real life and whose responses to any stimulus is vague? Is that really humane? If you really, really love someone, you will let them go, and not hold onto the person who is no longer there. To me, it is like holding someone prisoner. We need to temper extending quantity of life with the need to extend quality of life.
How much money spent on futile, extraordinary means of keeping someone alive, could instead be spent on helping others who desperately need medical care for conditions that can be treated? I found it ironic that the Pope wanted to extend care for Alfie Evans, yet turns a blind eye and a closed pocketbook to all the millions of Catholic children in poverty-stricken countries who could benefit from the vast wealth of the Catholic Church.
If you want to save lives Mr. Douthat, you could start by working toward insuring all in this country have access to adequate health care. You would also save lives by working toward insuring all who need it, have access to nourishing food, and a roof over their heads.
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How do YOU know who has "hope of recovery"?? Why do you want to kill even helpless human beings who are in SEMI "vegetative state"? Have you ever loved anyone in your life? How is your position any different from Nazism?
Mr. Douthat, it's heartening to see that you are finally coming around to the pro-choice position. Difficult medical decisions should be left to the competent adults, acting in good faith, who are most affected by the decision, instead of the government. Or the church.
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It is more than a little uncomfortable to see political interference with the most painful, private life and death dilemmas imaginable. If any provider is willing to try treating someone with an uncertain future, they should be allowed to.
But the roles have been reversed too, from the situations described here. How about when then-Governor Jeb Bush meddled with Terry Schiavo? Or when Sarah Palin described end of life care as "death panels?" Those were just as inappropriate.
Medicine should operate independently of outside influences, no matter the circumstances.
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and who exactly is paying the enormous cost for this care?
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Not Ross or any of his English compatriots. They object to ehalcare for non billionaires!
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And yet this is the same columnist who expressed the view (“Among the Abortion Extremists,” 9/24/2011) that elimination of the death penalty would be a bad thing, even if some innocent people are executed. Apparently Mr. Douthat decides whose life is worth saving, and whose isn’t.
Children who have no future beyond a brief, semi-comatose consciousness are awarded the “right” to continue their suffering as long as the parents appeal to religion. Considering that these parents believe that heavenly delights await the child, you’d think that extending its withered mortal existence is gratuitous torment. There’s no right, parental, religious or otherwise, to maximally inflict pain or continued non-existence on anyone.
Instead, Republicans are apt to showboat in cases like Terri Schiavo's, and refuse to remove a feeding tube from a woman who was as far gone as it was possible to be without being dead. This ghoulish tendency is not only repugnant, it also violates the rights of the family just as much as the cases cited here.
Likewise, the elderly wind up in facilities because most people can’t afford the skilled nursing care or medical equipment to keep them at home. Why is that?
If religious columnists want to relieve suffering, they might want to support stem-cell research, allow women to abort abnormal fetuses and provide medical coverage for elder care. But that might raise taxes on billionaires, and good God, we can’t have that.
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"Death panels" are already a fact of life (no pun intended) in the UK, and we in the US can expect to see them any day now.
Really sick kid? Pull the plug.
Old person costing too much under Medicare? Pull the plug.
And when will it come to: Taking too much and producing too little? Pull the plug.
Ask not for whom the bell tolls....
Do you really want a panel of faceless bureaucrats with different religion, ethics and attitudes--and likely tasked with quotas to meet--deciding what will happen to your parents, your siblings, your children? To you?
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"Death panels" are already a fact of life in the US too: sometimes they are insurance companies that will not cover, sometimes they are lack of coverage altogether; comes to the same thing.
Really sick anyone who can't afford to pay: the plug gets pulled through neglect rather than a direct decision. Once again, comes to the same thing; the difference is mainly a matter of style.
Please stop the religion-bashing. There are subtleties in each of these cases that you are missing and they don't all come down to religion. And in English law and culture the rights of the individual are not automatically paramount, unlike the US, so legal questions are weighed differently. Families may desperately want to try any and all interventions, even if they prolong suffering, out of emotional denial of their loved one's condition. The state may sometimes intervene for the sake of the loved one. In England, as in my native Canada and other western countries, the government isn't automatically wrong. Nor is religion.
ALSO - don't for a moment assume that all people of faith want to cut taxes on billionaires. This is a peculiar AMERICAN phenomenon of a SUBSET of evangelicals who are on the US political right. To smear us all with that is just plain bigotry.
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Yes, I agree, give families ultimate choice on ways to keep their children or parents alive and taken care of. Take the government stewards out of the equation. But, don't stop there, also give women ultimate choice on what they want to do with their own bodies when pregnant. Right or wrong, give them both legal choice. And prop up a medical system to support that choice. And not just for those who can afford it.
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"Such a system is custom-built for the coming world of post-familialism, the world bequeathed to us by sexual individualism and thinning family trees. "
*****
Ross, you make reasonable arguments up to a point, and then spoil your point by returning to your characteristic prudishness towards sex.
Marriage and commitment does not appear to be in decline among the educated - only among the uneducated. Didn't Charles Murray make that exact point about a component of the modern GOP base in a relatively recent book?
A commitment based on love that involves children is a good thing - and yes, there are instances where the medical and judicial establishment can be full of themselves, and wrong.
Perhaps the best way to counter the arrogance of a professional establishment is to supersize our emphasis on education, including the opportunity for lifetime learning, so that every American is up to the task of making informed choices in these seemingly tragic situations.
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Mr. Douthat conflates some quite different situations, in comparing Nevada's treatment of competent seniors with patients who have little hope of recovery. The good question to ask in cases like Alfie Evans' is "What patient are we treating?" Is it Alfie or his parents (or people like Mr Douthat with political agendas)?
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We, or our families (birth families or chosen families) should have the right to make choices about continuing OR terminating care. We should have the right to humane and assisted suicide, if our hope is irretrievable. We should have the right to reproduction, to birth control and to abortion, according to our own assessment of the situation before us.
All these are moral choices, not scientifically determined necessities. We are grateful for the science that can inform our decisions, but we rightfully resent the bureaucrats & the holier-than-thou politicians who take the choices away from us.
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Martin
I agree with your list of rights we should have -- but only for the individual. Whereas you are arguing for your right over others' lives: those of your family.
You seem to disagree that your relations should have the right to society's protection against you.
Those who argue as you do essentially believe you 'own' your families, precisely as slave-owners own slaves or pet-owners own pets.
Your argument has been used to justify wife-beating, honor-killing, all sorts of horrific child-abuse, child-killing (e.g.: in ancient Rome, the father had the unconditional right to kill any child, even a grown one) & to refuse treatment of any kind for a child on religious grounds, which still happens today in various sects & includes leaving them in pain or refusing to allow birth defects to be corrected, because they are God's will.
We've also been reading lately about two examples of long-term, egregious child abuse in what appeared to be happy families. Children starved, beaten, imprisoned for years & years. Begging for help which is not given because they belong to parents.
Not to mention many sects who deprive children of a standard education in order to restrict their future lives.
I don't believe in the tyranny of families over their members any more than any other tyranny.
I think society should protect all of us from any of us.
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I don't believe in magic or miracles. I believe in evolution and empirical evidence. I don't believe anyone has the right to dictate moral choices the Creator has endowed for me to make.
Today I must agree with Ross Douthat that the decisions we make when it is impossible to know the correct answer must include love as the balancing agent.
My knowledge is tempered by doubt, my power is limited but my love and understanding grow every day and further diminish my knowledge and understanding.
I thought that that was the message of my brother Jesus but evidently my brother Ross doesn't believe in net neutrality.
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