Thank you for this article. My wife suffered a ruptured brain aneurysm, as well as a pretty devastating stroke while she was in an induced coma, three and a half years ago. She was 46. I received two different but very considered opinions from two different surgeons. One more hopeful than the other. Of course, I clung to the latter. After nine months in various hospitals, my wife is still with us, and back at home. I am so grateful. But...my wife is permanently disabled, both physically and neurologically and will likely require constant care for the rest of her life. Life has become hard both for me and our two children. Caring for her has come at substantial financial and emotional cost.
I agree that an advance directive/POA is absolutely critical for these situations. I agree that whoever has to make these life or death decisions should be encouraged to consult with a friend or a family member who is also a medical professional if at all possible. The decision very difficult for normal lay people who are more likely to be driven by emotion. Finally, I would say that I think I understand why veterans often prefer not to discuss their experience with anyone other than other veterans. The only people who I share the truth with are my children and the carers that I know through a carer support group.
The worst is, the stroke affected her personality. I love the way she is. But I miss the way she was. We are caring for her, and grieving at the same time.
5
Different types of brain injuries confer different prognoses. The gulf between physician and layman understanding of this is huge not only because of the knowledge void but also the emotional void that comes with a drastic devastating alteration of ones life.
Not everyone has a health care professional in the family.
Not everyone can have faith in a health care
system that is suspect and the deluge of professionals one has to deal with in urgent fashion.
Sometimes direct discussion can be perceived as dismissiveness or neglect no matter how artfully performed.
This is the price of being mortal.
2
Compassionate care when making these difficult decisions at end of a life that is not expected to return to conciousness is just as important as "doing all we could" on a technical level. I support Dr. Stern.
5
wonderful thoughtful article. so sad that so many physicians and families hold on to a shred of hope when the facts say otherwise, keeping already dead people on machines or creating people in persistent vegetative states. So many phyisicians (usually neurologists ) I have known will confirm totally dismal prognosis among colleagues, and then sugar coat for the families creating false hope.
1
Prior to any family member operation, I always read the medical textbooks on topic. I am not an MD but a lawyer who keeps up with what our fellow professionals do. You will always have someone crazy in any family who wants to keep the brain dead " alive" or people who are terminally ill with cancer suffering needlessly. I always advocateshowing relevant portion of the medical textbook, showing the test results (MRI, ECT or CT scans) and surgical notes to the family ones ( if the person who has the medical POA , advanced care directive and DNR oks this action ) and then having at least a medical "Fellow" if not the Board Certified Physician explain to the family why this is not a situation to torture the patient, but to have compassion and let them go peacefully. This is also why you need an advance care directive and and do not recucsitate copies in the patient chart, on the refrigerator, and with the patient posted to ensure that The EMT, Paramedic. ER etc. do not "save" the person who does not want that type of prolonged agony.
1
Perfect narrative of the situation many of us have experienced in our practices in healthcare.
Families are faced with seeing a perfect human degraded and locked into a nightmare. Palliative is the best decision. Not more intervention to keep them with open airway and nutrition. We love them but that isn’t a life. Let them pass into rest.
4
As a nurse who works in a neuro ICU, this article is all too familiar. This was a beautifully written piece as many of my colleagues feel the ethical dilemmas mentioned daily. How do you explain to someone that their relative is brain dead when their heart still beats, they are warm to touch and they look as they are sleeping? How does a nurse/medical professionals deal with the conflict of knowing what a patients ultimate outcome will be yet continuing to do everything as when other medical professionals (doctors) rather give false hope then are willing to have a honest conversation about their loved ones prognosis? Although death can be a taboo and uncomfortable subject, it’s really important that people talk with their families/health care proxies/ power or attorney about their end of life plans. It can make all the difference between a peaceful death verses prolonged pain and suffering.
3
This hit me right in the gut
"Yet on the morning we had planned to withdraw treatment, one of the neuro-I.C.U. specialists presented a scenario in which Pat might wake up, become able to walk with assistance and participate with his family. "
Without Dr. Stern's and Dr. Lekovic's ability to re-emphasize that this "specialist's" opinion was essentially a pie-in-the-sky scenario
families that don't have prior medical knowledge tend to latch on to these kinds of exchanges. I know mine did. My dad had advanced Alzheimers' and had fallen and fractured his hip. He had essentially stopped eating prior to his fall and as his medical POA and healthcare proxy (and equipped with a PhD in biology and working in a biomedical environment) I had decided against a G tube. Because a well-meaning OT had mentioned something about my father being retrained to swallow and eat, which was ludicrous because he wasn't even going to be able to rehab the hip because there was essentially no cognition left (akin to an acute brain injury you might say), my family blames me for my father's passing.
7
@MomT I’m sorry for what you endured, but you did the right thing and saved your father from suffering. It’s astonishing how many people won’t let go in spite of the degradation they see it before them. It’s all important that families have these discussions long before the incident occurs.
4
My sister was in a car accident when she was 20 years old. She was then comatose for 7 years before she died. I was a teenager when it happened and to be honest I’ve blocked out a lot of what happened with the drs etc (some were kind, many were not), but I do know that we weren’t willing to let her go. My parents are pretty religious and we also felt we had to give her the chance to recover if possible.
It was pretty obvious, even to me a 16 year old, after a few months that she wasn’t going to wake up and it was a very tough seven years that followed. My parents never gave up hope though- which was also hard to deal with. When she eventually died - it was like experiencing the initial accident all over again. There was no relief - just all the loss and pain all over again.
That was all over 30 years ago and when I think of the stress and pain of those years - I would not make that choice again.
I never had children and a large part of that decision is from those seven years. I couldn’t bear the possibility of that happening to my own child and going through that experience again.
9
Dr. Stern, while I wholeheartedly agree with your comments, I have to play devils advocate. My uncle suffered a catastrophic ruptured brain aneurysm and was on life-support at the hospital. He was young, in his 40s, and this was a very sudden event. The family did not have time to accept the ultimate prognosis because the hospital was pushing them to withdraw care. My uncle was taken off life support within 48 hours of arriving in the Neuro I.C.U. My dad went to his grave thinking that the hospital killed his brother by taking him off the ventilator too soon, and did not give him a chance to get better. Sometimes we need to keep these patients alive for a few days or week, as you described with your brother, to give the family time to come to grips with the prognosis. This way they won’t spend the rest of their lives regretting their decisions to “pull the plug” just because they were pressured to do so by physicians.
The key here is that EVERYONE needs to have an advanced directive so it does not fall to family members to make those final decisions. When my dad was not recovering from bypass surgery it was easy for me to say, “dad said if this happened to take him off the ventilator”. Not one of my family members objected. We all knew his final wishes because we had discussed it with him.
13
This article is so timely, and so very raw, for us. Our 14 year old daughter was in a car accident last August and suffered a catastrophic brain injury. We knew there was no hope of saving her, and opted to remove measures after family and friends had the chance to visit and comfort. The next morning she was confirmed brain dead, and we were approached for organ donation. Measures had to be restarted, but with the intention of saving her organs rather than any hope of saving her, which was a big mindset change. She ended up saving 3 people, plus potentially many others with some going to research. In a bizarre way, we feel more comforted with the 3 days we got to spend with her, rather than the abrupt tragic end that could have happened at the time of the accident.
16
Susan, would there were more I could do to ease your suffering. Thanks for sharing your story. I agree that organ donation is a way to make such an unbearable situation a little less dire. My heart goes out to you and your family.
12
@Susan You’re a generous and loving person. Thank you for sharing this tragic story, which you manifested a positive outcome for other families. I’m sorry for the loss of your daughter.
4
At least you have a neurosurgeon in the family, so most healthcare workers (other doctors, nurses ect) will at least listen to you...the rest of us must try to find this all out ourselves, during the most horrible point in your life, while trying to navigate burnt-out 'care-givers'...
yeah, things need to change---for sure!
3
Beautifully written. Thank you for brining this topic to the public. These difficult, honest conversations about quality of life in the face of catastrophic neurological injury are happening in Neuro ICUs across the nation daily. As health care providers we always wish that individuals had talked to their families openly about their wishes at the end of life or in the case of devastating illness, but this is rarely the case. I hope that this piece encourages people to talk more openly about this topic. Thank you.
7
My heart goes out to you, Susan. I am glad I was able to offer you some small comfort in the immensity of your loss.
3
Thank you Dr. Stern for helping me understand the logic of treating patients who suffer devastating brain injury.
Our family was recently confronted with the terrible loss of a 19 month old child who was very suddenly diagnosed with leukemia, incurred a white blood cell "blast" and bled into his brain. This happened before treatment could be determined and administered.
The pediatric oncologist at All Childrens Hospital in St. Petersburg, Fl. met for an hour at 1 AM to discuss the situation. Accepting his interpretation was very difficult for a family struggling to critically accept the child's condition and future prognosis for a cure. However, his concern was very comforting to us.
After 2 days we accepted the doctor's advice and took the baby off life support. These decisions are very difficult to make and I encourage any palliative care and counseling that can be administered . I understand the struggle families face making these decisions and the grief they must endure.
8
The following statement in this article is pure dross, "When the patient’s brain function has ceased, bodily death inevitably follows, no matter what we do. Continued interventions, painful as they may be, are necessarily of limited duration. Generally, we can keep a brain-dead patient’s body alive for a few days at the most before his heart stops for good." Physicians should know better, sadly many don't, that brain-dead patients can be maintained for months, even years, and some patients recover. The topic covered in this article is important, but misinformation promulgated by a physician in mass media is a disservice to its discourse.
1
Please refer to the discussion I had with Tricia earlier on this topic. As I indicated, the patient we were caring for had uncontrollable intracranial pressure and herniated due to a severe brain trauma (gunshot wound to his brain) leading to failure of his medulla and respiratory and cardiac control centers. In this instance, patients cannot be kept alive despite all heroic efforts. Tricia’s point and, I suspect yours as well, is that patients with a global ischemic or hypoxic insult who have not herniated due to a traumatic brain injury may not have complete brainstem failure as in the earlier case and that these patients may continue to survive.
17
@Greg Maguire, Ph.D.
I'm a neurosurgeon. Brain death is a legal construct.
In 1981, the President’s Commission proposed a model statute (Uniform Determination of Death Act) determining death by either irreversible cessation of (a) circulatory/respiratory function; or all functions of the entire brain, including the brainstem.
It was adopted by most legislatures and supported by courts.
States vary. In CA, brain death is determined by two physicians. In VA, just one.
In 2010, American Academy of Neurology updated the guidelines for more uniformity.
The clinical criteria for brain death imply brainstem death. The brainstem is that part necessary for consciousness.
It’s plausible islands of viable brain tissue remain even with brain death. Still, brain death (brainstem death) is defined legally using medical criteria and judgment. Society can press to change the definition of brain death. By consensus – at least among most MDs, we’ve defined it for yrs using the neurological examination.
The deeper question is what if a handful of pts, based on current criteria, with heroic clinical support made a one in a million functional recovery. Would we keep all pts on full support for weeks? Not harvest organs for transplant?
Until we develop an updated medico-legal consensus, we’re stuck with clinical brainstem examination with supplemental tests as the determining criteria. Brainstem death = brain death = legal death.
Dr. Stern has his facts right.
9
Thank you for sharing your personal and professional experience. It is so instructive in how to best support patients and their loved ones charged with making decisions nobody wants to make.
5
When my father was diagnosed with a neuroblastoma, his care at Sparrow Hospital in Lansing was outstanding. They have a dedicated high-level Neuro ward, and their well-coordinated support was above anything I've ever experienced in any hospital. His excellent neurosurgeon sat down with us to give us the bad news, and when we hesitated she asked my father If he would like to know what she would do under similar circumstances. Something I never expected or have experienced before in human medicine. They involved the palliative care service immediately, and were both compassionate and helpful in helping us make plans to take my father home.
the only glitch came when his own regular physician started pressing to have Dad admitted to sub-acute rehab, and work to "Fight this thing", even after specialists made it clear that at 84 treatment would not result in any acceptable quality of life.
If we had not been so well supported by the hospital staff, I can see where families could easily be pushed into making decisions contrary to their loved one's own wishes and their best interests.
16
Thank you for this article. I recently read the suggestion that we use the term "mechanical support" rather than "life or life-sustaining support".
Even knowing the patient's wishes and understanding the medical futility of pursuing intervention, it is so very hard to withdraw life support. It might help to understand that we're withdrawing mechanical support.
15
@Ruth Rolander When we're talking about intensive care management of people with diagnosed brain-death, there are those who feel that calling it "organ support" is more accurate and less misleading to families and staff than "life support." As long as the person's brain might still be functioning, I don't think anyone would object to calling the ventilator and associated treatments "life support."
@Tricia
Respectfully, I think Ruth Rolander's point still stands even if the person is not brain-dead. The issue is whether the machines are keeping a body alive so it can heal enough to possibly return to a functional state, or whether the machines are artificially keeping a body alive which has reached its point of natural death. The second situation can apply to people whose brain is still working. I don't want to find myself in the second situation.
4
@Madeline Conant Patients who require support on ventilators (and/or vasopressors, and/or ECMO, and/or balloon pumps, and/or ventricular-assist devices...) would die without that assistance. So it's routine in ICU's for that level of intervention to be called "life support," always with the hope that people will recover enough not to need it one day.
1
While I agree with the essential message of this essay, as a retired intensivist, board certified in palliative care and long-time ethics committee chair, it pains me to see a doctor who should know better perpetuating the myth that "when the patient's brain function has ceased, bodily death inevitably follows...a few days at most." With excellent organ support (ventilator, tube feeding, cardiovascular support and the like) brain dead people have been successfully maintained for months and even years. Some readers may be familiar with the pregnant brain-dead woman who was supported for months until her fetus reached viability and was delivered by C-section. The controversial case of Jahi McMath is almost certainly another example, and there are case reports of other brain-dead (not just vegetative or comatose) patients sustained by such high-tech interventions for years. I personally do not believe that long term organ-support for the brain-dead is in the individual's best interest, nor society's, nor can I believe that it is good for any family in the long term; but neither is misinformation helpful to anyone. Public discourse about the heart-rending ethical and emotional challenges surrounding life-support for people with terrible neurologic prognoses is tough enough as it is.
15
I stand corrected and appreciate your comments. I was generalizing from the case of a patient who has herniated due to brain trauma with uncontrollably high intracranial pressure. In this instance, the patient has progressive brain failure, including medullary respiratory and cardiac control centers. When this occurs, it becomes impossible to keep someone’s body alive despite all continued heroic efforts and eventually the person’s body and other systems will fail. This is what occurred in this case. You are correct that if the patient’s medulla oblongata does not fail, then a patient may continue to survive. I do think the instances you point to are the exception rather than the rule. They are, nonetheless, troubling and cause for concern. I, too, sit on our health system’s ethics committee, and do agree these situations add to the complexities of patient care and decision making.
14
@Joseph Stern And thank you as well for enlightening me about a situation I was not familiar with. The ICU I helped manage during my career was med-surg and did not handle serious neurotrauma. Those of our patients who suffered brain death often arrived at that state after global ischemic injury, typically following resuscitation for cardiac arrest, and were not that difficult to maintain on organ support. Brain death is a hard concept! If contradicts all our common experiences of death. How can it be that the warm, alive-looking, and beloved body on the ventilator is only a shell, the human being already permanently gone? When a well-meaning staff member tells a family that their loved one's "heart would give out in a few days no matter what we do," and that's not what happens, the family has every reason to further mistrust the diagnosis, potentially setting up painful struggles. Added to that are ambiguities and inconsistencies around criteria for diagnosing brain death, and the way that the goal of organ donation can be perceived as a conflict of interest. It's good that this subject is now being comprehensively re-visited!
4
Having our parents wishes in writing made it easier to refuse extraordinary medical care - Still painful with the finality of the decision.
12
Good for you for putting your parents wishes above your own struggles. That’s love.
11
I am an Intensivist in a Cardiac ICU and I wholeheartedly agree with this article. Death is inevitable but no one ever wants to talk about it. Why? It is a part of life and the more open we can be about it, the less painful it will be. Deaths that I see in the ICU tend to be more abrupt and catastrophic but there are still many that languish in the ICU. I am not religious and I do not believe in miracles but I do believe in hope. However, what do you do when all hope is gone? How can we as clinicians help the families through those difficult times? If the patient is dead then it is the family that we have to help with healing. I have sat through many family meetings regarding the passing of a loved one and one thing is for certain: family members want to be heard. Most people are reasonable but the acute shock of the situation can make it very difficult to let go. We need to hear their story, the story of the patient and their relationship and guide them through the process of accepting a futile situation. Often it helps to establish what kind of person the patient was and what kind of life they would have wanted to lead. This is where palliative care can be the most helpful. They can establish a rapport and help ease the family through the arduous task of letting go. This is an extremely difficult thing we do in medicine, especially in the intensive care world. When my time comes, I can only hope that my loved ones would be able to make a well informed decision for me.
27
@Mark W I have instructions for DNR, no ICU, etc. I have been quite explicit with everyone, particularly my health proxy and the alternate. I have the info on my refrigerator, in my PCP's office and in the hospital data system. I still worry something may intervene and throw that all up in the air.
12
@Mark W
You are spot on Mark. As a patient advocate I can attest to the needs of he family to be heard and understood. Unfortunately this is not a common occurrence. A good palliative care team can make all the difference, and a compassionate caring social worker is a godsend.
8
@Mark W
Thank you for the work you do, Dr. Mark. As a palliative care NP, I appreciate the shout out to my specialty and how we can help. If I may make 1 suggestion--palliative care is most effective when our teams are involved as early as possible in the serious illness disease trajectory. It gives us more time to establish rapport and trust, help with symptoms, get to know pt/family as human beings--rather than being brought in at the eleventh hour as the "death and dying team." We are capable of this very late stage care as well, but we are much more effective when we have already had a trusting continuity relationship with the patient/family. Consider early referrals if your institution has the resources for this.
9
I just turned 65. I have had a medical directive and POA since I was 40. We are all going to die - it is just a matter where and when. I am caregiver for my 87 year old mother. Her directive is stuck to the front of the refrigerator. Why people are so averse to getting theses documents is beyond me. Having them gives me some assurance, or at least hope, that MY wishes will be carried out - not those of an institution or a physician I do not know. Once a person is checked into a hospital or a skilled nursing facility, you are then at the mercy of the hospitalist, doctors on call or the nursing facility's roving Dr. who often isn't the best the profession has to offer. The long time primary care physician who knows the patient is basically out of the picture unless you are discharged. I know this from several medical incidents with my mother - none of which were life threatening, but still required a considerable amount of care. What I found is you must be direct, pro-active, ask questions and throw a fit if needed. Since I have no children and my niece lives 2000 miles away, am certainly hoping for a quick demise, as without an advocate in the room you are at their mercy. The bottom line is acceptance that you will die, your parents will die - we are not immortal. Palliative care should be emphasized much more than it is.
22
As a neuroICU physician, this an all too common scenario. Prognostication after devastating brain injury has been and is now more commonly recognized as tremendously challenging, as this story exemplifies. Such a challenge is further amplified when not only disability but quality of life are considered in the exercise of prognostication. Those 2, disability and quality of life, don't always correlate in the way we commonly anticipate in a state of health. The normalizing of prognosis uncertainty when facing such decisions will hopefully lead to less conflict and regret. Neuropalliative care and research in decision making have the potential to aid in the process.
11
During our 40 year marriage, my husband and I had many conversations about our wishes if such misfortune arose, so when the time came I had no doubts whatsoever about what to do. After he had an event and a clot was found in his brain, the neurosurgeon went in to "grab" it. The clot broke into pieces, killing the left half of the brain. Twenty-four hours later, after envisioning this articulate, brilliant man bedridden, nonverbal, and without use of his right side, the news got even worse, but we were fully apprised at every turn. We were fortunate to have compassionate doctors who explained clearly and answered all our questions. The ICU nurses cried with our family as we met with the hospitalist for the final time. As agonizing as the experience is, I cant imagine having to also deal with resistance from any quarter. Death came within minutes once the machine was turned off. This article was published on our forty-first wedding anniversary.
57
Marti Mart,
Cruelty is never a good and just option when caring for patients and their families regardless of the circumstances of ones own conflicts or deficiencies.
3
It is so important to inform family members what your wishes would be in case you suffer an illness or injury that leaves you unable to recover. Make a will, name a health care proxy, sign a DNR and donor statement. Then enjoy life knowing you’ve done your best to prepare, hoping they’ll never have to decide for you.
14
I am reading this article as I sit to my father who has been in the ICU for the last 30 days. We have experienced every single emotion imaginable—hope, dread, optimism, confusion, uncertainty—sometimes within the same hour. Suffice it to say, all of the doctors were hesitant and medically unsure of what my father’s likely outcomes would be. Thus, we proceeded with the tracheotomy and the PEG tube, providing mechanical breathing and nutrition. Yes, those are the turning points where we did not know whether we were prolonging suffering or working towards rehabilitation. Some hospital staff emphasized the word “temporary,” as in “temporary trach” or “temporary PEG,” as if they would disappear when my father got better. But, the truth is, I have found those two items to be a very dangerous and slipperily slope. We are withdrawing care tomorrow, but I will say that, ultimately, nature finds a way. In our case, the infections (likely hospital acquired) would lead us to withdraw further invasive procedures.
42
Sending love to your family during this difficult time.
26
I am so sorry for you and your family. I am sure today will be very tough. I hope, in some small way, this article has helped you, if only to know that you are not alone. That is one of the cruelest parts of this journey. It makes you feel as if you are on your own as you struggle to make decisions and grapple with your new reality. That is why an open discussion of these issues is so essential. My heart goes out to you and your family.
28
We never withdraw care—only treatments. We always care for the patient, even after they have passed.
33
Ask the tough questions. Often, doctors take their cues from the patient (if they’re capable of speaking), or the patient’s family. If persistent, focused, yes-or-no questions are not asked, doctors often don’t share hard truths.
It’s scary to say, “How long do you think he will live with this medical intervention. How long will he live WITHOUT it? What will this add to my loved one’s quality of life? How many people get better after this kind of injury/illness? Have you ever heard of anyone making a comeback?”
Doctor’s are trained to keep people alive. Sometimes, they will gently explain options and likely outcomes, but patients and their families must insist on honesty, even if it means hearing bad news. And, it’s crucially important to tell friends and family what your wishes are in the event of a devastating medical crisis. Write it down! Make sure it’s handy and that your doctors have a copy. Don’t put it off! Get it done and then go out and LIVE!
15
@Kathryn : The physician I'm most grateful for when I had to make this decision for my husband and felt as if I was killing him is the one who said, "Look, we are interventionists. Our inclination is to do everything. But your husband also has bladder cancer. He is not currently being treated. He's had two more strokes since he's been here. We have been unable for two weeks to wean him off the meds without him having more seizures. He has made clear his wishes to you. In this case, withdrawal of care is a compassionate and loving choice." Up to this point I'd disliked this guy intensely for his brusque manner. But he cut through the pain and uncertainty to get to the real issue -- what my husband would want.
25
We never withdraw care!!! Stop using this phrase. We withdraw TREATMENTS that are no longer indicated. We ALWAYS provide care. End of life care is still CARE!
22
In an important piece about brain death, not one word about organ donation?
Due to the selfless donation of organs from grieving families, around 40,000 people are saved each year.
Indeed, one donor can save up to eight lives.
Please consider organ donation if your loved one is ever in this terrible situation.
Susan
Liver Transplant, 2015.
40
While organ transplantation was beyond the scope of this article, I appreciate your bringing focus to this important topic. One of the beautiful features of these comment sections is that your voice is now a part of this ongoing discussion. Congratulations on your successful liver transplant. I do think that organ donation is a way to heal and to know that something good can come in the face of such otherwise painful loss. Pat was not a candidate for living tissue donation, but he donated organs (skin, bone, corneas) after his death. This was important to honor his legacy of caring and compassion while alive as well as a gift for his entire family in a moment of intense grief. Thank you for sharing your story.
17
@Joseph Stern Thank you Dr. Stern for your beautifully written article about a topic that we will all undoubtably be faced with at some point. And thank you for your compassionate responses to those who wrote comments. Sending warmest condolences for the loss of your sister and brother in law.
15
My husband fell off his bike and sustained a traumatic brain injury in 2016. Poor communication between the social worker (who gave us false hope), and the doctors made this devastating situation so much worse. Somehow it took weeks to get a CT-scan which revealed extensive and hopeless damage to his brain. He never regained consciousness and we let him go 27 days later. I will never understand why we were put through this needless torture for an outcome that was inevitable. The nurses were wonderful and several tried to give us clues, but no one was able to tell us the reality of the situation until the head of the department was back in town. I donated his brain to research which hopefully will prevent others from going through what we suffered.
44
I am forever grateful to a Long Island neurosurgeon who was compassionate and present to my family in 2003. When we asked what he would do if it was his father in the condition of mine in the ICU, he said, "I would let him go."
Other staff was already prepping him for feeding tube without discussing it with us.
Supportive adminstration and ICU RNs helped us navigate the rest of that week that felt an eternity. My father was not conscious but we did get to speak to him, for which I am also very grateful.
33
My older brother suffered a fall on October 30, was helicoptered to a level 1 trauma center, hospitalized for weeks, and is now in a care facility. He is mostly awake, can speak, has significant memory loss and confusion, but generally knows his family and visitors, although he cannot yet walk or take solid food. He has tremendous family support and good medical care, but the outcome is uncertain and his placement is about to become very costly. There is no good answer but to wait and see.
18
Six years ago my husband landed in neuro ICU from a stroke four weeks after a cerebrovascular bypass surgery. He had also been in treatment for bladder cancer. He wasn’t brain dead, but could not be taken off anti-seizure meds without going into seizures. He also had two more strokes while in ICU. After two weeks my choices were trache-and-PEG or palliative sedation with no further intervention.
I was “lucky” in that he had an advance directive in which he had made clear that heroic measures were not to be used. He passed away 20 minutes after being taken off the ventilator.
Anecdotes of people who made partial or complete recovery are like a knife in the gut to those of us faced with such decisions. We second guess ourselves forever even when we know what our loved one would want. Now I am alone and I just hope that if I am ever in that position, a compassionate neuro team will acknowledge that it’s time to stop.
57
I am a neurologist with 42 years of experience who quite recently was hospitalized for 3 months with the devastating sequela of an acute intracranial hemorrhage. My wife was my savior but also an occupational therapist who served as my director of medical and ecumenical care. It was not at all certain that I would rally to a level of functional capacity consistent with what I had always demanded. She made it clear that my will was one of preservation of life only if I was able to return to effective participation in what gave my life meaning. This was a positional shared by my wife. I am grateful to my neurological attending for instantly understanding what limitations I would and could not accept. What we learned is that the "medical team" is actually a colony of individuals not all of whom are capable of intimate communication even when the patient and family are part of their own fraternity.
54
I am so sorry for the losses your family had experienced. Thank you for sharing your story, my heart breaks f y
16
I’ve been faced many times with patients in the ICU and families grasping with the sense of it all. Distilling this very complicated situation in a comment section defies logic. I would say that my goal was always to point out that while the hope of long term recovery to their pre hospital function was likely lost, not all hope was lost. The hope of reconnecting the family, the hope of not leaving things unsaid, the hope of expressing unstated feelings still exists. There is still a window of hope that could never have existed otherwise.
32
@Intrepiddoc
What a beautiful comment.
It reminded me of when I attempted suicide while in college. Even though I was completely unresponsive, I remember hearing the paramedics say that I wasn't going to make it and that it was his second suicide that week. I remember thinking, "I can hear you even though I'm not responding to anything."
The next thing I remember was waking up in a hospital room, sitting on the chair was the friend/professor who found me. He said the paramedics didn't think I would pull through. But I did.
I guess my point is that even though someone is lying in hospital bed, unresponsive, I think that person can hear those around them. I think all the love and kindness and compassion that can be spoken in words or felt through a held hand can be felt by the person who is dying. Sometimes the greatest gift a person can give another is to tell them that they are loved and how important that person was in your life.
Sorry for rattling on. Deepest condolences to all who lost a loved one - under any circumstances.
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@Marge Keller
Thanks for having the amazing courage to write about this. You are a very brave, wise Woman.
My deepest respect.
39
@Phyliss Dalmatian
Thank you dearly for your kind and encouraging words. Over the past few years, I've come to appreciate and value your words, not only as a friend and co-commenter, but as an inspiring role model. Thank you again for always having my back and various other body parts. You are a true gem PD. And a hearty bark bark to your pups.
9
Years ago, my husband and I filled out the necessary DNR paperwork in the event one or both of us ended up in such a predicament that would warrant someone to "pull the plug."
The people we chose are close friends. They also realize that they would not benefit, financially, in the event of our deaths.
We also knew that emotionally, neither of us could probably do that final act of love, because it would be just too dang difficult.
Every year we pull out that paperwork and revisit our decision. We haven't changed a thing in 10 years. It's still full speed ahead for our dear friends, but hopefully, they will never have to make that dreaded decision.
Hospitals are in the business to generate money, mostly from insurance companies. Of course they would want to keep someone who was brain dead alive because that means money and more money coming into the hospital.
No offense to the wonderful and caring nurses and techs who work countless hours. I always want to ask these caretakers if they would keep one of their loved ones on life support even after the loved one was ruled brain dead.
As my good pal, PD, mentioned, it's okay to hope, but one should always be prepared for the worse and have a Plan B in one's hip pocket.
25
@Marge Keller
Congratulations, for your plan and follow thru. I’m very tempted to have “ NO CODE “ or maybe “ DO NOT Resuscitate “ tattooed across my Chest, as there is ample room. I’m very serious, I’ve seen enough. The Husband wants “ everything “ done, forever. Won’t he be surprised.
Cheers.
8
@Marge Keller - my 94 year-old father had DNR signs all over the house! Right when you walked in the back door, it was on the fridge, the first thing you saw. There was one in his bedroom on the mirror over the dresser. He was terrified of being “brought back” to live life partially or barely functioning. All his kids and doctors knew what he wanted. He left nothing to chance!
10
@ Marge Keller As a neuro RN for 28 years, my answer is NO, we overwhelmingly wish for our families and ourselves to have as little artificial prolongation of life as possible. No trachs, no PEGs, no needless suffering. My physician and nurse colleagues have stated repeatedly that they wish families had tried to prepare for the end of life that comes for us all.
10
Thank you.
10
It is almost always the religious people that don’t want to meet god. You just cannot have a meaningful conversation about end of life with the religious.
43
I’m appreciative of this honest piece. As a palliative care social worker, I very often see poor communication in the Neurointensive care unit lead to confused family members and poor outcomes. I only take objection with one piece of this article, which is the phrase “stop treatment”. We always keep treating-it’s the goals that change. Comfort care IS a treatment plan.
119
@Leah: “Comfort care IS a treatment plan.” Right on.
15
All life ends. Our time here is short. Important things will be left undone when you die.
You need to start by fully accepting and internalizing those facts for yourself and for those you care for. When a beloved dog cannot thrive any more, no matter its age or ailment, we gently put it to sleep, and there is little moral ambiguity about that decision. Nor is there much hand-wringing about the fact that this decision must be made with limited, imperfect information. As long as you act out love for the dog, then you did the right thing.
Yet technology and the false dream of immortality drives us to torture our own kind when they near the end of the line.
Far too often, when it comes to end-of-life decisions, we treat our dogs better than we treat our parents, our siblings and the like.
89
Why is it so hard to understand that if life is a gift from god, then so is death? The most grotesque prolonged battles to keep bodies functioning on the edge of death have risen from religiously affiliated hospitals and groups. I just don't get it.
48
@DMS
Its simple. We don't want the people we love to die. That's it.
1
@DMS Many people value "life" more than they value relief from pain and suffering.
Our family went through this difficult process one year ago.
Our 55 year old brother suffered a stroke and had complications.
A second bleed on the brain that was devastating. It was VERY difficult to get a clear picture from the attending physicians. We are medical family and it took an enormous effort by my husband who is a physician, and a very concerted effort as next of kin not to consign my brother to an inevitable "living death" with no quality of life. I am grateful to Dr. Stern for writing this piece and bring awareness to the NYT readership.
96
No decision of this nature is easy to make and requires more than anything compassion empathy and honesty.
Something form left field - is no one shocked by the deaths of young people from gun shot wounds to the head?
16
@CC C
All of us who support much stronger gun safety controls that we believe will mitigate the number of deaths by guns are horrified by the calm way that the deaths of young people are handled in the media. There are many organizations working hard to put in place regulations which will delay or deny guns to people below the age of 21, but relatives who persist in leaving guns available to family members (including toddlers) are difficult to convince guns need to be put away in safe places when children are in the household. Alcohol use is a complicating factor in all too many households.
The NRA has taken some financial hits lately and some ridicule for its obviously untrue messages. However, the NRA and gun zealots still own many powerful legislators who regularly inhibit progress in keeping guns out of the hands of those unfit to have access.
Gun Safety organizations need to keep working in every state and county (especially those counties which proclaimed themselves "gun sanctuaries". It is ironic that so many people and groups are willing to fight for the right of a person with little or no brain activity after being shot in their heads to consume major financial and medical resources while being artificially kept alive, but are not willing to work or vote to keep guns safely out of the hands of teens and others who might use guns for gang or mass killings.
25
Admittedly, many years ago, my husband's family was told that, having suffered a massive stroke, his grandfather was semi-comatose - "unaware, just like a baby," the doctor said - and would never recover. The family declined to discontinue treatment.
Two weeks later, my husband's dad and uncle-in-law sat by his grandfather's bedside, debating which NY Yankee had, back in the 1950s, completed a famous play. My husband's grandfather awoke, sat up and supplied the name.
He lived for three or four years after that day, dying of something else. My health care directive instructs my caregivers not to discontinue treatment until I am fully, completely - heart-is-stopped-and-will-not-resume-beating - dead.
19
Three years ago last month, my out of state son took a picture of my healthcare directive saying he was my decision maker and sent it to hospital neurology where I lay unconscious from a bleeding benign brain tumor. They told him that my most likely outcome if they operated was that I would die in the neuro icu without waking up and I had little chance of a meaningful recovery. Nevertheless he asked them to operate. And except for a dent in my head and drug-controllable epilepsy, and against the odds, I recovered. Predicting the future is hard.
55
@mwm Doctors are not omniscient, which is why I have a problem with the attitude of "If the outlook looks bad, encourage the patient to die."
9
@mwm
These family stories are good to hear, but they are not common outcomes. Doctors would have no right to tell every patient's family that complete recovery is a likely option.
My mother fell from her wheelchair in the ER as we waited for a room. She broke her hip which was repaired and as was normal went to rehab within the hospital. She made no progress and refused to exercise most days. She was transferred to another rehab center.
My aunt (mom's sister) had just completed a Sunday am visit and called me from the parking lot to tell me my mom asked for gum; we chuckled about the request, but I had another call. It was the rehab center telling me my mother had died. All of her lab reports were consistent with someone who would recover; she was lucid with my aunt. And then she died so suddenly without explanation, without hints she was going to die.
My purpose in relating my story with yours, is that my mother was not in an ICU; she was in rehab to get her muscles stronger. She died and you lived. The "odds" were against each event. The moral isn't "always demand everything possible be done and let the patient be in a coma like a vegetable until the lungs, heart and brain stop----despite all the artificial means keeping them going. The moral is to understand the information the patient's body can give the medical staff and make the best decision as the patient's representative that you can make knowing what you know about what the patient wants.
49
I think that modern medicine has been a victim of its own success. Enough ‘hopeless’ cases have ended with more years of productive life for someone, that it’s harder for professionals, not to mention laypeople, to predict an outcome. That said; yes, I am grateful that my son said, “Roll the dice.”
10
Thank you for your words and your care, and for finding the means to make your voice heard. I appreciate working with you and echo your call for continued striving towards thoughtful compassionate care and communication between caregivers and patients’ family members.
14
My sister has been in a nursing home for the last 8 years on a tracheostomy and G-tube as a result of a choking episode at home. She has had MS for 50 years; her husband has said he now regrets calling emergency services and it would have been kinder to let her die. Apparently they did not have Powers of Attorney, but I do not know his thoughts on shutting down this extraordinary life-sustaining treatment. She lives far away from me and there is so little I can do, other than to write and send her things I think might bring her some pleasure. It is a horribly sad situation and one that I would not wish on anyone. She has suffered enough just dealing with her very severe MS for all of those years and we all hope that her suffering will soon end.
52
Highly recommend that you encourage your family to meet with a palliative care team for support.
20
@Leah Rosen that would be my approach, but my BIL is very 'hands-off'; he cannot bear to make that decision.
1
A heartbreaking decision for any family. However, when the hospital bills begin to arrive, the answer is very simple - DNR. The author does not state whether these patients on Medicaid or private health insurance.
19
@Pryor So you think the decision as to whether to keep a close relative alive is all about money?
6
As I said, it is a difficult decision. However if I was legally brain dead with no hope of recovery then I would prefer to pass on.
And yes, there are always economical and emotional issues in these situations.
14
@Pryor Why do you mention Medicaid or private health insurance? Are there different decisions we should make depending on what type of health insurance someone has? Why?
1
I am a hospitalist, and part of my job is helping families to make these sorts of decisions.
It's my firm belief that when families make decisions for their loved ones with love and care in their heart, they make the right decision. Every time. Whatever they decide, by definition, is the right decision. There is in my mind, no possibility of making the wrong decision.
Humans are gifted with many things, but not clairvoyance. We make decisions on the ground with the best information we have at the time, and the best advice for that particular situation. Even though a family may make a decision that could be seen as technically wrong (e.g. if they had waited a week, then the person would have made it), I advise them that there's no need to agonize over that. Whatever decision they make is still the right one, as we are imperfect beings making imperfect decisions based on imperfect data.
No one of us would reasonably want our family members to agonize over decisions they are called to make for us. I would not want my demise to haunt my children with questions of "what if". I would want them to be comforted with the knowledge that they spoke for me with my best interests as they understood them, and did that act with love in their hearts. That's what is important - that they loved me enough to speak for me. The outcome is not important in that process, as the responsibility they bear is to speak. Not to ensure the outcome, because they cannot.
144
@N Browning, if this email is an example of how well you communicate with your patients and their families, it is clear you have chosen the right profession.
The most difficult part of making decisions in these situations can be regret of “not doing the right thing”. When families are living with loss, they do not need to add regret to the weight of their sorrow.
Thank you for your compassion.
39
My brother, a 41 year old man in excellent shape, was struck by a car while crossing the street a little less than a month ago. We are living this reality right now. We are not yet at any "end point." Here are my thoughts thus far. Most of the doctors in the hospital do not see patients post rehab. They do not see patients 3 months nor 3 years post hospitalization. The neurologist who examined my brother gave us a very grim prognosis about my brother's recovery. My sister, who is a physician herself called every expert she could find. Most experts told her that with brain injuries it could take 3 months to a year to make an accurate prognosis. Based on this advice, we had my brother moved into an excellent rehab center. He is just four days into rehab and he has begun to open his eyes and follow simple commands.
While I do not judge the decision others have made about their own loved ones' future, I think family members should speak with rehab specialist as opposed to hospital physicians. A rehab specialist will have much better handle on the kind of recovery, if any, a patient can have.
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@MF
I am so sorry to hear about your brother's recent trauma and am glad to read of his progress. I second your recommendation to rely on a rehab specialist for a more reliable recovery prognosis. 15 years ago my then boyfriend (now husband) and I were struck by a car while crossing the street. At that time he was 39 years old and suffered broken bones and a TBI/coma. A doctor at the ER gave his parents the worst case scenario (though it did not include death). Luckily he was young and healthy and recovered amazingly well. It was 6 months before he came home from rehab. It has taken years and he's not "just like he was before," but who is? Please hang in there are remember that the human brain is incredibly resilient.
20
nice article on a complex issue
9
My mother died from a rare neurodegenerative disease. At the last moment before we moved her to hospice the physician called me to say she had tested positive for antibodies that could indicate a different treatable disease. We had not yet received all confirmatory tests for the fatal disease that they were pretty certain she had. Since I am a nurse and my dad didn’t know what to do, he left the decision to me. How I agonized over what to do. In the end after speaking with multiple physicians we moved her to hospice. The final tests came back after she died and did confirm the fatal disease. I was so relieved. These are never easy decisions.
41
Having helped a spouse through a potentially fatal cancer and years later a stroke, I, too, would encourage having the needed medical documents ready. Consider how and when those documents may be needed. While we are both clear about not being resuscitated or having life sustaining procedures in the face of hopeless outcomes, being able to document one’s wishes mid emergency can be difficult. Having the documents at home in a filing cabinet is not sufficient when you just raced to the Emergency Room. During our hospital stay we were moved several times. Each time I inquired if the DNR and power of attorney were with the files. Each time they had been lost. Each time I provided them again. I took to carrying copies of them in the glove box of the car so I wouldn’t have to go home to get them. I now have them as e-documents available on my phone if needed. The institution where the documents were misplaced was religious and its religious doctrines espouse life over a patient’s wishes. While the vast majority of care givers respect a patients wishes it may be worth remembering that some practitioners may have their own religious agenda in providing advice or care. Having had frank conversations and proper legal documents can help reduce the angst of the hardest decisions you may ever make and avoid emergency actions contrary to your loved one’s wishes.
63
These scenarios are so overwhelming to everyone involved. Many hospitals employ chaplains (whose professional training includes serving those from a variety of faith traditions and those who do not align with one) to help everyone - doctors, nurses, patients, family and friends - cope during times of crisis. The experience and perspectives of chaplains can play an enormous role in helping people express their values, grieve, learn coping strategies and help resolve serious differences of opinion.
8
@Gretchen Horlacher , over 20 years ago my father suffered a catastrophic brain injury. At the trauma center where he was admitted our family met with the medical team 24 hours after his accident. The optimal outcome was a persistent vegetative state.
We were able to contact my parent's pastor. He met us at the hospital and talked with our mother who would make the decision about continuing life support. After that conversation their pastor spoke at Dad's bedside and we said goodbye.
The pastor 's compassion and faith was so very much appreciated.
26
@sanderling1 Thank you for sharing your story. We need so much more than medical "facts" at times like these and I'm so glad your pastor could supply comfort and wisdom.
6
There are so many sad things in this article, but the saddest for me are the two cases of young people with gunshot wounds to the head.
54
Meanwhile, patients who need simple care like insulin aren't getting it. This medical expenditure on people who are already dead is unjustifiable, Our society spends too much on end of life care and too little on those who need care.
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@dr. c.c. I don't think that people who are not the patient, not relatives of the patient, and not medical personnel treating the patient should have any say whatever.
12
@dr. c.c.
Diabetes is in many cases a disease of choice, I am pre diabetic and I know I made bad lifestyle choices that got me to this situation.I have made improvement only by being extremely disciplined.
I take responsibility for my disease and the cost of my medical care. I would never want the costs of my therapies to supersede care for the victim of a traumatic accident, say the patient mentioned above who was hit by a car as a healthy 40 year old. I would want that patient’s family to make all decisions based on what treatment would be best for the patient, not the relative costs of treatment.
In our wealthy country, we should not have to triage medical care to only those whose lives can be without question be saved, that suggestion is diabolical.
4
@Marika H Yes, but not true for Type I diabetics who must take insulin or die. The costs have risen to such a level some people must ration their insulin and in some cases have died. No one who needs such a live saving drug should be denied due to cost.
5
What a waste of money and a hospital bed to hold out hope in most of these cases. Whereas all the miracle awakenings from a coma after 10 years cases get reported endlessly. Just remember once the feeding tube is in things become much much harder to walk back from as Dr Stern points out.....
30
I think the family made the correct decision about the writer’s brother-in-law. In the end, that is an act of generosity and mercy.
If you want to see how ugly this debate can get, look up the case of Jahi McMath. The child was declared brain dead, yet her body was kept going — on full support — for more than five years, while her parents pursued a court case (and then they sued the state after her death). It was reported that Jahi’s body tissues were breaking down, yet her parents demanded she remain hooked up to the machines that replaced her body functions. She died after an intestinal surgery (presumably for a blockage). It was cruelty to keep her in that condition, for five years. Her parents (and their lawyer) claimed it was for religious reasons that they would not last her go. Given the deep pocket lawsuit filed after her death, I doubt that was the full reason.
43
@Passion for Peaches Hard to imagine reconciling a religion with keeping a person 'alive' like this. My religion is about caring for human beings as a whole -- physically, spiritually, emotionally, psychologically. And most religions make a distinction between body and soul. I can't imagine the profound sadness these parents must have felt, but keeping a body 'alive' with tubes and machines is not compatible with any religion I know.
10
@TrixieinDixie, it was an odd logic. The parents said that their religion did not recognize the concept of brain death. But they also claimed that the muscle spasms the daughter had (called spontaneous movements, they are not unusual in patients declared brain dead) were evidence of brain activity. So they seemed to be arguing against themselves, to some extent.
It was a messy case. The girl had been doing just fine after her tonsillectomy/adenoid surgery. Then, while still in hospital, she started hemorrhaging and lost a huge amount of blood, resulting in brain damage (and death). It was suggested, at the time, that the family had fed her some prohibited food, but that was soon dropped. The family was claiming malpractice from the get-go.
6
@Passion for Peaches
I agree 100 percent. That poor child was tortured, for years. And for what ? A belief in “ miracles “ ?
A miracle is Insulin for Diabetics, or Antibiotics for the Infected.
NOT spending literally millions of Dollars in a futile effort, from Professional Accounts and Testimony.
7
After having worked in ICUs and hospice facilities for many years, I can honestly say that some physicians’ motivation for keeping the patient alive is to increase revenue for both him/herself and the facility. Also, some physicians cannot separate their practice from their religions.
43
Almost a year ago, my brother, age 84, suffered a traumatic brain injury, when he fell and hit his head. He passed in September, after six months of medical care trying to give him the best outcome possible. Other than the first week after the injury, and the last week he was alive, he was mostly present, though somewhat confused; he was able to carry on some conversation. But he was physically weak, and it was all too obvious, that he would keep falling and hitting his head. After the last fall, his immediate family decided not to take him to the doctor, and basically just tried to make him comfortable. Hospice came and he died within two days.
I had a hard time with the fact that there was no clear best path after that last fall. I felt he at least deserved seeing a doctor. My nephew kept pointing out that they couldn't do anything; they couldn't perform another brain surgery, and my brother wouldn't want to live like that. And I also knew it was hopeless and was only extending the sad inevitable outcome. It was all painfully difficult.
Seeing how weak my brother had become over the years from lack of exercise, dealing with various illnesses, and taking opiates for pain was a wake up call. Elderly people falling is common. But that awareness can also be an incentive for more focus on healthy living, diet, and exercise. That requires motivation and education and effort. It's so easy to get complacent, and the price we pay health-wise is huge.
17
I've experienced needing to fight for life-saving care and for withdrawal of such care for my elderly parents.
My mother was a vibrant woman who worked with children into her mid-80's. She did not want a DNR and trusted I would make good choices as her health care proxy. Sadly, medical staff often saw my mother as a number, her age, and we'd need to fight for adequate care when health wavered. That apathy ultimately took my mother's life when a non-hospital DNR was mistakenly put in her medical file and no one bothered to look beyond the title to note it was neither executed or dated correctly. Had mom been younger, someone would have taken the moment needed. Instead, she was denied supportive care after a seizure (98% recovery rate) and her remains are now in an urn.
My father's last years were tortured by dementia and pain. At 90, when he collapsed, he was dying of cancer and failing kidneys. Paramedics broke two ribs performing CPR and three days later he remained non-reactive in a hospital bed. Gruel was pushed though one tube, and air was pushed through another. People came by to suggest long term care measures. I demanded consultation with a palliative care doctor who confirmed the obvious - dad was 'gone'. Twenty minutes before the time we agreed life support would end, a nurse nonetheless questioned if I was sure that I didn't want her to push more food through the tube in his nose.
Better medical training about aging and death are badly needed.
90
@Mary
I am so sorry for these painful experiences you had, but thank you100x for sharing. As caregiver to two early 80’s parents, I know I am facing many difficult scenarios, and having all paperwork in place is something I am working on now. One thing which astounds me is the range of care received, some medical staff can be deeply compassionate, some can become your worse problem. Who knew that an inaccurate DNR could be placed in a file, one more thing to be vigilant of.
6
As I was leaving a medical appointment at Kaiser Permanente one day, there was a team outside on the patio offering patients the opportunity to execute a comprehensive advance directive which would be added to the patient's chart. I was greatly relieved to do something that I had been putting off and should have done a long time ago (I am 68).
39
This article is remarkable for being, on the one hand well put, and on the other, for missing the elephant in the room. Both from the article and the comments, it seems no one took the process beyond naming a POA, leaving the both the family and the POA in the dark as to what to do in a case like this. A comprehensive, signed advance directive, shared with the family, stating that in the case of brain death or permanent incapacitation she wished to have treatment discontinued would have taken care of it. Although we can't predict what will happen at the end of life, It is possible to express our wishes should certain situations arise.
It is very simple. With the person's intentions clearly stated in writing and shared with the family, the POA would not have a decision to make, and the family, even if they did not necessarily agree, would at least know unambiguously what the person wanted. One of the commenters is a young man who was apparently the only person in the family who was told very clearly what the dying person would have wanted, and for saying so, the rest of the family is now down on him. This is a cruel situation for the dying person, the family, and that young man in particular. It can be avoided by writing a detailed, specific advance directive and getting everybody concerned on the same page.
22
All the more reason for every citizen to have reasonable medical and psychological insurance. There is a cost for prolonging a life that has essentially ended. Reasonable time should be granted for second opinions and tests. Counseling, religious and otherwise, should be offered to help survivors with inner conflicts with a difficult, heart wrenching decision. But sadly, unless you have deep pockets, your decision to keep someone who is braindead alive, is taking resources from others. Still reasonable time should be offered during this very traumatic time for all. So sad.
13
I will never forgive the neurologist tasked with my mother after her stroke. She was resuscitated, against her wishes per her living will and medical POA documents. She went through the agonising process of being locked in for 9 days and declining while undergoing "procedures" meant to "better help." It is important to find out as quickly as possible if a doctor will honor a patients paperwork. In Georgia, as long as they give you notice, they can throw the wishes of the patient into the wind.
Oh yeah. And the reason for keeping my mother alive as stated by said doctor? "The family isn't ready to see her die." Thanks for the week of agony you put my family through, Dr. Playing-G-d.
69
@Kat,
I am so sorry for you and your mother’s experience.
Some time ago, when my brother-in-law was gravely ill, I read about end-of-life directives, and discovered to my dismay, that research studies indicate that most doctors do NOT want to be treated as they treat their patients. Most would opt not for extreme measures, yet a large percentage (maybe 60%-70%) would ignore a patient’s Advance Directive which essentially state the same, and would provide care beyond what the patients expressly stated.
This is a dismal state of affairs, and should be changed.
27
@Dr. J We had to fight both my parents' doctors at end of life, even though we had clearly spelled out medical directives and the entire family was in complete agreement with their wishes that no extraordinary measures be taken.
9
I too will not forget how medical staff failed to display empathy or provide accurate prognostic information, when my life partner (of 23 years) suffered a basilar stroke followed by a massive hemorrhage when the clot was dissolved with PTA in an attempt to save him. He spent 7 days on life support in the neuro ICU, while daily scans showed total brain stem destruction by the stroke, and an empty space where his upper brain had been destroyed by the subsequent hemorrhage. But his primary physician told us that despite his brain dead status (obvious to me, a physician myself), there was a chance he might recover, and we spent that devastating week by his bedside, nobody wanting to question his doctors. On the seventh day, his primary doctor dispassionately informed me that it was “time to pull the plug,” and his heart stopped shortly after life support ended. When I asked this doctor why the prognosis had suddenly changed, his answer was “we always tell the family there is a chance of recovery to give them hope.” It was not hope, but anguish, knowing my partner had no chances of recovery and was kept on life support for 7 days, apparently because this doctor could not accept his own failure to correctly diagnose the signs of an impending stroke when his patient came to his office complaining of dizziness and unsteady gait the previous day. By training physicians to give false hope, our healthcare system is failing both terminal patients and their families.
20
Eleven years ago, I underwent 13 hours of neurosurgery for a rare condition, Moyamoya Disease, where the carotid arteries feeding the brain close off over a period of time, meaning a bypass must be done to get blood to the brain. At the time, I was only 36 and had two young sons at home and a loving wife. I left a directive that if the surgery resulted in brain death, I did not want to be kept alive by artificial means, forcing my family to come visit me in a vegetative state till I eventually died. Obviously, the surgery worked as I am typing this now. A few days after the operation, the nurses in the neuro ICU wanted me to get out of bed and walk. Two large orderlies were by either side of me as I pushed two IV poles up the hallway. The nurses at the nursing station started applauding when they saw me. I asked one of the orderlies why. He replied "Take a look at your neighbors." Every other bed in the unit had a patient in a coma being kept alive by machines. I thought to myself "There by the grace of G-d go I." I'm still here and my grown sons know my wishes. If, G-d forbid, I wind up brain dead. they will both know my wishes and not be burdened the rest of their lives with guilt or doubt.
83
Dr. Stern presents the heartache and dilemmas that all too many family members face. The ability to convey the truth with empathy and compassion comes naturally to a few but is a skill that can be learned. No one feels comfortable delivering devastating news, and doing so with compassion is a healing act for not only for the family members but also for the physicans and medical professionals who must share the news.
11
This is such an important article. My own father was left profoundly brain damaged after suffering a massive heart attack after single bypass surgery. The doctors were so optimistic with my step mother that she refused to end life support. My father lay in a care facility hooked up to all kinds of machinery, wasting away for months. His body began to arch, he developed bed sores, his feet curled. Our family was irreversibly damaged by this macabre situation. I had no power to end his suffering. More than 20 years later I’m still haunted by the nightmare.
63
The is a clarion call for everyone, especially those of middle age or more. You MUST have a person assigned as your Legal Authority for Healthcare. This can be done upon any Hospital admission, for elective procedures. Otherwise, find a free or low cost Legal Clinic to complete the paperwork, if you can’t afford a local Attorney for the relatively simple paperwork.
I’ve seen this a thousand times, and there is almost always ONE person in large or extended Families that prevent withdrawal of care, or even the use of DNRs. And Hospitals and other Facilities often accede to their demands, for fear of being sued. Often, this person is “ Religious “ and “ believes “ in miracles. Fine. Let them care for the Patient, or pay for their Care. If they have no responsibility, why would they be allowed to make Demands ? No, I’m not heartless. But, a very large amount of Money from the Medicare budget is spent on Care within the last few months of a Patients life. Degrading, heartbreaking and futile.
Hope for the best, but be prepared.
74
There's a resource that I think is truly helpful, and all the more helpful if utilized before a crisis: The Conversation Project. [ https://theconversationproject.org/ ]
It describes it self as: "a public engagement initiative with a goal that is both simple and transformative: to have every person’s wishes for end-of-life care expressed and respected."
13
You must talk to your family before these situations arise. And it must be also put in writing and placed where people can find it. And you need to take copies with you when you go to the hospital for procedures because they will admit that they " can never find these things even though it was filed years ago".
These discussions are more likely to happen when you are older and your children are adults. For this man, a recent widower with young teenage children, it is not as likely that this discussion had been a clear one. And I am so sorry for his family and wish those children recovery. Thank goodness he is not intubated and hooked to machines for many years going forward. This is very much due to an honest doctor who is willing to have such a hard conversation. At my age in my late 60's I have seen more than one person condemned to years of a twilight existence which they would never have wanted. And the doctor here is very clear: once they set it up to where a machine does your breathing, antibiotics are at the ready, tube feedings set up and hermetically sealed climate control is in place you will exist like that for weeks to months to years to decades. Do your best to avoid that being the default decision. And if you do not have close family figure out who can be your advocate and make sure you can rely upon them to have the paperwork.
And many of us want to donate our organs and that needs to be done before the body deteriorates in a long ICU or nursing home stay.
20
The issues raised in this article have been systematically explored in Susan Shapiro's new book, Speaking for the Dying: Life-and-Death Decisions in Intensive Care. The book reflects on these excruciating decisions faced by hundreds of family members on behalf of patients of different ages, races, religions, and educational and economic backgrounds, beset by a variety of medical crises that stole their capacity to decide for themselves. As you can imagine, many families respond to these crises quite differently than the author of this article.
5
This is a thoughtful essay and I generally agree with Dr. Stern’s points and his approach.
I would disagree a bit with his suggestion that it’s wrong/inappropriate for a specialist involved in a neurologically- injured patient’s care to present a “best case scenario” to the patient’s family. In fact, the family will often specifically ask for this information.
As long as the scenario is clearly presented as “best possible outcome” and NOT “most likely outcome”, then it’s important information that should not be [paternalistically] withheld from a family struggling to make the appropriate choice for their loved one.
Of course, that information should be shared up front, during the decision-making group discussion; and not - as in the scenario Dr. Stern describes - mentioned as an afterthought of sorts when the family has already decided on a course of action.
8
My husband of 61 years fell and sustained severe damage to his brain stem. A kind doctor in the neuro ICU explained that my husband, who would walk 5+ miles every morning, could never survive with a good outcome. With family present and in agreement, I gave the consent to withhold life-saving measures and to let him go peacefully. He passed away several days later on New Year's Day. I am riddled with guilt but at the same time, I know this would have been his wish as well.
164
@Nancy A. Bless you for the act of selfless compassion you took on behalf of your husband. I'm sure he would thank you profusely.
66
@JamieRose
I just added a note to my health care proxy to relieve her of any thought of guilt: In the case of a DNR, "I would be forever grateful - if I could."
13
@Nancy A please accept condolences from this stranger for the loss of your beloved husband. What a wrenching decision for you. As a health care professional, I believe you made the most compassionate, wisest decision for your dear one. May you find peace and comfort in your grief.
25
Impressed by Ms. Ellie's father's story, it has to be a team of caregiver's scientific judgement and decision with family members to end the treatment of a comatose patient. The vast quality and consciousness of a life should be the main consideration.
8
Where was the discussion regarding Organ Donation?? Not mentioned once in the article. Thousands of patients are dying on transplant waiting lists, and many families of patients with irreversible brain injury/brain death find "closure" when their loved one's organs are donated to others. All health care providers managing patients with irreversible neurologic injury should include their local organ donor network related to neuropalliative care.
35
@Paul Gaglio perhaps it is because many people don't trust physicians who recommend removing care because they feel that they are more interested in the organs than in the patient in front of them. Of course, that concern is likely never true, but it is important that the decision to abandon care comes before providers address organ donation, so that there is no confusion regarding motivations.
21
@Paul Gaglio The doctors' thinking about what to tell families about the chance of recovery should only be about the patient not about his/her organs, as valuable as those organs could be to others. I think that's why organ donation was not actually relevant to this story even though the organ shortage is dire.
20
@alan
In any institution I've been affiliated with [I'm a retired M.D.] the care team is only involved briefly with discussion of organ donation, and only when the issue is raised by the patient's family. At that point, an organ procurement team is called in for further discussion.
9
I just lost my Mom in the ICU in December after an accident that deprived her brain of oxygen for an extended period of time. The neurosurgeon cried when he told us the results of her scans. Not complete brain death but there was no chance of "meaningful recovery." I'll never forget that moment of empathy. We let her go in the OR as she was an organ donor. Waiting for a miracle is not always meaningful for your loved one. To those who have gone through these decisions--you are not alone and tinges of regret are normal lying awake at night. Articles like this one helps. Thank you!
153
@Kevin
I just added another phrase to my DNR: "Meaningful recovery." Thank you.
6
My father developed menningitis and went from our family thinking he had the flu to brain dead in three days.
The decision to remove him from life support and let him die naturally was one of the most difficult decisions my mother, brothers and I have ever had to make.
Not knowing if he heard a word we said, we each made our way to his bedside and said our goodbyes. I can remember every word I said and it's now forty-one years on. I can remember the tears I shed and the unrelenting sadness of losing him.
But, I know we made the right decision and this one fact has made his loss more bearable. Living in a vegetative state is not living at all and we need to realize this and let our loved ones go with dignity.
If we truly love them, we must honor their wishes and not cling to them for our own selfish reasons. Letting go is a tribute to the life they lived and the love we can show them in this final act.
112
The most important thing the medical community can do is to educate all of us in honest but decent language that consciousness is all we have. Once the basal ganglia and thalamus click off that's it, there's no more, the rest of the brain might continue to function but the personality is gone. This is gut wrenching to say the least because none of us want to face such finality. There must be a reasonable universal standard that allows time for acceptance and a humane end to life. This will not be easy but this article reveals much confusion (or hesitation) that defeats good intentions.
16
My husband had no brain function excepting that he was initiating breaths (Glasgow 4T); a hand-sized piece of his brain had been removed and he had a bad bleed in another area. The head of the trauma ICU team at Tucson's Banner Univ. Medical Center pushed me to provide him with nutrition because "the brain needs nutrition" (about 48 hrs post-injury). I was able to realize that for this "healer" the successful outcome was shipping him off and letting him die on someone else's watch. Let's not forget the level of self-interest of an egotistical MD...
59
@janet becker
More likely the driver was economics. Had a similar experience with my late grandmother after she experienced a massive stroke. A great deal of pressure was put on my mother to ok a tracheostomy and gastrostomy. The hospital argued that my grandmother could not [under the Medicare regs then current during the Reagan years ] remain hospitalized with comfort care only, would have to be transferred to a nursing her natural death ome. The local nursing home, owned by the hospital, rhfused to accept her without her receiving hydration and nutrition by IV. I had to start the IV and write fluid orders myself [I'm a now-retired M.D.]. Luckily, the nursing home either did not notice or question the fluid orders, which provided essentially no nutrition and hydration. Nevertheless, was unnecessarily delayed.
15
@treefrog I don't believe this was the case; husband (67) was working full-time and was covered fully both by private insurance and medicare. Bill for ER/surgery/ICU was a simple copay. Not once were costs mentioned.
After this interaction with MD, I moved him to comfort care; he died 45 mins after the switch. I've omitted a long narrative unbecoming to the hospital that bolsters my post. The neuro team was quite clear as to the outcome. In contrast, trauma ICU team's recommendations would have ensured a persistent vegetative state off-site, and not a swift death. IMO.
15
@janet becker
My mother also had a surgeon who refused to honor her DNR because, as he stated, "not on my watch." I hate that man and told him so.
16
As previously noted, the last paragraph is a salient summary.
Unfortunately, few medical staff are well educated or comfortable interacting with families. They often are oblivious to family dynamics as Dr. Stern demonstrates so well.
Additionally, given the financial pressures placed on physicians to perform, perform, perform (i.e. see many patients in a brief period of time to generate income), it is not surprising that many families are dissatisfied with their interactions with medical personal.
8
Kudos to Dr. Stern, this is one of the best pieces I've read regarding the element of uncertainty that permeates essentially all medical decision making. I'm sorry he's had the unwelcome personal experiences to have contributed to that knowledge, but his sharing helps these readers.
24
some families do not understand that not having a DNR means the patient will end up in ICU. for a wk or two and end up dying again. :( i'm thinking heart attack Pt.s in very poor health.
i once did CPR on a 95 yr old who was riddled w/ cancer.
yet the family refused to sign a DNR due to very high emotions brought on by end of life decisions that should have been made before. a lack of education in health outcomes and religion also play a part.
49
What a wonderfully thoughtful essay.
13
The last paragraph says it all. It also applies to the elderly with multiple conditions. Their care is too often driven by procedures that do nothing for quality of life.
33
We talk about the sanctity of life. In some situations it can be very difficult to see any value in living, let alone dignity and sanctity.
Strong and brave are the people who have to decide.
Never easy, but necessary.
17
My father went into cardiac arrest that left him in a coma and requiring live saving measurements. Every twitch and grimace was a ‘sign’ that he was waking up and the family would cheer with relief, only to be told it was simply reflex responses. It was agonizing. After nearly a week and an EEG, the associate neuro doc sat us down and broke the news- there’s minimal brain activity. That night, the nurses finally relented and allowed me to place headphones on my father to play my entire playlist of The Beatles. The next morning, the neurologist made the phone call to my step-mother reiterating the findings of the EEG and recommending we remove life support. Furious, my step-mother insisted this information should be given face to face with the family and not over the phone. Though aggravated, the neurologist did arrive later that day, walked into my father’s room and gave my father one step directions. For the first time, my father followed all his instructions. The neurologist had a mixed look of annoyance and shock. It was the 7th day of the coma and wether it was divine intervention, medical anomaly or the power of The Beatles, my father woke up and lived another 8 years.
73
@Ellie Speaking words of wisdom, let it be....
4
I have done everything I know of to make my wishes clear - Advanced Directive, conversation with family members, but I still have a great fear that someone in the hospital will re-interpret or ignore my expressed wishes for non-resuscitation and no extraordinary measures. I keep reading stories where this happens and wish I knew for certain this couldn’t happen.
44
@Enlynn Rock I was a Hospice Nurse for years, and it wasn't the health professionals/hospitals who did not follow the patient's wishes- it was the family. Often they are driven by guilt. They would come in and insist that every blinking thing be done to keep the patient alive, despite the patient's clear directive. In some states, a Living Will is not legally binding. Sometimes they'd threaten to sue the other family members! Put it in writing, make sure your MD has a copy, as well as all your family members. Make sure they KNOW what you want, tell them repeatedly while you are still able.
46
@Enlynn Rock You are quite right to be concerned. Some Healthcare workers, typically non-licensed caregivers, make assumptions that it's not necessary to get up from their front desk seats at the nurses station to respond to sensors, treatable conditions or even patients, since there is an advanced directive or DNR posted for that patient. Having the directive in place and communicating your wishes with family is essential. The only assurance though , I would offer to you is to be sure you go to the best quality private medical center you can afford.
5
@Enlynn Rock
This is probably not a very common experience, but, as a (retired) ICU nurse, I saw only one instance where the wishes of the family to keep the severely compromised person alive — despite the patient’s clear wishes not to be — were honored because the patient had made an Attorney the health care proxy, with tone directive to carry out the patient’s final wishes and to sue, on his behalf, and to inherit his entire estate, should anyone try to override his decision to forgo “heroic or extraordinary measures.’
That was the end of that story. And of the patient.
13
Having had a close friend who went through a similar decision -making process, I totally agree with the author of this article. It is never easy to lose someone you love, but the truth is, most of us would not want to exist in a state of complete debilitation with no hope of recovery. We need to realize as family members that being able to keep someone we love alive even though they have completely lost the ability to interact with the world on their own behalf, is beyond unreasonable and although it is an agonizing situation to be in, showing the courage to let them go, is the ultimate expression of love that can be given in such circumstances.
31
Thank you for sharing this, Dr. Stern and NYT. Such a tough topic to comprehend.
15
Pardon me if i missed it in the article, but this is missing. To prevent causing one’s family pain, let everyone know your wishes! My mom had a stroke and had little chance of recovery. It was certain if she did recover, it would be limited and she would rely on others to live. My mom was a strong and independent woman and had a close friend who became disabled. My mom would always tell me “ let me go, i would NOT want to be in that situation!” She was adamant!
So when the family gathered deciding what to do, i was the only one who said to let her go. It was her wish......i was met with anger as my mom told nobody else of her wishes and to this day i am hated in my family for my words.
68
@Rick L. You hit on something central to planning for these situations: conversations with family and friends about one's preferences in these kinds of situations. Next is having an advance directive naming the persons who would have authority to make health care decisions when you no longer have the capacity to do so. I note that the person, a health care agent, could be a family member or a friend. The key is to choose a person who would, as much as possible, consent to treatment or no treatment consistent with what you would want.
22
@Rick L.
Yes, but the question of what to do when the prognosis is UNCERTAIN is still a problem. You may know your family member "would not want" to be kept alive in a persistent vegetative state or profound impairment ... but what if the medical team keeps telling you that they MIGHT (after an unknown period of time) recover function?
11
@herzliebster
The author of the article addresses this problem in making the distinction between what is possible and what is likely.
8
All. brain injuries are not alike but it is clear in certain types what the prognosis will be. When the author mentioned the overly optimistic input from one of the attending, I cringed...I’ve seen this happen and it can easily throw a wrench into the decision making process for surrogates who are shocked and vulnerable. Another commented on this final time being more about surviving family members, than the patient. It takes a lot of courage and love to let go even when you know it is the right thing to do. Choose a surrogate wisely, one who will be able to follow your wishes rather than being overcome with their own loss.
28
“In my experience, connection and empathy are far more important than certainty.”
Nicely put; I wonder how much a provider/nurse can really care for each of their patients on a deep emotional level. This is something I strive for, and enjoy (making connections), but It’s a complex relationship. I don’t want to inadvertently fool my patient—or myself—I’m not their close friend or family member.
22
Being kind doesn’t require a prior relationship with the patient. It is
one of the benefits of the job. Think
of it as a helpful requirement. Try it,
even if at first it is an act. It will be
transformative.
6
I feel compassion for both the doctors and the families, and I truly believe more professional psychological support should be provided to them.
But it turns my stomach at the thought of how much our medical system is spending on keeping people in a vegetative state or, in the first case, literally dead and on machines to delay the family's grief process to take place, when people are literally dying of preventable diseases because they lack the means to afford access to preventative or otherwise non-emergency care. The diabetic who dies because she can't afford her insulin is a no less tragic case than these.
If we, as a society, can afford to pay for the former, surely we can find a way to fund universal health care coverage.
100
@JL
Agree. And gunshot wounds are also a "preventable disease."
44
All human life is precious, but we are all on the path to death the moment we are conceived. The only variables are the moment and circumstances of death. When a person is in a vegetative state, they cannot be consulted as to their wishes. This is why it's so important to have a living will and provide a copy to those who must make the ultimate decision as to the efforts and the timeline of those efforts affecting whether you are kept alive or are allowed to die.
22
A picture tells a thousand words. My brother in law at age 62 and after being married to my sister for 40 years, went from worst headache in his life to death in 8 days due to a rare encephalitis. When it was finally diagnosed..after being misdiagnosed as a brain clot, the intensivist showed us his EEG which showed in color literally his entire brain "cooked" by the infection...necrotized. That was all it took for my sister to order them to remove his ventilator tube and allow him to die. The doctor was somewhat shocked as they normally expect this decision to take longer. When you see that picture on the monitor, it is very powerful and convincing.
75
This past year my son suffered severe brain trauma from a car accident. He had already had a seven hour surgery that was probably pointless. Early on, organ donation was mentioned. For any in this situation, please consider this. It was a positive outcome from a tragic accident. The fact that four people have a second chance at life is a constant source of comfort to his family. Once we made this decision, the transplant team brought in a social worker that stayed with us and him through the final surgery. Many of the concerns voiced here were helped by the team.
About six years ago a friend suffered brain trauma from a bicycle accident and there was never a discussion to donate organs. After two surgeries, feeding tubes and a ventilator she went into hospice and lived almost a month in this vegetative state. This ended with nothing positive for anyone involved.
190
@Pamela Jones I am so sorry for you loss and am inspired by your courage.
66
@Pamela Jones,
I am sorry for your loss.
My brother got a liver transplant 20 years ago and is still going strong. The husband of the donor had made the decision to donate. Offered the opportunity to meet with us he declined, preferring to remain anonymous. I think often of that man and his family. We were told that the couple had two young children. They would be 24 and 21 now. My nieces who grew up with a father using their mother's liver are 26 and 30.
I tell you this to reinforce your sense of comfort from giving those four people a second chance. You also gave their families a great gift. You allowed them to avoid the trauma you yourselves were experiencing and instead look forward to longer life together.
8
Not doing things is harder than you think especially in the icu where every alarm requires some sort of response. Since this is a recurring problem perhaps we need to come up with a model for patients where intervention is unlikely to benefit but we - both families and medical teams - are not ready to give up. I think of this every time I see very elderly people in the ICU. Most will never get better but everyone has seen that patient who suddenly improved. So maybe we don’t stop the antibiotics and the vent but we also don’t draw labs every four hours and start pressors. Also more liberal visiting hours so families can be there.
We need a middle ground since what we are doing isn’t good for anyone.
27
@AR we do have a middle ground. It’s called a POLST (physician orders for life-sustaining treatment) form and details which interventions you would want (antibiotics, feeding, other medications, up to and including chest compressions/shocks/mechanical ventilation) in times of medical crisis. About 40 states in the US have this system in place in some form. Please talk to your doctor about it.
11
@Jenn I tried to arrange POLST. I called the local person in charge of it (while I was attending to my Advance Directive and will, etc.).
She told me that since I'm merely disabled and in pain from arthritis and a neurological condition, but otherwise "healthy," POLST was not anything I should consider quite yet.
"POLST forms are appropriate for individuals with a serious illness or advanced frailty near the end-of-life." (https://polst.org/polst-and-advance-directives/)
At 47, I suffered a hemmorhagic stroke. The site of hemorrhage was coiled and a stent was placed in another arterio-venous malformation. I was in a coma for 2 weeks, with breathing and feeding tubes. My family, including my teen and preteen children, were preparing to lose me.
After I came out of coma, I did inpatient therapy for a month. I walked out of the hospital, continuing therapies on an outpatient basis for the next 3 months (the amount permitted by my insurance.)
While I stress that this is MY outcome, I am not the only one. I belonged to a survivors group for years, and most everyone was happy to be there, even as we all acknowledged all that we had lost (mobility, vision, speech, jobs.)
I am surprised that the author only mentions cases where treatment failed. Even with all the horrors of the hospital and first couple of years of adjustment, I am forever grateful to my husband, who knew how to advocate for me, and for my medical team. Surviving to see my mother through her last years, and being there as my children have grown up, are priceless gifts.
I would not want to have spent the past decade unconscious, intubated, and receiving nutrition through a feeding tube. But this piece suggests that is the likely outcome. A more balanced piece with other stories would be helpful to those considering these issues. The National Stroke Association has helpful info.
38
@Lawyermom
Yes, but the first 2 cases involve gunshot wounds to the head, which essentially shreds the brain tissue in its pathway. Pretty different from a hemorrhagic stroke.
35
@Caligirl And the case of Dr Stern’s brother-in-law sounds similar to mine. That’s what prompted me to write this.
7
@Lawyermom With all respect, the focus of the article is about how to navigate when the outcome is certain death. Including positive outcomes would be irrelevant. Yes, many people, but not all, survive strokes. But we are inundated with media that push the unrealistic narrative that every patient can be that one in a billion survivor of a massive trauma. People can recover from strokes, but they cannot recover from brain death. We need to be better educated so that we choose a humane death for our loved ones instead of a lingering hopeless death by rotting in the ICU.
24
My uncle experienced a TBI. I was his healthcare proxy. For years, he expressed no life saving measures. I was very clear with my aunt, that this would be the only time we listened to him. He died peacefully within hours of pulling life support. Talk with your love ones about what you want, it is the most important conversation you can have.
73
How many of these cases are caused by gunshot wounds? And how many of them would have been saved if we had a sane gun policy?
107
@Chelmian isn’t that the truth.
26
My mother had a brain hemorrhage at 83 and the surgeon removed part of her brain. When she was stabilized, the doctor insisted that she get a feeding tube which allowed her to live another 4 years without ever regaining consciousness. Doctors must stop saving lives for the sake of it when they know that there is little or no hope of ever getting back to a normal life. Death is kinder than living in a vegetative state for years on end.
302
@Labrador Doctors dread having to appear before their state medical board and explain why they “let” a patient die.
Additionally, hospital management does the utmost to avoid patients dying while under their institution's care, and physicians are often held accountable for deaths that occur on their watch. Our for-profit health care industry is focused on sustaining life at all costs; that's where the money is.
42
@Kris Aaron
Kris Aaron:
I'm a physician who works in a major hospital. These statements are all clearly, demonstrably false. I am sorry that you made them.
First, I have never met any physician who dreads the medical board for letting a patient die. Beyond my claim, if you look at the (public) reports of disciplinary actions by medical boards, and I have, NONE of them have anything to do with this. Ever.
Second, hospital management has no influence on whether patients are allowed to die or not. Really. Despite all the carrying on about care being denied (or not) by insurers or administrators, this kind of routine ongoing care within the hospital is completely without administrative input. How would this work? Administrators would prowl the medical records, and then cold-call the attending of record and argue about the medical decision making? Never has happened here. The team (MDs, RNs, residents) would go absolutely, completely bananas. I can feel my blood pressure go up just thinking about it.
Third, you imply there is a perverse cost incentive, that hospitals make money by keeping people alive. The outpatient world is different, but most of the hospital payments are capitated: which is to say, a hospital is paid a lump sum for each patient with pneumonia. If some of those patients end up in the ICU on long-term support, that cost is borne by the hospital, not a money-maker. There are subtleties to this, but it is generally true.
191
@SW In my mother's case it happened in Japan and I can say unequivocally that her life was extended for profit purposes. The initial doctor who performed the surgery did not give us an option whether to operate on her or not. Once she was stabilized after a week, the doctor insisted on a feeding tube. Once that was in, I was told there was no way to unhook her as it is considered murder there and brave physicians have gone to jail for it. I had no option but put her in a nursing home which literally kept her alive for 4 years until all the deposit (6 figures) were spent plus the monthly cost of keeping her there. This was the out patient world as you say is different but physicians do play an important role in which unwanted and unnecessary outcomes can be determined by them.
28
Thank you for this article. As a former hospital and hospice chaplain I've been in the professional role of walking with and guiding families in situations such as those described. Sadly, exactly one year ago this type of tragedy befell my family when my sister-in-law fell down stairs in her home, resulting in severe brain trauma. I cannot say how proud I was of my brother and his children who asked appropriate questions, discussed my s-i-l's previously stated wishes about her own medical care, and made decisions based on this information. They waited for several days, performing any tests that were possible to gather information on her brain's health, and after approximately one week, when all the tests came back with basically the same results - no brain activity - they removed intubation and she expired within an hour or so. Heartbreaking, but respectful of my sister-in-law and her wishes, and one of the most loving experiences I've ever witnessed.
258
@chuck in chicago
Exactly as I experienced with my Mother. The most impressive aspect of your story is what sounds like familial cooperation, listening, questioning, and mutual support. I had none of that. The week I waited for tests was pure hell being nagged by family one way and another.
Point is, it is good for the prospective patient and designated representative to understand patient's wishes but also critical that family understand as well-within bounds of privacy of course.
19
My fiancé collapsed at home after suffering a brain stem herniation. The neurosurgeon on his case was matter of fact about his prognosis, which was tough to handle at the time but which I very much appreciated in retrospect. My fiancé had made his wishes perfectly clear over many years and we were able to let him go without second guessing the process. Even with clear directives, the process is agonizing.
247
@Mary A Sorry for your loss Mary and thanks for sharing your story so others can learn from this sad situation.
2
Many years ago I spent a summer doing EEGs (brain wave tests) at a large Connecticut hospital. Every morning I was sent up to the pediatric ICU to test children who had drowned over the weekend. The hardest part of EEG testing during that time was dealing with grieving parents. After lunch I was sent up to the adult ICU to test patients involved in weekend motor cycle accidents. The hardest part of that EEG testing was finding a spot on the skull for the electrode placement.
91
@John Booke When motorcycle riders insist they don't need a helmet, ask them how much their head is worth. $800 is cheap compared to the cost of lifetime nursing care or one hour in an intensive care unit.
41
@Kris Aaron
In addition, ask them if they have completed Organ Donor paperwork.
19
@John Booke
Ugh, how hard that experience must have been for you. I can't imagine having to tell parents their child is not going to wake up, every week.
11
How does cost enter into decision-making? If a brain-dead patient, such as the boy in the first paragraph, is kept "alive" to help the family accept his death, is the family be paying for what is, essentially, their (non-medical) care? If they are not, would being financially responsible speed up their acceptance?
It may be heartless, and I would want the luxury of time to reach acceptance myself, but the fact is that medical care is not free. Whoever pays to maintain life support for the brain-dead or the permanently unconscious should have the right to decide when the cost is worth the benefit.
27
@Svrwmrs If you would want it for yourself, then really, you should be willing to grant it to someone else in their darkest hour. They are billed like everyone else, insurance will or won't pay, they will or will not negotiate what remains as the bills come in like all of us do when we use the healthcare system. I feel as a healthy person who pays into insurance, and who has not yet had to experience a devastating medical crisis, this is exactly who the money is meant for. And yes, I think it was a comment lacking empathy.
26
Families make decisions from the gut or heart but cost is (in my 27 yrs. of experience in the ICU) never discussed. One family opted for “everything” because they said they had nothing to lose. Once nursing home placement for vegetative patients is approached, the costs are shocking and often determinative in further planning.
20
I am a devotee of medical reality shows focusing on trauma centers etc. and am continually struck by the importance of not only communication but of an underlying trust in medical professionals. Unfortunately this is less likely among groups who have historically been given the short end of the stick, medically speaking. The end result can be decision making that leaves the patient with no quality of life and the family with a lifetime burden of care.
21
Tell your loved ones exactly how you want to be treated if you experience a devastating illness or injury. Explain what you consider an acceptable level of disability and dependence.
Put it in writing. Today.
When disaster strikes your family :
Ask, and perhaps force, your loved one's doctors to tell you the truth about the likelihood of your loved one returning to the kind of life they would want. As the author said, ask about likelihood, not best possible outcome.
Ask them what they would do if it was their parent, spouse, sibling or child. Or themselves.
The number of former doctors in nursing homes, hooked up to machines, is almost nil. NONE of them EVER want that outcome. They know very well what can happen.
Ask what their life will look like if you pursue artificial nutrition, ventilation, etc. If you don't know, you cannot imagine what it is like. Doctors and nurses now exactly what this existence entails.
Once you get doctors to think in this way, the answers should become clearer for all of you.
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@Cathy You are right: Ask the medical professionals what they would do for their family members. When my grandmother ended up in the ICU, my cousin, an ICU nurse in a different state, was livid that the family had allowed her to be intubated. He said "we [hospitals/medical professionals/families] torture people" with desperate but unlikely-to-help medical interventions. Similarly, an ICU doctor helped us accept our grandmother's eventual decision, after a brief rally, to refuse further treatment and move to hospice. He told us that his grandmother had made the same decision years ago, described what we could expect throughout the process, and assured us that it wasn't a bad way to go.
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@Cathy , I am a retired attorney, and I do training on advance directives for both health care professionals and consumers (non-medically trained people like me) Your points are excellent. There are two central things: conversations and documents. Conversations with the persons you choose as your health care agents about your preferences, conversations with health care providers about your condition and preferences and documents that identify the people who can make treatment decisions when you can't.
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@Cathy Absolutely right. Remember Terry Schiavo. That family tragedy turned into a political football.
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I’m my direct experience, spiritual and emotional support are key here.
Families can receive empathy and support, and their cavaliers explored and honored by highly trained spiritual care professionals. Their impact can be invaluable. Sadly, funding for spiritual care is very low at most hospitals.
Data strongly suggests patient and family members that receive emotional and spiritual support (i.e. spiritual care) report much better satisfaction with hospital care and communication. Big time.
Chaplains rock.
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@Joe Yo
I agree. And I wish more patients/families could see that chaplains/spiritual care counselors are not there to impose religious beliefs on them--they are there to help with the universal spiritual and existential questions/problems that we all struggle to cope with, regardless of faith background.
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The situation of major brain injury demands all the skill and compassion possible of the medical team. The key physician, the point person for communication with the family, bears a heavy responsibility. As a surgeon, I have been there, and I did not have surrogates, such as palliative care teams or psychologists, to help me. I was not trained for this. I needed to learn how to deal with this form of death on the job. The most difficult version of this discussion occurred when the brain injury was a result of surgery or some medical complication of therapy. Making the task even harder was the mandate to discuss organ donation with the family. Physicians dealing with brain death need to understand that the patient becomes, in a sense, less important than the family. Not only does the family need support in the present illness, but they may come back with questions even years later, and the physicians must be available then.
For many types of brain trauma, the answers for families are obvious, and ultimately time and the body sort out the prognosis. For brain hemorrhage or anoxic brain injury, the prognosis can be clouded, making the choices for families more difficult. I have shared in these situations from the side of the patient, and I have not been happy with the communication skills of the physicians. Clearly, we need better training in these areas. We also need to recognize that these situations lead to physician burnout, also a major loss.
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@Jeff
Best comment so far. Thanks for all you do for the patients.
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What a compellingly tragic read. My partner is just beginning as a junior doctor, with a speciality in surgery with the end goal being neurosurgery. I’m amazed at the stories and how much we’ve still yet to learn about the wonder that is the brain. David Eagleman has written a fantastic book, The Brain, for anyone interested in - a real page turner which had me gripped the entire way through!
I was sorry to hear about the writers personal experience, I’m all to familiar with the enormous mental and emotional toll working in the field of medicine can take. I can only hope there’s more support for him than there is in the NHS currently for our people on the front lines.
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@Nicky
Living in the UK now I have had experience with the staff on the NHS and how supportive they can be for the family of a patient with a serious diagnosis (in this instance my daughter's thyroid cancer). We are very grateful for this support. It made all the difference in our ability to support our daughter through her treatment.
As a member of the public I supported the junior doctors' strike and while I am unhappy with the 2019 election result, I sincerely hope the Tories keep their promises to properly fund the NHS.
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