Practicing neurosurgeon at an academic Cancer Center
Having worked at a level I trauma center, I have faced this situation many times. When there are family members present, that may be the easiest way to get an idea of what the patient may have wanted, sometimes directly sometimes indirectly. Some people make it clear...'if I can't be on a golf course, I don't want to you to anything.' But the resiliency of the human brain can make it hard for us to predict how it will respond, even for elderly patients.
I find a harder situation is when I as a surgeon know the chances of improvement are minimal based on the presenting examination, but family members insist on surgical intervention, or to ' do everything.' I've struggled with this situation. Am I just at the mercy of the family to perform what I know is 'everything' meaning surgery even if I know it will have little benefit, or do I not present surgery as an option? As surgeons we hold a tremendous amount of power, we can simply not present surgery as an option, but in reality, it is always 'an option' and the ultimate option. Albeit maybe not a good one.
Each situation is ultimately different, and I make a decision based on what I learn of the patient, their family, and what I think surgery can provide, but it's always a challenge.
2
I learned as a neurosurgery resident that I'm not obligated to perform "futile" surgery. In those circumstances, I discuss the suffering and disfigurement inherent to the surgery, and most of the time, the family will come to a reasonable decision. Furthermore, the conflict you describe is a perfect case study for an emergency "ethics" consult.
2
As a neurosurgeon, I read this article with interest, and found that it resonated with much of my own experience. Dr. Stern makes an excellent point regarding the impact of time-pressure on urgent decisions.
I was called to the ER late at night to see an unconscious elderly man with a gunshot wound to the brain. No other history nor even his name was available. We only knew that he was found outdoors. There was no way to contact any family members.
I knew it was unlikely he would survive with or without surgery, but surgery was his only chance. I performed an emergency craniotomy, evacuated the blood clot, bullet fragments, and necrotic brain tissue, and I placed an intracranial pressure monitor. The operation took several hours. When I finished I encountered his wife, an elderly lady, in the waiting room. I intended to gently tell her about his condition and poor prognosis. Before I could say anything she angrily asked, "Isn't it obvious he wanted to kill himself, you idiot?" She went on to tell me he had multiple medical problems, terrible chronic pain, and had discussed suicide with her on many occasions.
I still think I did the right thing from a moral perspective under the circumstances. Pragmatically, however, the outcome was ultimately a dead patient, an angry widow, and a huge hospital bill.
4
@Steven A. Reid, M.D., of course you did the right thing under the circumstances you faced, and the bad behavior of the patient's wife doesn't change that fact. So sorry that you had to bear the brunt of her anger on top of the enormous inherent stress of the situation; perhaps when she is in a calmer state she will apologize.
1
Remove the risk of litigation, complaint calls to administration and any financial incentives to perform “miracle” or “heroic” surgeries and let the professional training and experience of the MD be the final word. Encourage communication between colleagues in situations where the circumstances are outside of one’s comfort zone and I believe these healthcare providers will provide the best answer in a difficult time for patients and families.
3
I am firmly against taking extraordinary measures of any kind if they will not extend life and support a good quality of life.
My mother had pancreatic cancer, diagnosed when she was 82. She was not a good surgical candidate, so she opted to let the disease take its course. Home hospice and my father kept her comfortable until she died 4 months later. I thought she made the right decision.
My mother's brother decided to have risky heart surgery at age 88. If successful, it would have allowed him to be more active as he had previously been. Instead, he died a slow death about 8 weeks after the surgery. I'm not sure the doctor or my uncle made the right decision, but at least he was of sound mind when he made it.
My father died at 97 1/2 after a few months' decline. Again hospice took care of him. We the family felt this was right for him and they did a good job for him, this time in an assisted living situation.
For myself, when and if the time comes, please allow me to go with dignity if I cannot achieve a good quality of life after treatment for whatever comes my way.
3
@Barbara you are missing the gray zone. Many interventions (like the one your uncle undertook) have a clear possibility of providing an extended life and good quality of life. Unfortunately you don’t know the outcome until after the decision is made. There isn’t a right or wrong decision. The decision should be made collaboratively with the patient and/or family. That alone helps immensely to relieve the moral distress felt by the author.
4
A lot of the times surgeons are tempted to do a beautiful surgery that makes the patient different, but not necessarily better. It is the balance of the surgeon's talent - humankind side of the surgeon in the best interest of the patient.
A good friend of mine who is studying "Palliative Care" Shared with me a passage of a book she was reading. If I am allowed to paraphrase, it sounds like " In the early starts of medicine, all doctors could do was 'take care patients' (there were little to zero remedies) now days, Doctors are addict to healing / operating and too much often forget about "taking care of patients".
Good job Dr. Stern
6
The chairman of my surgery department often said he could train a chimpanzee to do surgery but it was the masterful surgeon who knew who to operate on as well as when and how to get them through their post operative recovery.
Dr. Stern beautifully describes his journey in becoming a masterful surgeon.
9
Bravo Dr. Stern.
5
I've spent about hundreds of hours over the past eight months serving as an advocate for my sick father. This article enraged me.
Consider:
"His wife, whom I later learned was developing dementia, accompanied him in the ambulance. She was frail, thin and appeared disheveled and confused. She knew little about his medications and medical problems and didn’t know if he was on blood thinners"
This is a shockingly inhumane sketch. Of course she was disheveled and confused: she was just up all night in two different hospitals, watching her husband suffer. And you know what, I'm a highly knowledgeable 29 year old advocate for my father, but I've struggled to give accurate histories the morning after ER all-nighters.
"He did not speak...He did not seem to understand what was happening."
How hard did you try to accommodate him? Did you try getting responses in writing, or by blinks or saccades? Did you describe the surgery in the terms that actually matter - risk and reward, not technical jargon? Did you try getting his input after the first surgery?
And: did you really not give the daughter time off the phone before making her decision? Did you really not recommend a second opinion? Did you really not involve palliative care until the decision was made? Did you tell her that you were trying out a fun new idea from a recent conference? Did you give her actual data, or just describe your 'gut' instinct? Did you really ambush the man's wife with the decision already made?
6
@Stephen
Dear Stephen-
I understand your upset but I can offer an alternative view. We advocated for my mother during the 8 weeks prior to her death. We did everything. We brought in 2nd and 3rd opinions.
What nobody would tell us but I knew in my heart, was that she was dying. There was no clear reason why she was dying but she had had been dealing with Parkinsons and had been put on opioid based pain meds (without our immediate knowledge) for a broken arm. From that point -her decline was rapid even though we got her to quickly wean off the pain meds.
Had we been told that she was dying, we might have gotten her home sooner. We did manage to have her at home 3 days before she died. We are so glad that she was in her living room surrounded by her favorite people, music and art.
3
@Stephen
You have clearly been through hell. Many of us have
But I think that your outrage against this physician is unfair. He tried to do his best. And he did much more than many surgeons would have.
Your own experiences have affected your point of view.
And with a word limit on this article (all newspapers have word limits) we don't know what details Dr. Stern had to omit. You make every possible negative assumption and don't consider that perhaps he did many of the things you ask about.
I am sorry that your experiences have left you so angry. But you are young and when you have been through this more times, you will be more forgiving
13
In my opinion you demonstrated the worst characteristics any physician can have, particularly a neurosurgeon.
You took it on the responsibility to care for your patient and then gave up; literally played God pretending to foresee the future. Unfortunately, arrogance such as your is in no short supply.
You had no business assuming the patient would do badly from re-operation. Perhaps if you had done your job correctly in the first place, chances were good he would have recovered without the need for further surgery. However, if in your judgement, he needed the original operation he certainly deserved the medically indicated follow-up.
Your surgery failed and then you abandoned your patient assuming for no medical reason that further treatment was hopeless. You had no right to that assumption. You simply gave up!
Your follow-up: Give up medicine and become a priest!
1
retired AMA attorney F/70
How about deleting the word "neurosurgery" in this title? This moral quandary applies to all rescue attempts in medicine.
I have a one-page plain-English Physician & EMS Orders for Life-Sustaining Treatment that crosses state lines. I refuse all diagnostic and medical interventions beyond a physician's clinical evaluation. Anchored in every citizen's right to refuse treatment.
That directive is in The Medic Alert Foundation's POLST database with 24/7 access by EMS and ER professionals who will see a bracelet and make the call to get my directive to stand-down from all SOPs.
Getting to better decision making among clinicians/surgeons is a shared obligation. Don't use online forms. Do use plain-English to write down your preferences + two Witnesses + Notary Public. Show your document to all family and neighbors.
For established clinicians/surgeons: consider doing more of these CME programs anchored in palliative care? OR just schedule yourself into your own organization's palliative care conference(s). Learn and use ADLs + QOL!
For all the obvious reasons, our moral anchor is tested with our youngest patients whose parents or family may have unrealistic expectations and with those older patients whose status considered as a whole must dictate attempt-to-rescue versus bring in and transfer to palliative care.
Morphine&Methadone by inpatient hospice IV is a quiet good death in hours. All ways always! Distress dispelled for all.
10
I have a friend who, when he was in his early 50's developed an excruciating headache when he was at work. 911 was called, EMT's took him to the hospital. He "died" in the ambulance as it pulled into the hospital.
It turns out that he had a hemorrhagic stroke. The doctors put him into an induced coma. They did some surgery. He finally started coming out of it after about 12 weeks.
All the muscles in his body were atrophied. He could not speak. It was impossible to know if he was actually thinking or just making sounds.
He never regained the ability to walk or talk. His medical insurance benefits ran out. The hospital released him to his home with his wife taking care of him, about 9 months after this stroke.
His daughter, who was a senior in HS when this happened, gave up her scholarship to go to business school and stayed home to help take care of him. (they could not afford to hire around the clock care).
His wife's life became 100% taking care of him.
The doctors and emt's decided to keep him alive, so he had no choice in this matter. He can't talk, he can't walk, his daughter had to completely change her career plans and his wife is now "nursing" him full time.
He never had a choice in what would happen to him. The "doctors" decided and it completely changed his whole family, plus he is 100% disabled. How is this fair to him or his family? In the not distant past, he would have died in the ambulance and everyone's life would have been better for it.
7
This is an impossible situation to manage. Without surgery, the patient would have died immediately, true. But the family would have questioned why a 50 year old was not offered a chance to live.
Doctors cannot predict the future
8
Last year my orthopedist said that he tried to avoid surgery that have: 1/3 chance you end up worse, 1/3 chance you are the same and 1/3 chance improve.
5
I would imagine surgical training is mostly about learning how to do very difficult things with precision. It would seem to depend on not seeing a whole person, but seeing instead the exact location to begin drilling.
Considering why and whether to do the procedure (or order medication) sits outside of technical knowledge.
2
Thank you! I hope all physicians and surgeons see a human being rather than a part that needs to be fixed.
7
“A lot of neurosurgeons operate on the assumption that operating on 10 people is worth saving the one out of 10 people who do well after sustaining such an injury.”
The problem with this mindset is that it reflects only the opinion of the surgeon and not the patient. This article screams loudly that all primary care physicians need to ensure that their patients prepare an advanced medical directive that describes what they want for urgent and long term care, not what a physician may feel is appropriate.
10
This is a great article. The most important thing is to figure out what is the best care for each patient. Not “what can we do” or “what would you like us to do” but what is the best care for this individual patient? As a general internal medicine physician, I am now asking the specialists what they think is the BEST care, and often it is very different from the original, aggressive recommendation.
11
The greatest gift my late husband ever gave me was to outline his end of life wishes clearly and put them in writing. When the time came, those guidelines made all the difference in the quality of his death.
27
This patient was lucky to have a clear-eyed daughter. Every person should acquaint themselves with what death and dying looks like. At the same time, physicians have an obligation to educate those who will never want to understand the dying process. This lack of education is what has been missing from health care.
18
Good for you. Dr. Stern. Why did you not consult the advance directives? I assume this patient didn't have them. Read mine, and they'll say, By all means, let me go.
4
OMG, a high and mighty MD discovers that talking with patients and family is a good thing. I hope all MD’s take this piece to heart.
7
The writer certainly does not come across as a “high and mighty” MD; rather he communicates the very difficult decisions physicians are faced with every day in a very thoughtful manner. Many patients do not have someone such as this particular daughter to speak for them regarding complex life and death decisions; this man was fortunate to have such a loving family member and such a caring surgeon. The article is not just about talking to families; it is about how medical decision making isn’t always black and white and takes a team effort to come to the best decision for the patient.
36
I don't think feeling "moral distress" in considering the best course of action for his patients indicates a "high and mighty" attitude. Quite the contrary: it suggests a high degree of empathy for the patient
27
There are certain topics that seem to cross "the great divide" - this is one of them. Looking at the diversity of comments I suspect there is little political tribalism when it comes to one's own life or death, but too many proffer prejudiced opinions about others.
How wonderful it would be if we could ALL discuss our differences in such an open forum without denigration, hate-mongering and racism. Beneath our skins we are all the same color.
Will someone please tell this to Donald Trump already! He really doesn't seem to get it at all.
5
One of the best advanced directives I saw was quite simple, elegant.
"Don't do anything for me that you wouldn't do for an old Golden Retriever that has led a good life."
23
Careful what you ask for, Dday. I had a friend who put their dog through advanced cancer surgery and chemotherapy, all for nothing, the dog died. When I asked them why they did it, they said simply that they could just couldn’t imagine being without their beloved dog. Too bad they couldn’t ask the dog what it wanted.
8
@Dday
retired AMA attorney F/70
Powerful plain-English! Get two Witnesses + a Notary Public to your directive so that it can cross state lines. Then pay $15 for two years to include it in The Medic Alert Foundations advance directives (POLST) registry available 24/7 to EMS and ER clinicians.
Then get and wear your bracelet that includes carved into metal contact information and your individual ID for documents. Bracelets that EMS and ER are trained to look for and pay attention to helps to enforce your preferences. Yours will also provide much needed laughter in otherwise grim settings and situations.
2
@Dday given the amount veterinarians can and will do, possibly adding that the dog was brought in by a penniless orphan would be helpful!
3
When writing out my advanced directive before brain surgery, I put down a great many details, scribbled in the sidelines and all. It is not the easiest thing to write but so very necessary and I figure the more detail the better and, should the case arise, easier on loved ones. Write things down, make those difficult decisions so no one else has to, make sure others have copies, be certain hospice is always on the table and not every last surgery is, unless it is desired. Modern medicine is absolutely extraordinary (and saved my life) but one must get one's own opinions and desires down on paper. It is your life, your one and only life, end it as you see fit if possible. Talk to your family, be certain everyone has all the paperwork done, it is perhaps our most important paperwork.
11
The medical profession should not treat death as a disaster. It is an essential stage of life. Medical treatment especially for seriously ill and aged patients usually inflicts pain and indignity on them without their consent. Possibly, acceptance of death and a spiritual approach to health and life could help the doctors and family members of patients make better choices.
16
It may be that what's needed in this situation is the kind of social worker who doesn't exist anymore in hospitals but may be brought in privately at a high fee to negotiate on behalf of the best interests of the patient and the family. Social workers in hospitals now appear to be all about getting the patient out the door so the bed can be used by someone else or into some procedure or onto some other available track that will provide another source of payment. The patient is one of hundreds at the hospital at this moment in time who are all now in the process of losing their quality of life and ability to function and it's too bad about all of them but the idea that doctors feel any sort of moral or humanistic attachment to an individual's outcome is the stuff of novels and dreams.
10
@freyda
Doctors can and do suffer moral distress when dealing with making the decision which is in the patient’s best interest. Although you may not have been exposed to it, many of the decisions occur in discussions with the patiient’s family, as happened in this case. In others, an ethics consultation may be requested so that the situation may be clarified; what is in the patient’s best interest; and how he/she may be treated with beneficence and compassion.
6
@Lee Hover, D. Med. Hum.
" an ethics consultation may be requested so that the situation may be clarified",,,How and with whom is such an ethics consultation possible and is it requested using the term "ethics consultation" or some variation? Are you sure there is any such thing outside your state or hospitals you have worked in?
1
So cynical. Not the medical world I see everyday.
Your comment about social workers is particularly insulting as it is inaccurate. I am not a SW, but can tell you they bust a gut for the worst pay in the business, dedicated to the best possible solutions for each and every patient.
6
Neurosurgeons tend to be assertive, even aggressive, and they are rewarded for performing more surgeries, even if those surgeries are inappropriate. For them it's a numbers game.
9
Some medical care, the more extreme things, resemble torture. It can be justified only if it works.
I recall a burn patient, who was so badly burned he could only whine and cry. They kept cutting at the dead flesh for near two weeks, before his body gave up. The Inquisition wouldn't have done that to a person.
My own father was being burned by the external heart stimulation. We could smell the burned flesh as it jerked his heart back. Finally, my mother let him go. She was always troubled by that, but also always said she couldn't let them do that to him.
At its extremes, medical care is an awful experience for the patient. Many people go through extremes before they die, almost by definition.
"We won't do that to him," must be said at some point, out of mercy.
20
Obviously, the decisive factor to the right outcome here for the good Dr. Stern and his elderly patient was the fortuitous presence of his available, forthright daughter in the decision making process. When presented with the probable post-surgical quality of life deficits by the doctor and her father’s likely reaction to these provided by the daughter, an informed and “best” decision could collaboratively be made. The worst case scenario would have been the absence of any family member able to reveal what the patient’s preference would likely be, or a family member who would have overridden that preference for his, or her, own narrow personal reasons.
10
As a medical student rotation on neurosurgery I saw a post op patient who on morning rounds was only able to move his big toe. The neurosurgeon said they had a success and at that moment I realized that what I felt was a failure meant that I should consider another branch of surgery. I did and retired last week after 42 years since finishing my Urology training.
30
Ah. So some folks are already discussing how and when to limit healthcare. Even before Medicare for all goes into effect. Yessir. Give the government control of your insurances.
2
@Kent Kraus I'm 75. I have my advance directive in place. I want so-called healthcare to be limited if it's likely to leave me a helpless vegetable, and so do most people I know.
35
@Kent Kraus
Oh, you may be an adherent to the highly inaccurate, but politically-motivated "death panel" accusation that surfaced years ago.
Advances in medical interventions, life-support technology, and critical care that enable maintenance of vital functions can keep a dying, terminally ill patient "alive" -- but what the "reality" is, is the interventions are prolonging inevitable death, often at great human suffering and pain.
Often these advanced technologies are prolonging the dying process for whom there is absolutely no possibility of surviving (w/o the machines) or regaining an acceptable quality of life. The residual chance of returning to a life capable of handling one's own everyday needs -- bathing, taking in fluids/nourishment, going to the toilet, dressing, walking, talking, recognizing loved ones -- is nil.
Think of it this way: for those who believe that it's God's decision to decide when one dies, well...those machines are standing in God's way. Because when the machines are disconnected, the person mercifully dies -- but unfortunately, because of "human" interventions, much suffering is inflicted.
22
If that’s how you read this it’s because it’s how you wanted to read it. But there is nothing there that hasn’t been part of medical decisions for centuries.
4
So, as a physician who works in ICU (and neuro_ICU), we have to do such discussions often because majority Neurosurgeons (in my experience) can explain all their perspective or qualms to us, but can't articulate it well to patient families (Dr Stern, am glad you took that course but you're in the minority here).
Also, hearing it directly from a Surgeon's mouth helps a lot.
But to everyone reading this article, a request...
Folks, please talk to your loved ones who are ill, bedridden, ones with mental or physical disabilities, esp. before dementia sets in fully, older parents or grandparents... about mortality, about the end of life, about what is acceptable to them and what is not, what does quality-of-life mean to them. Have these conversations with their primary care physicians or if they have a primary subspecialist, who can guide you along.
This sentence is too true to be ignored.
"But all too often, patients arrive by ambulance alone or families face these moments in crisis, contemplating death or disability in their family member as if for the first time."
Please, have that difficult conversation.
It matters.
55
My father was a neurosurgeon and deeply felt the pain and deaths of every patient he treated. He had the great fortune of practicing medicine in the 60’s, 70’s and 80’s - before the insurance companies and attorneys could make such a hash out of taking care of people that needed medical intervention. He loved being a doctor and a surgeon - more than anything - and gave up most of his time to treat and care for his patients, usually making two to three sets of rounds at 4 hospitals each day to make sure they were well and their families were comforted. He didn’t do it for money. He didn’t get paid to see his patients several times a day. He didn’t make more money if the surgery took 14 hours (sometimes they did) or two hours. He loved the process of entering the brain and fixing the problem. He was always amazed, and thankful, that he was paid to do it.
He told all of his children to stay well away from medicine — he thought it was devolving into a nightmare of industrialized hospitals, insurance protocols and mandates, with lawyers sitting in ER parking lots. Now, I watch my adult children try for hours to get into see any kind of doctor, despite the fact that they pay $300 a month for basic insurance that takes a huge bite out of their incomes.... they wait days to be seen or pay a fortune to go to an ER only to be seen by someone they do not know, who has no time to understand their illness. We are in the nightmare my father knew was coming.
45
@Babs4316
Your Dad sounds amazing.
I recall wonderful doctors like that, back in the '70s and '80s, treating my parents.
The personal hospital visits with their beloved internist, or a cardiologist or other specialist who actually took the time to know and treat them as people first.
Now, one gets a 'hospitalist.'
The whole system is on its head, and it absolutely is a business now. Very scary to contemplate one's future brushes with this new order.
8
@Babs4316 Who only pays 300 dollars a month for even the most basic insurance?
1
We just experienced this same scenario with my 82 year old father two weeks ago. We elected to not have him undergo surgery and instead have him receive palliative care in hospice. While we feel his loss acutely, we have comfort in the knowledge that he died peacefully, in a manner like humans in all the millennia before the age of modern medicine, quietly, gradually slipping away.
37
This physician did the right thing by questioning others who had additional information and were also probably more dispassionate and clear headed about the situation.
6
Several comments criticise doctors for choosing surgery in order to make money. I think that’s pretty callous. Many surgeons are on salary so one more or less surgery doesn’t affect their boat payment. But it’s lucrative for the *hospital*. Most of the insurance payments go for rooms, diagnostics, OR costs, nursing, overhead, et al. None of that goes to the surgeon.
24
@Stevenz
retired AMA attorney F/70
That pattern of payment where physicians/surgeons get paid out of the same bucket of money as hospital expenses is not the norm in the U.S.
Here, physicians and surgeons are paid separately from hospitals. Easiest example is Medicare: Part A covers hospitals and Part B covers physicians/surgeons and other listed health care professionals (e.g., from chiropractors to NPs and PTs).
The lunacy in the U.S. is that those MDs that choose a surgery residency/specialty versus primary care are paid at rates that take your breath away. Mine too. Even after years of negotiating to get to more dollars for primary care and fewer dollars for those who cut.
13
@Stevenz
Surgeons can make lots of money from being “consultants” to device manufacturers, such as hip replacements. The more hardware they put in their patients, the more “consulting” fees they get kicked back to them.
This money is in addition to their salaries.
3
Fine but that’s not what I was addressing.
2
Dr. Stern makes it sound that it's some accident that surgeons have lousy interpersonal skills.
No, it's the result of a healthcare system built on greed. They get paid nothing for learning and demonstrating those skills and a great deal for doing surgery.
It may not be very good for patients, but it's great for those doctors' wallets.
I say this as a physician myself.
19
Perhaps you misread your patient's cues. His pulling out tubes was a sign he did not want you to do anything. He may not have been able to process your questions but he knew what he wanted.
Doctors should not let lawyers practice medicine. Doctors perform many unnecessary and harmful procedures because they are worried that a ambulance chasing lawyer will second guess their correct decision to do nothing instead of prolonging a miserable life.
10
Most surgeons want to do what is best for the patient. The challenge is knowing the patient well enough to make decisions in their best interest. Dr Stern's excellent point was that the surgeon frequently first meets the patient in an extreme situation. There, he has to make educated guesses. This type of decision making is not for the faint of heart. It's gut-wrenching and difficult. Dr Stern articulated the extreme challenges surgeons face when making life-or-death decisions. Sometimes the easiest decision for the SURGEON is just to go ahead and operate. But the best decision for the family and patient is to avoid operating. This type of wisdom is something that is developed over time. It does not come naturally to the newly trained.
14
The important stat here is that HealthCare is the 3rd leading cause of death in the US, right behind cancer and heart disease.
I'll guess that the first leading cause of misery and diminished quality of life is bad choices by doctors and patients and families.
STOP already!
9
As a physician in a large retirement community. i see this kind of dillema dauily.
80+ YEAROLDS, OR THEIR kids, wanting expensive futile treatments for illnesses that have no cure.
or how about an 80 year old wanting an $85,000 spinal stilmulater. or an 85 year old wanting a hip rweplacement. come on. we are squandering money and resources on those who have passed their prime, but cant admit it.
if medicare 4 all is passed, the american public will have to get used to their doctors saying no, and get used to health care rationing.
12
@Rhsmd1- A 85-year-old in good shape deserves a hip replacement. It is not squandering money. They may be passed their prime but that doesn't mean they couldn't or shouldn't benefit. Exercise is the single most important thing we can do for our brains. If a person is trying to be active already a hip replacement will improve their quality of life, safety, and health. My mother died at 97 with a knee replacement, two shoulder replacements, two cataract surgeries, and a pace-maker. On the day she died, she walked into a restaurant for lunch. She was in her right mind until the end. All those things improved the quality of her life even though they were done during her 80s and 90s.
50
Insurance company bean counters are already saying no. There is already significant healthcare rationing in this country, even for those with so-called “good“ private health insurance. You sound like someone who has not recently tried, for example, to get a new-patient appointment with a specialist without waiting 2 to 3 months.
6
A beautiful thoughtful piece. Four years ago, my beloved sister in law was diagnosed with gliome multiforme, a sure death sentence at our current state of medicine. After undergoing a surgery that did not change the inevitable outcome, she was pressured by her physicians and the hospital she was in, to start a needless regimen of radiation therapy that only lowered her shrinking quality of life but increased the revenues of the hospital. The physicians who lent themselves to this charade were young bright talented people educated at one of the best medical schools in the country. What a waste of human talent! As for the institution, a highly respected one in my large city, its business model is simply shameful.
18
A very valuable article and discussion. I encourage people (including health care providers) to check out "Choosing Wisely," a tool to elicit information to support decision making about tests, treatments and surgeries of all kinds. It's an initiative from the American Board of Internal Medicine, and has doctors describe best- and worst-case outcomes from the procedure and identify the likelihood of each. You can find information at www.choosingwisely.org
9
Well as long as Dr. Stern felt better, that's all that counts.
5
@Jay Why That's not what he said, of course. Way to miss the point.
7
@Jay Why
>”Well as long as Dr. Stern felt better, that's all that counts”<
That is a flippant, sarcastic remark — entirely inappropriate for this article and Dr. Stern!
The reason that Dr. Stern “felt better” was because he knew he had engaged himself professionally and responsibly in a diligent attempt to discern the course of care that was in the best interest of his patient.
As a surgeon, if he JUST wanted to feel good, he easily could have simply performed another surgery to again remove accumulated blood, and then gone home — satisfied that he had performed the indicated operation, without the time, difficulty, and stress of learning the patient’s personal situation and conferring with the family.
Dr. Stern is an enlightened practitioner and if his writing this article results in more of his colleagues following his example, we and the health care community will be the better for it!
5
What story did you read. Not the same as the rest of us.
5
How would a patient be able to advise that they had an advanced directive if they are u responsive and they arrive alone at the hospital. With families living apart in not life saving situations or even if there is. How do you communicate with ED people what your wishes are?
4
@Mk
retired AMA attorney F/70
Put your plain-English advance directive that has two witnesses and a Notary Public so it covers all states into The Medic Alert Foundation's POLST database + show the contents to neighbors and family + wear a Foundation bracelet that MDs know to look for or at.
2
Advanced Healthcare Directive, better yet a POLST. And a Trust, a will, etc. With clear cut agency; someone who has the ability to follow your wishes (some people cannot stop themselves from trying to save you at any cost), DISCUSS those wishes, the very specific ones regarding degrees of physical AND cognitive decline. Pay an estate attorney, talk to people who work in palliative care and hospice. Ask what they would wish and why. You can learn much from their collective experience.
Your plans will likely never be perfect, but no planning is the worst alternative. Ask those who have been in that situation.
When you are the agent, your responsibility is to that person, NOT everyone else who believe they know better, who resent your agency and the your unflinching, undivided attention to the person for whom you speak.
And have copies... of all documents, multiple copies - be prepared to hound the doctors, hospitals, nurses, case managers, etc. And to correct mistaken, misguided, manipulated beliefs as to who has agency. Insert yourself and choose an agent who will do the same on your behalf.
I found the medical teams were grateful they weren't making impossible choices for people, that patients had considered the possibilities, made their wishes known and documented, and had, at a time when they were completely cognizant, chosen a proxy who could & would act in their interest and with complete regard for their wishes. This shouldn't fall to the medical staff.
7
@Ann Dee
Thanks for this. well stated.
Have copied your clear eyed description of How to Be a good medical POA, sent it to myself and to my POA.
Agree with the POLST, (in PA can obtain the form online) and review with relevent ppl - more than once.
Aim for "Absolutely Not! she said she Never wants that."
2
@Ann Dee
retired AMA attorney F/70
Add the advance directive to The Medic Alert Foundation's POLST database + wear a bracelet that has contact information and ID for each individual's document. Go to where EMS and ER professionals know to look with these bracelets.
1
I wish every doctor would have this experience. My brother suffered a massive skull fracture. He had no relatives to make decisions for him; he was living under a false ID and had no cell phone (he was homeless and walking across a street when a bus hit him). The neurosurgeon saved his life; but he spent 30 days in ICU, 30 more days in the hospital, when by luck he remembered his social security number and the hospital found me. He spent the rest of his life in a wheelchair in a nursing home, unable to care for himself. For most of that time, he was depressed and miserable. He lasted three years like this, when finally he got sick enough that, as his guardian, I could legally place him in palliative care. He died three days later.
He often said he wish the bus had killed him.
18
@Jeffrey Wood I’m so sorry for your loss and your brother’s prolonged misery. I do believe that you were a beneficial and caring source of support for him.
3
No. It isn’t.
2
There is a good book on this subject 'Do No Harm' by the British neurosurgeon Henry Marsh. Worth reading. Very enlightening. Too bad the knowledge won't be of much help when you are incapacitated by the bloody clot in your grey matter.
8
I too will be printing this article to keep with my healthcare directive. Awhile ago, in a NYT comments section like this, a reader wrote a statement that sums of my view perfectly, “A peaceful death is not failure”. That article was about the death of a Doctor’s dog.
7
Would that we all could have Dr. Stern or one of his ilk in trying times with difficult decisions.
4
''Death'' is such a dirty word. So, I guess, is the phrase, ''first, do no harm.''
4
The other side: Lawyers and paid guardians putting disagreeable elders with antipsychotic drugs and quack retirement doctors withholding court blocked offered medical records.
An article like this should get everyone writing up their advanced directives.
Dying with tubes and diapers and semi-comatose is the worst thing you can do to your self and your loved ones.
11
that's some real doctoring right there...
5
Thank you.
5
NOT seeing alot of the other side of this prospective. Slapping drugged elders with antipsychotic drugs? Worse side effects than opioids?....
3
It’s remarkable to me how many comments suggest that it is the physicians or surgeons who want push forward, often for profit motives, and often against the wishes of families. I’m a critical care physician and involved in these decisions on an almost daily basis. It is almost always the patients and especially their families that want “everything done.”
26
Fully agree. Guilt ridden conflicted family members can’t face reality. In a few cases they need the benefit checks coming.
Doctors are often helpless countering family members wishes.
7
My brother-in-law, who was only 55, developed a CVM which was growing and pressing on his brain stem. Very few hospitals were able to operate. We brought him to one of the top hospitals in NYC, but the surgeon was unable to take him until a bed opened up. They scheduled it for a week later, even though we begged him to take him now, as in weeks he had lost his ability to walk and the pain was unbearable. Three days later it burst, we had to get a medivac to take him in to NY. The prognosis was poor, but the Dr. did not really recommend against surgery. My BIL fought, but after 2 years in and out of hospitals and nursing homes, where I saw first hand the shortcomings of our for profit healthcare insurance system, he decided to pull the plug. After watching what this kind, beautiful man went through, and the utter destruction of my sister, please talk to your patients honestly as to what to expect. I would not want to see anyone else go through this..
11
Thank you for sharing the struggles you went through to determine a course of action that was truly right for your patient. We all depend on both the professional skill and the moral discernment of doctors and it’s reassuring to know there are physicians like you who are willing to ask and answer the tough questions on behalf of their patients.
4
This issue is especially common in the treatment of cancer. Many times the patient is only offered a 3-6 month increase in survival, ofter accompanied by a deterioration in the quality of life. I have long felt that the patient should be given better options. For example, either the treatment or the cost of the treatment, which the patient could apply to something that he would like to do before he leaves this life. Perhaps a trip to Hawaii or the South Seas, or anything else on his bucket list. A chance to enjoy what remains of his life rather than enduring iatrogenic suffering.
16
As a physician who cares for children with complex cardiac disease, I often face the other side of this moral-medical dilemma: family members who want absolutely everything done to their child despite no chance for meaningful recovery. In fact, families will sometimes blame clinicians for "playing God" when they refuse to perform interventions that are futile at best and cruel at worst. There are no easy answers to certain situations, and everyone loses. However, as discussed in the article, the best course is to always keep the lines of communication open, and to have many conversations with family members-- two-way conversations that probe the depths of understanding and the formulation of long-term action plans, not just one-sided proclamations about what the short-term risks and benefits are for a particular intervention.
14
William Shakespeare said it best. " Once dead there is no more dying." Medicine at its best is a team effort--family, other physicians, other members of the team, need to reach a critical decision. The Lone Ranger mentality is not needed, and ill advised.
9
"The outcome - not what we hoped for..." tells in a nutshell the denial of death in the medical and larger community. The patient's age is not given - "a wiry older man." Wishing all our elders a natural and peaceful death when medical intervention is deemed unhelpful or actively harmful to bodily integrity.
7
Have clear directives about your wishes, delegate Power of Attorney to someone younger and well informed (my son, who is a doctor, not my husband who is 3 years older and has memory issues), and hope to have a doctor like Joseph Stern.
And yes it is easier to 'do the surgery' because no one will blame the doctor if the surgery goes well, but the patient does poorly.
The 'moral distress' is often stunningly absent in doctors, I've found. I think it is 'trained' out of them, actually.
15
@elained
Very well-considered and said. As an individual, I have done everything you suggest, very carefully and with great definition, hoping to have made the right decisions.
As a Doctor, I MUST have objectivity which is, unfortunately, sometimes interpreted as being amoral or crudely distanced. That is not the case. We must give the patient ALL the facts and ALL of our considered knowledge and let him/her make the decisions, perhaps with the help of loved ones. We can only advise. It would not be fair for us to "put ourselves in the patient's position" as far as decisions go, but we certainly can where empathy is concerned - and most of us do.
As also an Ethicist I have labored over life/death issues for many years - they are never easy. I feel strongly about affording a terminal patient the right to die with dignity and not in pain, but where there are options, I must distance myself and defer to the patient every time if he/she is still "there".
10
@RealTRUTH
Well stated!
My wife and I have executed detailed Advance Medical Directives, discussed options, and filed copies of our AMDs with our primary care physician to be included in our Electronic Medical Record. Despite all these precautions, we could still be hostage to a situation where our EMRs are not available, and some "hot-shot" decides that he (I've taught Medical Students, and it is almost always a "he") will pull out all the stops to "save" us. We need a universal EMR system that is easily accessible by all providers.
20
@Frank
retired AMA attorney F/70
There is a universal system: The Medic Alert Foundation has a POLST registry to which you can add your AMDs. Then wear a bracelet that EMS and ER professionals are trained to to look for that has contact information 24/7 and ID on individual documents accessible in minutes.
To be assured that your AMDs cross state lines, at a minimum, have two Witnesses and a Notary Public.
Mine is one-page plain-English that says I refuse all EMS interventions and only agree to an ER physician's "clinical evaluation." No MRIs or ports for IVs. I have a wrecked body is written into the last paragraph and I want Morphine&Methadone by inpatient IV either in an ER or hospice inpatient bed.
3
If the alternative is worse than the risk it's worth it. So long as the doctor is motivated by concern for the patient and not money it's fine. Just ensure the patients know the real odds and ALL of the complications that can occur. I've found a lot of surgeons tend to downplay, if not outright skip over, the negative complications that occur with a particular surgery.
Then make sure they have a living will in place in case things go south. DNR, pull the plug in the event of coma, etc. There are plenty worse things than dying. In many cases death is a relief. Life at any price? No thanks. You have to check out sooner or later regardless.
6
In case anyone reading doesn't already know this, neurosurgery is the hot specialty for medical students these days, considered the most difficult, demanding, prestigious residency, and very remunerative. It is not attracting the spiritual, contemplative and idealistic crowd. When trying to suss out the value of a neurological operation for a loved one, it might be best to avoid metaphysical criteria, like quality of life; instead, press the surgeon for *data*. This appeals to his or her inner scientist and keeps communication on a concrete level s/he best understands and respects.
12
My mother had several brain aneurysms rupture at the age of 49. Her neurosurgeon advised me that she had a 90% chance of dying on the operating table, but neglected to mention any of the other potential negative outcomes. I was only 17 at the time, so I'm not sure how much my opinion would have mattered, but a little warning would have helped ease a lot of the painful fallout after my mother's "successful" 12-hour surgery.
While she recovered physically, mentally and emotionally she was never the same again. She did go on to live another seven years, but they were very painful for everyone involved. I don't think she would have opted to live like that if she had had the knowledge and capacity to make that decision.
When it comes to complicated surgeries where the very essence of a patient's being is at stake, it would seem like the question doctors need to ask should not be limited to whether the patient will survive, but should also take into consideration the kind of life they will have to endure if they do.
It's been five years now since my mom died. I try to remember her as she was pre-surgery.
59
@Been There
Thanks for your post! Your personal story is touching and adds something special to the discussion. I am sorry for your loss.
4
I think that too often surgery is performed to protect the surgeon and facility from lawsuits (we did all we could, and did not withhold treatment due to patient’s advanced age), or procedures are performed to collect data for an going study (I have seen this sort of reasoning in cancer treatment). Joseph Stern sounds like the kind of surgeon you want in your corner.
21
For most of us, I think there needs to be an assurance of at least medium term survival, that is 5-10 years, before agreement to most surgeries. If you only gain a few months or a couple of years, maybe you should spare yourself. The cure is usually worse than the disease. Ask cancer survivors. Quality of life, for sufferers of chronic or terminal disease, is pretty much everything. Remember, hospitals and drug companies want you to "survive" as long as possible, so they get their hands on as much of your money as possible. They will give you false hope if it can keep you on the line. Is short term survival worth losing all your remaining resources?
15
Even if they are in agonizing pain or so medicated they are basically comatose? Having been in this situation, I think it is an awful thing to ask your family member to suffer dreadfully so you can have "one more" day, week, month or year.
3
Surely you are not equating ‘pushing genocide’ with urging people to write advanced directives?
1
Well put and well said. Many doctors do not think about long-term prospects for pts. They're mostly focusd on short-term and recovery.
!I practiced in a small town for a number of years. There, a doctor could not escape the consequences of his decision. The doctor would see his patients in everyday life, at the pharmacy, at Walmart, in the park. One could not remain anonymous. That, alone causes a doctor to think a little more clearly about the consequences of hismedical decision-making. Thanks again for an article that describes precisely this challenging dilemma
30
90 years old is not the new 40. Neither is 80, nor 70. We need a societal wide discussion and culture change and end of life care.
28
Wow, again with the ‘genocide’. We’re talking about folks making informed decisions about the level and type of care that they want to receive at end of life.
3
You told half of the story. While the decision to move to hospice care seems well done, what about the needs of his wife who was in early -to mid-signs of dementia? How was that resolved? It is that myopia of doctors that is omnipresent.
I've spent a career in health services including teaching medical students and graduate MDs. For the most part, their communications skills are just abominable with very little interest in improving them. This is less so with my female students or foreign-trained doctors.
Let's step up communication skill education. I only expect my mechanic to fix my car and, in the most basic language, explain what was wrong. But can't we expect much, much more for physicians?
15
@Bill Thank you for bringing up that only half the story was told. However, this author is a neurosurgeon, not a social worker, not a family medicine physician who follows the whole family and not a close relative. His responsibility was first and foremost to his patient and then to the family members who could understand and participate in the decision on future care. I'm unclear why you think he is on the hook to ensure that the wife with dementia has her needs met or that he needed to provide further narrative on her journey. You chuck that up to the omnipresence of myopia in doctors but this author focuses on the fact that his decisions were made in discussion with and input from family members. I fail to see the myopia in that.
27
@Bill, huh? Perhaps you missed the detail about the patient having a daughter and son-in-law? It is the responsibility of the patient’s family to see to the wife’s needs. If the couple had no children or other relatives to see to the wife’s care, I think the hospital doctor (hospitalist) and social services worker might coordinate to refer her to a case worker in county social services. But she is not the responsibility of the surgeon, in any case.
21
@Bill Why? They are just body mechanics, pill pushes or knife wielding. It is the rare "medical professional" that can provide true healthcare.
The author offers a good description of moral distress, its sources and the means for resolving it. However, as the leading surgeon on a neurosurgery team, Dr. Stern can relieve his own moral distress simply by deciding not to operate. It's good that he makes those difficult decisions. But much more attention needs to be paid to all the other clinicians (including members of his own surgical team) who are required to deliver treatments that cause them moral distress but with very little opportunity to alter the decision about whether the distressing treatments will be delivered.
The most morally-distressed, weary and frustrated clinician I ever witnessed (as a bioethicist participating in teaching rounds in a hospital) was a nurse who was required to stand at the bedside for 12-hour shifts, delivering care to a semi-comatose man with almost no chance of improvement. When the attending physician stopped by for his five-minute visit to the patient, she could only ask in desperation, "Doctor, how long as we going to keep doing this?"
21
@John
Thank you< John, for your deep insight in explaining moral-distress in patient care. You expressed eloquently an image of a nurse who was fatigued, helpless, and bewildered by her responsibilities to a patient who had almost no chance of improvement.
Indeed, "Doctor, how long are we going to keep doing this?"
13
My sister died in her forties of an incurable heart condition. The last flurry of surgeries were money-makers for the doctors, but my sister's final weeks were torturous. A ventricle pump as big as a refrigerator, meaning you'll never leave the ICU? When does helping become hurting? When large sums of money are involved and quality of life becomes secondary.
I wish it gone differently.
When a person clearly isn't going to get better or live much longer, adding more pain, blinking lights, beeping sounds and delirium may not be the best answer.
Advocate for the ones you love, even if advocacy means saying goodbye.
88
Never stop listing to the otherside???!!
I wish that there was a national data base for advanced directives that physicians and hospitals could tap into and patients could give detailed instructions on their care.
The system is somewhat random right now. If we are unconscious and our spouse or other family member is unavailable, then we are subject to whatever the hospital or surgeon's standard procedures or cultural whims may be at that time.
I would pay for such a product if I was sure that every hospital had access with appropriate safeguards. What happens to me at the end of my life is that important. At 70 years of age, I do not want any procedure where there is a high risk of a poor outcome like neurosurgery. In such a data base we could be much more specific than current state advance directives law which in most states gives you only two broad choices.
Surely there is some entrepreneur out there who could create a business around this concept.
28
@Mike--I agree with you. I too am concerned about what might happen to me at the end of my life. I know I don't want to be left to linger. My problem is that in my small community our only hospital is affiliated with the Catholic Church, and so they will not honor any DNR advance directives.Their policy is to preserve life under any circumstance, even in violation of a patient's wishes. I will have to move from here to a community with a secular hospital if I want my wishes to be followed. This hurts me, as I've lived here a long time and have many friends. But, this issue is important enough to me to give me no other choice. I don't think it's right that the hospital can force their religious policy on patients, especially when there's no other medical facility to choose. Our entire community is forced to bend to the will of the Catholic Church.
42
@Mike
With HIPPA, it is so hard to share data. Additionally, different states have different requirements. Here in PA, I need to know the patient's wishes and I write a DNR order and we move forward . NY is different. In Pennsylvania we have a POLST for out of hospital wishes that are to be followed ( kind of what you talk about, ) but NY state has a MOLST that is subtly different. So a Federal standard is needed, but every time someone in Washington talks about end of life decisions, someone starts yelling about "death panels".
We need society to to move this forward. Too many people have too many unrealistic expectations in my experience. I am a Hospitalist, so for me to meet a family, explain how the patient is and get reasonable code order in within 15 minutes of meeting them is difficult. Primary Care Physicians, Oncologists, Surgeons, everyone needs to have these conversations BEFORE people become sick.
16
@Kevin
I believe the HIPAA issue is easily soluble. First, patients would sign a waiver to allow hospitals and physicians to use the data. Second, providers would sign the same agreements they do with other entities in terms of using protected health information.
This would not only improve the flow of information between patients and doctors, it would potential result in cost savings as unnecessary and actually harmful care is avoided.
6
This is a stunningly perceptive and honest assessment of Doctor Stern's and others "moral distress." How do we address this problem in a society that reveres youth and life and will do anything to extend it?
While I feel it's imperative anything and everything be done to medically help a sick or injured patient, there is, and must be, a limit to the things we do that might be injurious, or unwanted.
There is a limit to what the body can endure and what protocols medical professionals can be expected to follow. We need much more education on this subject for doctors, patients and their families.
12
I've been very lucky. When a visiting professor in Edinburgh, my carpal tunnel syndrome got markedly worse and affected both hands, effectively incapacitating me. The Scottish neurosurgeon told me he could operate within two or three days and alleviate the pain. But he went on to say I have root nerve involvement from arthritic changes in my cervical spine, evidence of severe arthritis in my shoulders, and tendonopathy. He thought within a year I would be worse off following carpal tunnel release than not undergoing the surgery at all -- after all, the surgery carries negative as well as positive consequences. More recently, I developed lateral spinal stenosis arising from an old spinal compression fracture. My Canadian neurosurgeon told me that the odds were I'd be worse off following surgery than avoiding it through physio and a property designed and executed exercise program. He was absolutely right. Egotistical, aggressive, incompetent or greedy surgeons will always downplay risks and play up benefits -- falsely and dangerously. Everyone should have a listen to the podcast "Dr Death" on the perils of neurosurgery and the invasive and reckless approach of for-profit American medicine.
30
@Cephalus--I disagree with your characterization of surgeons as "egotistical, aggressive, incompetent or greedy." Though there are always a few bad apples, the majority of surgeons are competent, kind and dedicated. It's just that surgeons practice surgery. They are not general practice doctors. They are trained to treat medical conditions by removing or correcting whatever is causing the problem. That's what they do, and it's what they know. Why be surprised when a surgeon suggests surgery? Of course they think that's what is needed. Other opinions are always necessary before surgery so the patient can gather information from different sources. But, don't act surprised when a surgeon suggests that surgery is what you need.
4
Very timely, for me. The Husband and I recently drove to Florida to visit my Mother and Stepfather. It was his 89th Birthday. My Mother is 80. It’s remarkable what a change can happen between visits. No new disasters, Hospitals or Surgeries, but there is a significant cognitive decline, in both. So yes, we had some good talks about further medical interventions, and future
“ plans “. Please, do not delay speaking with your Family Members about their wishes. And especially do not allow an emotional, overly religious or a person without common sense be involved with decision making. I’ve seen it a hundred times, it does not end well, for anyone. Especially the Patient.
42
A few years ago I aggressively sought every available medical treatment for a beloved pet with renal failure. Even when she had lost nearly 70% of her body weight and was struggling to get to food after having been fed an appetite stimulant, I failed to see that I was prolonging her death, not her life. My actions caused her to suffer terribly, but even though it was right there in front of me, I couldn't admit to what I had done, and therefore, I could not stop.
It takes a rare strength of character to see this side of these challenges. In the moment, in a crisis... I hope that when it counts the most, when it is my family, that I will have developed what it takes to see it clearly. Thank you, Dr. Stern, for this, for helping us understand and prepare.
I look forward to the publication of your memoir!
26
@Jackie
I believe that the situation you have described does indeed resonate with Dr. Stern's finely written article. If I may, I think that I might wonder about a different perspective. A major part of the responsibility of the nature and quality of the care for your pet laid with the medical practitioners that you consulted. It would have been their duty to be very honest and straight-forward with you about this important matter, with a big emphasis on not doing any harm. In that regard, the insights revealed to us by Dr. Stern show themselves to be universal.
14
@MTe. So true! In my case, I had known our veterinarian for a long time, and I pushed beyond her recommendations and comfort level. I recognized her hesitations and heard her words but only understood in hindsight. Appointment after appointment, there I was, unable to come to terms with mortality, asking her to do more. Does she face this pressure every week? Every day? Would it wear a person down? I'm not sure how much responsibility should be on the patient/client side but perhaps some.
10
@Jackie
You've added a new dimension to our understanding. Thank you.
3
My personal experience echoes this article from a patient's perspective.
In my case the condition was severe aortic regurgitation which requires open heart surgery. The setting is a highly rated multi-hospital complex and my doctor is a world renounced head of cardiology. My age is at the median of life span for men, with the specter of dementia more salient because of family history, so my major consideration is the exacerbation of this disability even if the operation is a "success"
When I first broached this concern in writing, the doctor's fellow responded that she knew of no such iatrogenic sequelae, ignoring the link I sent her. As my condition worsened the physician became testy, so I did extensive research and contacted dozens of experts, confirming that my hesitancy and concern was justified.
Had I been the one in four (or so) who are disabled from the operation (my condition has stabilized (kh*) there would be no recording of this outcome. Worse, our legal culture does not make it easy to terminate one's own life, even in the worse case permanent vegetative state outcome.
Few people have the capacity to confront the expertise and authority of the medical professionals who, while meaning well, resist complicating their lives by those who want to prevent a possible dire outcome that's worse than death.
*(kh) is Yidish for kinehora- as in "knock on wood"
56
I find this doctors opinions are a bit disingenuous given that he and his industry are the proverbial casino owners in a gamble that pays their profession the highest of any in medicine.
This is not to say neurosurgery is not a noble calling, however it is also one of the fields of medicine where doctors can always excuse potential bad decision making, poor skills or outcomes on the complexity of the system.
I would have to ask the doctor if he went to an investor with his life savings and the person told the doc that he has a strategy that in 90% of clients ends in total loss or worse, and 10% ends out only losing a little bit or breaking even, would he trust that person with his life (savings)?
I forgot to mention that the doctor will have to pay the investor very large sums of money regardless of the poor outcome.
If the MD has any moral shortcomings for his work, how about the ones where you got it wrong, comp the patients bill for your work. If I were to deliver bad service to a client, or done worse, the least I could do is not charge them for the disservice. Not so in the medical world.
6
@mediapizza The "investor" analogy is specious. Unlike every stock portfolio, every life sooner or later ends in "total loss", if that's how you think about death. It's the natural and inevitable conclusion. With neuropathology, the end is often foreseeable. The question, assuming one is not in denial of that fact, remains: how do you want your own final chapter to play out?
15
@mediapizza
I think you are making invalid assumptions.
3
@mediapizza
Your post made me think of the old newspapers (1890-1900-ish) I used to have, which carried advertisements from doctors: "No cure, no pay."
1
The author was fortunate to have attended and been helped by the conference on palliative care. Shouldn't bioethical train3be a standard part of training for doctors?
21
I commend the doctor in confronting his moral distress. Among proceduralists, like surgeons, it sometimes feels to me like they take all comers as long as the patient can stomach the risk (often poorly considered and under time constraints) and there is "a chance". However the inevitable poor outcomes are often left to linger, and ultimately die, in the critical care and inpatient wards once the surgeons determine that no more can be done surgically, and the moral distress and ethical quandary becomes the problem of the intensivist and other staff (a much examined phenomenon). It is refreshing to hear a surgeon take it upon themselves to question the morality of his work.
17
I practiced Nursing for many years & watched many patients undergo futile treatments and surgeries because "it gave them a chance" when palliative care would have been the optimal approach. It is a tough call & I give the author credit for his queries. I had a patient who developed a tumor that MDs thought they could treat with a brutal surgical procedure that offered little benefit to the patient but great experience to the surgeons as the surgery opportunity did not come up often. It's a last ditch thing. Because of my experience I had seen the effects of that brutal surgery. ASAP he was on the OR list. Because of the patient's age, co-morbidities, and very slight ability to recover, a few other experienced nurses & myself advocated for that patient to receive palliation & put our collective feet down against an unnecessary & dangerous procedure. Once his family got more information they agreed with us and declined the surgery. The man received palliative care and passed on with his family by his side, living the remainder of his life the way he wanted. My point is that the decision for procedures and treatments is one that includes many disciplines, advocates, family (if there is one) and should be ruled by the principle that just because you have an available treatment does not mean that you use it. My job was to advocate for the patient and with their consent help them make informed decisions. These are not easy decisions. Tough as they are, they are part of life.
120
@linda fish Thank you for your insight.
7
You do realize that evil abounds in the money STEARED LEGAL COMMUNITIES...for the 'other half' anti psychotic drugs are just as bad as opioids, well end of life people should enjoy opioids if needed NOT ANTIPSYCHOTIC DRUGS....
1
@linda fish Thank you for your kindness.
4
Thank you for this, doctor. There are worse things than dying. In caring for 4 slowly declining elderly parents, I have found it excruciatingly difficult to pry clear information out of the medical community about possible results of treatments, benefits/risks, and effects on quality of life.
55
@Michigan Native it is also sometimes impossible to pry clear information from an elderly loved one who refuses to consider the notion of their inevitable death. Not for lack of trying on their adult children’s part, my father and his wife repeatedly refused to discuss options or consider signing anything related to ‘end of life care’. Since they were both cognizant, there was no ethical choice other than to honor their wishes...to do everything possible to prolong life. As my Dad’s only surviving child and primary caregiver, I was in a position of going against his wishes or against my own strong beliefs regarding end of life (his wife was emotionally absent). It was a terrible experience, but I honored his wishes until the bitter end. We both suffered in different ways. He is at peace now, and I am healing. His wife will be her own children’s problem. Another point, during repeated trips to the hospital, never once did a doctor advise or support unwise or unnecessary treatment. They always asked him and were bound by his choices as much as I was.
8
Yes, another hard, hard situation at the end of life. You, and many of us, are doing or have done the best we can.
1
Thanks for sharing your process.
When you wrote "What if I make a mistake?"
I thought, very good, a doctor that wonders if he/she is making a mistake.
I deeply appreciate the humility necessary to ask yourself that question.
53
@American2019: Do know that many if not most of us ask this of ourselves often. There is a certain amount of confidence you must have, more importantly that you must display, to care for patients in serious situations. Honestly there is not a lot of glamour in this job. Helping people rather than hurting them is always the goal and it is not always clear what side your decision will be on.
4
It is disturbing that the default is leaning away from providing potentially life-saving care, even involving simple procedures, mainly on the basis of the age of the patient.
5
Age did not seem to be the primary reason to reconsider although a major component, rightly so. We know that the ability to recover greatly diminishes as we age and many would not choose to live such a compromised life in a nursing home, unaware (as confirmed by the patient’s family. I commend the surgeon for considering the big picture, and in particular, the patient’s expressed values. More is not equivalent to better care and allowing nature to take its course is often the kindest choice.
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@PL
I disagree. The age of the patient is enormously relevant in terms of the likelihood that the patient will return to a meaningful life. We need to stop considering an operation a success if the patient simply lives through the surgery. A patient who lives through this surgery but no longer can manage their own lives is not a success.
The chances of this kind of outcome increase with age. Those are simple facts, and need to be part of the equation.
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@HML -- the outcome is still unknowable in individual situations. The decision of whether or not to attempt to save a life is based on assumptions that are now stacked against the patient. Without the surgery, death is a near certainty. This is a trend that must be considered very carefully; there is no undoing an error in such a decision.
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Wouldn’t it be prudent for surgeons to be required to be trained in palliative care. It would prolong their training but would assist them in the most difficult moments of their careers.
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@Regina
Surgeons are there to cut. They will not assume a family practice doc role. If you decide against surgery they are out of there.....always always get a second opinion if you can, preferably someone who does not have med school loans to pay off.
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Thank you this article. I am going to print it and attach it to my health directive. Although I have the health directive, I do not feel that it is really particularly reflective of how I view these types of circumstances. I feel like it sounds very lawyer-ly, and given that my husband is not keen to discuss anything to do with dire health situations or death, this article really points to how perhaps something that I could write myself, maybe as an addendum, might be useful to a doctor. I also need to make lots of copies and put it all over the place so that people can find it when the time comes.
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I supplemented my advance directive with additional information in an attachment. That additional information expresses my beliefs about life and death, and my values and commitments, in a way the directive itself dies not. I hope it provides a view of the person who is behind the directions, much as this article captures an alternate perspective.
That said, I too thought about attaching this article to my advanced directive!
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@Jane Look up Physician Orders for Life-Sustaining Treatment (POSTL). An additional document, supplementing an Advanced Directive, that spells out in more detail what should and should not be done under specific circumstances. It can be drafted taking into account one's medical history, so that the more likely scenarios are covered. But overall there is no substitute for a frank discussion with your spouse or whoever holds your power-of-attorney for healthcare about your wishes and goals. It is a hard, hard discussion to have emotionally and spiritually.
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@Dana Broach
Having the written directive is important. I agree that the designated person needs to know, but sometimes the hospital or doctor won't take their word for what you ant.
3
Clear and concrete personal decisions for medical treatment bolstered by frequent conversations with the family members who would see that those decisions were followed is essential. The first time I spoke with my mother about her wishes was sad and uncomfortable for me but I felt grateful and relieved to know what she wanted for herself. Having this information will ultimately guide any medical decisions I may have to make for her. I’ve also made sure my children and I have had the same conversation. But even knowing what your family member would prefer doesn’t make the decision any less painful or frightening. This is why communication with the physician is vital. This is why support from the entire medical team is so very important.
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Excellent.
We all are responsible for opening the conversation whether we are treating or receiving. It’s a two way street.
Thanks Dr Stern!
Look forward to your memoir!
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@Eli Tassel we agree! Our website has lots of resources to help get the conversation started: https://theconversationproject.org/
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Bravo! As a daughter who dealt with my mother’s end of life decisions, we sorely need the best, honest, advice from the doctors who are providing medical care. It is very hard to get. We need to have a better decision tree analysis sort of thing for these situations.
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@AjaBlue This very much resonated with me. We are conditioned to accept the advice of doctors as authorities without question (check out the old Milgram experiments on obedience to authority and the power of a simple white coat) -- and we must inherently trust that our doctor's recommendations are unbiased, grounded in holistic context, and in our best interest. But in reality, most doctors do not take the time (or show the desire) to understand our motivations and preferences, or to even understand the full context. Reading articles like this gives me hope that additional empathy and communication training will occur. But currently the majority of the time when I come to appointments prepared with my own hypotheses or perspectives (as a researcher by training and profession, I can't help it), I am met with irritation and condescension.
Years ago, I had a primary care physician that exemplified the desired behavior. He had a small patient load, spent quality time and listened attentively during appointments, clearly explained diagnoses and options, and actively conferred and collaborated with other specialists. The catch? He did not accept insurance, which is was allowed the small patient load (and which is typical among NYC's best doctors). I was lucky enough at the time that my employer's insurance program accommodated for this, but it did mean he was out of reach for the vast majority of patients.
5
Kudos Dr. Stern. Taking the time to discuss realities with families always pays off. We healthcare providers serve our patients best when we probe, listen and respond. Sometimes the patient is involved, other times various family or advocates contribute to the conversation. Solutions that circle back to the patient are best. Our healthy aging population has brought more of these decisions. Finding proper choices will require reassessment of prior advanced directives, in the context of the current situation. Still the pathway will remain conversation, openness and compassion. Thank you Dr. Stern for showing us the way.
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Thirty years ago, I had been asked to evaluate competence to consent to surgery for an abdominal aortic aneurysm. The patient had moderate arteriosclerotic dementia, he aware of why surgery was recommended, and that he could also die in surgery, he opted for the surgery; and I considered him competent to consent.
I thought that anesthesia and surgery might involve a fall in blood pressure worsen the dementia. However, I had not been asked to evaluate prognosis, and limited my opinion to the question asked.
A few weeks later I saw him restrained in a wheelchair, unable to utter one word, grunting and whining, fighting off spoon feeding; the record described the surgery as successful.
I deeply regretted not having been explicit with my reservation on prognosis.
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@Sagredo
I'm grateful that my mother, when diagnosed with a 10cm aortic aneurysm, was told explicitly what surgery and recovery would involve in, including dialysis and extended hospitalization. She based her final decision on the future, rather than the immediate problem, and went home to her family and friends.
5
Dear Sagredo,
I want to tell you how moved I am by your story. That you have carried this burden for 30 years is testament to the weight of feelings of moral distress that physicians carry and the scarcity of avenues currently available to express them. I appreciate you sharing your story and am very sympathetic to the pain and sense of regret you have related.
With thanks,
Joseph Stern
3
Bravo! What excellent care you provided to this patient and his family.
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Surgeons are hard-wired to cut. Surgeons gonna surge. If your surgeon can pause his/her natural impulse long enough to give you an honest assessment of what is likely to be the life-quality result after the surgery he/she is proposing, then you are a lucky patient.
Both parties have a responsibility. Older patients, like the examples in this story, should have an advance directive that they carry everywhere with them in some form. Their family members should be instructed what it means and what decisions are expected from the designated health care proxy should some health crisis occur.
The doctor's responsibility is to do what this doctor did, except ideally it should have been initiated, if possible, before the first surgery.
Don't think your hospital is going to have your advance directive available if you get taken to the emergency room, even if you have provided it to them to put in their files. You must have it with you, and hopefully your designated health care proxy will be with you also. Good luck.
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@Madeline Conant I've read that people who have "Do Not Resuscitate" tattooed on their chest are still resuscitated because the ER can't know if it's a still-current request. The Advance Directive seems to carry more weight but who can guarantee it would always be in our possession regardless of emergency, illness or accident? SO perhaps a fix would be to upload our advance directive to a public document on our google drive and tattoo the LINK on our chest then this more detailed, personal document would always be "with us". Seems silly but hey it might actually work.
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@Violet
retired AMA attorney F/70
The Medic Alert Foundation has a registry of advance directives (POLST) that costs $15 for two years to enroll. Then wear a bracelet with the contact information and individual document ID . Alerts that EMS and ER professionals routinely look for to caution them about drug allergies. Only takes minutes for your instructions to get to decision makers.
1
When you think to yourself, or even say aloud to another family member, "Gosh, I hope she dies soon" because nothing will get better, and life has become mere existence, then really --.
And yet there we are.
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Quality vs. quantity
2
Dr. Stern's article reinforces the need for a cultural shift in the United States that it is imperative that we accept our mortality. We must weave conversations about end-of-life care choices into our national fabric. We'll be a healthier and more enlightened society if we face up to the fact that life is 100% fatal.
No one is getting out of here alive -- so, let's talk about it!
Go to The Conversation Project or to National Healthcare Decisions Day to help get started.
Your professional medical providers will thank you for it!
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The timing of this article is serendipitous.
In my community, I have been a patient and caregiver advocate for years on the merits of out-patient palliative care and the wisdom of "having the conversation" about end-of-life care choices before a person can no longer communicate their own wishes.
In that role, I've collaborated with ICU nurses, a retired nephrologist, a former home health/hospice nurse. We offer communities throughout our region a presentation titled "The Realities of Advanced Medical Interventions."
Just yesterday, I asked (again) one of the ICU nurses what motivated her to offer her personal time and expertise to present "Realities."
She wrote:
I think for me the big motivator to present Realities was to help deal with the moral distress I witnessed in families and experienced myself in the ICU setting. What was offered to patients by the healthcare community was often not realistic in terms of the patient’s chances for a meaningful survival. Life was prolonged and everyone suffered. No one knew how to just tell people in simple heartfelt words that there was nothing more we could or should do and that comfort and peace should be the goal.
Too often we embarked down the road of “do everything“ knowing people had no clue what that meant and that it likely wasn’t going to mean a return to former health.
I felt by helping educate people in my community I have somehow atoned for my part in what is wrong in our system.
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I can only hope that ,if in my future , my life takes the turn that this patients life took, I will have a physician as thoughtful and caring as Dr. Stern. In the era of 6 minute medicine, he seems to have learned what it means to be a real physician.
I hope he can be a good model for his residents in training.
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Ethical distress is our alert that something we are doing or are about to do isn't really the right thing, even if it is acceptable.
I so wish that the exposure to the thinking of those with expertise in palliative care -- and developing a tolerance for facing harsh realities which attend the end of life - and talking about them with family, was part of the training for Neurosurgeons ( and others, especially in the surgical field). The understanding of a good outcome has to be on the effect on quality of life, not on whetehr the patient can withstand surgery.
My Sig Other's father suffered a stroke after having a pacemaker put in -- which was missed making the damage worse; but when a dedicated and well meaning neurosurgeon told my SO that if it was HIS father he would operate. Operation, successful; remainder of life, a struggle and a burden.
for an uncle who in a second major fall suffered a massive hematoma, in talking to the Drs. involved, one said he thought my uncle could "return to baseline" functioning. I asked him what was that baseline? Turns out it was a meaningless phrase. I described as best i could his deteriorating functioning over the last few months, and compared that to the year before, My belief was that he couldn't get "better." but only survive. Anyway, he went into palliative care; I think that Dr, and the others were relieved, but that they NEVER would have initiated that conversation.
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@cheryl
Never ask a doctor what they’d do if it were their dad, mother, sister...ask what they’d do if it were they themselves.
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We suffered this scenario with my 91-year-old father, including my mother with dementia who did not really understand what was going on. We were forced to make a split second decision whether to operate, thus deprived of a second opinion or the ability to do research and read articles like this one. When I asked about the prospective success of each surgery, the surgeon responded that it was his only chance, not that at his age and the fact that he was on blood thinners his chance was essentially zero. My father had two surgeries, which were expectedly unsuccessful particularly since he intubated at the first one and developed pneumonia (an attending physician told us later, the surgeon never mentioned it), but still we were advised that he have the second one. When the hospital realized that he was going to die, they transferred him in the middle of the night to a nursing home. He died two weeks later. I wish the surgeon had been required to observe him in his last days of pain and anguish and face the family after what he did.
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Suggestion:
Create a program in which physicians can earn CMEs by visiting a NH and spending time just sitting in the hallway. Watch and listen to what goes on (or doesn't happen) to residents who need 24-hour care and cannot be in their homes.
Your actions or inactions may send people to a place/state that no one ever wants to inhabit. You will be able to tell families that cannot accept reality that what lies ahead could be far more painful than contemplating the loss of their loved one. Because you have witnessed it.
I realized that the supervising MD for the facility that cared for my mother in her last months had no idea what happened after he wrote orders. He ran in, wrote orders, and ran out (away). I filled him in. He was shocked, based on the look on his face. And not happy to confront reality himself. That pesky moral integrity thing again....
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...watch out when you get 'that age' for the antipsychotics drugs!!!!
1
As a retired physician myself , i applaud you taking time to ponder on what is ethical as in this case. Sometimes, we have to think hard whether what we ever do is for the good of the patient .
it is not an easy task.
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