I am so afraid of being caught in the medical machine that I may hasten my own death a little by avoiding it. I’d rather that. How I wish there was some kind of database on different diseases, difficulty of treatment, efficacy of treatment etc, so a patient could have a chance to think as clearly as a doctor in different situations. At a healthy (one small bout of breast cancer) 67, I’d hope for 10-15 more years spent with family and work and in nature. I don’t really trust my doctor to help me achieve this, so I keep myself nourished and exercised and avoid him. No doubt there’s a better way…..wish I knew it.
A really good piece about dying well. You're right, we did have some similarities in what each of us wrote.
My father died during the pandemic, though not of CoVid itself. I understand how it feels to deal with the way things went for so many people. While my father and I had our issues, it's still sad to think that I couldn't be there for him while he died. It's one of the reasons I wrote the piece that I did.
Thanks for your sensitive and intimate story. As a family doc who accompanied many patients to meet the angels, orchestrating a good death surrounded by family was among the most gratifying accomplishments in my medical career. When you say we should "start with the obvious, acknowledging that death is inevitable and that there are outcomes worse than death,"one of the first steps is to change the doctor centered discussion and orders from "Do not resuscitate" (DNR) to the patient centered "Allow a natural Death" (AND).
Nov 12, 2022·edited Nov 12, 2022Liked by Adam Cifu, MD
Thank you for this. My sister in law is going g through a very rapid onset of ALS at 51. Not sure if she will survive a year after diagnosis. The beauty of her situation is the family and friends that have created her life and ultimately death team. We will need to make a lot of decisions, but I hope we can stay focused on her quality of life. There will be many emotions pulling us in different directions than we are committed to now, but she and all of us are committed to her quality of life for her and her family. The beauty in her community, which is basically a reflection of what she has given, is the best of what we humans can do. A good death is a true blessing. A good death isn't medically perfect it is focused on what our community can provide eachother in our connection and service to one another. ❤️
I hate to be a modest downer. But this is a superb piece and the lack of copy editing (as with virtually everything Vinay touches) deprecates its value and the ability to send it around. Can't you guys afford a copy editor? As a long-time editor, I would be happy to copy-edit your stuff (offered to Vinay over a year ago). Please -- you deserve better. Good copy matters.
Speaking as one resuscitated after acute cardiogenic shock, Doctor, I find your commentary poignant and compelling.
We can't really understand death without experiencing it. The process of dying can be rather unpleasant, but death itself is not to be feared.
I've had a year to reflect and consider how my next personal experience of death may not be so quick. If it is not as sudden as the first one, a calm, quiet and painless descent into that long goodnight is an outcome most fervently to be desired.
It seems to me that the most significant confounding factor is fear.
Self-knowledge and compassion seem likely to be two of the most useful palliatives for the fear that promotes and needlessly prolongs pain and misery.
I am the one that relatives seeking respect for their DNR end-of-life decisions, have entrusted with their powers of attorney. If it becomes necessary for me to enforce their wishes, I am now confident that sadness over doing my duty will not be compounded by fear of what awaits them.
Perhaps others who deal with end-of-life care suboptimally, might benefit from looking within themselves and reflecting on how much more difficult their task becomes because of their own unexamined fear.
It seems to me that a certain amount of fear is necessary to counter apathy or arrogance; blithe dismissal of life's value isn't a compassionate response to immanent death. I suppose it is, as so often the case, a mater of balance. There must be some middle path between prolongation to the point of virtual torture, and the widening gyre of inclusion criteria for physician-assisted death.
Thank you for today's essay. I hope that you explore the matter further and share the result of that exploration with the rest of us.
Timely read! Thank you for posting. Too little acknowledgement of death as an outcome, too late along the way of treatment has been my experience. Having enough time to adjust (or not, out of choice) and prepare seems to go a long way in heading for a good death (which may not look the same to all of us). The point is to thoughtfully start the conversation. Thank you again for sharing!
When my father got to the stage where dialysis no longer worked, the doctor told me that there was nothing more to do. When I asked if she had told my father I was amazed to see a look of panic on her face and to hear her say "Oh no, surely he doesn't want to know - I can't tell him".
So I had to tell my father that he probably had a week at most because his kidneys were failing. My brother had to bully the hospital to get him out so he could die at home. The private end of life nurse we had to find turned out not to know how to lay out a dead person and the carers in his assisted living home wouldn't come in the room once he was dead. 6 years later I still run through in my head what we could have done better.
Great article. Non healthcare worker here. I would recommended families have end of life convos regularly, long before illnesses arrive. Take the morose stigma out of it. Dying is part of living.
I took care of my 88 yo dad in his final months/years. We kept it light and used humor. I would regularly ask if he wanted to continue treatments (multiple issues). I made it clear it was up to him and any answer was fine and supported. He kept at it for a while & then slowly declined treatments as he felt the value of the treatments were declining relative to quality of life.
His last week of life landed him in the hospital. It was important to have an advocate (me or sib) with him at all times. Day 1 he expressed to be DNR. I think I had to bring it up to the ER doc as he did not ask I don’t think, & frankly my dad didn’t seem on deaths door then so I don’t fault the doc for not inquiring. But, having cared for my dad for so long I knew that he could decline quickly and be unable to speak for himself. So I brought up the DNR convo with the ER doctor, after the doc said he needed a blood transfusion. (That was a no for us. But not for religious reasons.) The doctor was clear in speaking directly to my father. Things like “do you want me to do chest compressions if needed?” Etc
After being admitted to the hospital, I found that with every dr shift change (2-3 per day?) and every nurse/tech change, I had to verbally highlight “he’s DNR” as the docs/staff were quick to call for tests and treatments such as dialysis, blood transfusion, and tons of testing. I nixed all of those & said palliative care only. All of the doctors were absolutely respectful and OK with our wishes. In fact, the cardiologist pulled me aside and offered reassurance that we were doing the right thing. She knew many patients continue down a final path of care that isn’t productive.
Anyways, I’ve said a lot but mostly just want to share that patients/advocates should repeat themselves frequently with DNR wishes. Do not assume anything. Communicate frequently, ask questions and get clarity. I am guessing it takes a while for the electronic records to be populated, and I know the staff was having to get witnesses etc. so guessing it can take a couple of days to get the paperwork in order. He was moved to hospice after a week and died 24 hours later. He closed out his final chapter on his terms. The doctors and staff were great.
First, this Sensible Medicine project is cool water to weary medical practitioners. Thank you. I am not aware of another venue fostering this kind of critical thought by and among clinicians, and you and Vinay being at the helm makes me proud of my U Chicago heritage and of being your student.
More to the present point, it seems to me that in your excellent post, one idea works against and even contradicts what I take to be a (at least implicit) premise of Sensible Medicine: namely, that medical practitioners ought to act according to their (well-informed) best judgment, not merely do what others tell them to do.
It has become something of an axiom that, as you put it, “only a patient and his or her family knows what is right for them.” With respect to caring for those at the end of life, it has become likewise commonplace to say, as you put it, that, “A ‘good death,’ however defined by family and patient, is worth working for.” Everyone, it seems, wants end of life care to be “goal-concordant.”
There is something right about that. The fundamental doctrine of informed consent makes clear that we cannot reasonable act on a patient against his or her explicit goals. And surely, all else being equal, concordance between what the patient wants and what we do is desirable.
Often, however, not all else is equal. Sometimes patients’ goals are unreasonable. Moreover, the very idea of of a rational profession, like medicine, presumes that there are things we can know about patient’s good that are true whether or not the patient recognizes them (e.g., that their existence is good, that their health is good). The upshot is that sometimes the patient’s (or family’s) idea of ‘a good death’ is NOT worth working for because the idea is mistaken, sometimes seriously so.
I appreciate the thrust of your post, but encourage clinicians to recognize that patients generally know what is best for them, not always, and when patients ideas about ‘a good death’ are not consistent with what is best for them, clinicians may have a reason to challenge the patient and to negotiate some kind of accommodation so that the clinician is acting both with the patient’s informed consent and also in accordance with the physician’s best judgment regarding what sensible medicine requires.
Thank you in 1984 my mother’s oncologist allowed our decision to give him permission to overdose on morphine to end her life because cost of Medicare bills in hospital that is a waste that would not extend her life therefore when the oncologist stated she had six months to death in April 1984 my college allowed me to suspend my classes to care for her . Her early death at 66 from lung liver cancer from cigarettes was a huge trauma to losing my best friend my rock. We joked as I asked her to pass on a Friday so I would have the weekend to morn then attend classes on Monday. That didn’t work out because the emotional pain was just too much because my older only bipolar bother started to abuse me because our mother was no longer alive and he stole my inheritance that was left to me by my late father’s insurance as he died at 59 in 1976. Social Security didn’t have to pay out for my dad or my late brother which is why the pharmaceutical companies & governments for the oligarchy decided to develop a virus that would allow a new pharmaceutical into peoples arms that really had no testing data that was a total failure before 2020. The truth eventually is revealed and the medical professionals who told their patients the mRNA vaccine was safe and effective was The Big Lie and my father was a pharmacist and had been V P of Sales Training for Eli Lilly in Indianapolis 1953-59. He always taught me to read the research papers then get the data making my own medical decisions that hopefully can find a physician that Do No Harm!
2000 years ago, Seneca wrote of the need to determine whether treatment is extending a person’s life, or extending their death.
The Stoics still have lessons for us…
I am so afraid of being caught in the medical machine that I may hasten my own death a little by avoiding it. I’d rather that. How I wish there was some kind of database on different diseases, difficulty of treatment, efficacy of treatment etc, so a patient could have a chance to think as clearly as a doctor in different situations. At a healthy (one small bout of breast cancer) 67, I’d hope for 10-15 more years spent with family and work and in nature. I don’t really trust my doctor to help me achieve this, so I keep myself nourished and exercised and avoid him. No doubt there’s a better way…..wish I knew it.
I agee totali with your opinion,for my side I would appreciate doctors to help me die immediately ,when cure is not worthly rosella
A really good piece about dying well. You're right, we did have some similarities in what each of us wrote.
My father died during the pandemic, though not of CoVid itself. I understand how it feels to deal with the way things went for so many people. While my father and I had our issues, it's still sad to think that I couldn't be there for him while he died. It's one of the reasons I wrote the piece that I did.
Again, great piece.
https://www.quora.com/As-a-doctor-have-you-ever-cried-in-front-of-a-patient/answer/John-Weeks-30
‘The most significant compounding factor is fear”—perfect. Thank you.
Thanks for your sensitive and intimate story. As a family doc who accompanied many patients to meet the angels, orchestrating a good death surrounded by family was among the most gratifying accomplishments in my medical career. When you say we should "start with the obvious, acknowledging that death is inevitable and that there are outcomes worse than death,"one of the first steps is to change the doctor centered discussion and orders from "Do not resuscitate" (DNR) to the patient centered "Allow a natural Death" (AND).
Thank you for this. My sister in law is going g through a very rapid onset of ALS at 51. Not sure if she will survive a year after diagnosis. The beauty of her situation is the family and friends that have created her life and ultimately death team. We will need to make a lot of decisions, but I hope we can stay focused on her quality of life. There will be many emotions pulling us in different directions than we are committed to now, but she and all of us are committed to her quality of life for her and her family. The beauty in her community, which is basically a reflection of what she has given, is the best of what we humans can do. A good death is a true blessing. A good death isn't medically perfect it is focused on what our community can provide eachother in our connection and service to one another. ❤️
I hate to be a modest downer. But this is a superb piece and the lack of copy editing (as with virtually everything Vinay touches) deprecates its value and the ability to send it around. Can't you guys afford a copy editor? As a long-time editor, I would be happy to copy-edit your stuff (offered to Vinay over a year ago). Please -- you deserve better. Good copy matters.
Another great post by you. As someone hoping to start medical school soon, I always learn a lot from your experiences.
Speaking as one resuscitated after acute cardiogenic shock, Doctor, I find your commentary poignant and compelling.
We can't really understand death without experiencing it. The process of dying can be rather unpleasant, but death itself is not to be feared.
I've had a year to reflect and consider how my next personal experience of death may not be so quick. If it is not as sudden as the first one, a calm, quiet and painless descent into that long goodnight is an outcome most fervently to be desired.
It seems to me that the most significant confounding factor is fear.
Self-knowledge and compassion seem likely to be two of the most useful palliatives for the fear that promotes and needlessly prolongs pain and misery.
I am the one that relatives seeking respect for their DNR end-of-life decisions, have entrusted with their powers of attorney. If it becomes necessary for me to enforce their wishes, I am now confident that sadness over doing my duty will not be compounded by fear of what awaits them.
Perhaps others who deal with end-of-life care suboptimally, might benefit from looking within themselves and reflecting on how much more difficult their task becomes because of their own unexamined fear.
It seems to me that a certain amount of fear is necessary to counter apathy or arrogance; blithe dismissal of life's value isn't a compassionate response to immanent death. I suppose it is, as so often the case, a mater of balance. There must be some middle path between prolongation to the point of virtual torture, and the widening gyre of inclusion criteria for physician-assisted death.
Thank you for today's essay. I hope that you explore the matter further and share the result of that exploration with the rest of us.
Timely read! Thank you for posting. Too little acknowledgement of death as an outcome, too late along the way of treatment has been my experience. Having enough time to adjust (or not, out of choice) and prepare seems to go a long way in heading for a good death (which may not look the same to all of us). The point is to thoughtfully start the conversation. Thank you again for sharing!
When my father got to the stage where dialysis no longer worked, the doctor told me that there was nothing more to do. When I asked if she had told my father I was amazed to see a look of panic on her face and to hear her say "Oh no, surely he doesn't want to know - I can't tell him".
So I had to tell my father that he probably had a week at most because his kidneys were failing. My brother had to bully the hospital to get him out so he could die at home. The private end of life nurse we had to find turned out not to know how to lay out a dead person and the carers in his assisted living home wouldn't come in the room once he was dead. 6 years later I still run through in my head what we could have done better.
I'm in the UK - home of the sainted NHS.
Great article. Non healthcare worker here. I would recommended families have end of life convos regularly, long before illnesses arrive. Take the morose stigma out of it. Dying is part of living.
I took care of my 88 yo dad in his final months/years. We kept it light and used humor. I would regularly ask if he wanted to continue treatments (multiple issues). I made it clear it was up to him and any answer was fine and supported. He kept at it for a while & then slowly declined treatments as he felt the value of the treatments were declining relative to quality of life.
His last week of life landed him in the hospital. It was important to have an advocate (me or sib) with him at all times. Day 1 he expressed to be DNR. I think I had to bring it up to the ER doc as he did not ask I don’t think, & frankly my dad didn’t seem on deaths door then so I don’t fault the doc for not inquiring. But, having cared for my dad for so long I knew that he could decline quickly and be unable to speak for himself. So I brought up the DNR convo with the ER doctor, after the doc said he needed a blood transfusion. (That was a no for us. But not for religious reasons.) The doctor was clear in speaking directly to my father. Things like “do you want me to do chest compressions if needed?” Etc
After being admitted to the hospital, I found that with every dr shift change (2-3 per day?) and every nurse/tech change, I had to verbally highlight “he’s DNR” as the docs/staff were quick to call for tests and treatments such as dialysis, blood transfusion, and tons of testing. I nixed all of those & said palliative care only. All of the doctors were absolutely respectful and OK with our wishes. In fact, the cardiologist pulled me aside and offered reassurance that we were doing the right thing. She knew many patients continue down a final path of care that isn’t productive.
Anyways, I’ve said a lot but mostly just want to share that patients/advocates should repeat themselves frequently with DNR wishes. Do not assume anything. Communicate frequently, ask questions and get clarity. I am guessing it takes a while for the electronic records to be populated, and I know the staff was having to get witnesses etc. so guessing it can take a couple of days to get the paperwork in order. He was moved to hospice after a week and died 24 hours later. He closed out his final chapter on his terms. The doctors and staff were great.
Sorry for the rambling comment. 🤷🏻♀️
Dear Adam,
First, this Sensible Medicine project is cool water to weary medical practitioners. Thank you. I am not aware of another venue fostering this kind of critical thought by and among clinicians, and you and Vinay being at the helm makes me proud of my U Chicago heritage and of being your student.
More to the present point, it seems to me that in your excellent post, one idea works against and even contradicts what I take to be a (at least implicit) premise of Sensible Medicine: namely, that medical practitioners ought to act according to their (well-informed) best judgment, not merely do what others tell them to do.
It has become something of an axiom that, as you put it, “only a patient and his or her family knows what is right for them.” With respect to caring for those at the end of life, it has become likewise commonplace to say, as you put it, that, “A ‘good death,’ however defined by family and patient, is worth working for.” Everyone, it seems, wants end of life care to be “goal-concordant.”
There is something right about that. The fundamental doctrine of informed consent makes clear that we cannot reasonable act on a patient against his or her explicit goals. And surely, all else being equal, concordance between what the patient wants and what we do is desirable.
Often, however, not all else is equal. Sometimes patients’ goals are unreasonable. Moreover, the very idea of of a rational profession, like medicine, presumes that there are things we can know about patient’s good that are true whether or not the patient recognizes them (e.g., that their existence is good, that their health is good). The upshot is that sometimes the patient’s (or family’s) idea of ‘a good death’ is NOT worth working for because the idea is mistaken, sometimes seriously so.
I appreciate the thrust of your post, but encourage clinicians to recognize that patients generally know what is best for them, not always, and when patients ideas about ‘a good death’ are not consistent with what is best for them, clinicians may have a reason to challenge the patient and to negotiate some kind of accommodation so that the clinician is acting both with the patient’s informed consent and also in accordance with the physician’s best judgment regarding what sensible medicine requires.
All best to you, and keep up the good work.
Thank you in 1984 my mother’s oncologist allowed our decision to give him permission to overdose on morphine to end her life because cost of Medicare bills in hospital that is a waste that would not extend her life therefore when the oncologist stated she had six months to death in April 1984 my college allowed me to suspend my classes to care for her . Her early death at 66 from lung liver cancer from cigarettes was a huge trauma to losing my best friend my rock. We joked as I asked her to pass on a Friday so I would have the weekend to morn then attend classes on Monday. That didn’t work out because the emotional pain was just too much because my older only bipolar bother started to abuse me because our mother was no longer alive and he stole my inheritance that was left to me by my late father’s insurance as he died at 59 in 1976. Social Security didn’t have to pay out for my dad or my late brother which is why the pharmaceutical companies & governments for the oligarchy decided to develop a virus that would allow a new pharmaceutical into peoples arms that really had no testing data that was a total failure before 2020. The truth eventually is revealed and the medical professionals who told their patients the mRNA vaccine was safe and effective was The Big Lie and my father was a pharmacist and had been V P of Sales Training for Eli Lilly in Indianapolis 1953-59. He always taught me to read the research papers then get the data making my own medical decisions that hopefully can find a physician that Do No Harm!