This is wise and beautiful. I’m sharing it with family members who have experienced the uncertainty of how much to intervene and, like most of us, probably will experience it again.
Thank you for this thoughtful and helpful piece on a subject that deserves more attention.
“The pain of loss is not lessened by a good death” —I have to disagree on this point based on my personal experience.
My father also smoked for many years & developed bladder cancer as a result. He survived and thrived after treatment for several years. His health started to decline, and then one day he became very ill—it turned out his cancer had reoccurred with significant Mets, and his COPD became symptomatic for the first time in his life, landing him in the hospital. All 6 kids were able to get back home to see him. We, along with my Mom, all had meaningful, lucid moments with him.
His second day in the hospital, my Mom (an RN) and I (Family physician) went up early to try to catch his doctors during their rounds…it turned out we did not need their input, my Mom & I could tell he had started the process of dying…we asked to move him out of the ICU and shift to hospice care. The quieter room was peaceful, and gave us more time & emotional space to prepare. Mercifully, because of his hypercapnia, he was lethargic and not in pain. My brothers smuggled whiskey into his room in a “Snapple Tea”bottle and used the bedside oral sponges to deliver small amounts to him. We all had to stifle laughter and feign ignorance when his nurse came in to do oral care shortly after, and had a quizzical look on her face…we laughed, and cried and hugged and prayed, and supported each other…it was a good death, and my pain from his loss was most certainly lessened by that good death.
My pain was further lessened by a meaningful funeral, at which we were able to hear from many people (some of whom we had never met) from different phases of his life about the ways in which my Dad had positively impacted their lives.
My dad, a 90 yr old retired surgical oncologist, did it right.
Sick and to the ER on a Sunday, worse on Monday so returned to the hospital and was admitted, CT revealed masses in pancreas and liver (almost certainly a pancreatic primary with liver met).
My dad knew the score. Tuesday he told mom “Take me home. I’m going to die on Friday.”
My sisters and i arrived Wednesday morning.
He died that Friday at 6pm on the dot. Had a few sips of warm coffee and fell asleep.
Sorry, posted incomplete. TLDR version: I fear upcoming changes & vigorous hospice enforcement will make the kind of death we all want much harder to achieve! Sorry for 2 part rant...
So what do we do sbout the elephant in the room: hospice & it's requirement that we certify each patient admitted only has 6 months max prognosis? While I recognize CMS will claim it's not strictly enforcable (who gets a crystal ball with board certification?), I will tell you that the current RFK/Oz witch hunts have terrorized every hospice provider to consider discharging any patient passing the dreaded 6 month mark! The irony being that patients who are safe, loved & well cared for often live long past our clinical expectations, which is a blessing to their family & friends. But they're rewarded with abandonment by the skilled multidisciplinary team created to insure the gentle death we all deserve & want.
I recently stopped attending a local hospice team who had cared for my dying patients (including my father, who I saw take his last breath in his home, per his wishes) after over a decade of
Thank you so much for this post! As an MD myself, I have been unable to articulate the horror and sadness that I felt seeing patients suffering for an improbable better prognosis and sliding down to a long and painful death.
Many times, this was the product of their attending physician not being clear enough about their prognosis, or being unable or too sensitive to tell them or their family ( I am a consultant in ID).
I found a phrase for it: the “ miracle “ of modern medicine, which is a cynical way of saying what you so clearly express in your post.
Of course, modern medicine has and is doing many real and true miracles, the dying is something still to be addressed, after all, medicine is evolving still.
I live in Canada, where we offer very sick and hopeless patients the option of dying with medical help, this has improved quality of life and quality of death tremendously in my opinion.
"Because doctors seldom follow their patients into the hospital, patients are rarely attended by a physician they know well."
This phenomenon has developed during my (long) career, and has not received sufficient analysis. Yes, yes, I know all the reasons - but like all obscured phenomena subject to "noticing", once you see it, you can't look away.
The deployment and operation of the modern hospital machinery REQUIRES the absence of the personal physician. Of course, some good things result.
But so do some bad things. This needs much more development in our circles before we are all gone - but let me leave with this: There is now no one except the patient themself, or a family member, to say "enough", or God forbid, the "care manager". Patients used to rely on their own doctors to play a part in that decision - which, not for nothing, was a major reason for the physician's high social status - and now those doctors are gone.
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).
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. ❤️
This is wise and beautiful. I’m sharing it with family members who have experienced the uncertainty of how much to intervene and, like most of us, probably will experience it again.
Thank you for this thoughtful and helpful piece on a subject that deserves more attention.
“The pain of loss is not lessened by a good death” —I have to disagree on this point based on my personal experience.
My father also smoked for many years & developed bladder cancer as a result. He survived and thrived after treatment for several years. His health started to decline, and then one day he became very ill—it turned out his cancer had reoccurred with significant Mets, and his COPD became symptomatic for the first time in his life, landing him in the hospital. All 6 kids were able to get back home to see him. We, along with my Mom, all had meaningful, lucid moments with him.
His second day in the hospital, my Mom (an RN) and I (Family physician) went up early to try to catch his doctors during their rounds…it turned out we did not need their input, my Mom & I could tell he had started the process of dying…we asked to move him out of the ICU and shift to hospice care. The quieter room was peaceful, and gave us more time & emotional space to prepare. Mercifully, because of his hypercapnia, he was lethargic and not in pain. My brothers smuggled whiskey into his room in a “Snapple Tea”bottle and used the bedside oral sponges to deliver small amounts to him. We all had to stifle laughter and feign ignorance when his nurse came in to do oral care shortly after, and had a quizzical look on her face…we laughed, and cried and hugged and prayed, and supported each other…it was a good death, and my pain from his loss was most certainly lessened by that good death.
My pain was further lessened by a meaningful funeral, at which we were able to hear from many people (some of whom we had never met) from different phases of his life about the ways in which my Dad had positively impacted their lives.
Thanks again for your post.
My dad, a 90 yr old retired surgical oncologist, did it right.
Sick and to the ER on a Sunday, worse on Monday so returned to the hospital and was admitted, CT revealed masses in pancreas and liver (almost certainly a pancreatic primary with liver met).
My dad knew the score. Tuesday he told mom “Take me home. I’m going to die on Friday.”
My sisters and i arrived Wednesday morning.
He died that Friday at 6pm on the dot. Had a few sips of warm coffee and fell asleep.
Sorry, posted incomplete. TLDR version: I fear upcoming changes & vigorous hospice enforcement will make the kind of death we all want much harder to achieve! Sorry for 2 part rant...
So what do we do sbout the elephant in the room: hospice & it's requirement that we certify each patient admitted only has 6 months max prognosis? While I recognize CMS will claim it's not strictly enforcable (who gets a crystal ball with board certification?), I will tell you that the current RFK/Oz witch hunts have terrorized every hospice provider to consider discharging any patient passing the dreaded 6 month mark! The irony being that patients who are safe, loved & well cared for often live long past our clinical expectations, which is a blessing to their family & friends. But they're rewarded with abandonment by the skilled multidisciplinary team created to insure the gentle death we all deserve & want.
I recently stopped attending a local hospice team who had cared for my dying patients (including my father, who I saw take his last breath in his home, per his wishes) after over a decade of
Excellent Piece!
Thanks for a remarkable article!
Thank you so much for this post! As an MD myself, I have been unable to articulate the horror and sadness that I felt seeing patients suffering for an improbable better prognosis and sliding down to a long and painful death.
Many times, this was the product of their attending physician not being clear enough about their prognosis, or being unable or too sensitive to tell them or their family ( I am a consultant in ID).
I found a phrase for it: the “ miracle “ of modern medicine, which is a cynical way of saying what you so clearly express in your post.
Of course, modern medicine has and is doing many real and true miracles, the dying is something still to be addressed, after all, medicine is evolving still.
I live in Canada, where we offer very sick and hopeless patients the option of dying with medical help, this has improved quality of life and quality of death tremendously in my opinion.
"Because doctors seldom follow their patients into the hospital, patients are rarely attended by a physician they know well."
This phenomenon has developed during my (long) career, and has not received sufficient analysis. Yes, yes, I know all the reasons - but like all obscured phenomena subject to "noticing", once you see it, you can't look away.
The deployment and operation of the modern hospital machinery REQUIRES the absence of the personal physician. Of course, some good things result.
But so do some bad things. This needs much more development in our circles before we are all gone - but let me leave with this: There is now no one except the patient themself, or a family member, to say "enough", or God forbid, the "care manager". Patients used to rely on their own doctors to play a part in that decision - which, not for nothing, was a major reason for the physician's high social status - and now those doctors are gone.
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).
Well said. Thanks.
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 am so sorry for the situation with your sister in law. Best os luck. Thanks for reading and commenting.
Thank you.