Thank you John for giving voice to the relegation of palliation.
I’ve learned many things over the years (remember being my intern?). And I’ve seen disheartening changes in the language we use.
The truth is that “palliation is the best therapy we can offer” is more true than “I have nothing to offer beyond palliation.” The former encapsulated an assessment that the other things we could do are not things I would recommend we do. We often do have more to offer, but those things will make the situation worse, not better.
When we talk about a dichotomy between “medical treatment” and “palliative care” we do everyone a disservice. We discount the reality of the fund of knowledge, clinical skills and training of palliative care specialists. It is a recognized medical specialty, after all. Palliative care is medical treatment.
And sometimes the best palliative care doesn’t come with a prescription sent to the pharmacy. It comes with being with the patient and their circle of important people (“family” by birth, legally or choice) in their experience of illness.
I firmly believe that at the core our job as physicians is to relieve pain and suffering. That does not mean eliminate; it means simply relieve. Additionally, we need to ask ourselves:Are we prolonging life or are we prolonging death.? Thankfully, the concept of hospice seems to be much more widely accepted now than it was in the past.
My mother, who was resuscitated following anaphylactic shock twice, and a third time from a cardiac arrest (postop open-heart surgery )later stated to me that dying was rather pleasant; resuscitation was very unpleasant and somewhat of a torture. Ultimately, she had no fear of dying when it finally came. It’s sad so many of our patients and ourselves can’t seem to accept the reality that life is only temporary.
What I would like to be told is : “We have no further treatments available for <whatever the disease is>. Your care team’s focus will now pivot to optimizing your quality of life for the time you have left (can you tell I am a software engineer? :) )
Thank you for saying this. I left formal Palliative Care 2 1/2 years ago to work in Primary Care. One of the things that struck me almost immediately is that 75% of what I do all day is STILL palliative care. Sure we cure an infection here and there and for kids we can provide actual preventive care but mostly we are "managing" and not "fixing" and I kind of hate it. I do A LOT of education with my patients when they come in with prediabetes or elevated blood pressure or fatty liver disease. I tell them their house is on fire and unless they change course immediately, they are looking at years of meds and misery. I follow that with the steps to take to avoid it but it amazes me each day how many people choose palliation instead. The ones who take me up on the offer come back 6-12 weeks later amazed that what I said was right and we watch their numbers improve and become "normal". The ones who don't get a pill and when they come back in 3 months they get another pill to help with the side effects of pill #1 (or #2 or 3 or 4...).
I choose actual healthcare and actual prevention.
Here's the kicker: those "palliative care" patients I used to see? I had many of them who changed their habits with some encouragement (even got off some meds) who graduated palliative care! It was remarkable to see those we gave up on thrive.
There is never a point at which we can do NOTHING in my book.
As a PA, I occasionally had extended conversations with cancer patients who wanted to know how long they had to live. The first time I was asked, all I knew to say was, "Well, my crystal ball blew a fuse years ago; I can only tell you two things. First, we'll fully describe what can be done and then be guided by your wisdom about what happens next - you're in charge. Second, no matter what happens, we'll be with you every step of the way."
The approach seemed to be helpful. When that first patient died, his wife stopped by to say, "Come to the family-only reception; you were with us every step of the way."
Our patients come from diverse social, cultural and class backgrounds where the goals of end of life care can vary quite a bit from one patient and family to the next. To this end, I find I individualize my care for each patient. For me, this is an area where the principles of harm reduction apply. While I educate and offer guidance and opinions, I prioritize patient autonomy, practice compassion and most of all, I try to maintain a nonjudgmental approach.
I went to a talk 50 years ago by Dr. Mark Siegler at the U of C. Curing and Caring. Note the conjunction. They're not exclusionary. They're complementary. It was true then. Still just as true today. Too bad more physicians hadn't heard Dr. Siegler..
Yes it has. As a retired nurse my husband’s hospice care was subpar and neglected. He died during a traumatic respiratory event from a pulmonary embolus but that is not on his death certificate. He could have had a less traumatic death experience had the hospice checked his INR’s and kept his warfarin in the narrow range it had been in for years. But the comments “ we don’t usually do INR’s in hospice” was all I heard. So I feel the hospice killed him. I wanted a few more months with him and had his INR been in the correct range that might have happened.
I see two major issues brought up in this (and Adam's) post. First, there are many things in medicine that don't have a "fix" - in both elderly and in younger patients. Musculoskeletal conditions and pain the prime area. I look at these situations as being honest with a patient that there is no magic key or "fix" for their problem, but don't present that as hopeless. What you do is present the list of non-invasive options or "tools" they can use to manage pain and limitations. By keeping the focus on a "fix", we keep patients (especially younger ones) chasing that. This shows up in unnecessary surgeries and in the ongoing proliferation of "regenerative medicine" offering people a wide variety of "fixes" that they'll pay good money for.
Dealing with the extreme elderly (> 85 year olds) is an entirely different proposition and more what you both illustrate or focus on. This is where an experienced internist/primary care physician should take the lead. Making it clear that there is very little we can DO to you that will improve your situation or help you live longer and, instead, do our best to help them stay in their own good balance of daily routine. Watch with them for early signs that things are getting "out of balance" and gently help them return to stable baseline.
I would question (and regularly do with my patients!) why a 90 year old still sees a cardiologist yearly. Why? But many patients in their late 80s and beyond are still told to "see me in a year!" (again, why?) From a primary care perspective, we should empower them to use the tools that do make sense - you might call that "palliative" care, but I'd say it is appropriate care for the situation. Focusing on daily quality of life and independence is both a science and an art. But it takes an experienced clinician who sees the bigger picture and each patient's unique situation. It also takes more than a 15 minute appointment once or twice a year.
Bless you both, Adam and John. These are some of the most important issues humans face in healthcare - on both sides of the stethoscope. Thank you for dignifying the discussion with your sincere concerns.
I turned 76 this year and discovered that I have bronchiectasis - a chronic condition that has weakened me a lot. Last year I was still an active martial artist and hiker. This year I am off the aikido mat for good, walking half the distances I used to, somewhat prone to irritation and self pity, and needing many more naps. I'm more aware than ever that the end of my life is coming, though of course not because of this new condition. Still, I often think about how dying will be, how it was for my patients, family, and friends, and how I will manage my last years. I want to be actively involved in any medical decisions, and I want my health care providers to know how I would prefer my dying to go. No one has asked me, so I did bring it up with my NP, and he was very open to discussing what I will and won't allow - no intubation, no feeding tubes, no dialysis, no CPR, no testing that we already know I won't act on. If I'm actively dying I want to be allowed to die. Please don't stand in the way of that, but please be with me and offer me pain control, anxiety control, and possibly compassionate presence.
So I think the single most effective thing health care providers can do about this is to ask people early on what is most important in their lives, and how they want to be treated if they have a life threatening condition. The discussion should be open and honest. If the patient doesn't want to discuss these things directly there are ways to find some of it out. What brings you the most peace and happiness now? How safe and secure do you feel in your home? Do you have friends or family you can count on if the going gets rough? What are your concerns about aging? As well as non medical questions about music, sports, family, memories. It takes time though, which is a precious commodity. But it allows the focus of hope to shift from hope for a cure to hope for real care during the natural dying process.
There was a time in this nation, heck, the world, where people just died. We did not have so many “advances” in medicine to keep people alive. So many last hurrahs that often either bleed them or the state for those “precious few” days/weeks/months.
I watched my mother die. Six years earlier she had spiral fractured her tibia 🦴 just walking in her house (likely Fosomax related). She got pins and a plate. Then she got the idea she deserved a knee replacement a year because Medicare would pay for it and her cartilage was gone. She had minor dementia at that time. ~87 yrs old. Knee replaced, and she never walked again.
By 92 when she finally passed, she had no clue who I was. Just someone who visited her. She believed she was a young girl going to school. She had to be in “happy meds” so she wouldn’t swing at the staff due to sundowners. And of her own money we burned through about $500,000. When she died she had a few thousand left.
The last few days she died (in a group home) her systems were shutting down. It was near Christmas and the palliative care nurse that arrived looked shell-shocked. I gave her a hug and she started crying. I told her to give my mother enough pain killers to end her. Her end came a few days later, confused and in plenty of pain the whole time despite the drugs. Given the opportunity legally, I would have killed her. I’ve put down dogs that have gone more peacefully.
There are times to say no. There should be a cost benefit analysis of all this end of life care. I have a friend who’s a cardiologist. He’d tell me stories of the grandparent willing to go, but the children or grandchildren would be pushing to save them. So they’d get some expensive procedure, and still be gone 6-12 months later. This happens because often WE as people don’t value our relationships until someone is almost gone, and then we want to selfishly keep them around.
I made a deal with myself after watching my mother’s final roughly 8 years. I’m not going out like that. When I can’t wipe my own azz, or I believe I am slipping mentally, I’m taking myself out of the game. Permanently. If I have my choice it will come with some excitement ala “Thelma & Louise” exit. If not it’ll be alone out in the desert. No last hurrahs. No burning up what I saved to buy a few decrepit more years.
My kids know all this. Told them for years. It won’t be a surprise to them. My friends know the same.
No one gets out alive. Better to say… “I did it my way”. (Sorry Frank)
As a medical oncologist for the past 44 years, I slowly began to change my approach to the situations you describe. When we began to approach these end of life choices, my patients and I would discuss options in terms of a shifting of our focus-from cure, to chances of prolonging quality and/ or quantity of life, and ultimately primarily to quality of life. These discussions require some honest and balanced presentations, and I found I have to resist the temptation to present things from MY point of view and what I would do if I were in their place. I hope and pray I have gotten better at it. As Hippocrates said,”Life is short-the art is long…”
True story: 80 something year old pt in very poor health (CHF, diabetes, etc) admitted with pancreatic cancer. Instead of sending this man home to die in peace and enjoy his family. The surgeon suggested a Whipple. I stood there there and heard the entire conversation, "we can get that cancer out of there." Never once did the surgeon acknowledge that the man was dying anyway and the surgery would not only not prolong the man's life but make his last days even more painful. The family, of course thinks they have a cure. Man spent the following 4 months alternating between our floor and the ICU with retention sutures, packing of the wound, in dwelling catheter, etc. Finally sent the man home on hospice, so he could sit in his garden like he wanted to, and he died 2 months later.
As an oncology infusion nurse, this is the saddest and most frustrating part of my job. Watching patients suffer and being bankrupted by "hope" when there is none to be had and providers can't bear to be honest with them. It breaks my heart, for me and for them. Knowing that there is a kinder, gentler way for their suffering to end and it is not being offered or is not being accepted by the pt.
As a long time, medical subspecialist and now medical observer, this is superb. While medicine confronts guidelines and best practices, the questions are not can we but should we. Training programs that teach the guidelines often fail to teach the art of how to confront advise the probable against the possible.
Thank you John for giving voice to the relegation of palliation.
I’ve learned many things over the years (remember being my intern?). And I’ve seen disheartening changes in the language we use.
The truth is that “palliation is the best therapy we can offer” is more true than “I have nothing to offer beyond palliation.” The former encapsulated an assessment that the other things we could do are not things I would recommend we do. We often do have more to offer, but those things will make the situation worse, not better.
When we talk about a dichotomy between “medical treatment” and “palliative care” we do everyone a disservice. We discount the reality of the fund of knowledge, clinical skills and training of palliative care specialists. It is a recognized medical specialty, after all. Palliative care is medical treatment.
And sometimes the best palliative care doesn’t come with a prescription sent to the pharmacy. It comes with being with the patient and their circle of important people (“family” by birth, legally or choice) in their experience of illness.
I firmly believe that at the core our job as physicians is to relieve pain and suffering. That does not mean eliminate; it means simply relieve. Additionally, we need to ask ourselves:Are we prolonging life or are we prolonging death.? Thankfully, the concept of hospice seems to be much more widely accepted now than it was in the past.
My mother, who was resuscitated following anaphylactic shock twice, and a third time from a cardiac arrest (postop open-heart surgery )later stated to me that dying was rather pleasant; resuscitation was very unpleasant and somewhat of a torture. Ultimately, she had no fear of dying when it finally came. It’s sad so many of our patients and ourselves can’t seem to accept the reality that life is only temporary.
What I would like to be told is : “We have no further treatments available for <whatever the disease is>. Your care team’s focus will now pivot to optimizing your quality of life for the time you have left (can you tell I am a software engineer? :) )
Thank you for saying this. I left formal Palliative Care 2 1/2 years ago to work in Primary Care. One of the things that struck me almost immediately is that 75% of what I do all day is STILL palliative care. Sure we cure an infection here and there and for kids we can provide actual preventive care but mostly we are "managing" and not "fixing" and I kind of hate it. I do A LOT of education with my patients when they come in with prediabetes or elevated blood pressure or fatty liver disease. I tell them their house is on fire and unless they change course immediately, they are looking at years of meds and misery. I follow that with the steps to take to avoid it but it amazes me each day how many people choose palliation instead. The ones who take me up on the offer come back 6-12 weeks later amazed that what I said was right and we watch their numbers improve and become "normal". The ones who don't get a pill and when they come back in 3 months they get another pill to help with the side effects of pill #1 (or #2 or 3 or 4...).
I choose actual healthcare and actual prevention.
Here's the kicker: those "palliative care" patients I used to see? I had many of them who changed their habits with some encouragement (even got off some meds) who graduated palliative care! It was remarkable to see those we gave up on thrive.
There is never a point at which we can do NOTHING in my book.
As a PA, I occasionally had extended conversations with cancer patients who wanted to know how long they had to live. The first time I was asked, all I knew to say was, "Well, my crystal ball blew a fuse years ago; I can only tell you two things. First, we'll fully describe what can be done and then be guided by your wisdom about what happens next - you're in charge. Second, no matter what happens, we'll be with you every step of the way."
The approach seemed to be helpful. When that first patient died, his wife stopped by to say, "Come to the family-only reception; you were with us every step of the way."
Our patients come from diverse social, cultural and class backgrounds where the goals of end of life care can vary quite a bit from one patient and family to the next. To this end, I find I individualize my care for each patient. For me, this is an area where the principles of harm reduction apply. While I educate and offer guidance and opinions, I prioritize patient autonomy, practice compassion and most of all, I try to maintain a nonjudgmental approach.
You should write a book!!
I went to a talk 50 years ago by Dr. Mark Siegler at the U of C. Curing and Caring. Note the conjunction. They're not exclusionary. They're complementary. It was true then. Still just as true today. Too bad more physicians hadn't heard Dr. Siegler..
Sadly the word caring is heard less and less in today’s healthcare systems.
Doing has replaced caring. And it's made end-of-life care a worse experience for many.
Yes it has. As a retired nurse my husband’s hospice care was subpar and neglected. He died during a traumatic respiratory event from a pulmonary embolus but that is not on his death certificate. He could have had a less traumatic death experience had the hospice checked his INR’s and kept his warfarin in the narrow range it had been in for years. But the comments “ we don’t usually do INR’s in hospice” was all I heard. So I feel the hospice killed him. I wanted a few more months with him and had his INR been in the correct range that might have happened.
I see two major issues brought up in this (and Adam's) post. First, there are many things in medicine that don't have a "fix" - in both elderly and in younger patients. Musculoskeletal conditions and pain the prime area. I look at these situations as being honest with a patient that there is no magic key or "fix" for their problem, but don't present that as hopeless. What you do is present the list of non-invasive options or "tools" they can use to manage pain and limitations. By keeping the focus on a "fix", we keep patients (especially younger ones) chasing that. This shows up in unnecessary surgeries and in the ongoing proliferation of "regenerative medicine" offering people a wide variety of "fixes" that they'll pay good money for.
Dealing with the extreme elderly (> 85 year olds) is an entirely different proposition and more what you both illustrate or focus on. This is where an experienced internist/primary care physician should take the lead. Making it clear that there is very little we can DO to you that will improve your situation or help you live longer and, instead, do our best to help them stay in their own good balance of daily routine. Watch with them for early signs that things are getting "out of balance" and gently help them return to stable baseline.
I would question (and regularly do with my patients!) why a 90 year old still sees a cardiologist yearly. Why? But many patients in their late 80s and beyond are still told to "see me in a year!" (again, why?) From a primary care perspective, we should empower them to use the tools that do make sense - you might call that "palliative" care, but I'd say it is appropriate care for the situation. Focusing on daily quality of life and independence is both a science and an art. But it takes an experienced clinician who sees the bigger picture and each patient's unique situation. It also takes more than a 15 minute appointment once or twice a year.
Oh, goodness. What I could tell you about treatment ending and palliative care not stepping up to the plate, but lingering on the steps…
Bless you both, Adam and John. These are some of the most important issues humans face in healthcare - on both sides of the stethoscope. Thank you for dignifying the discussion with your sincere concerns.
I turned 76 this year and discovered that I have bronchiectasis - a chronic condition that has weakened me a lot. Last year I was still an active martial artist and hiker. This year I am off the aikido mat for good, walking half the distances I used to, somewhat prone to irritation and self pity, and needing many more naps. I'm more aware than ever that the end of my life is coming, though of course not because of this new condition. Still, I often think about how dying will be, how it was for my patients, family, and friends, and how I will manage my last years. I want to be actively involved in any medical decisions, and I want my health care providers to know how I would prefer my dying to go. No one has asked me, so I did bring it up with my NP, and he was very open to discussing what I will and won't allow - no intubation, no feeding tubes, no dialysis, no CPR, no testing that we already know I won't act on. If I'm actively dying I want to be allowed to die. Please don't stand in the way of that, but please be with me and offer me pain control, anxiety control, and possibly compassionate presence.
So I think the single most effective thing health care providers can do about this is to ask people early on what is most important in their lives, and how they want to be treated if they have a life threatening condition. The discussion should be open and honest. If the patient doesn't want to discuss these things directly there are ways to find some of it out. What brings you the most peace and happiness now? How safe and secure do you feel in your home? Do you have friends or family you can count on if the going gets rough? What are your concerns about aging? As well as non medical questions about music, sports, family, memories. It takes time though, which is a precious commodity. But it allows the focus of hope to shift from hope for a cure to hope for real care during the natural dying process.
There was a time in this nation, heck, the world, where people just died. We did not have so many “advances” in medicine to keep people alive. So many last hurrahs that often either bleed them or the state for those “precious few” days/weeks/months.
I watched my mother die. Six years earlier she had spiral fractured her tibia 🦴 just walking in her house (likely Fosomax related). She got pins and a plate. Then she got the idea she deserved a knee replacement a year because Medicare would pay for it and her cartilage was gone. She had minor dementia at that time. ~87 yrs old. Knee replaced, and she never walked again.
By 92 when she finally passed, she had no clue who I was. Just someone who visited her. She believed she was a young girl going to school. She had to be in “happy meds” so she wouldn’t swing at the staff due to sundowners. And of her own money we burned through about $500,000. When she died she had a few thousand left.
The last few days she died (in a group home) her systems were shutting down. It was near Christmas and the palliative care nurse that arrived looked shell-shocked. I gave her a hug and she started crying. I told her to give my mother enough pain killers to end her. Her end came a few days later, confused and in plenty of pain the whole time despite the drugs. Given the opportunity legally, I would have killed her. I’ve put down dogs that have gone more peacefully.
There are times to say no. There should be a cost benefit analysis of all this end of life care. I have a friend who’s a cardiologist. He’d tell me stories of the grandparent willing to go, but the children or grandchildren would be pushing to save them. So they’d get some expensive procedure, and still be gone 6-12 months later. This happens because often WE as people don’t value our relationships until someone is almost gone, and then we want to selfishly keep them around.
I made a deal with myself after watching my mother’s final roughly 8 years. I’m not going out like that. When I can’t wipe my own azz, or I believe I am slipping mentally, I’m taking myself out of the game. Permanently. If I have my choice it will come with some excitement ala “Thelma & Louise” exit. If not it’ll be alone out in the desert. No last hurrahs. No burning up what I saved to buy a few decrepit more years.
My kids know all this. Told them for years. It won’t be a surprise to them. My friends know the same.
No one gets out alive. Better to say… “I did it my way”. (Sorry Frank)
Dignity should be the first priority… when the end is nearing. None of us get out of here alive.
As a medical oncologist for the past 44 years, I slowly began to change my approach to the situations you describe. When we began to approach these end of life choices, my patients and I would discuss options in terms of a shifting of our focus-from cure, to chances of prolonging quality and/ or quantity of life, and ultimately primarily to quality of life. These discussions require some honest and balanced presentations, and I found I have to resist the temptation to present things from MY point of view and what I would do if I were in their place. I hope and pray I have gotten better at it. As Hippocrates said,”Life is short-the art is long…”
True story: 80 something year old pt in very poor health (CHF, diabetes, etc) admitted with pancreatic cancer. Instead of sending this man home to die in peace and enjoy his family. The surgeon suggested a Whipple. I stood there there and heard the entire conversation, "we can get that cancer out of there." Never once did the surgeon acknowledge that the man was dying anyway and the surgery would not only not prolong the man's life but make his last days even more painful. The family, of course thinks they have a cure. Man spent the following 4 months alternating between our floor and the ICU with retention sutures, packing of the wound, in dwelling catheter, etc. Finally sent the man home on hospice, so he could sit in his garden like he wanted to, and he died 2 months later.
This story is like hundreds of others. Many physicians do not see the big picture or just want more income from another surgery on the schedule.
As an oncology infusion nurse, this is the saddest and most frustrating part of my job. Watching patients suffer and being bankrupted by "hope" when there is none to be had and providers can't bear to be honest with them. It breaks my heart, for me and for them. Knowing that there is a kinder, gentler way for their suffering to end and it is not being offered or is not being accepted by the pt.
As a long time, medical subspecialist and now medical observer, this is superb. While medicine confronts guidelines and best practices, the questions are not can we but should we. Training programs that teach the guidelines often fail to teach the art of how to confront advise the probable against the possible.