This ongoing conversation between you and Adam is really fascinating. I find myself a little bit in both camps. Just last week I had a patient and his family in the ED where I used a sort of in-between language and spoke about transitioning the focus of our care from saving life no matter what to a focus on making the life that you have left comfortable. I think the context of using the words we have nothing left to offer is very important, as is contextualizing what you mean by that for your patient. It may really not be a good idea to offer another chemotherapy or another surgery or intubation and CPR. And if that’s your context, maybe you can’t offer anymore. But to the extent that we can make someone’s remaining time more fulfilling and more comfortable we should always be thinking about what we have to offer.
I strongly agree, Palliation is important. Retiring from Neurosurgery, I considered palliative care. If that practice which I felt very comfortable doing, and had been doing long before it was a speciality, didn't have so many "hoops" to clear before "certification," I would have more strongly pursued it. I personally feel that every physician should be involved in "Palliative care." I can't make your life better or longer; How can I help you with the end of your life?
During my career as a UK nhs family Dr I always felt that the most important work I did was terminal care. My patients receiving palliative care always had my personal phone number and the "security blanket" of being able to reach me 24/7 as someone they trusted and who knew the situation. Access to me was never abused but I like to think it gave comfort and confidence to face up to death and dying peacefully at home. As described, most of what Dr's do is palliative, rarely curative, and when facing death, not having to rely on an unknown emergency Dr and unnecessary emergency admissions is of paramount importance. Even our "hospice at home" palliative care teams work shifts and don't give the kind of care which I gave, though their expertise and advice was important. I never worked with any Dr partners or colleagues who were prepared to give out their personal contact number but I would encourage every primary care Dr who truly cares about his/her patients to do so.
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'm sorry for your untimely loss. As you said here Karen, the medical team needs to work with patients, not against them. I'm sure your husband still had a much better end of life experience because he had you by his side.
I am under the assumption that a person is on hospice only if they have agreed to no longer wanting medical care except for pain management. Warfarin doesn't fit as far as I know. Is that incorrect?
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.
This ongoing conversation between you and Adam is really fascinating. I find myself a little bit in both camps. Just last week I had a patient and his family in the ED where I used a sort of in-between language and spoke about transitioning the focus of our care from saving life no matter what to a focus on making the life that you have left comfortable. I think the context of using the words we have nothing left to offer is very important, as is contextualizing what you mean by that for your patient. It may really not be a good idea to offer another chemotherapy or another surgery or intubation and CPR. And if that’s your context, maybe you can’t offer anymore. But to the extent that we can make someone’s remaining time more fulfilling and more comfortable we should always be thinking about what we have to offer.
Agree!
I've commented in the post before reading this response, but I have a similar opinion.
I strongly agree, Palliation is important. Retiring from Neurosurgery, I considered palliative care. If that practice which I felt very comfortable doing, and had been doing long before it was a speciality, didn't have so many "hoops" to clear before "certification," I would have more strongly pursued it. I personally feel that every physician should be involved in "Palliative care." I can't make your life better or longer; How can I help you with the end of your life?
Loved reading this..!!
Brought back my memories..
a blog piece that grew out of a single week in our paediatric unit when I had to tell two families that their child was going to die.
Parents rise to the occasion when they are truly prepared...!
Read and share your thoughts:
https://vikkypaedia.substack.com/p/when-going-home-becomes-part-of-care?r=o4089&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true
I’ve never heard of a cardiologist or electrophysiologist offering to offer and actually deliver “best supportive care”.
During my career as a UK nhs family Dr I always felt that the most important work I did was terminal care. My patients receiving palliative care always had my personal phone number and the "security blanket" of being able to reach me 24/7 as someone they trusted and who knew the situation. Access to me was never abused but I like to think it gave comfort and confidence to face up to death and dying peacefully at home. As described, most of what Dr's do is palliative, rarely curative, and when facing death, not having to rely on an unknown emergency Dr and unnecessary emergency admissions is of paramount importance. Even our "hospice at home" palliative care teams work shifts and don't give the kind of care which I gave, though their expertise and advice was important. I never worked with any Dr partners or colleagues who were prepared to give out their personal contact number but I would encourage every primary care Dr who truly cares about his/her patients to do so.
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'm sorry for your untimely loss. As you said here Karen, the medical team needs to work with patients, not against them. I'm sure your husband still had a much better end of life experience because he had you by his side.
I am under the assumption that a person is on hospice only if they have agreed to no longer wanting medical care except for pain management. Warfarin doesn't fit as far as I know. Is that incorrect?
You can stay on some meds but you don’t have treatments for diseases to be cured.
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…