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Palliative Care for Patients With Heart Failure: Steven Z. Pantilat, MD, discusses palliative care for patients with heart failure.
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Palliative Care for Patients With Heart Failure: Steven Z. Pantilat, MD, discusses palliative care for patients with heart failure.
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>> This is Ed Livingston, Deputy Editor for Clinical Reviews and Education of JAMA. I'm speaking with Dr. Steven Pantilat, who wrote Chapter 15 Palliative Care for Patients with Heart Failure in Care at the Close of Life. Dr. Pantilat, could you tell us about yourself? >> I'm a Professor of Medicine at UC San Francisco. And I also direct palliative care program here at UCSF. We have inpatient palliative consultation service. We have a fellowship, and do a lot of education. We conduct research.
And we also train teams from hospitals across the country to conduct palliative care. And I direct that program. >> This chapter is about the application of palliative care to patients with heart failure. And it begins with a really interesting story about a patient. Could you tell us about this patient? >> Sure. Mr. R. was 74 years old, married, retired, immigrated to the United States in the 1950s. He had class II to III heart failure, which means that he had heart failure where sometimes it would limit his activity.
That would be class III heart failure, meaning that he might get short of breath when he was walking, maybe when walking upstairs, and had to limit some of his activities because of the heart failure. He also had diabetes. And he got to a point where he really wasn't taking his medicines. He just felt like he didn't want to take them. And it was a burden to continue to take his medicines. Turns out the medicines in heart failure are actually very important for helping people feel better and live longer.
And when he expressed this desire to his doctor to really not take his medicines, his doctor talked to him about that. And finally said, you know, if your focus really is more on your comfort and you're not that interested in managing the heart failure very aggressively, you know, hospice might be a service that would be appropriate for you. And as the patient learned about hospice he said, yeah, you know what, that sounds like what I want to do. And so the patient, Mr. R, enrolled in hospice, which is relatively uncommon.
Only 12 percent of hospice enrollments are primarily for people with heart failure, even though heart disease is the leading cause of death in the United States. >> So as a physician, I normally think about hospice in terms of cancer care. Could you tell me a little bit more about the use of hospice care for patients with heart failure or other nonmalignant conditions? >> You're correct to say that hospice care has historically been overwhelmingly for people with cancer. And still the majority of people who enroll in hospice have cancer.
But increasingly we recognize that people with heart failure and other chronic illnesses like COPD, dementia, liver disease, end stage renal disease, those patients also have palliative care needs that can be well served by hospice. And we are seeing an increased enrollment for people with those conditions. The challenge, of course, being that prognostication is much more difficult for people with chronic illnesses other than cancer. And so that can make hospice referral difficult. But hospice doesn't require that the patient die within six months.
I think that's a misperception that people have. Only that the physician thinks that if the disease runs its normal course, there's a chance that the patient will die within six months. And I've certainly had, and many people have had patients who live longer than six months. And there's really not a problem. And in fact, when you look at Mr. R, with the care and concern that was provided by hospice and visits at home and really focusing on his well-being, he decided in fact that he wanted to start taking his medicines for his heart failure again.
And in fact did so well that ultimately he did what we call graduated from hospice. And so it's one of those places where hospice was actually a wonderful intervention for him for really promoting his quality of life. He made the decision that he wanted to take his medicines. That made him feel better, and then he no longer needed hospice services. >> Could you tell me a little bit more about the nature of hospice service? I'm going to assume that many physicians equate the transition to hospice as withdrawal of care, and that's clearly not the case.
As occurred with this patient, he actually developed a more structured approach to his disease, and, as you said, graduated from the hospice program. What is done in hospice? And how does that differ from a withdrawal of care or from putting a patient in the hospital? >> The philosophy of hospice is the philosophy of palliative care, which is that the goal is to promote the patient's quality of life, and to have the best possible quality of life for long as possible. That's the goal. That's what was done for Mr. R, and that's why he did well.
What does that mean? It really means scrupulous focus on symptoms, pain, nausea, fatigue, shortness of breath, and using a wide variety of medications. In this case, for heart failure making sure that the heart failure is managed well. And clearly, people with heart failure who take their medicines will feel better. And optimizing their medical management is a critical part of helping people feel better, but also dealing with their pain, dealing with shortness of breath that might not be getting better, even with maximal treatment for their heart failure, and thinking about, for example, the use of opioids for managing shortness of breath.
It's about decision-making, and really helping patients think about what decisions about their healthcare are going to be most consistent with their values and goals. Do they want to come back to the hospital? Do they want to consider other intervention for their heart disease? And what's their ultimate goal for their life? And then how does medical treatment help support those goals? And then finally, providing what we call psychosocial support, which is to say emotional support, psychological support, social support. Many people wonder who will take care of me, where will I be cared for, how will I be cared for.
And addressing those issues explicitly can relieve a lot of anxiety for patients. And hospice has a team approach that really allows the team and the patient to really focus on those broad range of issues. The challenge when it comes to heart failure is that the current rules around hospice do require the doctor to give a six-month prognosis. And in general, it does require patients to make a decision against a lot of invasive interventions, returning to the hospital, for example, or having invasive interventions.
And for many people with heart failure that can be the sticking point. When they have bad exacerbations of their shortness of breath they do want to come back to the hospital because it does make them feel better. I think increasingly today, unlike when we wrote this paper, I think increasingly today there are more interventions we do for patients, including left ventricular assist devices, for example, that are interventions that really for certain patient populations really help them feel a lot better. People who ten years ago had end-stage heart failure might in fact be good candidates for left ventricular assist devices that really do help them achieve a better quality of life.
And so they might not enroll in hospice. The way we think about that now is we really think more broadly about palliative services for people with heart failure that isn't bound by the rules of hospice, but still addresses the same issues, but can do that in the clinic setting, can do that in the home setting, and can do that in the hospital setting. >> What are the clinical features of congestive failure that would lead you to refer a patient to hospice care? >> Heart failure has many symptoms for patients.
And they actually have a lot of physical and psychological symptoms that they deal with. Shortness of breath, particularly with exertion, is one that people often struggle with in heart failure. Edema is another symptom that people struggle with. Fatigue is another very common symptom, as is depression. In our research we've also found that pain is a very common symptom, not always related to the heart failure, but a concomitant condition that often is not addressed and really limits quality of life.
Having said that, many of those symptoms, for example, the shortness of breath, the edema can be managed best by maximizing and optimizing heart failure treatment. So for many patients who have edema, fatigue, shortness of breath, even when their physician thinks they're optimized might really benefit from seeing a cardiologist, and even a heart failure specialist. So while not all patients need to see a heart failure specialist, I think people who have these persistent symptoms do benefit from that.
When those symptoms persist despite optimal treatment, that's a really good time to refer someone to hospice. When you have someone who's losing weight, the cardiac cachexia syndrome, which is similar to the cancer cachexia syndrome; people lose weight even if they're still eating well, that's another time to think about referring someone because it's a sign of poor prognosis. Anyone has been admitted to the hospital multiple times in a year, you know, two or more times in year, certainly has one, a limited prognosis.
And two, we at least need to think about palliative care in that setting around the decision-making, if that's something that you want to continue, are you really getting the benefit you want? Is that really promoting your quality of life? Patients who develop anemia, renal failure, hypotension, and hyponatremia those are all signs of poor prognosis that should make a clinician think about, gosh, is this a patient who would benefit from palliative care and possibly from hospice. And then, obviously, anyone who's had sudden death is a patient who really does need a referral to palliative care to at least begin to think about, you know, once that's happened once it is more likely to happen again, and to really ask patients about that, and whether they'd want to be resuscitated again.
The issue being that basically people with heart failure die primarily in one of two ways; one from worsening heart failure, and two suddenly. Sudden death happens in about 30 to 50 percent of patients with heart failure regardless of the stage of illness. And so that possibility is always there. And having that conversation with the patient that that is a possibility is very important. There are interventions that can help to prevent that. But part of the discussion is what will the end of life look like.
Sudden death is often preferred by many patients over progressive heart failure, progressive shortness of breath, progressive edema. And so many patients when faced with that decision explicitly get to a point where they might reasonably choose the potential of sudden death over progressive heart failure. >> Is there anything you'd want to tell the generalist physician taking care of these patients about referring for hospice? Is this something that they should do on their own? Or should they do it with a cardiologist? >> When the disease is very advanced and people are in stage III or stage IV, it seems reasonable, when in considering a hospice referral, of also getting some input from a cardiologist to make sure that the heart failure is being managed as well as possible.
Again, because it does relieve symptoms, it does help people feel better and live longer. But primary care physicians can make these referrals in conversation with the patient. And it is polite to loop in the cardiologist about it. But in many ways primary care physicians play a really critical role in making these referrals, whether it's to hospice or to palliative care services. >> Can you explain the difference between palliative and end-of-life care for us? >> Palliative care is not end-of-life care. And there's a big misperception in the world among patients and families.
If they've heard of palliative care, or hospice, they often have a misperception that it is the same as end-of-life care. And even many physicians have that misperception. And if there was one message that I would ask people to take away is that palliative care is not end-of-life care. It certainly includes it, but it is not exclusively that. And there's so much that palliative care does to really help people have a better quality of life, and even live longer. In fact, there's a study that looked at patients referred to hospice, there was no evidence that people referred to hospice lived shorter.
And in fact, the people with heart failure referred to hospice seemed to live longer than those who were not. And there's some really important and very interesting evidence in cancer, in lung cancer, that people randomized to receive palliative care alongside chemotherapy actually lived longer, better and longer, than those who received chemotherapy alone. So there's some very intriguing evidence that really demonstrates that rather than palliative care making you live less long, that it's somehow giving up, it's exactly the opposite.
It's, sort of, doubling down and really investing in feeling better, and certainly no evidence that you live less long, and intriguing evidence that shows that you live longer. >> This is Ed Livingston, Deputy Editor for Clinical Reviews and Education for JAMA speaking with Dr. Steven Pantilat regarding palliative care for patients with heart failure.
Segment:0 .
>> This is Ed Livingston, Deputy Editor for Clinical Reviews and Education of JAMA. I'm speaking with Dr. Steven Pantilat, who wrote Chapter 15 Palliative Care for Patients with Heart Failure in Care at the Close of Life. Dr. Pantilat, could you tell us about yourself? >> I'm a Professor of Medicine at UC San Francisco. And I also direct palliative care program here at UCSF. We have inpatient palliative consultation service. We have a fellowship, and do a lot of education. We conduct research.
And we also train teams from hospitals across the country to conduct palliative care. And I direct that program. >> This chapter is about the application of palliative care to patients with heart failure. And it begins with a really interesting story about a patient. Could you tell us about this patient? >> Sure. Mr. R. was 74 years old, married, retired, immigrated to the United States in the 1950s. He had class II to III heart failure, which means that he had heart failure where sometimes it would limit his activity.
That would be class III heart failure, meaning that he might get short of breath when he was walking, maybe when walking upstairs, and had to limit some of his activities because of the heart failure. He also had diabetes. And he got to a point where he really wasn't taking his medicines. He just felt like he didn't want to take them. And it was a burden to continue to take his medicines. Turns out the medicines in heart failure are actually very important for helping people feel better and live longer.
And when he expressed this desire to his doctor to really not take his medicines, his doctor talked to him about that. And finally said, you know, if your focus really is more on your comfort and you're not that interested in managing the heart failure very aggressively, you know, hospice might be a service that would be appropriate for you. And as the patient learned about hospice he said, yeah, you know what, that sounds like what I want to do. And so the patient, Mr. R, enrolled in hospice, which is relatively uncommon.
Only 12 percent of hospice enrollments are primarily for people with heart failure, even though heart disease is the leading cause of death in the United States. >> So as a physician, I normally think about hospice in terms of cancer care. Could you tell me a little bit more about the use of hospice care for patients with heart failure or other nonmalignant conditions? >> You're correct to say that hospice care has historically been overwhelmingly for people with cancer. And still the majority of people who enroll in hospice have cancer.
But increasingly we recognize that people with heart failure and other chronic illnesses like COPD, dementia, liver disease, end stage renal disease, those patients also have palliative care needs that can be well served by hospice. And we are seeing an increased enrollment for people with those conditions. The challenge, of course, being that prognostication is much more difficult for people with chronic illnesses other than cancer. And so that can make hospice referral difficult. But hospice doesn't require that the patient die within six months.
I think that's a misperception that people have. Only that the physician thinks that if the disease runs its normal course, there's a chance that the patient will die within six months. And I've certainly had, and many people have had patients who live longer than six months. And there's really not a problem. And in fact, when you look at Mr. R, with the care and concern that was provided by hospice and visits at home and really focusing on his well-being, he decided in fact that he wanted to start taking his medicines for his heart failure again.
And in fact did so well that ultimately he did what we call graduated from hospice. And so it's one of those places where hospice was actually a wonderful intervention for him for really promoting his quality of life. He made the decision that he wanted to take his medicines. That made him feel better, and then he no longer needed hospice services. >> Could you tell me a little bit more about the nature of hospice service? I'm going to assume that many physicians equate the transition to hospice as withdrawal of care, and that's clearly not the case.
As occurred with this patient, he actually developed a more structured approach to his disease, and, as you said, graduated from the hospice program. What is done in hospice? And how does that differ from a withdrawal of care or from putting a patient in the hospital? >> The philosophy of hospice is the philosophy of palliative care, which is that the goal is to promote the patient's quality of life, and to have the best possible quality of life for long as possible. That's the goal. That's what was done for Mr. R, and that's why he did well.
What does that mean? It really means scrupulous focus on symptoms, pain, nausea, fatigue, shortness of breath, and using a wide variety of medications. In this case, for heart failure making sure that the heart failure is managed well. And clearly, people with heart failure who take their medicines will feel better. And optimizing their medical management is a critical part of helping people feel better, but also dealing with their pain, dealing with shortness of breath that might not be getting better, even with maximal treatment for their heart failure, and thinking about, for example, the use of opioids for managing shortness of breath.
It's about decision-making, and really helping patients think about what decisions about their healthcare are going to be most consistent with their values and goals. Do they want to come back to the hospital? Do they want to consider other intervention for their heart disease? And what's their ultimate goal for their life? And then how does medical treatment help support those goals? And then finally, providing what we call psychosocial support, which is to say emotional support, psychological support, social support. Many people wonder who will take care of me, where will I be cared for, how will I be cared for.
And addressing those issues explicitly can relieve a lot of anxiety for patients. And hospice has a team approach that really allows the team and the patient to really focus on those broad range of issues. The challenge when it comes to heart failure is that the current rules around hospice do require the doctor to give a six-month prognosis. And in general, it does require patients to make a decision against a lot of invasive interventions, returning to the hospital, for example, or having invasive interventions.
And for many people with heart failure that can be the sticking point. When they have bad exacerbations of their shortness of breath they do want to come back to the hospital because it does make them feel better. I think increasingly today, unlike when we wrote this paper, I think increasingly today there are more interventions we do for patients, including left ventricular assist devices, for example, that are interventions that really for certain patient populations really help them feel a lot better. People who ten years ago had end-stage heart failure might in fact be good candidates for left ventricular assist devices that really do help them achieve a better quality of life.
And so they might not enroll in hospice. The way we think about that now is we really think more broadly about palliative services for people with heart failure that isn't bound by the rules of hospice, but still addresses the same issues, but can do that in the clinic setting, can do that in the home setting, and can do that in the hospital setting. >> What are the clinical features of congestive failure that would lead you to refer a patient to hospice care? >> Heart failure has many symptoms for patients.
And they actually have a lot of physical and psychological symptoms that they deal with. Shortness of breath, particularly with exertion, is one that people often struggle with in heart failure. Edema is another symptom that people struggle with. Fatigue is another very common symptom, as is depression. In our research we've also found that pain is a very common symptom, not always related to the heart failure, but a concomitant condition that often is not addressed and really limits quality of life.
Having said that, many of those symptoms, for example, the shortness of breath, the edema can be managed best by maximizing and optimizing heart failure treatment. So for many patients who have edema, fatigue, shortness of breath, even when their physician thinks they're optimized might really benefit from seeing a cardiologist, and even a heart failure specialist. So while not all patients need to see a heart failure specialist, I think people who have these persistent symptoms do benefit from that.
When those symptoms persist despite optimal treatment, that's a really good time to refer someone to hospice. When you have someone who's losing weight, the cardiac cachexia syndrome, which is similar to the cancer cachexia syndrome; people lose weight even if they're still eating well, that's another time to think about referring someone because it's a sign of poor prognosis. Anyone has been admitted to the hospital multiple times in a year, you know, two or more times in year, certainly has one, a limited prognosis.
And two, we at least need to think about palliative care in that setting around the decision-making, if that's something that you want to continue, are you really getting the benefit you want? Is that really promoting your quality of life? Patients who develop anemia, renal failure, hypotension, and hyponatremia those are all signs of poor prognosis that should make a clinician think about, gosh, is this a patient who would benefit from palliative care and possibly from hospice. And then, obviously, anyone who's had sudden death is a patient who really does need a referral to palliative care to at least begin to think about, you know, once that's happened once it is more likely to happen again, and to really ask patients about that, and whether they'd want to be resuscitated again.
The issue being that basically people with heart failure die primarily in one of two ways; one from worsening heart failure, and two suddenly. Sudden death happens in about 30 to 50 percent of patients with heart failure regardless of the stage of illness. And so that possibility is always there. And having that conversation with the patient that that is a possibility is very important. There are interventions that can help to prevent that. But part of the discussion is what will the end of life look like.
Sudden death is often preferred by many patients over progressive heart failure, progressive shortness of breath, progressive edema. And so many patients when faced with that decision explicitly get to a point where they might reasonably choose the potential of sudden death over progressive heart failure. >> Is there anything you'd want to tell the generalist physician taking care of these patients about referring for hospice? Is this something that they should do on their own? Or should they do it with a cardiologist? >> When the disease is very advanced and people are in stage III or stage IV, it seems reasonable, when in considering a hospice referral, of also getting some input from a cardiologist to make sure that the heart failure is being managed as well as possible.
Again, because it does relieve symptoms, it does help people feel better and live longer. But primary care physicians can make these referrals in conversation with the patient. And it is polite to loop in the cardiologist about it. But in many ways primary care physicians play a really critical role in making these referrals, whether it's to hospice or to palliative care services. >> Can you explain the difference between palliative and end-of-life care for us? >> Palliative care is not end-of-life care. And there's a big misperception in the world among patients and families.
If they've heard of palliative care, or hospice, they often have a misperception that it is the same as end-of-life care. And even many physicians have that misperception. And if there was one message that I would ask people to take away is that palliative care is not end-of-life care. It certainly includes it, but it is not exclusively that. And there's so much that palliative care does to really help people have a better quality of life, and even live longer. In fact, there's a study that looked at patients referred to hospice, there was no evidence that people referred to hospice lived shorter.
And in fact, the people with heart failure referred to hospice seemed to live longer than those who were not. And there's some really important and very interesting evidence in cancer, in lung cancer, that people randomized to receive palliative care alongside chemotherapy actually lived longer, better and longer, than those who received chemotherapy alone. So there's some very intriguing evidence that really demonstrates that rather than palliative care making you live less long, that it's somehow giving up, it's exactly the opposite.
It's, sort of, doubling down and really investing in feeling better, and certainly no evidence that you live less long, and intriguing evidence that shows that you live longer. >> This is Ed Livingston, Deputy Editor for Clinical Reviews and Education for JAMA speaking with Dr. Steven Pantilat regarding palliative care for patients with heart failure.
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