Palliative Care in Heart Failure: Manage the Person, Not the Prognosis

An Interview With Diane Meier

John M. Mandrola, MD

Disclosures

March 10, 2016

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Palliative Care Vs Hospice

John M. Mandrola, MD: Hi, everyone. This is John Mandrola from theheart.org on Medscape. I am very excited to have Dr Diane Meier with us today. She is a professor of medicine at the Icahn School of Medicine at Mount Sinai and director of the Center to Advance Palliative Care. Diane, welcome.

Diane E. Meier, MD: Thank you, John.

Dr Mandrola: Will you explain the difference between palliative care and hospice?

Dr Meier: That is a very important question and one that I encounter very frequently. Hospice is a form of palliative care that is limited to care of the dying. There is actually a Medicare benefit that pays for it. The eligibility criteria require that the patient has a short prognosis of under 6 months that two doctors have signed to say that, and that the patient has also signed something saying that they give up regular Medicare coverage for disease treatment.

As you can imagine, most people never get to hospice care because no one knows when they are going to die—and quite logically, they don't want to give up disease treatment. In this country, the median length of stay in hospice is 18 days, even though it is a 6-month benefit. Of those who get hospice, 30% of patients get it for less than 1 week and 10% for less than 24 hours.

Obviously, hospice is a great thing if you get it. The care comes to your home. Equipment, medications, and things that you need to be comfortable are free. You get a whole team—social workers, chaplains, physical therapists, doctors, and nurses—coming to your house. It is great, but most people never get it because the eligibility criteria restrict them.

Because of that limitation, the great majority of people who need care focused on their quality of life; relief of symptom distress, shortness of breath, pain, and fatigue; support for their exhausted family caregivers; and help understanding what to expect in the future never get hospice. Instead, they end up using 911, the emergency department, or the hospital every time they have a problem.

The field of palliative care grew because of the limitations of the Medicare hospice benefit, to try to respond to people who might live 10 years or who might go on to be cured. Most of those patients have chronic illnesses that are progressive over many years, but they still have major challenges to their quality of life. They have symptom distress and burdens on their family. Palliative care grew in an attempt to provide an added layer of support alongside the disease treatment that specialists are providing for the primary disease.

An Added Layer of Support

Dr Mandrola: I want to pick up on that point [because] that is the key point: Palliative care is not switching to a different care, is it?

Dr Meier: No. It comes alongside; it is an added layer of support. Clearly, these patients urgently need the expertise, depth of knowledge, and experience that specialists have. If I had heart failure, I would want to see a heart failure specialist who really knows what they are doing with my heart.

On the other hand, I have other issues as well. I might not have enough money. The copay and deductible for my insurance might be making it very difficult for me to afford my medications. I might be avoiding certain treatments that I need because of money. I might have an alcoholic son who is stealing my money. I might have difficulty reading or understanding English and the instructions that you give me. I might not understand that I shouldn't be eating pizza and Chinese food, even though I have been told not to.

So, patients need both. They need a holistic type of approach for their socioeconomic status, poverty, lack of understanding, lack of literacy, or violence in the community or at home. Plus, they need the expertise of the disease specialist—in this case, the cardiologist.

Effect of Palliative Care of Survival

Dr Mandrola: Right. We were talking earlier about how it is possible that, because palliative care addresses those non-ejection fraction issues, it might actually improve survival in patients with heart failure. What are your thoughts about that?

Dr Meier: The data are accumulating that people who get palliative care at the same time as disease treatment actually live longer than patients who only get disease treatment. There are now six or seven studies, and most of them were done in cancer patients. There was one on emphysema patients from London that showed better survival.[1] A randomized controlled trial[2] is currently taking place at Duke on early, concurrent palliative care with best cardiac care to see what the impact will be on quality of life, utilization, and survival. If you look at the clinical trials for other disease states, survival is better.

Dr Mandrola: Cardiologists love mechanisms, and there is a mechanism by which palliative care would help because it would help these other noncardiac issues. Maybe even cardiac issues, too.

Dr Meier: Right. For example, you might have a patient and family who really don't understand that the medications have to be taken every day, or that when you run out of your medications, you have to refill the prescription, or that foods that are very concentrated with salt are very risky in terms of cardiac function. If you have a team that is going into the house and sitting down with the patient and family, asking them whether they understand how to manage this disease, and really helping them to understand that how well they do is in their hands, you get better outcomes, for obvious reasons.

Another key part of it, if you think about mechanisms, is that your audience may not be aware that hospitalization is the third leading cause of death in the United States. Anyone who has worked in a hospital knows why. Hospitals are extremely dangerous. There are too many people, too many chances for error, too many chances for acquiring a multi–antibiotic-resistant bug, too many chances to fall in the middle of the night or get confused.

The fact that palliative care teams help patients to avoid unnecessary hospitalizations is probably the primary mechanism of better survival. There are also data suggesting that palliative care markedly decreases the incidence of major depression. Every study that has looked at it has found that depression is an independent predictor of mortality.[3] This is true not only in heart failure but also in dementia, cancer, frailty—every disease that has been looked at. Depression kills. The ability to address it, both through drugs as well as social and emotional support, is probably also a predictor.

Lastly, if you are constantly terrified that you are going to feel like you are suffocating and not able to catch your breath, if you are constantly feeling that getting out of your chair to get to the bathroom is a greater challenge than you can face, if you feel hopeless and you are afraid, then the anxiety and stress level and the catecholamines associated with the inflammatory condition are probably not good for you, either.

Palliative Care Based on Need vs Prognosis

Dr Mandrola: Exactly. One of the challenges with patients with advanced heart failure is that heart failure is a little different from cancer. It seems like there are more storms and then rallies. Can you talk about that?

Dr Meier: Yes. Heart failure is a great example of why prognosis should have nothing to do with eligibility for palliative care. We have no idea when a patient with heart failure is going to die. They might rally again for the 14th time with this exacerbation, or they might not. We don't know. We are going to do everything that we can to help them rally, but if they get a resistant infection this time, all bets are off.

If we were to wait for clarity on prognosis to decide when someone needed palliative care, no one would get it with heart failure. It really has to be based on need, not prognosis. Again, people who live with heart failure—though they may live with it for many, many years—have a lot of burdens imposed by the disease, all kinds of burdens. The disease takes over. It is management. Family members have to quit work. Family members and patients end up spending all of their savings, including children's college savings, to manage the disease, thanks to our healthcare system. Support for people who are dealing with that is not only better for patients and families and clearly the right thing to do, but it markedly reduces reliance on inappropriate and unnecessary hospitalizations.

Key Skills in Talking to Patients

Dr Mandrola: Can you give cardiologists some tips on how to talk to patients about eliciting their preferences or describing the two paths that they could be on when they have heart failure?

Dr Meier: It is amazing to me that doctors go through 4 years of medical school, 3 years of residency, and infinite numbers of years of fellowship training without ever having been trained to have these conversations. They are not easy to have, and we are not born knowing how to have them. The key skills are asking open-ended questions and listening.

One of the hardest things for doctors to do is to be quiet and listen. Yet, it is the key skill that we need to acquire. Practice helps. You get over it. We feel like we should speak into the silence because that way we are helping. But in fact, listening is the way to help, to really understand what is driving the patient's feelings and behavior.

For example, if you are meeting with a patient who has had his or her fourth exacerbation in the past 12 months, they are coming closer together, and it is more and more difficult to prevent them from happening with the regimens that you are trying, it is important to begin by saying, "I am glad that you got out of the hospital last week. If you don't mind, let's talk a little bit about what you think about what has been happening. What is your understanding about what has been happening?"

Ask them that, and then be quiet and listen. They might say to you, "I know that my heart failure is getting worse. I know that you are doing your best, doc. I've been taking all my meds, but this just keeps happening sooner and sooner." On the other hand, if they say to you, "The spirit is punishing me for something that I said or did," you are in a completely different conversation. It is very important to understand where they are and what their understanding is.

I also routinely ask patients what their other doctors have told them, because it is almost always the case that they saw 10 different hospitalists, 20 different house staff, the infectious disease consultant, you name it. They saw many, many doctors who most likely did not say the same thing about what to expect. "What did the other doctors tell you?" It is also very important to understand that, most of the time, what they heard was contradictory.

And then you ask permission: "Would it be okay if I told you what I think is going on with your heart now?"

Dr Mandrola: Yes, that is unusual. That is something that I have learned late in my career—to ask permission.

Dr Meier: To ask permission, first of all, is a warning shot. It tells the patient that the doctor is about to give some important information, and it lets people get prepared and focus.

Dr Mandrola: What do most people say?

Dr Meier: They say, "Great. Yes, of course. I would love to talk about that." But there is a small fraction of patients—and this occurs in certain cultures more often than others—who believe that they are not supposed to be making the decisions. The oldest son should be making the decisions, and they may say, "No, I don't want to talk about it."

The reaction is not to force the information on them. If you are forcing information on someone who doesn't want it, there goes the trust forever. Rather, it is to ask who you can talk to in the family or someone that they are close to about what is going on with their illness, so that good plans can be made for them.

Discussing Prognosis

Dr Mandrola: How do you discuss prognosis with patients? There are some different words, aren't there?

Dr Meier: Yes. During one of those conversations, say, for example, "As we have both experienced, your heart is failing, and that is why you keep ending up in the hospital so frequently. Unfortunately, I think it is progressing." And then stop talking. That is the hardest thing for doctors.

Let that information sink in. The patient already feels this, even if they are not consciously aware of it. They are living it, but you are confirming what they already know. Let it sink in. Allow silence. What will feel like a huge amount of time is, in reality, 10 seconds or 20 seconds. Wait for them to say something back. They might say something like, "How long do you think I have?" And then, of course, you would assume that they are asking about prognosis.

Dr Mandrola: But they might not be.

Dr Meier: They might not be. They might be asking how long they have before going back into the hospital or how long they have before getting to the top of the transplant list. "How long do I have before you guys change your mind and decide to give me one of those machines (ventricular assist device)?"

If you don't know what they are asking, you are going to answer the wrong question. When the person says to you, "I want to know how long I have to live," then you actually have to answer the question. Not by saying, "No one knows. That is in God's hands. It is completely unpredictable." Because that is not true, right?

What we say is, "On average, people with heart failure may live for several years with this stage of disease. The next time you end up in severe heart failure, you could die, or you could go on like this for several years. It varies in heart failure, but the average is several years. Our goal is to try to keep you from needing to come back to the hospital by figuring out how we can better manage your heart."

Dr Mandrola: So is it something like "people in your situation"? Those types of words?

Dr Meier: Yes, that is what I usually say. "On average, people like you..."

What the average does is give people a benchmark. I will say, "On average, it is as many as a few years, but some people live a lot less if we can't get a handle on the situation or they get a bad infection. Some people live longer. We are going to work hard to keep you on the live-longer side of this."

What does that do? It gives people a frame. Very often, people with heart failure don't know that it is a terminal disease. They don't know that they are going to die of it. They don't really understand it because it doesn't have the same kind of ethos as cancer. The word "cancer" spells death to people, but not heart disease. Even though it is the leading cause of death in our country, it is not understood as a cause of death. The same is true of Alzheimer disease.

It is very important for people to understand that, all things being equal, this is the disease that they are going to die of. Without that information, how are they going to spend the rest of their time? How would you think about the fact that you haven't spoken to your son in 30 years? Maybe you need to get over it and reach out to him. How would you think about getting your affairs in order? How would you think about how you spend your time?

People have a right to that information, and it is a critical developmental phase in a person's life—how they live before they leave. If we withhold that information, we are withholding letting them write that chapter the way they would want to. I have had so many patients who, once they understood what is happening, went on to very deliberately heal a number of relationships and lived for a long time. Those were things that they thought they could deal with later, but really should deal with now.

Dr Mandrola: It is like bringing the heart back into heart failure care.

Dr Meier: Yes, exactly.

Dr Mandrola: Diane, thank you for being with us. It has been excellent having you.

Thank you for listening. This is John Mandrola, from theheart.org on Medscape.

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