Tough Talk: Conversations About Death Can Transform End of Life

Cardiology fellow Haider Warraich, MD, hopes his book about death will change how we live.

Warraich wasn’t planning to write a book about death. Like most physicians-in-training, he expected his career to focus on extending patients’ lives and improving their quality of life. During his residency, he realized that one of his responsibilities as a physician would be “either helping people in their last days or managing their last moments.”

His book, Modern Death: How Medicine Changed the End of Life, traces how attitudes about dying have changed over time and why dying has become a complicated and expensive process that often occurs in hospitals and nursing homes, despite what many patients say they would prefer. Both the book and an article he coauthored in the Journal of the American College of Cardiology examine opportunities for medicine in general, and cardiology in particular, to improve end-of-life care (J Am Coll Cardiol 2017;70(10):1276-89).

Warraich hopes his research will convince cardiologists that they can transform end-of-life care. “There’s a lot of nihilism in healthcare, … [the idea that dying in the hospital] is just a part and parcel of modern medical care and the challenges that come with it,” he says. “One thing that cardiology has done better than so many other specialties has been to revolutionize the care of patients, resulting in dramatic reductions in mortality from heart disease. We can do the same thing for patients not only during their best years but also during their worst years.”

Now a cardiology fellow at Duke University Medical Center in Raleigh-Durham, N.C., Warraich shared insights with CVB.

Cancer patients are more likely to die at home than patients with heart disease. Should cardiology teams be doing anything differently?

In some ways, cancer affects people in a way that no other disease does. Perhaps because of how much progress we have made in heart disease, it may not elicit that type of reaction either in patients or in clinicians. But one of the important reasons this disparity occurs is that survival from heart disease remains so difficult to predict. We need to be even more vigilant when it comes to thinking about end of life for our patients.

When you’re caring for a patient, are you thinking about prognosis?

For patients who are critically ill, I always want to communicate, in the nicest and kindest way, that they are in fact critically ill. Studies show that we all talk about the power of hope and optimism and, especially in heart disease, patients tend to be very optimistic about survival. That’s not a bad thing, but most patients also want their doctors to be honest with them.

Having said that, tailoring treatment to your patients’ values is probably the most important thing, including if a patient wants the team to do everything they can to extend his or her life. I see my job as purveyor of information and experience. Once I’ve done that, I find it very easy to align what I’m doing treatment-wise with the patient’s values.

The challenge is that most of these discussions end up happening at a time of crisis. When patients are in the intensive care unit (ICU), or they’ve just been admitted with a cardiovascular complication, is not the best time for the patient to be able to absorb information, or for the physician to devote time to a discussion. A better place might be in clinic or during a routine visit when the patient is doing well and none of this seems likely to happen.

Can a good death be quantified?

One of the interesting things about medicine in general is that we are so concerned about the patient experience, yet the one group of patients that we never sample are the patients who pass away under our watch in a hospital or in a nursing home. Other specialties, such as oncology, are a step ahead of cardiology in measuring quality at the end of life and trying to come up with the framework to define it. Hospices are required to provide data about the quality of care they’re providing, but specifically in heart disease, we need consensus that measuring quality at the end of life matters. The next step is defining high-quality end-of-life care as it pertains to patients with cardiovascular disease.

Some metrics would be relatively easy, such as the number of patients who end up getting ICDs in the last year of life. Others would measure what really matters to patients at the end of life, such as concordance with a patient’s wishes and the location of death. It would mean surveying patients about where they would prefer to pass away and then aligning our care such that we can make that happen for them.

The flip side of cardiology’s success is seen in some of the end-of-life data: increased disability, heart failure, comorbidities and frailty as well as more drugs and procedures at significant cost. What do these findings signal for how cardiologists should fashion goals for the future?

One of the hopes has been that, if we could develop better treatments and better ways of screening people, then we would shrink how long people have to live with disability. It’s called morbidity compression, but, unfortunately, that hasn’t happened. A better approach would be to shift the focus to getting patients to adhere to a healthier lifestyle earlier—for example, reducing obesity and smoking, which are responsible for a significant amount of disability that affects people for decades in their last years. That, of course, is easier said than done.

You wrote that the poor are more likely to die in the hospital, often after extensive time in the ICU and after undergoing aggressive treatments in the final year of life. What does this suggest about clinical decision making?

First, many people who can’t afford routine medical care almost make up for that in the last years of life. Providing better mechanisms for them to access care throughout their lives might help offset some of the aggressive care at the end of life.

Second, we need to play a much more active role in educating patients who have lower health literacy, especially before they’re in the middle of a crisis. For a lot of patients, “Do Not Resuscitate” or “Do Not Intubate” feels like something is being taken away from them on purpose. They feel like when they need healthcare the most, they’re being asked to say no to something that could be potentially life saving.

We also should partner with communities to really focus on communicating to patients who might be the most difficult to communicate to. La Crosse, Wis., the town in the U.S. that has the highest rate of advanced directives and the lowest amount of invasive medical care at the end of life, does that. Instead of hammering everyone with forms when they come to the hospital, they partner with local churches to improve the education of the community as a whole. And it’s not just the elderly; they also reach both young people and those in middle age. It has a downstream effect on how people think about health, how they value their lives, how they access healthcare.

Should cardiologists be taking a more proactive role in advance care planning discussions?

We live in very good times, in which patients’ opinions are respected. We’re placing even greater emphasis on listening to our patients and then making decisions. Having said that, I do fear that a lot of times, especially for the hardest decisions, physicians may end up putting the ball too far in the patient’s court.

Research shows that the vast majority of patients don’t want to make decisions by themselves. They want to make decisions with their physician’s active involvement. The big variable is trust. How much do they trust information that their physician is providing? Unfortunately, because of how fractured medical care has become, people come to the hospital and may see a new face every single day. They’re having to have personal, intimate, important conversations with them. Though they trust their physician to be medically qualified, they may not have the same type of personal trust they would want for making big decisions. Staying a step ahead of those situations is probably the best thing that cardiologists can do, instead of leaving these conversations to physicians they may have no relationship with.

You’ve said that palliative and hospice care are underused in cardiology. Do you think the cardiology community will get more comfortable with when and how to make those referrals?

Part of the reason hospice is underutilized in heart disease is because it’s not really designed for heart disease patients, and cardiologists understand that. A lot of our patients have complex disease, so it’s hard for them to be taken care of at home by hospice providers. Hospice providers, too, are uncomfortable taking care of a lot of these patients, especially patients with heart failure. We can improve the training for hospice providers so that, as cardiologists, we feel comfortable that our patients will be managed in a way that their symptoms and quality of life are improved.

Also, surveys have shown that a lot of patients want palliative care but also some degree of traditional medical care. They may want to come to the hospital, for example, if their heart failure starts to act up. There is a need to redesign hospice care for patients with heart disease so that it caters to them. Hospice traditionally grew out of the care of terminally ill cancer patients, which is why it serves those patients extremely well.

For patients with heart disease one of the biggest barriers is the question of prognosis. Hospice requires clinicians to make an assessment that a patient has six months to live. That is hard to do with many of our patients. What needs to be done is not only increase the awareness among cardiologists and other providers that we should consider palliative care more often but also improve hospice so that it is a place better suited for terminally ill heart disease patients.

Are you often asked to perform treatments you consider futile?

That’s really one of the harder things about heart disease, especially now that we have so many interventions and they are becoming increasingly safe. We have a lot of options for patients but our ability to predict whether they’ll actually extend life or improve life has not changed. We don’t have better prediction tools today vs. 30 years ago, but we have a lot better tools in general. Our confidence in feeling something is futile is not as strong, for example, as for a patient who has metastatic melanoma and has had two or three lines of chemotherapy. Most oncologists would be more confident saying more chemotherapy may not be useful, surgery may not be useful and so on.

How has researching death and dying changed your cardiology practice?

am much more likely to talk about death and dying. Not that I want to scare patients, but because I realize that this is something important to patients that they may find difficult to think about and talk about. It’s a relief for patients to have someone to talk to about this. Death and dying and the fear of death are central to what they are thinking about, and yet they may not be able to say it out of fear or uncertainty. So, now, I talk about it along with all the other things that people want to talk about. I bring it to the table.