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Death is as old as time itself. But it has also changed in modern times, with technology prolonging life, social media making death a shareable event, and most people checking out of this world in hospitals and nursing homes instead of at home.
Haider Warraich, a cardiologist at Duke University Medical Center, takes readers on a scientific and philosophical journey of the modern way to die in his new book, Modern Death: How Medicine Changed the End of Life. He recently joined the Knowledge@Wharton show on Sirius XM channel 111 to share insights from his practice.
An edited version of the interview appears below.
Knowledge@Wharton: What was it that drove you to research death in the first place?
Haider Warraich: As a physician, what really drove me to write this book was that I would find myself in situations all the time in which I was talking to patients and their loved ones about very, very serious things related to the end of life, and what kind of care they would want in those types of critical situations.
What struck me was a couple of different things. One was how little people knew about just how we pass these days. I feel like so many of the assumptions that people came in with were drawn from either popular culture or from depictions of how people used to pass away in old times. It was like they were in this new landscape, and they were completely lost. I wanted to draw a map for people such as them, and everyone who either has experienced some type of disease, or who has to take care of an elderly parent or loved one who is close to the end of life.
I wrote it for those people, as well as for myself — because as a physician, I had gotten very good at the logistics of what to do when people pass away, but there were many greater questions that I just didn’t have the answers to.
Knowledge@Wharton: One of the topics that you bring up is that death today is in many cases prolonged.
Warraich: That’s really one of the collaterals of the great advances in medical science that we’ve seen. If you look at surveys from, say, the city of Boston, from the 1800s, or from London during that time, people died mostly of three things: injuries, infections, or some types of nutritional deficiencies. Really, death was a very binary event, and it was very sudden.
For example, before the advent of medical technology, if someone had a heart attack or if someone had some type of abnormal heart rhythm such as ventricular tachycardia, they would almost certainly die, in many cases instantaneously, sometimes even in their sleep.
Now, with new technologies, what happens is we are able to help people through those potentially fatal episodes. But what happens is that now, people live longer, but with more chronic diseases. And especially closer to the end of life, many patients have multiple chronic diseases that we can at best manage, but that we can’t cure. They’re in and out of the hospitals. In some ways, dying has become a phase of our life, instead of being just an instantaneous sort of flash event.
“Dying has become a phase of our life, instead of being just an instantaneous sort of flash event.”
Knowledge@Wharton: One of the people you bring up as an example is [former U.S. Vice President] Dick Cheney, in light of the heart issues that he’s had, especially in the last several years.
Warraich: Cheney’s history is the most dramatic example of the advances in medical science we’ve seen. I start that story by talking about Warren Harding, who was a president, and who was depicted in the recent HBO show “Boardwalk Empire.” He had heart failure and basically died in a hotel room. There was no physician close to him, and it was almost instantaneous.
But Cheney had multiple heart attacks. He then had bypass surgery. Then he got a pacemaker. Then he even got a mechanical heart, an LVAD [left ventricular assist device]. And then lastly, he ended up getting a heart transplant. So in essence, if Cheney had lived maybe a few decades ago, he could have very likely died from one of the four heart attacks that he had during his very young life. Yet he’s alive to this date, with the help of medical science.
Knowledge@Wharton: We have so much more technology and so many more options that can help extend life. But you also have people not wanting to extend their lives by these measures, which can lead to disagreements with their family members.
Warraich: The desire to extend life is probably one of our greatest strengths as a species. You want any organism to protect their life and to extend it for as long as possible, so that they can have an evolutionary advantage over other competitors. That’s wired into our DNA, so to speak.
Having said that, a lot of patients reach a certain point in which they personally may feel like more may not be what they want. And by more, I mean more procedures, more time in the intensive care unit, more CPR, or more mechanical ventilation, and so on. That’s why, even though we’ve had these great medical advances, you find many patients who at some point will say, “No more. I am done.”
At the same time, family members may not be on the same page — obviously, because they have different perspectives. They have a loved one and they want them to be around. They feel like they don’t want them to “give up.” They want to be their loved one’s source of strength at that time.
And also, importantly, they don’t want to have the guilt of feeling like they denied their loved one, or talked their loved one out of doing something that could have potentially prolonged their life. All of these things end up making it a very, very complicated situation for patients, family members, loved ones. And it affects how they interact with their medical teams.
Knowledge@Wharton: You grew up in Pakistan. I’d be interested to get your perspective on how death was viewed in that country when you were growing up.
Warraich: Coming from Pakistan to the United States, as far as the end of life is concerned, was like stepping into a time machine. In some ways, how people die in Pakistan is very similar to how people used to die here in the United States and other developed countries, before we had so many advanced technologies available. Death was very instantaneous. It was very mysterious. People didn’t know what people passed away from. And most people passed away at home.
“We’ve moved death from our communities and homes to hospitals and nursing homes.”
As an example, when my grandmother passed away, she was having a meal with family. She started having some pain in her chest. Her son, my uncle, carried her in his arms to the hospital. And she died very quickly, within minutes. The most interesting thing about that tragedy was that that was the first time she’d ever been in a hospital. And that is not something that’s unique to her. So, having seen that, I had this different perspective.
Knowledge@Wharton: I’d like to hear your perspective on how culture influences all of this.
Warraich: Death, as a human experience, is very high yield and very high density, as far as cultural trappings are concerned. Even if you look at the origin of spirituality, the origin of religion, it’s always centered around death, and represented by burials, and other practices that have happened around that.
… We’ve moved death from our communities and homes to hospitals and nursing homes — four out of five Americans these days die in either a hospital or a nursing home. In this past century, we’ve had this big change — we had people dying at home, and now most of them die in the hospital. And many times, it’s the right thing to do. Because you want patients to be getting medical care when they’re close to death.
But all the culture and all the customs and rituals that existed around death in the community were not transferred. Even though the act of death was transferred, everything else surrounding it — the connection with the community, the customs that take place — was left behind. Which is why, I think, so many people feel so isolated at the end of life.
Knowledge@Wharton: To a degree, part of this is that people want to see their family members live longer, which is why they may be in a nursing home, or some facility like that. But part of it is also the fact that so many more people these days have to deal with sick family members, and having them in these facilities does take some of the burden off of the caregivers from that younger generation.
Warraich: Of course. And that younger person now, the caregiver, is actually not that young anymore. The average age of the caregiver is now in the 50s. The people taking care of elderly parents themselves are not young and strapping. They have their own medical problems. And there’s a lot of research that shows that being a caregiver for a patient actually increases your risk for having bad health outcomes. It’s a lot of work.
“Coming from Pakistan to the United States, as far as the end of life is concerned, was like stepping into a time machine.”
What’s happened, also, is that because of falling birth rates, the number of people who can help out has also gone down. And now, most people work, both women and men. What that’s led to is this epidemic of caregiver burden across our society. And caregiving is now becoming something that’s as ubiquitous as being a parent.
Knowledge@Wharton: You also talk about the fact that there’s a debate over what qualifies as dead. There is brain dead. And it’s a question that, in many minds, ends up being the tipping point as to whether or not to actually stop prolonging a person’s life.
Warraich: You know, that’s one of the things that has occurred over the past few decades. I feel like many people would think that, given that we have all this new knowledge, we would be able to be very, very clear and make very clear distinctions between who is alive, and who is dead. But what’s happened is that now we have all these life support apparatuses that can support one, or a couple of organs at a time. We can do dialysis for kidneys, we have breathing machines for lungs, VADs (ventricular assist devices), which are pumps for the heart. But we really don’t have anything like that for the brain.
Which is why, when patients are critically ill, sometimes they can have support apparatuses keeping them breathing, keeping their hearts beating. But their brain may not actually be functioning. It’s one of those cases where, the more you know, the more you realize that things may not be as clear-cut as we would have previously imagined. Having said that, I want to make sure that listeners know that as far as brain death is concerned, the criteria for brain death are very consistent. They’re very good. And there has never been a documented case in which someone who was brain dead had some kind of reversal or meaningful recovery. Especially when that diagnosis is made in a formal way.
But having said that, I think more people need to be involved in this very basic and human discussion about, what is, in fact, life? Is life just the fact that our organs are beating, or our cells are dividing? Or is death the loss of personhood that occurs in so many disease states? I think that’s a discussion not for just physicians, but for society as a whole.
Knowledge@Wharton: It does feel like the process of the decision is much harder these days.
Warraich: Oh, it’s definitely much harder. Again, it’s one of those things where the more you know, the more you realize things are complicated. Even as far as brain death is concerned — most patients do not have the amount of brain damage to reach the criteria for brain death. Most patients, in fact, have extensive damage, to the extent that they can be classified as patients in vegetative comas. So even though they do not meet the criteria for brain death, they are not well enough to have any type of reasonable brain function.
“Is life just the fact that our organs are beating, or our cells are dividing? Or is death the loss of personhood?”
That’s one of the reasons why I wrote the book. Because I realize that modern death is very complicated as a topic. But the more we shield it from everyday people, the more we make it a much harder terrain to navigate, which makes these situations so much more difficult. That’s perhaps the main reason. And the main hope I have for this book is that people will read it, and when they enter those rooms or they enter those situations in which they have to make these decisions, they feel armed with information. It won’t make the situation any better. But knowing what’s going on may at least help them come to a decision that they feel is something that they have thought out well enough.
Knowledge@Wharton: It makes me wonder whether or not people actually want to know this. You go along for so much of your life, and you don’t think about death.
Warraich: Sure. If you look at many cultures, especially many Southeast Asian cultures, or even my culture back in Pakistan, most people would not want to know. Most people would rather not know. Even if they have a terminal diagnosis, they would tell the doctor, “Don’t tell me. Just tell my family.” And the families will say, “Don’t tell the patient.”
But what’s happening now, especially in the United States and other developed countries, is that people do want to know. And one way to see that is by looking at the success of people such as Atul Gawande, who have written about this before. And the popularity of other books related to this. People want to be armed with information. People don’t want to just defer to their physicians. They want to work with their physicians. They want to consult with their physicians. They appreciate their input, but they don’t want to be blindsided because these things have very, very real consequences for their daily lives.
So many people now are taking care of elderly parents, who could fall sick at any given moment. And when that happens, the burden of decision-making falls right on you out of nowhere.
Knowledge@Wharton: You also bring up the impact of social media. It’s a common thing now that if a friend or family member has passed away, you post something on Facebook or Instagram, or whatever it may be. And I would guess, to a degree, it helps the grieving process, because it includes more people in the understanding of what you’re going through.
Warraich: One of the features of modern death is that it’s a very, very isolating process. People are not at home — they’re in hospitals. As we get older, we lose many of our friends and family. What social media does for those who use it, especially close to the end of life, is that it gives them an outlet to just express what they feel like, because sometimes, even in a hospital, even though you’re surrounded by nursing staff and physicians, you can feel very alone.
Also, it helps people connect with loved ones, or those who have had a similar experience, who may not be able to visit, who may be far away. I think it’s one of the things that’s understudied, but I think in some ways, that connection can do more for improving a patient’s state of mind than any amount of medications or drugs or procedures that we can throw at them. So I do think that’s something we need to focus on, and physicians need to focus on — to provide patients outlets so that they can express themselves, and hopefully add to their experience.
“Being a caregiver for a patient actually increases your risk for having bad health outcomes.”
Knowledge@Wharton: What do you think the next pieces to this puzzle are that will help make this an easier process to deal with?
Warraich: The biggest barrier — why this is such a huge issue — is that the fear of death is so prevalent in our society. And in some ways, it’s also the fact that death is so much more mysterious. We don’t understand it. We don’t see it because it doesn’t happen in our communities [but at the hospital or nursing homes]. And because the way death is depicted on TV or in pop culture is so not realistic, people I think fear death more today than they have at any other point.
Not only do they fear death, they also fear what it takes to die. Because it involves so many different procedures, surgeries, etc., that they are very, very fearful of. I think that’s the thing that we need to conquer. And I hope that one of the things that this book is able to do is just get people talking about death in a way that doesn’t send a chill down their spine.