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    The Art of Dying

    Fighting for life, preparing for death

    By Lydia S. Dugdale

    May 8, 2020

    Available languages: Español


    In late April, Plough’s Susannah Black spoke with Dr. Lydia S. Dugdale, a medical ethicist and physician at Columbia’s NewYork-Presbyterian Hospital. The conversation gives vivid insight into the challenges involved in working through the pandemic in one of the hardest-hit cities in the world.

    Plough: Can you describe your work? How has what you do changed over the last couple of weeks?

    Dugdale: My non-pandemic clinical life is as a primary care doctor. I also direct the Center for Clinical Medical Ethics at Columbia University, which focuses on the doctor-patient relationship and ethical issues in the care of patients. I’ve been … well, I’ve been busy in the last few weeks.

    Early on, I mostly saw patients in an extension of the ER who were concerned they might have coronavirus but who were less sick. Then word got out that if you were sick but breathing okay, yes, you might have coronavirus, but you should probably just stay home. So the only people coming to the hospital were really ill. I found myself in the ER, taking care of the many, many patients being admitted.

    Can you talk about the ethical challenges that doctors have faced?

    There’s been a push by hospitals in anticipation of potential shortages to come up with policies guiding allocation of ventilators or other scarce resources. We’ve had rigorous discussions, scoured literature, spoken with other institutions. Fortunately the situation has never, so far, been quite that dire in New York; we prepared for something that didn’t happen as severely as it might have. That’s what you hope for, when you make those kinds of preparations.

    It’s been a time of intense deliberation. A hospital in New York City made the news because it was curtailing emergency-room CPR for patients with coronavirus, even if those patients didn’t have a pre-existing do-not-resuscitate order (DNR). Other hospitals, formally or informally, have been considering the same practice.

    The rationale is that, first of all, the numbers of people involved in a resuscitative attempt are huge. It’s an all-hands-on-deck situation. And everybody’s using enormous amounts of personal protective equipment (PPE). Also, the act of resuscitation itself causes the virus to spread through the air, which increases infection risk to the staff. As everyone knows, we already have shortages of personnel and equipment. And even in best-case scenarios, resuscitation is a risky proposition. Everyone who is successfully resuscitated must be put on a ventilator, and the act of inserting a breathing tube can lead to further virus spread. By some estimates, less than a fifth of those who receive CPR leave the hospital alive. Some argued, why would we resuscitate people for whom there’s no long-term benefit, at risk to ourselves, and using equipment that we don’t have?

    The problem with making a blanket DNR policy for patients with coronavirus is that just because a patient has the virus doesn’t mean that we’re not able to resuscitate that patient. If a relatively young and healthy patient came in with a heart attack, we’d be able to get that heart going again quite easily. Say that patient also has coronavirus. With a blanket policy, that patient dies.

    This isn’t hypothetical: I’ve heard of other hospitals in other states that have across-the-board DNR policies for coronavirus. That decision shouldn’t be made simply on the grounds that a patient has the virus.

    How did you think through the issues surrounding ventilator allocation?

    New York law really aims to protect patients. The Family Health Care Decision Act of 2010 says that if patients or families want resuscitative measures, doctors cannot refuse them, even if the doctors think they will be of little or no benefit. However, we’ve also had guidelines in place since 2015 regarding the allocation of ventilators: they’re not cheap machines, around $25,000 each, and so you don’t want to necessarily be stockpiling them. It’s just one instance of the question of how to allocate resources in general.

    Hospitals have been using those 2015 guidelines to help them think through the questions involved in allocating ventilators. Should age play a factor? Should degree of sickness play a factor? If an adult and a child both need a ventilator, do we give preference to children? Should it be first come, first served? These are the sorts of questions that people have wrestled with.

    Can you talk about a conclusion that you know of a hospital coming to that you disagree with, and tell us why?

    The 2015 guidelines articulate a set of exclusion criteria, which means that if a patient came to the hospital with any of these things, he or she would not get a ventilator during a shortage. These criteria are pretty extreme: for example, a large bleed in the brain that is going to cause death, or a patient with truly widespread cancer. These are people who are dying despite anything we might be able to do. This is where death is truly imminent. Those are appropriate policies.

    But other states have considered less stringent criteria. At one point Alabama had had a set of guidelines which made “mental retardation” – that was the language they used – an exclusion criterion. Alabama has since disavowed those guidelines, but the fact that a state would consider one’s cognitive ability at all a criteria for not receiving ventilation is highly troubling. This is not imminent death, this is making a judgment that this is a life not worth living. And that’s just wrong.

    Blanket age-discrimination, likewise, is wrong. People in their forties sometimes have advanced cancer that they are dying of. Should we say that such a patient should have a mechanical ventilator rather than a healthy seventy-year-old? These strict age cutoffs are not helpful.

    In medical circles, with all of these questions of resource allocation, the driving force behind them is: How do we save the most lives possible?

    In medical circles, with all of these questions of resource allocation, the driving force behind them is: How do we save the most lives possible? It is truly a “pro-life” motivation.

    People often ask me, isn’t that a utilitarian calculus? How can you do any kind of triage? But if these decisions are made well – and they aren’t always – “quality of life” is not the metric; we are not here to judge whose life is worthy to be continued. We are not here to play God. Again, our aim is to save as many people as possible. In some cases, it is clear that people are so sick they will die no matter what we do.

    So if our hands are tied and we can only help so many people, what do we do? We don’t abandon everyone else to the curb, but how do we prioritize? Here’s how: We actually know with pretty substantial clarity who’s not going to survive this virus. We’re doctors, and we want people to live, and if the forty-year-old is going to die without a ventilator but might get well with one, and the ninety-year-old is with 98 percent certainty going to die even with a ventilator, then do we give our remaining ventilator to the person who is substantially more likely to survive with it? Yes, but not because the ninety-year-old’s life is less worthwhile. I should also note that in the case where two people are likely to benefit from ventilation and only one machine remains, many hospitals have considered applying a first come, first served approach. I want to state again that all of these deliberations have been theoretical; thankfully we have not had to make such decisions.

    I had been thinking about whether the concept of triage is inherently something that belongs to utilitarianism. Hearing you talk about it, I don’t think that it does. I think it belongs to the fact of limitation in the world. You can make a virtue ethicist case for triage as well.

    That’s right. It’s simply the principle of beneficence, of doing good. Benevolence, good will, would be the corresponding virtue. It’s wanting to do good, wanting to save lives. No one is having these discussions because they’re trying to get rid of old or sick people. They’re doing it because they want to see people live and do well and so we ask, how can we help the most people? Fortunately we haven’t had to make those calls, in New York City, this time around, and we’re so grateful.

    What’s been most difficult for you in the last couple of weeks?

    What’s struck many of us is how impersonal patient care has felt, and that’s been very hard for us doctors and nurses. The core of how we’re socialized is to care for the patient in front of us, prioritize his or her good. And in a pandemic that focus gets shifted, and you have to think in terms of populations. Even if it’s just the population of our hospital, suddenly we have to think about not just this one person in front of us but everyone else waiting in the ER.

    It’s knowing patients as people, meeting their families, understanding them as human beings with passions and dreams and communities and histories that brings the practice of medicine to life.

    On top of that, we haven’t been able to talk to our patients, partly because they’re so ill, and partly because we’ve been using remote monitoring to limit our own exposure to the virus. And that’s taken this most sacred practice of caring for the sick and transformed it into an impersonal monitoring of screens. That’s probably been the hardest thing for many of us. It’s knowing patients as people, meeting their families, understanding them as human beings with passions and dreams and communities and histories that brings the practice of medicine to life.

    One of the major tenets of contemporary medical ethics is respect for autonomy. The circumstances of an epidemic make it seem as though a more paternalistic attitude among doctors might be called for; that autonomy is not really a particularly good source of “ought,” or at least not a definitive one, because your autonomous choice will endanger others. Do you have any thoughts about that?

    You’re absolutely right. Autonomy is usually paramount in contemporary medical ethics, but all of that is set aside during a pandemic. I mean, there’s certainly overlap. Other key aspects of medical ethics – doing no harm, doing good – aren’t set aside. It’s not that we want to trample on individual wishes or rights, but those have to be held in tension with concern for the common good. That’s where you run into these difficult questions. Other issues central to public health ethics come vividly alive in these times: the duty to plan, the duty to warn, the duty to prepare. There’s definitely a shift.

    It seems that in a pandemic, we can see ethical realities that may be disguised in other times. So for example, imagine someone exercising his autonomy when he’s diagnosed with heart trouble, saying, well, I’ll keep eating bacon. But that’s not a responsible thing to say. Even if you did have the right to neglect your health, which is not necessarily true, your illness will have an impact on other people: on your family who care about you, who aren’t going to leave you to die. And you can’t get around it by saying, ‘I choose to take this risk; if I get sick, you’re absolved from taking care of me,’ because that denies the reality, the force, of love – and the imperative of what you were calling the virtue of benevolence. It’s not going to be the case that those who love you will neglect you or leave you to your own choices; that’s simply not how we work. This would apply to a physician as well, unless you’re going down a brutal path of physician-assisted suicide in which the patient is demanding that the physician abandon that core commitment to preserve life.

    Yes. And that same commitment on the part of leaders, to physically protect their people, is behind decisions about social distancing and banning large gatherings.

    But it’s not a case of the more restrictions the better. There are some countries where at this point you’re not really allowed to go outside. And in the long run, with a policy like that, you’re going to do more harm to people – depression, poor health through lack of exercise. We have responsibility to do what we can, of course. But what are the limits? Can we decide that we need eighteen months of lockdown? At some point we will accept more risk.

    I’m under fifty, I’m healthy, and I’m not afraid to die. It does not bother me one bit to go into the craziness of the hospital. But that’s not true for everyone. And many hospital employees are staying home. I cannot fault people for being afraid. But whatever our judgments about the risk we’re willing to take, we do have to keep in mind the question of what will help those around us. We shouldn’t only think that way during a pandemic. It would be great to keep the common good in view during non-pandemic times as well.

    Another thing that’s staring us in the face right now is the inevitability of death. You’ve done a good deal of work thinking about this. Can you tell me about that?

    Since I’ve been in medicine, I’ve been struck by how many people die poorly. Whether it’s through highly medicalized dying, through a lack of community, through a lack of spiritual or even in some cases financial preparation for death – many, many people die poorly. I’ve had these conversations with my patients for years.

    Over a decade ago, I stumbled across the tradition of the ars moriendi, the art of dying. This was a body of literature that developed during the aftermath of the mid-fourteenth-century bubonic plague. Between one third and two thirds of the population of Europe died in a relatively short period of time. The priests were dying too. People were afraid that they would be damned because they had not attended to their souls; they did not know how to die well, to die without a priest to attend them; or at least, they were beset by anxiety about this.

    They looked to the church to help. In 1414, when the church met in the Council of Constance, one of the first orders of business was to attend to this concern of the laity. How do we help people prepare well for death? A priest at the council, Jean Gerson, the vice chancellor of the University of Paris at the time, had written a book that had a section on this. Gerson’s work provided the impetus for the publication of the first version of the ars moriendi in 1415.

    The art of living well included attending to the tasks of preparing well for death, and that it was important to do this within the context of community.

    Many others expanded on this. There were illustrated versions; after the Reformation, there were Protestant versions. By the 1800s, if you were well brought up, you knew that the art of living well included attending to the tasks of preparing well for death, and that it was important to do this within the context of community.

    I stumbled across this more than a decade ago and thought, wow, this is a really interesting model. It empowers patients to prepare well for death by putting a how-to booklet in their hands. And even though the original version was Catholic, it was subsequently adapted by other religious and even nonreligious groups. This sort of model might thus apply to our very diverse population today. I’ve written a popular press version of my academic work on this topic. We need a book that will help patients across a variety of backgrounds to anticipate and prepare well for death.

    I’m thinking about what it means to die well in a world where Christianity is true. It obviously seems wonderful that the church should put materials to prepare for death into the hands of the laity, but how is it possible to think about this across creeds or holding in abeyance the question of whether or not the resurrection is real?

    I wrote this book for my patients; my goal is to raise the questions and encourage people to wrestle with them. And if we don’t raise the questions, people might not even begin to think about them: Why am I here? What is this life for? Where am I going? What happens when I die? I’m a doctor, I’m not in the work of providing those answers. But I do know that my patients who have attended to these questions and struggled with them and found answers: they die much better.

    And if we don’t raise the questions, people might not even begin to think about them: Why am I here? What is this life for? Where am I going? What happens when I die?

    In my experience, it’s not just patients who avoid talking about death. A former medical colleague once told me, “I never tell my patients if they’re dying.” And I said, “How can you do that? That’s a part of our job! We have to give patients that information!”

    She said, “I do everything I can to avoid those conversations because I’m so afraid to die. I don’t know what I believe; I don’t feel like I’m equipped to talk to my patients about death.” When I talk to medical students, I tell them that this is the reason why they need to think about what they believe. As future doctors, I tell them, you have a responsibility to be comfortable enough in your own skin that you can talk to your patients about this.

    These questions are a part of our work. If doctors are afraid to talk about death, who’s going to do it? Pastors commonly talked about the preparation for death in their homilies until the early twentieth century. But that fell out of favor. And so apart from churches that have very intact liturgical traditions, it’s rare to get direction from the pulpit on the need to prepare for death. What I’m hopeful about is that this time of intense reckoning with death will get people to think about these ultimate questions, and that they’ll want to do something about it.

    Contributed By LydiaSDugdale Lydia S. Dugdale

    Lydia S. Dugdale is a physician and ethicist at Columbia University in New York City, where she also directs the Center for Clinical Medical Ethics.

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