Author of Dying in the Twenty-First Century: Toward a New Ethical Framework for the Art of Dying Well
Benjamin Franklin once said that the only things certain in this world are death and taxes. One could argue, however, that we live as though taxes are a given and death is an option. Why is this? Why is it that something like taxes, a human construct, are an unquestioned certainty, while unavoidable death is not?
Despite death’s inevitability, it is entirely human to possess a strong desire to live. This has enabled human beings to accomplish fantastic feats and beat insurmountable odds. Modern medicine is certainly among one of the greatest of these accomplishments. Diseases that were once catalysts for major epidemics have been forgotten. Even cancer has been somewhat tamed through the development of treatments and preventative measures for many of its forms. While developments such as these are noteworthy, they have also enabled us to push death further and further from our collective consciousness. Before many of the achievements of modern medicine, the care of the sick and dying was the domain of the clergy, family members, and friends. Dying was truly a community affair.
In her new book entitled “Dying in the Twenty-First Century: Toward a New Ethical Framework for the Art of Dying Well”, Dr. Lydia Dugdale, an internal medicine doctor and assistant professor of medicine at the Yale School of Medicine, starts from the premise that our determination to live longer and healthier has meant that we have also forgotten how to die. With more people dying in hospitals, often in the intensive care unit, death has become hidden from view. In the opening pages of her book Dr. Dugdale recounts how the outbreak of the Bubonic Plague in fourteenth-century Europe precipitated the creation of the Ars Moriendi, known as the Art of Dying, a body of literature on the preparation for death. In response to a devastating loss of life from the Plague, the church recognized that there were not enough clergy members to attend to every dying person and therefore created a handbook that would enable lay persons to assist in the art of dying. While the Catholic Church was responsible for the first edition of the Ars Moriendi, various Protestant and other denominations, subsequently tailored this guide to fit their own needs. The Ars Moriendi tradition of helping one’s community members to die well continued for several hundred years. However, subsequent events, including the American Civil War, scientific advance, and the increasing proliferation of hospitals with their intensive care units, ushered in a new way of approaching death. Over the years more and more people have died in hospitals removed from family and friends and from society’s view. In an edited volume that includes contributions from other noted physicians and scholars such as Farr Curlin, MD., Daniel P. Sulmasy, MD., Lisa Sowle Cahill, PhD., John Lantos, MD and others, Dr. Dugdale takes the reader through the evolution and subsequent devolution of the Ars Moriendi and suggests ways in which we as a society can move toward creating a modern Ars Moriendi, one that acknowledges the plurality of present-day culture without neglecting our common mortality.
“Dr. Lydia Dugdale, Assistant Professor of Medicine, Yale University”
In the following interview Dr. Dugdale discusses the path that led her to the field of medicine as well as her increasing interest in the development of a new Ars Moriendi. In recognition of our solidarity with one another, death requires that we do all we can to help one another not only live well, but also help one another in the art of dying well.
Why did you want to become a physician?
I have always been affected by the suffering of others, but I never intended to become a doctor. I spent my undergraduate years exploring how I could most effectively reduce poverty, and it was after many months as a volunteer in developing countries – often in health care settings – that the idea of studying medicine seemed to gain traction. Medicine is a practical way to engage with the lives of those around me. And as I’ve practiced, it has become more evident that what I had always thought was an intrinsic drive to relieve poverty was really a drive to address suffering more broadly.
Many physicians over the years have used the language of “calling” to describe how they ended up in practice; I too could say that I am “called” to medicine. I would have never chosen it for myself, but a number of circumstances and influential conversations redirected me toward medicine. In retrospect, I see how well the combination of patient care and scholarly reflection seems to “fit.”
What first drew you to exploring the nature in which we view death? When did you come to realize that this was a very necessary avenue to pursue, that we need to re-conceptualize how we think about death?
Some of the most intense suffering that I witnessed as a medical trainee was not among the poor in developing countries but in our own academic teaching hospitals here in the US. It struck me then (and still strikes me now) that patients did not know what they were in for. They thought they wanted to live, but they didn’t know that maintaining life indefinitely through life support technologies often meant significant suffering, a worse quality of life, and marked distress on the part of their families. Prolonging life in an intensive care unit also didn’t necessarily mean that they would leave the hospital in an improved condition; it often meant simply delaying death one day at a time. Many, many patients, their families, and health care professionals have been scarred by such experiences. I was one of those clinicians deeply affected by technology-induced suffering, and it prompted thoughts about how we might improve the dying process.
In 2010, the bioethics journal the Hastings Center Report put out a call for papers asking what pressing issue faces the future of bioethics. I had just been reading about the Ars moriendi (Latin: “art of dying”) literature that was popular for more than 500 years, first in Europe and later in the US. The central claim of this art of dying is that you die the way you live. In order to die well, you have to live well, and this requires a lifetime of thoughtful preparation for and anticipation of death. The original Ars moriendi texts grew out of (what was to become) the Roman Catholic Church, and they painted a picture of the community accompanying the dying person from the sickbed to the grave. I submitted an essay arguing for the need for bioethics to facilitate the revitalization of an Ars moriendi today. A week after the essay went to print, I was contacted by an academic press and asked to put together a book proposal to explore this idea further.
Do you think that it is possible in our modern world in which religious pluralism is the norm and a clear separation of church and state taken for granted, that bioethics and medicine would be willing to look to religious traditions for the language in which to deal not only with complicated ethical issues, but those that specifically deal with our mortality?
Ethics and medicine both grew – at least in part – out of religious traditions. It would be negligent, even unethical, for bioethicists and medical professionals to ignore this fact. Furthermore, studies suggest that more than half of physicians and patients claim some degree of religious or spiritual adherence. How then can anyone talk about mortality in a meaningful way if we pretend that this is not true? I am not suggesting that clinicians can or should become experts on world religions or spiritual practices, or that our academic teaching hospitals can provide expert religious care for every permutation of their patients’ religious convictions; but they should at the very least inquire about this part of a patient’s social history and permit the incorporation of such beliefs, practices, and communities into practices of care. A patient is a particular person with a particular set of beliefs; ethical care of the patient requires that we make space for such particularity, and comprehensive care of the patient requires that we attend to spiritual well-being as well as physical.
I recently learned of a hospital in the southern US, where the administration recognized that they were failing to meet the spiritual needs of the many racial and ethnic minorities in their city. The hospital also lacked the resources to hire enough chaplains or social workers to address such unique needs. Their solution was innovative. The chaplaincy office created an unofficial Clinical Pastoral Education (CPE) training program for local clergy, which granted local religious authorities official access to the hospital to serve their congregants. This unofficial CPE did not require local religious leaders to meet the rigorous standards of paid hospital chaplains, but it did enable the hospital to meet the needs of particular patients in a meaningful way at almost no cost. And from what I have heard, the patients have been glad to know that their own clergy can visit them in the hospital.
In the discussion of the AIDS epidemic in chapter 10, the importance of being present with patients really came through. When medical science could not offer any support in the early years of the crisis, physicians were forced in a way to confront their limits and realize that perhaps the greatest service they could give their patients was just being with them, sharing in their suffering. Is this ministry of presence possible in today’s healthcare system?
That’s a difficult question. And I’m sure the answer depends on which member of the medical team you ask. I think most clinicians feel pressed for time, which is due partly to the volume of patients we are expected to see. This is true for doctors certainly, but I also hear nurses talk of the problems associated with being short-staffed. Fewer nurses means more patients per nurse which translates into less time with any particular patient. Even hospital chaplains who don’t typically bill for their “services” are under pressure to meet quotas.
My sense is that nursing still holds pride of place in what you call a “ministry of presence.” When I’ve spoken to multidisciplinary audiences about a modern art of dying, nurses almost always criticize me for saying that the doctor is the one at the deathbed; they contend that it’s the nurse who sits with the dying patient. They are probably right, but I’m not sure that anyone does much sitting with anyone anymore in medical practice, with the exception, perhaps, of medical teams at inpatient hospice.
Having said this, I have had some very profound experiences with patients who schedule an office visit – sometimes under the guise of a common cold – to talk about their marriages, their finances, their teenage child’s rebellion, or existential concerns. I can quickly determine whether the physical complaint requires further attention, and then I turn to the bigger questions. I find such office visits to be some of my most rewarding, and I think on some level this is a ministry of presence.
In your conclusion you question whether changing our way of viewing illness and death as events that must be avoided at all costs to events that are inevitable, as a potential step towards developing a modern Ars Moriendi. What are some of the challenges you see to this conceptual shift?
The momentum in medicine is toward doing more, not less. And this momentum carries over into our scheduling, our ordering of labs and procedures, our billing, and even our ethics. Let me illustrate with a pertinent case. I was recently attending on the inpatient medical wards. A frail, elderly gentleman with advanced dementia and a bad heart came in from his nursing home because he had passed out. We quickly learned from the electronic medical record that this was not a unique occurrence. He had, in fact, come into the hospital several times in the last year for the same thing. He had also been thoroughly evaluated by his heart doctors who felt that the problem was his heart; but owing to his advanced age and late-stage dementia, implanting a pacemaker would likely cause more harm than good. Could they do it? Of course! But the question in the minds of the cardiologists was this: to what end do we implant a pacemaker? The patient already suffered greatly, and his death was imminent. A pacemaker might keep his heart going but it wouldn’t solve any of the other problems that were ushering him closer and closer to the grave. The medical residents on my team, however, seemed almost incapable of conceiving of death as inevitable; if there was something that could be done to delay death, why not do it? And they are not unique in thinking this way.
Another challenge to a conceptual shift in thinking about death is the fragmentation of community. The art of dying I described above was practiced within the context of communities that remained relatively intact over the course of a lifetime. But modern life isn’t this way. In the US, at least, it is fairly safe to say that we lack societal consensus about the meaning of life and death, that we lack a common existential narrative. And we don’t do a great job of fostering dialogue about these subjects either. So we are left with patients and clinicians – like the medical residents on my team – who fill this void with life-prolonging technology rather than complicated and time-consuming conversations about meaning and death. My hope is that this book will stimulate intentional conversation within communities about their common narrative and the preparation for death.
Death is not something that any one of us is going to escape; it is inevitable. The original Ars Moriendi was developed to facilitate the communal preparation for death. In our efforts to eradicate disease and prolong our earthly lives we have put off coming to terms with the fact that our time here on earth is finite. If we are to usher in a new era of the Ars Moriendi it will require that we recognize our limitations, acknowledge that the prolonging of life does not necessarily enhance the quality of life, and draw upon the richness of the various religious traditions that have previously, and still can, offer us guidance in the arts of both living and dying well.
By: Rebecca Quiñones, MTS