One doctor and medical ethicist argues that modern society has lost sight of the cultural, spiritual, and practical resources we need to face our mortality.By Cherie Henderson '14SPS |Winter 2020-21
Lydia Dugdale is the director of Center for Clinical Medical Ethics and the Dorothy L. and Daniel H. Silberberg Associate Professors of Medicine at Vagelos College of Physicians and Surgeons in Columbia. Her book The lost art of dying seeks wisdom in the Middle Ages on how to prepare for the end of life.
You said your passion is the ethical practice of medicine. How does this affect your daily work?
Ethics permeate everything I do. In the ethics center I teach, write, collect, research and advise on ethical issues in the hospital. I weigh very complex healthcare and research challenges and help stakeholders - including doctors, patients, and families - make the best decisions. The ethics discipline asks: What is good or right in this particular situation? Much can be at stake in its application in medical practice - life or death. My colleagues and I try to solve problems in a way that puts the patient's well-being in the foreground.
For example, our ethics team can be called to the bedside if a patient declines a life-saving intervention. Doctors want to know if it is okay to go beyond the patient's objection. Or we may be asked to counsel if a patient wishes to be discharged into an environment that is not optimal for healing. Or we are called when families insist on aggressive therapy for actively dying patients. Usually the cases are not easy, emotions run high and there are many nuances. Some can be easily resolved by clarifying what is legal. Others require a much longer study approach.
When I teach, I try to get medical students excited about the moral issues of medicine and to get them to reflect on its goals and philosophy. A friend of mine calls medical training a medical factory: It is soulless and you grind through. My strategy is to offer avenues that go beyond the formal curriculum and include philosophy, the humanities, and the arts. I want the students to have a more thoughtful and conscious approach to medicine. I suppose you could say I am a slow medicine advocate.
What do you mean by slow medicine?
The doctor and writer Victoria Sweet has a book about it. Just as slow food is healthier than fast food, slow medicine is healthier than fast food. Too often, patients find themselves on medical conveyor belts moving quickly and efficiently through treatments and procedures. When no one presses pause, the medical machine keeps moving and patients become passive recipients of procedures or medical techniques, including aggressive end-of-life interventions.
Your book The lost art of dying revolves around the question of how we could die better. What made you decide to write it?
I have looked after so many patients who have come to the end of their lives completely unprepared. They haven't thought about the many decisions they may have to make about end-of-life medical interventions. You are unfamiliar with the benefits and harms of things like CPR or mechanical ventilation. They haven't thought about what kind of memorial or funeral they want. They haven't invested in the relationships that matter most to them. And they haven't thought about the bigger questions of life and death. You suddenly ask: What do I think? How do I know my life? I speak in the book about the great writer Susan Sontag'93HON, who has thought deeply about so many things. Yet she never wanted to talk about death, even when she was actively dying. Her son was at her bedside, but he felt he couldn't even say goodbye because that would have to admit that she was dying.
As doctors, we can and should help people die better and wisely. We have an incredible set of resources to alleviate end-of-life suffering. There is almost no pain that we cannot treat, but there are fewer opportunities to ponder mortality and what it takes to die well. And even when patients ask us doctors to help them understand death, many doctors are unwilling to ask these questions.
The book is inspired by the The art of dying , a form of writing that originated in the 1400s to help people prepare for their own death.
And, The art of dying is Latin for the art of dying. The The art of dying refers to a literary genre that prompts us to think about the way we live and die. Its earliest iterations developed during the aftermath of the bubonic plague that decimated western Europe in the mid-13th century.
Historians estimate that up to two-thirds of Europe's population died during this plague, including priests and other spiritual authorities. With so many dead, there weren't enough religious leaders to care for the dying and bury the dead. While we are not sure who wrote the first version of these guides on how to die, it was likely someone associated with the Church. The books empowered lay people to prepare themselves for death without the need for a priest.
After the development of the printing press, illustrated versions of the The art of dying began to circulate to meet the needs of the illiterate and semi-educated. Over time, other religious and even non-religious groups took up the idea and developed their own versions. These manuals were widely used across the West for more than five hundred years.
What was the main topic of The art of dying ?
To die well you have to live well. That means recognizing your finitude and grappling with the related questions of meaning and purpose in the context of a community.
The earliest iterations of the The art of dying were particularly interested in five temptations that the dying face frequently: lack of faith, despair, impatience, pride, and greed. The lyrics offered comfort to any temptation: faith, hope, patience, humility and generosity. It is interesting to me that they did not indicate that people were tempted to fear death. In my opinion, our modern response to death is probably best described as fear.
The The art of dying has sometimes been described in theatrical terms. Every death is a drama. The dying person is the main actor, and the members of the community all play supporting roles. But at some point every supporting actor is going to play the lead role - the dying person - so they spend their lives as undergraduates for that role. The practices of The art of dying were rehearsed over and over again.
When updating the The art of dying What advice did you find for the 21st century that we can still apply today?
There is much. For one, make sure you maintain your relationships. People live and die much better when they are part of a meaningful community. Somebody told me I was a loner. I have some good friends, but I don't really have a community. But a few friends are fine. It doesn't have to be the medieval idea of community in which the whole village passes by the deathbed.
Someone once asked me, I know who I want to be with when I die, but I'm not ready to make up with them now. Why can't I just wait? My answer was that we don't know when we're going to die. And if we choose to be reconciled today while we are healthy, those relationships will be so much richer at the end of our lives.
We also have to acknowledge that we will eventually die. We can't wait until the last minute to think about what our life means and what we will believe when we die. In ancient times, a victorious Roman general had a servant whose only job was to whisper in his ear: Remember that you are only human! And in medieval Europe, Remember death - like strands of hair, skulls or hourglasses - served as visual reminders that death is inevitable.
We must live with the knowledge of our finitude that is ever present - not in a macabre way, but in a way that helps us appreciate our time and relationships and the good in life.
The The art of dying and the idea of lifelong preparation for death persisted during the Civil War and even into the 20th century. What happened?
During the First World War there was massive loss of life, immediately followed by the flu pandemic of 1918, which also decimated the population. After the pandemic, the last thing people wanted to think about was death. Everyone had suffered losses. Traditional mourning rituals and conscious attention The art of dying Practices lost their attractiveness.
And then, at least in the United States, we entered a time of enormous economic prosperity: the Roaring Twenties. The idea of living well has established itself as an end in itself. People didn't want to care about dying well.
How has the changing role of hospitals affected our relationship with death?
There were about two hundred hospitals nationwide in the late 19th century. That grew to more than 6,000 by 1920 and contributed to significant advances in medicine and science. In the 1950s and 1960s we tried artificial resuscitation and organ transplants, and in the 1960s and 1970s we offered combined chemotherapy to avert death. The hospital became the preferred location for the care of the sick and the dying. Hidden from view, death replaced sex as the ultimate inexpressible. The English anthropologist Geoffrey Gorer called this phenomenon death pornography.
We need to rethink dying in a hospital that is chaotic, expensive, and a place where both patients and doctors can be seduced into over-treatment. We have fantastic hospice facilities for those who want to focus on maximizing the quality of life - not the quantity - of life, but many people, especially outside of the urban centers, do not have access to them. Also, most patients say they want to die at home. The home hospice is an option, but it requires a lot of logistical support from the family and is therefore not for everyone. There is also an enormous toll from unpaid caregivers, who are often family members - usually women - who sacrifice their careers to care for the dying. This is fine, fine work, but it comes with a high and non-refundable cost.
How do we get over the denial of death?
It takes time. We need to face fear and sadness with those we love. Approaching the fear of death - slowly and deliberately - goes a long way toward mitigating denial.
Has the pandemic changed anything?
I was hoping it would make people aware of their need to face death, and I have noticed an increasing interest in the subject, but not as much as I imagined. And now, with the good news of an effective vaccine, people might be tempted to believe that they don't have to face their mortality. But the mortality is still 100 percent. We have to start the conversation and keep coming back to it. I compare it to talking to my growing daughter about birds and bees. The first time I tried to explain she was embarrassed and I was embarrassed. We laid out a bit, circled back, had a second talk, and it was a bit better. The third time it became more natural.
What is the role of getting these conversations going?
As a GP, I am required by Medicare to inquire about end-of-life treatment decisions during the annual health visit. But all doctors who have long-term relationships with chronically and progressively ill patients should have these conversations. And family members need to have these conversations with aging loved ones.
It's easy to start the conversation by discussing living wills. If your heart stops, would you want CPR? Would you like to be on a ventilator? There are pre-notification forms online and a program called Five Wishes that literally writes this conversation for you. And you move on from there: Have you thought about your apartment? Have you thought about your will? Have you thought about where to be buried when you want to be buried? Do you want a funeral? If so, which music or readings are important to you and why?
How can people make people more likely to die well?
Start now. How do you think about your finitude? How do you discuss this in the context of your family, your community? My goal is to get people to think and engage, and if we do that - even if we don't solve all of the questions - we will be much further along the path to being prepared for death. If we live consciously, gratefully and with attention to what is most important, our life becomes richer and our death becomes better.Read more from Cherie Henderson '14SPS
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