Dr. Glen E. Miller is a retired physician and hospital administrator. Glen and his wife Marilyn lived in Calcutta, India, for seven years while Glen served as Director of the Mennonite Central Committee. Because of common concern for the poor, he was in regular contact with Mother Teresa and the Missionaries of Charity. In the fall of 2011, the Millers resided at the Collegeville Institute while Glen participated in the resident scholars program.
Glen recently authored a book about intentionally preparing for a “good death.” The book, Living Thoughtfully, Dying Well: A Doctor Explains How to Make Death a Natural Part of Life, was published by Herald Press (March 2014). (Read the book excerpt that was published on this blog last week.) Along with Jep Hostetler, former Collegeville Institute resident scholar (Fall 2012), Glen also runs the website www.livingjoyfullydyingwell.com. Janel Kragt Bakker asked Glen to discuss his motivation for the book, as well as key insights about what it means to die well.
This interview was first published in the Spring 2014 issue of Bearings, a semi-annual publication of the Collegeville Institute.
You have a personal history of heart attacks and cardiac arrests. How did these experiences inform or inspire your book?
The need to prepare for death took center stage for me personally after my cardiac arrest in September, 2010. With a medical history of two previous heart attacks, bypass surgery, and a pacemaker, I could no longer ignore my significantly reduced life expectancy. For my own sake, I set out to find information about preparing for death. In the process of collecting research and gathering stories, I realized that many other elderly people were not adequately prepared to die. The book became a “how-to guide” for preparing for death.
As a former doctor and medical administrator, what are the key things you learned that illuminate medical treatment of the elderly and of dying well?
When I started practicing medicine 55 years ago, essentially everything I could do for a patient came out of my doctor’s bag. Medical technology was almost nonexistent. It was only in my first year of medical school that CPR entered the scene, and when I first started practicing I was the only doctor in my community who had any experience with CPR. Since then all sorts of medical advances and medications have come along. Over the past generation we have seen the medicalization of not only our healthcare system but also our social interactions. We perceive a medical solution for almost any problem, and we place what I would consider to be an inordinate amount of trust in technology. Because of all this we tend to over-treat medical problems. We have such an array of treatments that we often don’t even consider not pursuing treatment. We have lost the balance between extending life with medical interventions and prioritizing the quality of a given life. We see tragic cases that highlight this imbalance, cases in which someone who is obviously dying is having his or her life extended amidst incredible amounts of pain and without any benefit to anyone. While advances in medicine are remarkable, they open a Pandora’s box of problems.
We now live in an era of managed and medicalized deaths. While approximately 80 percent of people say they want to die at home, the majority of them die in the hospital. And our obsession with long life makes us prone to extend the dying process. In crisis situations doctors are often directive, with the goal of preserving life. In the urgency and emotion of the moment, families are likely to go along with a doctor’s directives without considering previous conversations with the patient or the patient’s stated wishes. In the current medical environment we see a tendency to do anything possible to keep death at bay.
In this context, what does it mean to die well? What is a good death?
To understand what makes for a good death, it is useful to contrast a good death with a bad death. The worst death that I can imagine for myself is to be hospitalized in the Intensive Care Unit, sedated, tied to the bed, without access to family, and without any possibility of dying naturally. By contrast, I’ve seen a number of good deaths, especially among my family members. Those people I have known who died a good death died at home, surrounded by their friends and family, aware of what was happening around them.
While we cannot control our own deaths, dying well as an elderly person requires planning. Advance directives are very important. By allowing patients and their families to consider what to do in a crisis before the crisis is upon them, advance directives facilitate good decision making. Once medical decisions are made, especially near the time of death, patients and their families should agree to avoid second guessing such decisions. A good death is built around intentionality, not only with regard to medical decisions but also to relationships. People can die well by creating good memories with their loved ones before they die, and by prioritizing important relationships in their lives. For my brother, who died at home, the last weeks of his life were a virtual parade of people who came to see him. My brother expressed his gratitude to his loved ones for their contributions to his life, and they did likewise. He ended his life filled with thankfulness.
Why do so many elderly people and their families neglect the task of planning for death? What makes preparing to die so difficult?
We live in a death-denying culture. We don’t like to think about the impending deaths of our loved ones or of ourselves. Often, it isn’t until something tragic happens, such as a cancer diagnosis or a heart attack, that we confront the reality that life does have an end, and specifically that my life will have an end. Once mortality awareness has settled in, we can begin to have some meaningful conversations with our loved ones about end-of-life decisions. We can begin to see death as natural rather than as morbid or taboo.
For the family members of elderly people, another difficulty is that nobody wants to feel responsible for “not doing enough” or for “pulling the plug.” It is difficult for family members to commit themselves to honoring their loved one’s wishes, especially if that means not pursuing medical treatment.
You write that there are things worse than death. What do you mean?
After my cardiac arrest, I was disoriented and confused for two days. I could engage in conversation and so forth, but I had no short-term memory. I’d ask the same questions over and over. I wouldn’t want to go through something like that on a long-term basis. I would not want my life extended if I couldn’t relate to my surroundings and to other people. At that point, if my heart were to stop, I would not want to be resuscitated. If my breathing were to stop, I would not want to be put on a ventilator. If my kidneys malfunctioned, I would not want dialysis. If I were to become cognitively impaired, I have instructions in my advance directives to turn off my defibrillator. If my heart were to stop, it would not be restarted and I would die a natural death.
Let me be clear that with regard to my aversion to life-extending measures in instances of cognitive impairment, I am speaking specifically about people who are near the end of the lifespan. Not children, youth, or young adults. I recognize that incurable disease and cognitive impairment are qualitatively different in the prime of life than in advanced age, and that the loss of children or young adults is excruciatingly painful. While the deaths of elderly people still bring a sense of sorrow and loss to their loved ones, death is perhaps less of an enemy to elderly people. When I was visiting Saint John’s Abbey, an elderly monk said to me, “When the bus comes for you, get on the bus. You will know when the bus arrives.” He understood that when it is time to go and God calls, there is no need to delay.
What advice do you give to people making preparations for death?
I encourage people to complete advance directives, not in isolation but in collaboration with family members and others who might be making decisions for them. Families play a very important role in many cases; 80 percent of elderly patients are not able to make their own decisions in a time of medical crisis. In order to make informed choices during such times elderly people and their families need to educate themselves and plan ahead. For myself, I have written down my wishes for what should be done in particular circumstances. My advance directives list conditions in which to pursue treatment and conditions in which to withhold treatment. If I have a terminal illness or treatment would be too onerous, it shouldn’t be undertaken. Part of preparing for death is determining how to balance interventions and life-extending treatment with quality of life.
I also encourage people to think about their legacy and how they want to be remembered. Do you want to be remembered as a person who nagged, complained, and perceived yourself as a victim? Or do you want to be remembered as a loving parent, a welcoming neighbor, an affirming friend? Preparations for death should be emotional and spiritual as well as physical.
You encourage people to “lean forward” as death approaches. What do you mean?
Once a diagnosis has been made—once it is clear that life is coming to an end—there are several options. One is to feel like a victim and become bitter about approaching death. A second is to accept that death is looming and to use the remaining time intentionally, perhaps even making it the best time of life. When people are asked what they would have done differently in life, typical answers are that they wish they would have taken more risks, developed deeper relationships, more fully explored their creative side, and injected more joy and laughter into their lives. It isn’t too late to consider these priorities as death approaches.
Leaning forward also has a very practical dimension. For my wife and me, leaning forward as death approaches has meant giving family mementos and keepsakes to loved ones we know will treasure them. Preparing a will and getting financial records in order are other ways to lean forward into death. I’ve seen widows or widowers endure weeks of frustration because they didn’t know where records were kept or didn’t know passwords for electronic records. I don’t want to do that to my family. Leaning forward means making the most of the time that remains to one, and making life easier for loved ones who go on living.
Living Thoughtfully, Dying Well is written to appeal to a broad audience, but your book is also forthcoming about your own Christian faith and how it informs your approach to death. How do you see the role of faith at the end of life?
It makes sense to me that if there is another life after this life, that life will feature beauty, peacefulness, freedom from suffering and pain, and integration. Holding that view, if I am elderly and suffering I might find less of a need to seek every medical intervention possible and instead recognize that I am headed to a better place. I can forego some measures that might extend my life if I can foresee a better situation and am ready to make the transition to it.
Beyond beliefs about life after death, faith communities provide all sorts of support to people as they die—spiritual support, material support, touch, presence. Clergy and other people of faith can somehow represent the presence of God to the dying patient. They offer the sacraments. They can facilitate opportunities for reconciliation, confession, and forgiveness, helping people find peace with God and other people before they die.
How do you conceive of dying as a spiritual event?
Doctors can sometimes operate like mechanics fixing cars. They see isolated body parts, rather than whole people. When I was a patient, my doctors did a very good job of explaining my medical condition. But sometimes I wanted them to just look me in the eye and say, “And how are YOU doing?” I wanted them to recognize that I am more than my heart, lungs, and kidneys. When we conceive of death as a spiritual event, we can move beyond a mechanical frame of mind. When we conceive of death as a spiritual event, we can be receptive to the assurance of God’s unconditional love and provision for life after this life. When we conceive of death as a spiritual event, we can see death as a transition from this life to another—not an end, but a continuation. Unlike the medical model that views death as failure, death can become more like a graduation.