On Life & Living
A Tribute to My Grandmother and the Pioneering Women of Hospice Care
This week’s City of Yes is a departure from my usual urbanist beat, but I hope you enjoy it nonetheless.
My grandmother, Dianne Puzycki, died on November 3rd at the age of 89. It would be typical, of a woman born in 1934, for the highlight reel of her life to focus on her five boys, her dozen grandchildren, her numerous great grandchildren. No doubt she relished her role as a mother and grandmother. But we were in awe of Nana because, atypical of a woman of her era, the defining through-line of her life was her 45-year career as a hospice nurse, one of the first in the United States and, at the time of her retirement in 2018, the longest serving.
It was an extraordinary career that spanned the birth of hospice in America, a half-century of progress in palliative care, and the mainstreaming of patient-centered medicine.
In a 2017 profile in the American Journal of Nursing, my grandmother reflected on the first stage of her career, before she and my grandfather had children. In 1955, she worked at what is now the Memorial Sloan Kettering Cancer Center in New York, of which she said, “At that time, we didn’t talk about death and dying. We weren’t allowed to talk about that.” The experience of working with cancer patients, and the lack of humanity often exhibited toward them, “really haunted me for years.”
After spending the 1960s raising her five boys, my grandmother was ready to return to work in the early 1970s and soon discovered the writings of Swiss-American psychiatrist Dr. Elisabeth Kübler-Ross. Kübler-Ross is most famous for introducing, in her bestselling 1969 book On Death & Dying, the concept of the five stages of grief: denial, anger, bargaining, depression and acceptance. My grandmother attended lectures given by Kübler-Ross and Cicely Saunders, an English physician who started the world’s first modern hospice, St. Christopher's in the United Kingdom, and then introduced the concept to the United States. In 1973, over dinner with Kübler-Ross and Florence Wald, the Dean of the Yale School of Nursing, my grandmother got involved with an initiative to start the first hospice in America.
That dinner would kick off what would become a global movement.
By 2020, there would be more than 5,000 hospices in America serving more than 1.5 million patients annually, according to the National Hospice and Palliative Care Organization. Today, more than 50% of all terminally ill Medicare patients use some form of hospice care. And there are now at least 138 countries with some form of palliative care.
What was revolutionary in 1973 has today become routine.
Following my grandmother’s death, I realized that while I knew much about her subsequent career, I knew very little about what things were like in the pre-hospice era. I wanted to understand how far we have come in the treatment of the dying and to better appreciate what all these enterprising women accomplished.
So I read Kübler-Ross’s On Death & Dying.
In the foreword to the Anniversary Edition of On Death & Dying, Dr. Ira Byock describes the world that existed before the book’s publication. It’s worth quoting at length:
In the post-World War II era, as with every other aspect of social life, optimism and defiance pervaded America’s orientation to illness. Having endured the Great Depression, two world wars, and the Korean War, invincibility and perseverance were parts of the can-do American persona. A hopeful attitude in the face of adversity seemed intrinsically virtuous, part of the American way.
And there were good reasons to be optimistic. Startling breakthroughs in physics, chemistry, engineering, and—to most people most important—medicine were occurring almost daily. Cures for hitherto lethal conditions such as pneumonia, sepsis, kidney failure, and severe trauma had become commonplace. Disease was increasingly seen as a problem to be solved. The sense was that medical science might soon be able to arrest aging and (subconsciously at least) possibly conquer death itself.
In this culture, the best doctors were the ones who could always find another treatment to forestall death. In the 1950s and 1960s doctors rarely admitted when treatments weren’t working and commonly failed to tell patients when further treatments would do more harm than good. Physician culture epitomized the never-say-die stance, but doctors were not the only ones to maintain this pretense: sick people and their families all too readily colluded to avoid talking about dying.
A “highly authoritarian” culture pervaded medicine in this era, and it was this “authoritarian decorum and puritanism” that Kübler-Ross challenged in her book.
Kübler-Ross approaches her subject matter—and her subjects—with profound humanity. She observes that people have always associated death with grief, shame, guilt, anger, and rage, and yet, the “more we are making advancements in science, the more we seem to fear and deny the reality of death.” She identifies that “dying is feared because of the accompanying sense of hopelessness, helplessness, and isolation.”
So she fearlessly set out to change that.
On Death & Dying is an exploration of the process of dying. Through a series of often-poignant portraits of seriously and terminally ill patients recounting, in their own words, the experience of living with and dying from their illnesses, the reader witnesses each patient at a stage in their journey through grief. What comes through again and again in each story is the desperate desire of the patients to connect with their doctors, their nurses, their families—to remind them that they are not merely a problem to be solved but are still alive and need them more than ever. More than medication, the patients yearn for hope, help, and companionship, for recognition of their personal dignity and humanity. As a dying patient puts it, “You still want to be a person.” Kübler-Ross’s achievement was to recenter the dying patient in medicine.
Within Kübler-Ross’s observations is the premise that it is not the length but the quality of life that matters, observing that “[physicians] learn to prolong life but get little training or discussion in the definition of ‘life.’” As she writes, “If we could teach our [medical] students the value of science and technology simultaneously with the art and science of inter-human relationships, of human and total patient-care, it would be real progress.” Helping patients—and their doctors and families—come to terms with the reality that they have reached the limits of medical technology can make the end of life “more human.”
Kübler-Ross’s work had a profound effect on humanizing medicine and changing how American society responded to the dying. As Dr. Byock explains:
Suddenly, how people died mattered. No longer were dying patients relegated to hospital rooms at the far end of the hall. On Death & Dying is rightly credited with giving rise to the hospice movement—and, by extension, the new specialty of hospice and palliative medicine—but the changes it set in place have pervaded nearly every specialty of medicine and nursing practice. For instance, by the late 1990s pain would become a “fifth vital sign” to be assessed in hospitals every time a patient’s temperature, pulse, blood pressure, and respirations were measured.
On Death & Dying also had profound impact on human research. No longer could experiences of “the dying” be objectified, nor could the study of dying be relegated to component histological, biochemical, physiological, or psychological pathologies. Instead, Elisabeth Kübler-Ross’s groundbreaking work opened up entirely new fields of inquiry into the care and subjective experiences of seriously ill people. The resulting interest in and validity of both quantitative and qualitative research on dying and end-of-life care accelerated advances within psychology and psychiatry, geriatrics, palliative medicine, clinical ethics, and anthropology.
My grandmother lived to celebrate the 50th anniversary of the founding of Connecticut Hospice this past September. It was, in retrospect, the capstone of what was a vibrant and full life. She, who had spent her career helping to alleviate the suffering of others, was spared such suffering when her own time came only two months later. Nana died on the operating table while undergoing a routine stent procedure. While I am grateful my grandmother did not suffer, the abruptness of the end of her life came as a shock to me and my family. We are each, in our own ways, experiencing some version of Kübler-Ross’s five stages of grief.
My grandmother said that sometimes the best medicine is simply “just being there.” As the Connecticut Nurses Honor Guard recited in their moving Nightingale Tribute at my grandmother’s wake, Dianne Puzycki was always there. It is impossible, right now, to imagine a world without her. In time I will come to accept that, like Elizabeth Kübler-Ross, Cicely Saunders, and Florence Wald—the pioneers of hospice who died before her—Nana’s shift is now over.