Dr. Jeff Spiess is a hospice physician whose focus is on the care of the terminally ill. He is convinced that if we honestly face our mortality, we will make wiser decisions, die with less distress, and live the remainder of our lives, whether days or decades, more fully and with less anxiety. If our society adopted a similar, more mindful outlook, we would make wiser and more just policy decisions, and debate the issues with a bit less hubris. This is why he wrote his book, Dying with Ease: A Compassionate Guide to Making Wiser End of Life Decisions, and it is the foundational thesis for his blog and future projects. The following excerpt is reprinted with permission of his publisher.
In 1948, Cicely Saunders met a man who would change her life. She was a thirty-year-old nurse and social worker, volunteering part time at St. Luke’s Hospital in London, an institution that had been founded a half century earlier as a home for the “dying poor.” She became captivated by a patient named David Tasma, a Polish Jewish refugee who had escaped from the Warsaw ghetto, worked as a waiter in London, and was now dying of cancer. Through her work and this relationship, she developed an awareness of the suffering and indignity experienced by dying patients, and, together with David, shared ideas as to how this could be different. When he died, David bequeathed her £500 (about $23,600 today) to be “a window in your home.” It was the beginning of an entirely new type of medical care, a care specifically focused on the needs of the dying. She called it hospice.
The word “hospice” was not new, but this meaning was. The term is derived from the same Latin root as our words “hospital,” “hostel,” and “hospitality.” This Latin term first meant “stranger,” but over time usage changed and it came to refer to a host, one who welcomes the stranger. During the medieval era, hospices were inns, boarding houses along pilgrim routes that served as places of rest and refreshment. On these long treks through Europe, many pilgrims became ill, often fatally. The hospices served then as places of care, possible recovery, often death. The word had been used since the mid-nineteenth century in Britain and Ireland for homes for the dying, places where the poor with nowhere else to go died. What Dr. Saunders did was to create a new connotation of the word “hospice,” keeping the welcoming but transforming it from a place to a model, a system of caring for the dying.
Cicely Saunders did not start out in health care. Her initial training was in politics, philosophy, and economics. In 1940, she entered nursing school, but because a back injury prevented her from doing the heavy work that nursing required, she went back to school and qualified as a medical social worker. The years she spent at St. Luke’s as part of a staff that cared deeply about the plight of those who were dying in their care demonstrated to her the impotence of the care system in the face of the patients’ ongoing pain. Knowing that the medical establishment would be resistant to hearing the ideas of an upstart social worker, she went to medical school. She then practiced for seven years at St. Joseph’s hospice in east London, listening to patients, keeping meticulous records, and monitoring the results of her treatments to relieve pain and other symptoms.
One of the first practices she challenged was the method of prescribing opioids, strong pain relievers like morphine. The prevailing practice had been to only use these drugs, given as injection, when the pain appeared severe, when it seemed to the doctor or nurse that the patient was hurting enough to “deserve” relief. The common result was that patients were either in unrelieved pain or briefly asleep after a drug dose. Then, as now, what most people “knew” about opioids was that they were addictive and dangerous. What Dr. Saunders recognized was that patients were the only ones who knew how bad their pain was and that their reports could be trusted. Since an oral dose of morphine lasts about four hours, she decided to give doses that often, by the clock, not by waiting until the pain had recurred. She also added smaller doses of analgesics between the scheduled doses if the pain “broke through.” This simple yet revolutionary idea, when put into practice, demonstrated that pain could be effectively relieved, and when this was accomplished, the patients could function more fully, engage with others more effectively, and contend with their other symptoms as well as the hopes and fears that came from the fact that they were terminally ill. In other words, they were able to live.
In 1967, Dr. Saunders opened St. Christopher’s Hospice in London, incorporating what she had learned into its structure and operations. The architecture included a sheet of glass at the entrance honoring Mr. Tasma’s bequest. She saw the mission of St. Christopher’s as providing not only excellent patient care but also a center of education and research, focusing on improving symptom relief and broadening the appreciation of this knowledge into the larger world of health care.
Dr. Saunders identified that pain was not just a physical phenomenon. Morphine was not all that was needed. She described “total pain,” the hurting that occurred in the physical body, the emotional psyche, the spiritual depths, and the surrounding family. She attacked it with a model of care aimed at all facets of life that contributed to that pain. Effective analgesia was, of course, a priority. But she recognized that it takes a team of skilled and caring professionals to do the job completely: bedside nursing to promote symptom relief and bodily integrity; social work to address financial and family concerns and to mobilize community resources; and clergy to provide empathic listening, words of comfort and advice, and insight into the realms of meaning and transcendence. She extended this care model into the community, providing services for patients dying in their homes, and she introduced family support during the patient’s illness and also after the death. Her ideas remain the bedrock of modern hospice care as well as its sister discipline, palliative care. In 1979, Queen Elizabeth II named Dr. Saunders a Dame Commander of the Order of the British Empire.
Dr. Saunders’s model of care spread across the Atlantic, finding fertile ground especially among nurses who were frustrated by the way the medical establishment seemed to be both overtreating and abandoning the dying. Florence Wald, dean of the School of Nursing at Yale University, served as the catalyst and, with a small group of colleagues, founded Connecticut Hospice in 1974, modeling their program after St. Christopher’s but adapting it to the local medical and social culture. This was two decades before the SUPPORT study would formally describe the suffering and intensive care endured by dying patients, but these visionaries and many like them recognized that a more humane way of dying was possible. Hospices began springing up around the country—small, mostly volunteer agencies, often associated with hospitals or religious institutions. As most of these relied mainly on donations and volunteers, the services offered varied widely.
A watershed moment in the care of the dying in the United States came in 1982 when the US Congress and President Reagan enacted the Medicare Hospice Benefit (MHB). This established a funding mechanism for hospice care and set standards for the organizational structures and for patient care. The MHB, as initially conceived, envisioned a “typical” hospice patient as someone with advanced cancer and no further treatment options, one whose course after hospice enrollment would be manageable, predictable, and short. In the ensuing thirty-five years, medical (e.g., AIDS epidemic, hospice for multiple other illness), financial (e.g., drug costs, federal budget deficits), and demographic (e.g., aging baby boomers) pressures have resulted in tweaks and modifications of the regulations, but the MHB continues to define how hospice care is provided in the United States.
© 2020 by Jeff Spiess, MD
Excerpt from the book Dying with Ease: A Compassionate Guide for Making Wiser End-of-Life Decisions by Jeff Spiess. Used by permission of the publisher Rowman & Littlefield. All rights reserved.
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Related:
- Voices of Experience: Death Is But A Dream by Christopher Kerr, MD, PhD
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