Marilyn Hodges, M.D., believes she has failed the dying.
A geriatrician and medical ethicist, Hodges became a physician to help others, drawn to the field because of her mother's lifelong suffering from heart disease. Yet despite her advanced training, Hodges said she has not been adequately educated to help dying patients.
Her failings, she said, include a tendency to put her medical agenda before the patient's personal agenda. For various reasons, she often hasn't recognized a patient's final days and, thus, hasn't given the patient or family a chance to use them for spiritual healing, she said.
In the same way, hospitals and other parts of the healthcare system have designed services for people with life-threatening illnesses based on the needs of medical care, not on the actual experiences of those involved, according to a recent study.
The study, conducted by six Catholic healthcare organizations, provides insight into how life-threatening illnesses affect patients, their families, caregivers and the community.
Hodges is an investigator in the study.
The group, called Supportive Care of the Dying, was formed following ballot initiatives in Oregon and Washington regarding physician-assisted suicide. Hospitals and other providers have argued against legalizing physician-assisted suicide, contending it would violate their mission to heal. Underlying that contention is the fear that legalizing physician-assisted suicide would result in onerous regulations (Feb. 17, p. 2).
The coalition hopes better care at the end of life will diminish much of the sentiment in support of physician-assisted suicide.
The results of its initial study, which was a needs assessment, show that care of the dying requires a radical transformation, said Sylvia McSkimming, the project's principal investigator and director of nursing quality and research at Providence St. Vincent Medical Center in Portland, Ore.
"The most seriously ill persons have fragmented, episodic contact with healthcare systems and healthcare professionals," McSkimming said.
Contrary to many patients' needs, care for the dying still focuses on curing illness. Instead, in many cases, compassionate care would focus on making an individual's last phase of life more meaningful, McSkimming said.
Healthcare systems can lead the way to change. For example, the coalition is designing a professional mentorship program to help doctors better meet the needs of the dying and their family. It also is working on models of supportive care and community-based education. All are expected to commence as pilot programs in the next two years.
The study involved a series of focus groups with more than 400 people from March through June 1996. Analyzing the transcripts, researchers then developed profiles of the experience of each group: patients, personal and family caregivers, bereaved people, professional caregivers and members of the community. More than half the focus-group participants were between 40 and 60 years old, and 72% were women.
The results were presented at the assembly of the Catholic Health Association earlier this month in Chicago. An executive summary is available from St. Louis-based CHA, a member of Supportive Care of the Dying.
The other coalition members are five Catholic healthcare systems: Carondolet Health System, St. Louis; Catholic Health Initiatives, Denver; Daughters of Charity National Health System, St. Louis; PeaceHealth, Bellevue, Wash.; and Providence Health System, Seattle.
Patients clearly said their illness and death is not a medical event, said Alice Super, project coordinator and a pain consultant and supportive-care specialist in the Portland facilities of Providence.
Taking on the role of a patient, Super said: "Help me integrate illness into life so I might continue to live. I am not afraid of dying. I am afraid of never being able to live before I die."
Patients said they needed information about living with their illnesses, their treatment choices and the changes likely to happen to them. Many were distressed that physicians could not or would not answer their questions about the dying process. One participant reported that his oncologist told him not to talk about death or "it's going to happen."
Caregivers, for their part, felt the illness of their loved ones was also theirs, and physicians should treat them as if they and the patient were part of a unit, Super said.
In the case of the bereaved, they relived their experience over and over and typically wished they had made better use of their loved ones' last days. Many complained that physicians and nurses ignored or misinterpreted patient's living wills and advanced directives. They also sometimes kept family members away from the loved ones in an attempt to prolong life.
Meanwhile, doctors reported suffering greatly from a sense of inadequacy in the face of death. Consequently, they often withdrew emotionally from their patients. Generally, time spent with patients and their families is at great cost to their own personal lives, Super said. In addition, their employers typically reinforce only procedures and reimbursable services.
Hodges said she will strive to do five things differently as a doctor after participating in the study:
She will talk with patients more about their own agenda and focus on them as living instead of dying.
She will value the experience of caregivers more, seeing the illness as theirs as well as the patient's.
She will try to learn more about dying. "(As a student) I never watched a physician have a discussion with a patient," Hodges said. "No one taught me pain management. No one taught me about community resources. No one taught me about dying, what it looks like outside the context of cardiopulmonary resuscitation."
She will move into the background in the patient's last days. "It is so clear to me now what a sacred time that is, and (that it's right) for me to take the responsibility to announce that time has come when medically I know it has. It is right and only right for me to be a secondary figure, available but in the background when death is imminent."
She will spend more time with the survivors after the death, calling to see how they are or setting a brief appointment. "I never realized before that the family only wants to hear the words, `I'm sorry."'