by Michel Magee, Hospice Volunteer, from the Spring 1998 Hospice Currents Newsletter
In our American culture, in which open discussion about dying and death is typically avoided, the excellent response to Hospice Care of Nantucket Foundation’s (HCONF) community wide invitation last February to the two part seminar, Before I Die, came as a nice surprise. The issues presented in the Fred Friendly PBS Special began with confronting fears when treatments fail and concluded with suggestions that can enhance life’s end, or “good death” as some call it. Health care personnel were particularly well represented on both evenings of the seminar, in spite of less than cooperative weather.

February’s nor’easters, however, did nothing to dampen the stimulating discussions following each of the program’s topics. The goals of the seminar were not to offer easy answers to tough questions surrounding end-of-life- issues, but to provide an opportunity and environment to help each of us better understand the realities of medical personnel, patients and their families; to consider possibilities and options in improving communications among these groups; and to challenge our bias on critical matters such as artificial life support for ourselves or a loved one. As these goals are met, a balance between the medical community, the patient’s needs, and a family’s concern is needed to the benefit of all.

After viewing each of the five segments of Before I Die, in which panelists from the medical profession role-played with journalists, “patients” and relatives, HCONF’s Director, Charlene Thurston, RN, ANP, opened the floor to discussion. The first exchanges centered on a patient whose cancer had reoccurred after surgery and had not responded to a subsequent series of drug therapies. The patient, played by Pulitzer Prize columnist Anna Quindlin, verbalized fears that many patients in such circumstances think, but are reluctant to articulate to the physician: “Are you saying I’m going to die? Are you giving up on me…..?

The questions are among the most difficult that physicians confront. According to the program, unfortunately, some physicians do a poor job of responding to patients’ needs not to feel abandoned. PBS program panelist Claudia Fagen, MD, of the Primary Care Physician’s College of Michael Reese Hospital, offered that one of the reasons physicians can fail their patients in this regard is”….that they have not come to grips with their own mortality.”

Hospice workers, who deal with end-of-life issues on a regular basis, know from their training that a “comfort level” with one’s own mortality is one of the most important qualities they bring to the hospice setting. Equally noted was that on occasion, some physicians whose patients have exhausted available treatments, view the situation as a “failure”. Their job is to save lives. When they can’t, they may be at a loss as to how to create an atmosphere of optimism related to the end-of-life, or even assure the patient they will not abandon them to pain and isolation.

Citing today’s insurance trend for managed care, and the focus on the bottom line rather than the human life, PBS co-panelist, Willard Gaylin, MD, Hastings Center, Columbia College of Physicians and Surgeons, further noted that, “Everything is in concert for (giving bad news) to be a bad scene.”

In discussion that followed, practical ways to amend the situation by putting the personal aspects of terminal illness front and center were offered. Many agreed that training programs designed for hospice workers should be available to anyone entering or practicing in medical professions. Another important point raised was that most patients upon hearing the word “cancer” for the first time, don’t hear much, if anything, that follows. In this instance, it was suggested that discussing treatment options with a patient be delayed briefly, at the very least until the patient was emotionally ready to take in the information. Tape recording, taking notes, or including a family member or close friend at a later time could be helpful.

Ira Byock, MD, President of the American Academy of Hospice and Palliative Care, and the author of the bestseller, Dying Well, The Prospect for Growth at the End of Life,summarized the goals we all might realize through the kind of open discussion by NCNF: We envision a day when dying is seen not just as a clinical process, but one that includes the social, cultural and spiritual care of patients and involves families and even communities.

The Fred Friendly PBS Special, “Before I Die, Medical Care and Personal Choices” is available at the Hospice office.

Funded by the Palliative & Supportive Care of Nantucket Foundation, the Palliative & Supportive Care Program is operated as a department of the Nantucket Cottage Hospital, which is an affiliate of Massachusetts General Hospital, and a member of Partners HealthCare. Palliative & Supportive Care of Nantucket is a specialized health care program dedicated to providing excellent physical, psychological, social, and spiritual care to persons with life-threatening illness and their families.

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