When Sunset Comes

How Doctors Can Help
Pamela Miles

In 1994 the prestigious medical journal The Lancet advocated acting lessons for medical students so they "could at least act as if they cared." Thankfully, the act is becoming real.

The call came in the middle of the night, just as I'd always imagined it would. I stood by my father's hospital bed while a physician I'd never met explained the situation. But this kind doctor chose his words carefully, sparing me the Latin and the word death, and his eyes held mine in an unbroken gaze, intently monitoring my state. I borrowed his steadiness, grateful for it, and held my young daughter close.

Our family was fortunate. Earlier medical crises had pushed my parents to anticipate vital end-of-life decisions, creating the blessing of a clear space. But the good doctor also helped enormously, and such help is becoming more common. Thanks to a strong adverse reaction to the cold medicalization of death, innovative physicians are setting new standards for humane end-of-life care that addresses physical, emotional, and spiritual needs. Interested physicians, allied healthcare professionals, and non-professionals gather each spring at the annual Art of Death and Dying Conference in New York City to learn from these pioneers. Ira Byock, M.D., author of Dying Well, was one of this year's plenary speakers.

Byock believes that medical care is needed to control symptoms, ease functioning, and improve quality of life, but that medicine's role at the end of life shouldn't occupy so much space that it becomes difficult for people to live fully. Rather, it should support the comfort and functioning of the patient so that he or she can actively engage in this stage of life -- when it is very natural for people to look inward and ask questions of ultimate meaning.

Dr. Byock uses this insight to focus his work with the dying. "I ask myself, where do people look for their sense of meaning? What is their connection to that which endures? I approach everyone with the assumption that each has a sense of connection and meaning and I just listen to learn the language of their spirituality."

Probing for meaning often involves reviewing ones life, and one thing Byock recommends is getting out the photo album and telling stories, "even if you've heard them before." He suggests that families consider capturing these stories on tape to create an heirloom for the future.

Helping people find meaning in the present through contemplating their legacy is an approach used by Bruce Bartlow, M.D., author of Medical Care of the Soul. Bartlow helps patients identify not only the conditions they want at the end of life, but also what they would like to accomplish in their remaining time. Then he uses that as a value against which all decisions are weighed. He helps patients recognize their spiritual goals by asking what their souls need to feel complete in this life. Such profound self-recognition puts all temper, considerations into perspective.

When patients first come to Bartlow, often long before the situation is critical, he asks them to complete the Five Wishes Form from the Commission on Aging with Dignity. This comprehensive but easy-to-use form helps patients clarify their desires regarding medical care, comfort environment, proxy, and legacy to family, and provides family members with a derailed rendering of their values.

Another resource families should know about is palliative care, a new medical discipline that seeks to release many benefits of hospice care from the limits of a six-month prognosis. Russell Portenoy, M.D., is head of Beth Israel Medical Centers Department of Pain and Palliative Care in New York City, and a leader in the field. According to Portenoy, quality-of-life treatment should be integrated into routine medical care." Thinking in these terms has the power to move end-of-life experience from the intolerable into something that can be helped."

Leslie Blackhall, M.D., medical director of Assisted Home Hospice, cautions patients against a counterfeit spirituality she sees all too often -- "the pernicious new-age mentality that can't let a negative thought in," and which precludes patients from addressing the reality of their situation. Such unclear thinking robs families of the spiritual healing and resolution that is so desirable at the end of life. "To make good decisions," she says, "you need to be open to receiving information. Otherwise you're at the mercy of your own fears and any specialist who is willing to continue aggressive treatment even in the face of diminishing benefit."

Dr. Blackhall seeks to provide patients with a safe space where they can grow spiritually. She eloquently sums up the spiritual process of dying when she says, "The end of life is a process of letting go of pieces of your identity. If you let go consciously, gracefully, then you can fall back into something greater.

Pamela Miles is a complementary health practitioner in New York City. She has written on complementary medicine for Yoga Journal in the New York Daily News.