Hospice care is not about “giving up hope”

what is hospice                                        by Rev. Alice Tremaine, MDiv, BCC

When I tell folks I am a hospice chaplain, I often get puzzled looks. Most people do not understand what hospice is about. Just as often, I am told “That must be hard,” or “You must be a special person.” What they mean by that is, they can’t imagine a job such as mine could be anything but depressing. The truth is, many people are afraid to talk about hospice.

The specialized health care program known as “hospice” today was introduced by a British physician, Cicely Saunders, in 1967. But even before Dr. Saunders organized this program, the work of hospice was done as a community initiative. It came out of people’s loving support for their neighbors and friends as they faced life-threatening illness. The term “hospice” was used in Medieval times to denote a place of rest or shelter for folks who were ill or weary from a long journey.

Thanks to Dr. Saunders and other pioneers, hospice is now available in this country to anyone who has been diagnosed with an illness for which there is no medical cure. Hospice patients come from a variety of backgrounds, ranging from different ages, social classes, and illnesses. Today, hospice care involves the work of health care professionals who are trained to deliver symptom management and to provide guidance, emotional and spiritual support related to end of life issues. However, the movement and philosophy of hospice continues to depend on community: local volunteers are an integral part of the hospice team, and cards and visits from friends mean a lot to those who are ill and/or unable to leave their homes.

For many people, the word “hospice” has come to be associated with “death” and “giving up hope.” When a loved one is diagnosed with a terminal or life-limiting illness, it is common to feel as though the world is crumbling and life can never feel good or normal or light again. But even when medical treatments cannot offer us hope for a cure, there can still be hope – for meaning, for connections, for quality of life, for meaningful time.

People are surprised sometimes to find that life can still be beautiful and enriching in the midst of illness. Hospice families (or any families struggling with illnesses) have many difficult moments marked by sadness, anger, or exhaustion. But they also have wonderful moments that are full of life. I see families doing that everyday — saying things they might not have thought to say, reminiscing and reaffirming, celebrating birthdays, holding each other.

A life-threatening diagnosis changes one’s priorities. When our bodies are failing, we have to become more selective about how to spend our energy. When time is an issue, we are more aware about how we want to spend it. The truth is none of us knows how much time we really have. Life is a gift, and it is meant to be lived – fully and richly, to its very last drop.

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