Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 1.1 The Temporarily Immortal and the Dying - Who's Who?

We talk about the living and the dying as if the difference were very obvious, as obvious as the distinction between men and women. But deciding who is "dying" is more subjective than that, more like the distinctions between "short" and "tall" or "thin" and "heavy," more a matter of perspective. We see death as if it were another country, and the dying as its residents, who enter on a particular date and time, and exit on another. Those not within the borders are safely excluded from that citizenry. As long as we - patients, families, caregivers, clinicians - are pursuing a cure or even a "return to health," we see ourselves as being among the "living" - the "temporarily immortal." Once we accept that there is no cure, then we somehow join the "dying." Most of us would prefer to be counted among the dying for a short time at the end of life, not for years and years.

Many people with serious and eventually fatal illness continue to work and perform their social roles. Most do not look as though they are dying - and would not describe themselves that way, either. Different fatal illnesses result in very different courses to death. The point at which dying begins is often impossible to define.

The rather misleading way we think about the dying frames much of our public policy and health care. The Medicare hospice benefit, for instance, requires that patients have a "life expectancy of less than six months if the disease takes its normal course." Many laws about living wills, forgoing life-sustaining treatment, and advance directives use the term "terminal illness." Estimating exactly when someone will die is very difficult to do, even for doctors who regularly work with dying patients. Although a disease such as cancer generally follows a predictable final phase, other diseases, such as dementia or heart disease, do not. In fact, most people who die of heart failure have a reasonable chance of living for another six months, even in what proves to be their last week of life. The SUPPORT investigators found that the median lung cancer patient still had a 50/50 chance to live for another two months one week before death - and a 20 percent chance on the day before death. For congestive heart failure patients a week before death, the median patient had about an 80 percent chance to live another two months; one day before death, that patient still had a 70 percent chance. In short, such patients do not seem discernibly different in their last few days than they were some months earlier.

When trying to label patients as dying (or not), organizations need to begin by redefining their terms. Rather than focusing on those who are clearly "dying," consider patients for whom increasing illness and disability will lead to death sometime in the next few years, and think about how to offer them the kinds of services that help patients live well while dying. We have come to use the "surprise" question, first used by Franciscan Health Services in Washington State. Ask clinicians, "Would you be surprised if this patient died in the next six months or so?" This approach works well for defining the population for whom appropriate services include advance care planning, comfort care, and psychosocial support. However, defining the population in this way means there is no clear transition between "treatment" and "palliation." Some patients will need both ICU care and DNR decisions; some will want to be on transplant lists and tape an oral history for a family legacy.

Hospice: A Good Model - But Is It Enough?
For the last 25 years, people have found much help in hospice programs, which provide a comprehensive array of services to promote patient choice in end-of-life care and to attend to family needs. The hospice movement, which originated in England, gained popularity in America in the late 1970s; by 1981, the Medicare hospice benefit meant that hundreds of thousands of dying people could receive hospice care.

However, not everyone fits the hospice admission criteria that require patients to have a life expectancy of less than six months and to no longer participate in "curative" treatments. As a result, hospice serves about 10 percent of the people who die each year, for an average of about a month. The vast majority of dying patients - and, in turn, their families - do not have access to the health care and social support which hospice provides as a framework for peaceful dying.

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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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