Wednesday, July 25, 2007

Understanding Hospice -- An Underutilized Option for Life's Final Chapter

NEJM:Gail Gazelle, M.D.

It was Mr. G.'s third exacerbation of congestive heart failure in the past 6 months. Eighty-three years old, he had New York Heart Association class IV heart failure, end-stage coronary artery disease, and insulin-dependent diabetes. Although he had never wanted to be put on a ventilator, this time his shortness of breath was so terrifying that he felt he had no choice. After having a good response to diuresis, he was successfully extubated and transferred out of the coronary care unit.

Two days later, a hospitalist suggested to Mr. G. and his wife that given his advanced disease, he should consider going home and receiving hospice care there. Sensing the couple's fear, she reassured them that death was not imminent and that members of the hospice staff would work to ensure the best possible quality of life. Relieved, Mr. G. acknowledged that he would prefer to avoid rehospitalization.

Introduced in the United States as a grassroots movement more than 30 years ago and added as a Medicare entitlement in 1983, hospice care is now considered part of mainstream medicine, as evidenced by growing patient enrollment and Medicare expenditures ...But despite its increased use, many aspects of hospice care are still misunderstood by both physicians and patients. For instance, many would not consider Mr. G. to be a candidate for hospice care. He did not have cancer, and his death was probably months, not days, away. The fact is, however, that slightly less than half of hospice patients have terminal cancer; nearly 40% of hospice admissions are for end-stage cardiac disease, end-stage dementia, debility, pulmonary disease, and stroke.

Patients and clinicians may also not realize that hospice care at home is free. Medicare is the primary payer for hospice care in approximately 80% of cases, with care most often provided in the patient's home. Commercial insurers also provide hospice benefits, but the specifics of coverage vary. Under Medicare, most expenses related to the terminal diagnosis are paid in full, including all medication and equipment and all visits by hospice nurses and home health aides. ... Other hallmark hospice services include intensive emotional and spiritual counseling, 24-hour crisis management, and bereavement support for at least 1 year after the patient's death. ...
With the growing number of baby boomers seeking more control over all aspects of their health care, the use of hospice care will probably continue to increase. It is especially important, therefore, that physicians become more familiar with what hospice care offers and work to overcome barriers in talking frankly with patients about what lies ahead.

I have been a strong supporter of the hospice movement for almost thirty years. Our family's recent experience with hospice care for my dying father reinforces that support. He was, with hospice support, able to stay in his assisted care facility, without the need for a final disruptive and disorienting transfer to a hospital or nursing home. Care was provided with compassion and competence (after some initial challenges in getting all the care providers on the same page about treatment objectives and modalities). Hospice personnel also provided important support through Dad's final illness for my aging mother and for my brother, who bore primary responsibility throughout, and helped with bereavement care in the immediate aftermath.

The article's assertion that "hospice care is now considered part of mainstream medicine" may be somewhat more aspirational than established fact in some locales, but there is increasing recognition that hospice care need not and should not be limited to cancer patients in their final days of life, and provides a highly valuable option for a much broader class of patients approaching "life's final chapter," and for their families. I commend the New England Journal for publishing this piece, and for making it freely available on their web site.

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