Death with Dignity: Hospice Care

The recent announcement by 98 year old Jimmy Carter, our long-lived president, that he was opting for hospice care at home instead of additional medical intervention, is in keeping with the trend towards dying with dignity. Hospice care arises when an illness is either no longer responding to medical treatment, no medical treatment is available, or the patient has decided they want to transition from treatments intended to prolong quantity of life to treatments intended to improve quality of life.

One of the great misconceptions about hospice care is that it is the cessation of medical care. Dr. Sunita Puri, author of “That Good Night: Life and Medicine in the Eleventh Hour” defines hospice care as “intensive comfort-focused care, provided with the goal of minimizing the physical, emotional and spiritual suffering that patients and their families experience when somebody has possibly six months or less to live.” While hospice can usually take place at home it can also be in a facility and is paid for by Medicare Hospice Benefit.

The hospice “team” consists of (1) a nurse to assess and manage pain and provide hands-on-care, (2) a social worker, to offer emotional support and help with planning, (3) a physician to interface with the patient’s primary physician and consult on pain and symptom management and make house calls, (4) a hospice aide to help with personal care needs, such as bathing, (5) clergy to offer spiritual support, (6) volunteers to help in a variety of ways, and (7) a bereavement specialist to provide grief and loss counseling.

Regrettably, hospice care in the US averages only about three weeks, due to the fact that people are reluctant to talk about topics like suffering, quality of life and whether treatments are adding to or detracting from someone’s quality of life. Delaying those conversations leads to very late referrals to hospice.

As Dr. Puri points out, “Hospice is not about giving up…hospice is about acknowledging where your body is at, at a given stage of illness, and honoring that and honoring the person that you are, which is distinct from the illness you are suffering…hospice attempts to maximize dignity and minimize suffering.”

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