JULY 7, 1997 VOLUME 5, NUMBER 1
Villa Maria Care Center, a Tucson nursing home, has become the second local facility to establish a formal Ethics Committee. The newly formed committee consists of facility staff and medical director, clergy, care providers, lawyers and family.
Institutional ethics committees have been talked about in the professional care community for three decades. The concept received formal judicial approval as early as the 1976 case of In re Karen Ann Quinlan, in which the New Jersey Supreme Court suggested the committees as a method of determining whether life-sustaining treatment could be removed from incapacitated patients. Although most hospitals have created some type of formal ethics committee, the concept has not caught on in nursing homes to the same degree.
Villa Maria’s committee is the brainchild of facility Administrator Irene Shafer and the Director of Social Services, David Bromberg. Both are active participants on the Committee, as is Villa Maria’s Medical Director, Dr. William Clark.
Rather than focus on individual cases presenting ethical dilemmas, the Committee has begun its work with a broader view. The first order of business has been to develop a useable definition of “comfort care” to be applied in cases involving the removal of life-sustaining treatment.
“Comfort care” sounds like an obvious concept; no one would argue that patients, even dying patients, should be kept comfortable and pain minimized. The problem is that not everyone agrees what is (or might be) painful for patients, particularly when they are unable to communicate their current wishes. The most common disagreement is on the issue of hydration.
Medical experts sometimes disagree about whether a dying patient (at least one who can not or will not swallow sufficient food and fluid to maintain life) experiences pain associated with dehydration. On one hand, some argue that the experience of dehydration is obviously painful, as evidenced by the parched mouth and cracked lips associated with the process. Others argue, however, that the dehydration associated with end of life is gradual and painless, and induces a feeling of euphoria. Any pain, according to this view, can be alleviated by gently applying moisture to the lips and gums, using a sponge.
When a patient has executed an advance directive directing the withholding of artificially-provided food and fluids, that usually is (and should be) read as precluding administration of fluids by tubes or intravenous lines. What is more difficult is to decide how to interpret the advance directive which requires the withholding of food and fluids, but the administration of “comfort care.” The Villa Maria Ethics Committee seeks to define a protocol for that all-too-common situation.
A related problem, less frequently explored, is the effect of the dying process on family members and caretakers. It seems likely that many (perhaps most) people would want some consideration to be given to the feelings of the living in the administration of care at the end of life. Unfortunately, that element of patient autonomy is not well-articulated in most advance directives. Although most people may wish for a peaceful and painless death, they probably also prefer a process which causes little or no family upheaval and anguish. A controversy over whether the dying patient can feel pain associated with dehydration, or would have refused intravenous fluids, may disrupt the dying process as much as the possible pain itself.
Villa Maria’s Ethics Committee is still considering the best approach to handling end-of-life care issues. Even if the result is imperfect (as it must be), the discussion will assist facility staff and directors in understanding and accommodating the thought processes of patients and family members. Comments from Elder Law Issues readers will be passed along to Bromberg, Shafer and the Committee.