Health care

There were two articles in the New York Times last week that spoke to some of the issues I face as a chaplain. The first dealt with issues surrounding the medical decisions people make. The author writes about the use of medical resources and the ways that patients are often persuaded or pressured to make medical decisions that may not be in their long term best interests. The other reported on delerium and hallucinations in elderly hospital patients.

When I meet with families we often address the issues of medical decisions they have made before they decide on hospice. There is the gentleman whose wife persuaded him to get a feeding tube "to give him the strength to try one more" kind of treatment. The treatment didn't work and now they're tied to a feeding tube that he never really wanted and she, and the children, no longer want in place. However there's little documentation that he acquiesced to the feeding tube "just for them." Even though there's plenty of documentation that this is not a treatment he would want given his current health, the doctor is uncomfortable removing the feeding tube. As in the New York Times article, there is the women with end stage dementia and a pacemaker. Instead of viewing her slowing heart as a natural part of reaching the end of life, it's viewed as a problem that needs to be fixed. There's the patient who is a "full code" and whose children don't want a DNR (a whole issue in and of itself.) Some patients and families say that the aggressive treatment was "right at the time," but now want it stopped. Others feel that it was never right but they felt they "had no choice."

And then there is the issue of hospitalization. In addition to the hallucinations and delerium that patients often face, there is also the fact that hospitals are not always the best choice for elderly patients. Often a nursing home can provide the care that one of their residents needs without the disruption and disorientation that comes with hospitalization. For patients with dementia, the unfamiliar surroundings and staff are especially disruptive. Patients who are mobile in their own homes, whether private homes, assisted living or nursing homes, are kept in bed or in a chair because they are a "fall risk." In addition, virtually every nursing home I've visited has stories of elderly patients sent out to the hospital with intact skin who return with skin breakdown and pressure sores.

Sometimes it seems that just because we can - insert a feeding tube or a pacemaker, send a resident out for specialized treatment, try an intervention that may be helpful - we think that we should. Sometimes the best thing we can do for a patient, a parent, a friend is to do nothing medically. Sometimes the best we can do is to look at the quality of life and provide the best quality we can for however long a person has. Medical intervention is not always the answer. We need to look at the whole patient, the whole family, not just a single symptom or two. We are more than our diseases, more than "the little old lady in bed A." All too often our health care system misses the person as it focuses on the disease.

Unfinished business

Sometimes we have a patient who is declining, declining, declining, declining or actively dying, but, somehow, just keeps on going. We wait. We watch. We stand vigil. Well, really, we sit vigil.

At hospice rounds someone asks, "How is it that Mrs. S. is still with us?" or someone comments: "Mr. G. really needs to go to heaven."

We don't have an answer. As a chaplain, I get to say that matters of life and death are in God's hands, not ours. And I believe that. Because we really don't have an answer. Some people begin their process of active dying and are gone in a few hours or a day, or two. Others last and linger and fade and get more and more gaunt, but they don't die. It has nothing to do with medication. They can be on heavy doses of morphine to control their pain; they can be on minimal medication with no indications of pain.

We hold their hands. We play soothing music. We let them know that they are not alone. The family asks "when?" and "how long?" We don't have an answer. But sometimes we get a hint. Mrs. S. is talking to people we don't see. Mr. G. is apologizing for something, we don't know for what. One is calling out "I love you."

And we get a hint that there is some unfinished business; a lost connection, something that wasn't said or done, something that still holds them here while their body is doing everything it can to leave. Sometimes we help bring someone in and that is the business that is holding someone here. A lot of times, though, we don't know why someone is still here. Or "how long." So we sit vigil. And hold hands. And say "I love you." Sometimes that is enough.