HEALTH :: JANUARY 12, 2005

A colleague of mine told me a very sad tale, and I’ll state the moral right up front: Medical issues can be extremely complicated, and you can hurt people when you try too hard to simplify them.

In November 2004, The Detroit News and the Lansing State Journal printed front-page exposes of dehydrated and malnourished patients in

Michigan nursing homes (http://www.lsj.com/apps/pbcs.dll/article?AID=/20041128/NEWS01/411280346&SearchID=73191938917154).

My colleague is a national leader in setting higher standards for nursing home care and in trying to better train the physicians who serve the elderly. I asked him what he thought of the article.

Unfortunately, he said, there are two different groups of patients involved here, one of which benefited from the article’s appearance and one of which didn’t.

The first group consists of people with some early dementia or mild physical problems, who enjoy their lives and can eat and drink with a little bit of help. In an understaffed nursing home where that help is unavailable, they can gradually become more and more dehydrated and malnourished, and eventually get severe physical problems and die. This is a form of abuse or neglect and is indefensible.

But there is another, completely different group of people, who are in the very advanced stages of Alzheimer’s dementia. This is a terminal disease in which people gradually lose interest in food and lose any sensation of hunger or thirst — symptoms that are part of the natural course of dying of Alzheimer’s.

It has been proven that trying to force-feed these patients with feeding tubes or IV lines neither lengthens nor improves the quality of life. Such treatment does, however, lead to a number of medical complications and increased misery. Experts in hospice care have long recognized that the most compassionate treatment is to accept the inability to eat and drink as part of the normal dying process and simply do everything possible to keep them comfortable.

“Anything we in the nursing home sector say in response to an article like the [Detroit] News expose,” my colleague told me, “sounds like we are just trying to defend ourselves, so it’s a waste of time.” My colleague agreed that there are many bad nursing homes out there, and wishes they could be put out of business.

But my colleague also agreed that as a result of the recent newspaper publicity, a lot of dying, demented elderly people may have their few remaining weeks or months made miserable by implanting feeding tubes. Unfortunately, it takes understaffed nursing homes a long time to coax patients to eat or drink by mouth, but it takes only a few minutes to pour a pre-mixed solution into a stomach tube three times a day.

“We have already seen a sad consequence of that article,” my colleague added. “A son of an elderly woman was wrestling with tough decisions about end-of-life care for her. We had checked her out thoroughly and were quite sure she was in fact in the dying stage, and that artificial feeding and fluids would do nothing to improve her remaining life.

“The son, naturally, resisted this rather grim assessment. But we finally persuaded him that the hospice or palliative care approach of ‘comfort measures only was the best choice for his mother. He agreed and she in fact died very peacefully a short while ago.

“Then we heard from him after this article appeared. He accused us of lying to him and just wanting his mother dead. He was quite convinced that he’d chosen the wrong thing and that he had indirectly killed his mother.

“He’s not the type to sue us, so I have few fears on that score. But this is a very tragic burden for him to have to carry around. And I am pretty sure that no matter what I tell him now, the trust we had before will never be restored.”