September 28, 2004

A Terrible Decision More and More of Us Face

Few people are prepared to deal with some of the terrible decisions they will have to make. The New York Times today called it "The Ultimate Family Quarrel" How do adult children decide whether a parent lives or dies when faced with a crisis like Geraldine Reardon's. A terrible situation that more and more of us will face.

Just when a family should be coming together, supporting each other with full hearts, disagreements about what to do and what Mom or Dad would want because of the lack of a health care proxy can split families totally.

    The crisis posed by Mrs. Reardon's condition and her family's rocky history was daunting but hardly unusual, doctors and other experts say. Medical advances are forcing more patients and families to confront ever more grueling choices about living and dying. Such advances offer the hope of saving desperately ill patients but can also result in patients surviving in such severely compromised conditions that families become painfully confused.

    This inevitably exposes or creates family conflicts, which then make urgent medical decisions even more difficult, a wrenching cycle that can tear families apart. In addition, doctors often disagree about how to treat such patients, and living wills often fail to resolve critical questions.

    "Every hospital in the country has families going through this all the time now," said Dr. Erik Steele, vice president for patient care services at Eastern Maine Medical Center in Bangor, where a recent case involved four siblings so divided over whether to keep their 88-year-old mother alive that they first put her on a respirator and then took her off it.

    "This is going to be an issue more and more for us, and I think it's an issue almost unique to our generation," Dr. Steele said. "For the first time, we have this degree of technical ability to keep people alive without the ability to always restore them to good health. At the same time we have a much higher expectation of what health care can do." ------

    While families often seem to pull together when dealing with treatable illnesses, they often splinter over an end-of-life decision, experts say. Old frictions surface and new ones form, based on family relationships and different ideas of what makes a life worth living. Living wills, advance directives and health care proxies are intended to resolve crucial questions about what a patient would want, but they often fall far short.

Such a life and death decision is fraught with the emotion of the circumstances and conscious and unconscious emotions of the children. While health care proxies are designed to deal with this situation, some try too much to control future medical decisions. I wrote about the recent study by the Hastings Center in Is the Living Will Dead?

A lawyer friend for whom I have a great deal of respect said the most important thing with health care proxies was to give one person the authority to make all medical decisions. The worst thing is not to have a health care proxy and to burden all the children with making such a terrible decision.

Posted by Jill Fallon at September 28, 2004 7:08 PM | Permalink