Many people will put off the writing of a Living Will thinking that their family will be able to agree on the most appropriate care. Countless press articles suggest that the 30 minutes or so that it will take to prepare a Living Will is time very well spent. Another article published this week demonstrates the anxiety that end of life care decisions can place on a family.

As a Life Ebbs, the Ultimate Family Quarrel

October 28, 2004
PAM BELLUCK
NY Times

Geraldine Reardon's medical nightmare sneaked up like a cruel and crippling ambush. Mrs. Reardon, an otherwise healthy 66-year-old, went to the hospital last October for a routine hernia operation. Days later, a ravaging infection set in. It corroded her fingers and toes with gangrene and forced doctors to medicate her into a coma to spare her unbearable pain.  

But Mrs. Reardon's condition did something else, too. It forced her daughter and son to decide whether their mother should live or die. Should they authorize treatment that would save Mrs. Reardon's life but involve months of surgery and the amputation of most or all of her hands and feet? Or should they remove her respirator and feeding tube, hastening her death on the assumption that she would rather die than live like that?  

Mrs. Reardon's daughter, Jacki Folger, and her son, David Reardon, sharply disagreed over what to do. And the decision was made harder by their strained, complicated, sometimes stormy relationship. 

Ms. Folger, 47, was close with her mother and was an emotional anchor to family and friends here in Lancaster, a rural community west of Boston. Mr. Reardon, 46, was working to repair family wounds stemming from a past that included a long-ago conviction for brandishing an ax at a police officer, and a court order granting custody of Mr. Reardon's son to Ms. Folger. 

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. 

In Mrs. Reardon's case, a conflict between her children erupted quickly and festered. Mr. Reardon wanted doctors to operate on his mother and keep her alive. Ms. Folger felt strongly from past conversations with her mother that she would not want to live under those circumstances. An uncle, Marc Gulliver, Mrs. Reardon's brother, said that Mr. Reardon, who declined to be interviewed for this article, "was more remorseful about losing his mother" because he had "unfinished business" to resolve with her.  

"Their relationship was beginning to get stronger," Mr. Gulliver said. "He was seeing her more often. And suddenly to have her ripped away from him was very difficult."  

Family conflicts over end-of-life decisions are more likely to be personal than philosophical, doctors, nurses and social workers say. They can reflect fault lines between relatives or emotions long buried.  

Many practitioners who deal with such families have noticed a curious pattern: The relative most distant or estranged from the patient is often the one most reluctant to let the patient die. 

Emotional distance can aggravate things even more than physical distance.

"People who have been long estranged from others, when they're at death's door, want to come in and rescue them," said Dr. David Kaufman, chief of critical care medicine at St. Vincent Hospital in Worcester, Mass., where Mrs. Reardon was treated.  

Writing a living will or designating a health care proxy or surrogate can help families understand the patient's general inclinations and philosophy. But "some decision will come up that you haven't discussed," said Dr. Karen O. Kaplan, president and chief executive of Partnership for Caring, an organization that works to improve care for dying patients.  

At the same time, Dr. Kaplan tells people making living wills, "you don't want to be too specific - like saying no antibiotics, for example - because then you tie the hands of your doctors." 

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