WE NEED MORE AND BETTER WAYS TO DIE

http://www.alternet.org/books/we-need-more-and-better-ways-die-america?akid=14064.294211.4YGpuN&rd=1&src=newsletter1052620&t=22

A series of cases surrounding the shifting definition of death were brought before the public in the 1970s, including that of Karen Ann Quinlan. Quinlan was twenty-one when she collapsed after drinking alcohol and taking Valium. She had been unconscious and not breathing for more than fifteen minutes by the time paramedics arrived and resuscitated her. How much of her brain was still functioning was a mystery. After she had been kept alive on machines for a year, her parents “began to ask a question never really asked before in human experience: Should they turn off the respirator, which could not return their daughter to ‘living’ life, and allow their daughter, Karen Ann Quinlan, to die?” writes lawyer William H. Colby in Unplugged: Reclaiming Our Right to Die in America. The hospital feared homicide charges and refused. The Quinlan case, which flooded national and international headlines, was taken to the New Jersey Supreme Court, which side-stepped the “is Karen alive?” question. The court determined that a patient and her family had the right to privacy and could deny medical treatments, even if that denial meant certain death. Americans in their living rooms watched the media drama the Quinlan family lived through and en masse decided that being artificially kept alive on machines was not their idea of a good death.

In 1969, Elisabeth Kübler-Ross, a Swiss American, published a study on the five stages of grief, On Death and Dying. The book focused attention on patients at the end of their lives and began the grassroots movement to improve end-of-life care in the United States. The first modern hospice was opened here in 1971. Now, nearly 1.5 million deaths (out of a total of 2.5 million) occur in hospice each year. The number is misleading though. While patients can be admitted to a hospice program if they are diagnosed with six months or less to live, the average stay is less than two weeks. More than a third die after only seven days in hospice. One challenge is the requirement that patients’ end curative treatment before being admitted; some are not ready to give up the hope for recovery. While the focus of hospice is to keep dying patients as comfortable as possible, financial, familial, cultural, and ethical variables continue to make the hospice experience different for every patient. Some have families with enough resources—money and time—to care for them as they die at home (Medicare typically only covers four hours of in-home care a day, not enough for those who are immobile or alone). Still others are moved to in-hospital hospice wards when they or their family finally acknowledge that their illness can’t be cured. Others finish out their days in an elder home, with a hospice nurse paying visits to the facility. There are also designated hospice facilities, like the one my father died in.

Alongside the growth of the hospice movement came the autonomy movement, which pursued another route in its search for a good death: the law. Forms such as advanced directives, medical proxies, and living wills have been developed to help us make our final decisions; laws have been enacted at the state and federal levels to protect those decisions. After my father’s death, I went straight to our family lawyer and had him draw up my own will and medical proxy. Everyone who knows me well knows where these documents are kept (in a manila envelope in the gray metal file box to the right of my desk, the numbers for my sister and my lawyer on a Post-it note stuck to the outside). Yet the existence of laws that protect my end-of-life wishes doesn’t mean I’ll get what I want should a bus hit me on the busy streets of Manhattan tomorrow. Routinely, law is thwarted by practice: