July 11, 2006

Learning from Schiavo

Art and Paul Root Wolpe reflect on some lessons learned in the Penn Schiavo conference:
"The most startling impression to emerge from the [Penn] Center's conference was that the people who were painted by one side or the other as extremists - Michael Schiavo, Judge Greer, Father O'Rourke - come across as thoughtful advocates, see end-of-life care decisions as complicated and fraught with moral difficulty, and deserve none of the venom heaped on them by their opponents.

Julia Quinlan, the mother of Karen Anne Quinlan, spoke movingly of her long struggle to gain the legal right to control her daughter's care in the landmark case that established a person's right to refuse life-supporting medical care. Michael Schiavo recounted his 15-year ordeal seeking the best care for his wife, during which he became an emergency medical technician and a nurse in order to better help her, and the painful decision he made after being told by Terri's physicians that her status would never improve. Calmly, but with obvious pain, he described the websites, protests, and letters and emails that portray him as a wife-abuser, a money-grubber, a philanderer, and a murderer. Dr. David Casarett described the struggles of the families of the geriatric patients he cares for as they try to make difficult decisions about the care of those they love.

Everyone got in his or her shots at the media coverage. The willingness of 'experts' to come forward and pronounce on Terri Schiavo's medical condition, or even offer to 'cure' her, and the indulgence of television in particular to give them airtime drew especially critical comment. Bob Bazell of NBC noted that there are all manner of media, and if one finds the journalism of the cable channels too overwrought, there are many other outlets available that covered cases like Schiavo with much care and balance.

So what can be done to make dying less burdensome in America for those who cannot make their wishes and feelings about end-of-life care known? A few important points emerged from the presentations and discussions. Hospice care needs to be readily available to all Americans. Physicians need to continue to struggle to improve palliative care and to communicate honest and accurate information to families and loved ones about those who are terminally ill or severely neurologically compromised. Every one of us must discuss our wishes and our choice of a spokesperson with those closest to us, and these wishes must be put in writing in the form of an advance directive or durable medical power of attorney. Our written document needs to be updated every few years to reconfirm our choices.

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