This article is published courtesy of the State Bar Elder Law Section Winter 2008 newsletter.
On Dec. 22, 1990, I sat with the family of Nancy Cruzan around her hospital bed in Missouri, eight days after the doctor had removed her feeding tube. Two years later, I did the same with Christine Busalacchi’s dad in a hospital in St. Louis. In front of both hospitals, protestors held aloft signs proclaiming “Murder!” as satellite TV trucks captured the scene. Some of the same protestors gathered in Florida some years later, where Terri Schiavo’s fate was being decided.
The Cruzan and Busalacchi families “won” the right to remove the feeding tubes from their unconscious daughters after years of litigation against the state of Missouri. No Cruzan or Busalacchi felt like they’d won anything. And, regardless of however the legal battle in Florida ended; it seems unlikely that any of the battling family members will feel any triumph. These families lost when fate disrupted the normal order of life and sent young women into the medical-technology limbo of permanent unconsciousness. Most of us don’t like to think or talk about these heartbreaking stories. But if we stop for just a minute and consider what we might learn from Schiavo, perhaps some good can come from this latest tragedy.
Dying has grown complicated in this country. Go back 36 years and we wouldn’t be talking about Schiavo being in a persistent vegetative state, because that diagnosis didn’t exist until 1972. Today, most deaths occur in institutions and as a result of a decision about medicine or technology.
The idea of letting nature take its course has fallen by the medical-technology wayside. Each day, about 460 people die in Florida, many by someone’s decision – respirators removed, dialysis stopped, feeding tubes clamped, antibiotics refused.
Tomorrow, families of all stripes will gather again in rooms across Florida and face hard decisions about someone they love.
The talk they never had. Thankfully, disputes such as the one in the Schiavo case are rare. Far more common is the problem of families simply muddling through because they’ve never talked about dying.
My neighbor’s father had Alzheimer’s. Though he knew his father’s health had a certain downhill path, they never talked, and then it was too late. The image stayed with him. Years later, he told me about how his family stood around the nursing home with blank looks on their faces when confronted with each new question: How aggressively do you want to treat pneumonia? Do you think your father would want a feeding tube? And on and on.
My own solution. My own solution may not be the gold standard, but I’ve thought a lot about the intersection of law and medical technology, and have taken these three steps:
• First, I filled out a legal document, a one-page power of attorney for health care. This document states that my wife (or the listed alternates) will make medical decisions for me if I cannot.
• Second, I’ve armed my wife to act as my advocate if the time comes. We talked about Nancy Cruzan and Alzheimer’s. She knows that I believe the purpose of medical technology is to serve as a bridge to recovery so that I can live life. If it cannot, I want it stopped.
• Third, I’ve talked with my siblings, my mom and others who might be in that room when decisions are made about me. Health care workers who deal with the dying all can tell a story about the somewhat-estranged adult child who flies in to “save” mom.
To avoid conflict later, talk now.
Gray questions of dying. The fractured legal journey of the Schiavo case shows us that the black and white of the law has a surprisingly limited ability to solve the emotionally gray questions of human dying. But what if, in a happier time, just once while standing over a backyard grill, Terri and Michael Schiavo and Terri’s parents, Bob and Mary Schindler, had talked about Nancy Cruzan? For five minutes? For two minutes? Would Terri Schiavo have spared her husband and her parents the unbearable dispute and grief they’ve had to endure? Don’t we owe that five minutes to the people we love?
About the Author
Bill Colby is the lawyer who represented the family of Nancy Cruzan. He is the author of Long Goodbye: The Deaths of Nancy Cruzan and Unplugged: Reclaiming our Right To Die and a fellow at the Center for Practical Bioethics in Kansas City, Mo. He will be the featured Spotlight Speaker on Thursday, May 7, at this spring’s State Bar Annual Convention in a program sponsored by the Elder Law Section.
This article is published courtesy of the State Bar Elder Law Section Winter 2008 newsletter. The State Bar offers its members the opportunity to network with other lawyers who share a common interest through its 26 sections. Section membership includes access to newsletters, email lists to facilitate information sharing, and other resources.
William H. Colby, Senior Fellow, Law and Patient Rights Center for Practical Bioethics, Kansas City, Mo.