Hospice event to spotlight right to die

It was just a little over a year ago that Terri Schiavo’s name was a household word and her sad predicament the subject of many a heated debate. Though she died on March 31, 2005, her story will be in the limelight again next week at the first education conference of the Maine Hospice Council.

Schiavo died at a Florida hospice facility nearly two weeks after doctors finally removed the feeding tube that had kept her body functioning for more than a decade, even though she was found to have no meaningful brain activity. The contentious and very public decision to discontinue those feedings and allow her death fueled an international debate over end-of-life care and underscored the need for people to document and communicate their own wishes carefully.

The Terri Schiavo case holds important lessons for medical practitioners and the general public, according to Kansas lawyer William Colby, author of the recently released book “Unplugged: Reclaiming our right to die in America.” Colby will speak at the Maine Hospice Council conference at Colby College in Waterville. He is unrelated to Colby College benefactor Gardner Colby for whom the school was named.

With all the recent developments in medical technology, William Colby said in a telephone interview Thursday, people need to know their options and determine where they will draw the line when it comes to being kept alive by artificial means. For physicians and other providers, Colby said, the availability of life-sustaining technologies has outstripped the ethical debate over when it’s appropriate to use them.

“We’ve only been at this [debate] for 30 years,” Colby said. Before the baby boom generation, he noted, end-of-life options were relatively limited. Crude feeding tube design and an incomplete understanding of human nutrition did not allow for long-term artificial feedings. Mechanical respirators were immense, immovable and a life sentence to bed-bound institutional care. Now, people can be kept alive much longer using better technology, though their quality of life may be even more severely diminished, Colby said.

Adding to the urgency of the situation, he said, is the confluence of three factors: the aging of the baby boomers, the skyrocketing cost of medical technologies, and the federal Medicare program’s diminishing ability to pay. “It’s time to figure out these hard questions,” he said, adding that political and spiritual leaders must be part of the public debate, but should not be allowed to dictate personal choice.

In the 1980s, Colby served as the lead attorney representing the family of Nancy Cruzan, a young Missouri woman left in a vegetative state after a car accident. The Cruzan case was the first right-to-die case heard by the U.S. Supreme Court, and Colby’s first book, “Long Goodbye: The Deaths of Nancy Cruzan,” was acclaimed for its careful analysis and page-turner readability. Early reviews of his new book indicate it is likely to be similarly well received.

Kandyce Powell, director of the Maine Hospice Council, said Thursday that advance directives, the legal documents that spell out individuals’ end-of-life wishes, are key to maintaining control over medical care, dignity and comfort during the final days and weeks of life. Yet relatively few people have completed these documents, and some who do may fail to share them with family members, friends or personal attorneys. Especially in the United States, she said, people don’t like to discuss the reality of death. “There’s a lot of anxiety around dying, ” she said.

That same reluctance prevents many people, especially in stoic Maine, from taking advantage of the many services provided by hospice organizations, Powell said. These services include home nursing visits, family support, pain management, spiritual guidance and limited institutional care if needed. In most situations, a physician must certify that the patient has six months or less to live in order to be eligible for these services, which are covered by many insurance policies as well as the federal Medicare program. If the patient lives longer than six months, the certification is simply renewed, Powell said.

Maine ranks 48th in the nation in use of hospice services paid by Medicare – a statistic the hospice council hopes to improve over the next few years. Physicians and their patients often associate a referral to hospice services with medical failure and loss of hope, Powell said, when in reality hospice services can be key to living out one’s life meaningfully and in peace. Next week’s conference will explore ways to persuade more Maine people, and their doctors, that hospice is a reasonable alternative to continued aggressive treatment for terminal conditions.

The first education conference and annual meeting of the Maine Hospice council will take place June 14 and 15 at Colby College in Waterville. For more information, call the Maine Hospice Council toll free at (800) 438-5963 or visit www.mainehospicecouncil.org/