Jack Kevorkian's murder trial started Monday in Michigan. He has said that he lethally injected Thomas Youk, a man with Lou Gehrig's disease, to end his suffering because death shouldn't have to be painful.
A coalition of Utah groups who hope to improve end-of-life care agrees with Kevorkian that death shouldn't be so hard. But they don't agree that injecting someone with lethal drugs is the only option to alleviate end-of-life suffering.The discussion is a timely one. Last week, a national survey found that Americans believe, by more than a 2-to-1 margin, that instead of making assisted suicide legal, efforts should focus on providing pain relief for dying patients.
"We are calling for care that gives seriously ill patients the best quality of life they can have, even when they know death is near," said Dr. Jay Jacobson, director of the Division of Medical Ethics at LDS Hospital.
Jacobson is leader of the 50-group Partnership to Improve End of Life Care in Utah. The coalition, formed in 1998, wants people to quit skirting around death and face it -- and the issues it raises, including the need for better care at the end of life. Only when people talk about their wishes with loved ones and care providers, including physicians, can they be assured the treatment they desire as they near death.
It's a vision created nationally by the Last Acts coalition, headed by Rosalyn Carter and funded by grants from the Robert Wood Johnson Foundation and the Nathan Cummings Foundation.
The Utah partnership is part of the Last Acts coalition, which includes the American Medical Association, the American Nurses Association, the American Cancer Society, the Alzheimer's Association and other health, bioethics, religious and consumer groups.
"Patients need to know that whatever happens with their illnesses, some basic ground rules will be followed. Their own wishes will be respected, they and their families will play the leading role in decisionmaking, and they will receive pain relief and emotional comfort," Jacobson said in a press release timed to coincide with the start of Kevorkian's trial.
"We wanted to point out that there are other methods to deal with death and dying," said Tiffany Stoddard, project manager for the Utah coalition. "Physician-assisted suicide isn't the only option. We're not here to judge what's right and wrong about options, but we want to make sure everyone knows there are options. We just want people to know there's more out there for them to look at."
The coalition has outlined a "bill of rights" for patients, with five goals:
Respecting the patient's beliefs and way of doing things
Easing pain and helping the patient feel as good as possible
Using many kinds of care providers and settings
Supporting the family as well as the dying person
Advocating better care at the end of life
"What we've done in Utah is discussed some of the areas in end-of-life care that need to be improved from the physician's, the patient's, everyone's perspective," Stoddard said.
The coalition has identified four areas and formed work groups to address them: advanced planning (including medical directives); pain management and pain-alleviating care; continuity of care to smooth transitions as medical care changes; and the family group, which will look at resources, spiritual issues and the final stages of life.
The group is also developing a resource directory for patients and care providers that will provide local resources. That directory will be posted on the group's Web site, which it plans to launch on Memorial Day.
The Deseret News has also joined the partnership and will launch a regular column looking at end-of-life issues.