Most of us shop around for the important things in our lives. Finding a place to live? We check a variety of possibilities and calculate potential costs. We think about what we like and what feels comfortable, and often discuss our needs and feelings with friends and family members. Planning our kids' education? Buying a car? It's the same. We may even spend months scheming to plan the perfect family reunion or vacation.
Maybe it's hard to put that kind of energy into planning how we'd deal with a serious illness or how we'd like things to be when we wrap up our time on earth. But maybe it's important that we do. Times are changing, and so are our opportunities to help shape the way we handle chronic or terminal illness.
"People used to think hospice care was just for people who were dying of cancer," said Kim Poole, program manager for Hospice and Home Care of Juneau (★★CJ). And during the first 30 years of the hospice movement the majority of patients nationwide were indeed cancer patients. But that's changed. "Nowadays, more than half of hospice patients are people who have diseases other than cancer," Poole said. Hospices throughout the country are developing ways to help patients with progressive, life-limiting illnesses such as end-stage heart or lung conditions, neuromuscular diseases such as ALS (Lou Gehrig's disease), or end-stage dementia and Alzheimer's, she said.
Poole cited a nationwide Gallup survey in which nine out of 10 adults said, if they were diagnosed with a terminal illness, they would prefer to be cared for at home rather than in a hospital or nursing home. Folks at the End of Life Forum presented in Juneau by Dr. Lani Leary this past April expressed similar feelings, Poole said. "As we all thought about it, no one wanted to die in the hospital. Most people didn't want their families to see them struggle. And lots of people thought they would like to die in places precious to them," she said. "Yet few had planned how to make that happen."
In her lecture, "Ten Things I Wish I Knew Before She Died," Dr. Leary spoke about decisions people can make to protect members of their family and help themselves when the end of life is close. "It's important to think ahead and talk with family and friends," Poole said. "It's never too early to learn about the kinds of support and treatment that might be available to you-and it's never too early to tell people what you want." That's the philosophy of hospice and home care: giving patients and families as much control as possible over their situation, and creating the best possible quality of life even in difficult situations. Once life has ended, hospice and home care can also help families address the process of grieving through support groups, reading materials, and personal counseling.
Planning for the future doesn't need to be depressing. "Death is not a failure," Dr. Leary said. "We're all going to do it, and we might as well do it well."
Information for thinking about life-limiting illness or end-of-life issues is available from ★★CJ newsletters, publications, special events, and the lending library at 419 Sixth St., Juneau, 463-6111, or www.ccsjuneau.org.
The National Hospice & Palliative Care Organization offers helpful information about end-of-life planning, financial considerations, and other topics on its web site, www.caringinfo.org. You can also download forms for a living will, health care power of attorney, and other documents useful in expressing your wishes if there is a choice in how your life ends.
The Alaska Comfort One Program also allows individuals certified as terminally ill to let health care providers know if they wish to have life-saving measures such as CPR withheld if their breathing and heartbeat stop. The program is administered by the Alaska Department of Health and Social Services, 465-3027, or on the Web at www.chems.alaska.gov/ems/comfort_one.htm .
Marge Osborn is a Hospice and Home Care of Juneau volunteer. Hospice and Home Care of Juneau is a program of Catholic Community Service, which serves all persons regardless of their faith.