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End-of-life concerns emerge in survey.

Byline: THE HEALTH FILES By Tim Christie The Register-Guard

When the time comes to leave this world, most of us want the same things: We want to be at home, comfortable and free of pain, and surrounded by loved ones.

But a new survey of community attitudes on death and dying in Eugene and Springfield finds significant gaps between what people wanted for themselves and their loved ones at the end of life and what they received.

The survey's organizers hope the results will get people talking about what they want at the end of life, and to raise awareness about hospice.

The two most important findings to emerge from the survey are the pervasive concerns people have about pain and symptom management, and the overwhelming desire people have to die at home, said Patricia Moran, chief researcher for the survey.

For instance, 98 percent of respondents said their loved one would have preferred to die at home. But when asked where their loved one died, respondents reported that 33 percent died in a hospital, 27 percent at home with hospice care, and 17 percent at home without hospice. The remainder died in other settings.

When it came to pain management, only 38 percent of respondents said their loved ones' pain had been managed "very well."

About 44 percent ranked pain and symptom management as the top concern of their loved one in the last months of life.

For themselves, 58 percent said freedom from pain would be "extremely important" when they're dying.

At the same time, many people voice concerns about becoming addicted to pain-killing drugs. That surprised Jennifer Wagner, executive director of the Pain Society of Oregon, who feels pain management should be the top priority. People "shouldn't be concerned about being addicted in the last few months of life," she said.

The survey was sponsored by three local community coalitions: Partners to Improve End-of-Life Care, the Pain Society of Oregon and the Oregon Palliative Care Foundation.

A 10-page survey was mailed to 1,000 households in Eugene and Springfield last fall; 30 percent were returned, which organizers said is among the highest ever achieved for surveys on death and dying.

The survey posed a wide variety of questions about end-of-life care, including caregiving, pain management, communication with health providers, spiritual needs, preferences for types of care, and attitudes about death and dying.

Moran, the researcher, said the most direct way to improve end-of-life care is to increase the number of people who receive hospice care.

Hospice care, including any drugs and medical equipment involved, is covered by Medicare and most commercial insurance. But before a doctor can refer a patient to hospice, he or she must determine the patient has six months or less to live.

The survey queried the community on other issues, including:

Spiritual needs. About half the respondents said their loved ones' spiritual needs were met well at the end of life. Forty-seven percent said a religious or spiritual person visited their loved one, and another 15 percent said this had not occurred but would have been helpful.

Communication with health providers. Less than half the respondents, 44 percent, said they had good communication with doctors when a loved one was dying, while 59 percent reported good communication with nurses.

Complementary and alternative care. Relatively few respondents reported their loved ones had used some form of complementary care, such as massage or guided imagery, at the end of life, although many said that kind of care would have been helpful.

For instance, 19 percent said their loved one used massage (the most common reported type of complementary care), while 28 percent said it was not used but would have been helpful.

Local hospice providers said they hoped the survey would make more people aware of hospice.

"Some people have a fear if they go into hospice, they've given up everything and they're just going to die," said Mardee Lorenz, manager of Cascade Hospice in Springfield (formerly McKenzie-Willamette Hospice). "They have a concept they'll die faster if they go in hospice."

In fact, sometimes people live longer and feel better because hospice workers do a better job of managing their symptoms, she said.

Mark Newson, manager of patient services for Hospice of Sacred Heart in Eugene, said the survey is "a pretty accurate reflection of what we see in our regular practice," particularly when it comes to pain management and spiritual issues.

He said he hoped the survey would spark both professionals and lay people to demand that health providers and spiritual leaders provide the support they need when dying.

"These are basic human dignity issues that we're dealing with," he said.


For more information on end-of-life issues and the community survey, contact:

Partners to Improve End-of-Life Care: www.seriousillness .org/lane

Home Instead Senior Health Care: 485-2273.

The Pain Society of Oregon: www.painsociety .com or 345-7300
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Title Annotation:Health
Publication:The Register-Guard (Eugene, OR)
Date:Nov 15, 2004
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