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In the NewsIn PrintTelegram & Gazette Study shows death is painful for 20%Worcester families tell needs of dyingBy Elizabeth Cooney TELEGRAM & GAZETTE STAFF When one out of five people is dying in pain in Worcester, that’s disturbing. Dying people are treated with dignity and respect in Worcester, but one out of five patients do not have their pain and uncomfortable symptoms relieved as death approaches, a new survey shows. Family members of 900 people who died in Worcester in 2004 were randomly selected from 3,045 death certificates to receive surveys asking them what their loved ones thought was important at the end of life. Deaths of children under 18 or of people who died at the time of arrival at a hospital were excluded. There were 373 responses to the questionnaires, which were sent six months after the death of the person for whom they were identified as next of kin. The project was sponsored by the Central Massachusetts Partnership to Improve Care at the End of Life. Dr. David A. Kaufman, chairman of the coalition’s health care work group, will present the findings today at the National Hospice and Palliative Care Organization’s conference in San Diego. “By and large, this medical community does an extremely good job at providing dignified and compassionate end-of-life care,” said Dr. Kaufman, who is chief of critical care medicine at St. Vincent Hospital, in an interview last week. “We still have things that need to be done better. We’re learning where they need to be done better, and the goal of the partnership is to try to provide support in those areas that can lead to a better dying experience for people in Worcester.” Pain control is clearly one area to target, even though other factors were ranked as more important, the survey showed. Being treated with dignity and respect, being kept clean and being spoken to in their own language were rated higher than having uncomfortable symptoms or pain controlled. Being pain-free is not a universal expectation because some people, when faced with a choice between having their pain relieved and their consciousness dulled, will choose to be in pain, Dr. Kaufman explained. But among the 94 percent of people who wanted uncomfortable symptoms such as nausea or trouble breathing relieved, only 80 percent had that always or usually achieved. The same was true for the 93 percent of people who wanted their pain controlled. “We thought this was terrible. When one out of five people is dying in pain in Worcester, that’s disturbing,” Dr. Kaufman said. “We absolutely have all the modalities required to ensure that no one dies in pain. So it should never happen.” For Dr. Joan M. Teno, professor of community health and medicine at Brown Medical School in Providence and a nationally known expert on end-of-life care, pain should be a rallying point. She was not involved in the survey, but said the attitudes it reports are consistent with national studies. “I was struck by the important opportunity to improve on pain and symptom management,” she said. “Where I would want to set the bar here is ‘always’ relieving pain. ‘Usually’ relieving pain is unacceptable.” Other measures important to the dying were: having significant people notified and present at the time of death; mental alertness; anxiety control; nursing care; communication, and knowing what to expect. How well those expectations were met depended on where the person died. According to the survey, 59 percent of deaths occurred in a hospital; 25 percent in nursing homes; 10 percent at home, and 5 percent in hospice residences. Hospice services were provided in 22 percent of deaths, no matter where the person died. While there was not a highly significant statistical difference in how well symptoms were controlled depending on the venue, there was a consistent trend. Hospice residences came out on top in pain control, mental alertness, anxiety control and other symptom relief. Nursing homes performed worst. Similarly, the trend suggested hospice services in all locations made more of a difference in symptom relief, as well as in having nurses meet needs, knowing what to expect, having someone to listen to and expressing wishes for care. The survey also showed more satisfaction with their care among people who had appointed a health care proxy to make decisions for them and people who had recorded a “do not resuscitate,” or DNR, order. Dr. Kaufman said the survey showed, “When you have someone to speak on your behalf when you can’t, things like symptom control get addressed in a much more vigorous way.” He said, “DNR orders make a huge difference in ensuring that you will die a comfortable death, and they also ensure you have more autonomy, more information is shared, and your wishes are more likely to be expressed and followed.” The partnership plans to share its data privately with individual practitioners and institutions to improve care of the dying, particularly as it pertains to 20 percent of people dying in pain. “This is a snapshot of what it’s like to die in our community, where our strengths are, where some of the deficiencies are,” Dr. Kaufman said. ###
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