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Wednesday, November 20, 2002Although more than 70 percent of Americans say they would like to die at home, only 25 percent of them do. The rest are often hooked up to machines in intensive care units, the report says. About half of all deaths occur in hospitals, but fewer than 60 percent of hospitals offer specialized end-of-life services. Only 14 percent offer palliative care, which means special care to make sure a dying person is comfortable without working to extend a doomed life. ....Just 23 percent of hospitals offer hospice care, which is designed to do just this. "Most states have only fair hospice use, with about 12 to 25 percent of deaths including a hospice stay," the report says. Most dying people get only a week in a hospice, when 60 days would be much better, the group found. And fewer than half, 42 percent, offer specialized pain management services. ..."In any given state, at least one in four nursing-home residents is experiencing pain for at least two months without appropriate pain management," the report says. "A study of cancer patients in the ICU found that 55 to 75 percent had moderate to severe pain, discomfort, anxiety, sleep disturbance or unsatisfied hunger or thirst." A survey of 1,000 adults, done by Lake, Snell Perry and Associates for the group, found that 75 percent had lost a loved on in the past five years. Sixty percent of those surveyed gave the U.S. health care system a rating of fair or lower, and 25 percent said it was poor. It found that 93 percent believed improving end-of-life care was important. God, that sounds horrible. But, I’d like to know more about those people. Sure, most people, if asked, will say that they prefer to die at home, but then most people, when acutely ill with congestive heart failure or pneumonia, or an exacerbation of emphysema, or in the throes of a heart attack, want to be taken to the hospital and treated. Reading this, I couldn’t help but think of one of my patients with very severe emphysema. I’ve discussed end-of-life issues with her, and she says she doesn’t want any heroic efforts. But every time I have to put her in the hospital, I ask if she would want to be put on a ventilator if things get really bad and she says “yes,” even though I remind her that there’s a good chance she may never come off of it once she goes on. Her reply is, “If there’s even a small chance of making it, I want to take it.” So, while she has an ideal vision for her death, it’s only for the death that she sees far in the future, not the death that’s confronting her in the here and now. That’s why this survey is more than a little cagey. It compares the ideal with reality. It’s like asking people what they wish their yearly earnings were, comparing that figure to the amount they actually make, and then criticizing the economy because the two don’t match. In that gulf between the ideal and the reality lies the universal fear of facing death. To be enrolled in hospice, a patient has to decide to forgo all further treatment. This is a tough decision for a lot of people. Even cancer patients often want to keep on trying “one more thing” in hopes of prolonging the inevitable. It’s even harder when the illness isn’t something as final as cancer. Patients with congestive heart failure and emphysema, for example, go through a series of disease exacerbations that leave them weaker than before, but still functioning. It’s difficult to know which of those exacerbations is going to be the final one, and most people don’t want to give up until there’s absolutely no hope. There are other problems with it, too. As Gruntdoc points out, a significant proportion of those people who “die in the hospital,” are found dead at home and then declared dead in the hospital emergency room. They get classified as a hospital death, not a home death. I was surprised, though, by the low number quoted for hospice care at hospitals, and again I wonder if that’s a matter of classification. When they say that “just 23 percent of hospitals offer hospice care,” does that mean the hospice has to be on the hospital premises and run by the hospital to qualify? Our community has a wonderful hospice program, but it’s separate from the hospital. And that isn’t to the detriment of the patient, either. The hospice is a much more pleasant environment - more like a five star hotel than a hospital. Each room has French doors that open out onto a garden, and there’s room for the family to all fit comfortably around the patient. And no matter what time of day or night you call them, someone will come to the hospital to assess the patient and enroll them in the program if needed. Usually, within one or two hours of calling them, the patient gets transferred. I suspect that there are a lot of communities who have arrangements like this, and that the numbers from Last Acts are on the short side of reality. Gruntdoc mentions another aspect of end-of-life care, though, that’s also very important - advance directives. His impression is that doctors don’t discuss this enough with their patients. There’s probably some truth to that. There’s only a limited amount of time to spend at each visit with someone, and a lot of it gets taken up with other issues that need to be addressed, especially in the elderly. Then, too, a lot of patients shy away from the discussion. They just don’t want to think about it, or they suspect that your motive is to do them in. Even patients with end-stage chronic diseases often get upset when you mention it, taking it as a signal that you're giving up on them. Then, there are the people who discuss the issue with their physician, but never with their families. They just find it too difficult to do. Again, my patient with severe emphysema comes to mind. Her daughter didn’t realize how serious her mother’s illness was until she happened to be present one day when her mother had to be admitted. When I asked her mother my usual question about life support, it made both the patient and the daughter cry. It’s better that the issue was brought out into the open, but there are a lot of families where it never is. And Then There’s the Pain: One of the more disturbing things about the report, is its summation of the status of pain in the dying and the hospitalized. This always seems to be the true issue underlying every death activist group. They see the elimination of all complaints of pain as the ultimate goal. But, as I’ve discussed before, pain isn’t that simple. Complaints of pain don’t equate with true pain. Look at JFK. He didn’t complain a lot, but all those around him could see that he was in pain. If the death activists had their way, he would have been euthanized. Then, there’s the opposite side of the coin - the people who complain vocally about even the most minor pain. They walk and talk without any difficulty, but if you ask them, they’ll go into great detail about the amount of pain they’re having. It’s their only topic of conversation. Sometimes, it’s their only means for getting attention. To say that one in four nursing home patients have untreated pain for at least two months at a time doesn’t really tell us much about the state of nursing homes. I would be much more concerned if nursing homes were putting people on higher and higher morphine doses until they stopped complaining. Too often, that point would only come when they stopped breathing, although it would probably be a relief to everyone who has to listen to the complaints. And that’s what makes me most leary of these death activist groups. Are they really concerned with quality of life issues, or is their primary goal to achieve the acceptance of euthanasia? posted by Sydney on 11/20/2002 08:17:00 AM 0 comments 0 Comments: |
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