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Forum to focus on end-of-life care

Pain is a major issue for people who are dying. But nationwide, doctors don't always do a good job managing pain. And Utah is no exception.

That's the feeling of Dr. Jay Jacobson, who believes that many people suffer unnecessary pain at the end of their lives. Jacobson, a physician, ethicist and member of a coalition examining end-of-life issues, and Helen Rollins, a nurse case manager at LDS Hospital who heads the Utah Hospice Association, will be featured Saturday on the Deseret News/Intermountain Health Care Hotline from 10 a.m. to noon. They will answer questions about death-related issues like pain management and advance directives, hospice vs. hospitalization and more.The first barrier to effective pain management comes from the patient who assumes that a terminal illness naturally means unbearable pain and doesn't ask for help. If the patient doesn't ask, the caregivers can't know help is needed.

Relatives are often reluctant to pass on a request for pain medicine for fear it will make the patient sicker, be addictive or "look bad" to others. And when the request is passed on, many physicians don't respond well, Jacobson said.

He divides physicians' barriers to providing good pain relief into three categories: Practice concerns, ethical concerns and legal concerns.

The major practice concern is the well-known fact that achieving pain control sometimes requires compromising other body functions, which can shorten life. But doctors and patients should talk about what the patient wants in such a case, he said.

Some doctors won't consider it because they believe it's never right to shorten life. In the face of such ethical concerns, a patient who feels strongly should talk to the doctor about it and even request a new doctor, if needed.

As for litigation concerns, when a doctor and patient have thoroughly discussed pain and its management and weighed the options, "there are no examples where families have successfully litigated," Jacobson said.

Part of the problem may be simple reflex. Doctors worry any patient will become addicted to certain medications. And that reaction spills over "even in that sad situation. That concern about addiction is, we believe, in end-of-life care irrelevant."

But the biggest problem may be simply a lack of complete knowledge about pain treatment options, Jacobson said. Pain management has changed drastically. Most physicians feel competent to deal with it -- and many are. But "physicians haven't all stayed as knowledgeable about that as they should be. And some seem to be reluctant to ask for a consultation because they feel they're supposed to know all about it."

The problem extends beyond end-of-life care. "I'm not sure we're doing such a good job with people who are going to live, either," Jacobson said.

Many of the medications are quite new, but some doctors are more familiar with old standbys and not aware of alternatives. "There's too much information out there for all of us to be expert in everything," he said.

And pain management is about more than just nerve blocks, he said. A lot of pain is made worse by stress and anxiety. Pain experts know that, "while some, like myself, are used to giving pain medicine."

There's a lot more to caring for one who is dying than just dealing with pain. Jacobson worries about other symptoms, like nausea, diarrhea and skin problems that can accompany disease. Even with terminally ill patients, those symptoms need to be addressed.

It's hard. Physicians want to cure disease. When someone obviously is going to die, it's easy to lose track of some of the side issues that increase discomfort.

In all things, conversation is good, Jacobson emphasizes. Whether the question is what to expect from the course of a terminal disease to treatment options, patients must really talk to their doctor. That's especially true if they're not satisfied with the care they're receiving.

"When a patient comes to me and asks for more, or tells me what I'm doing is not good enough, I either try to do more or ask for help. I think if patients ask for more, they are very likely to get it."

And, he adds, no one hesitates to fire a house painter or a roofer who doesn't do a satisfactory job. "You ask them to change, and if they don't you get another person."