Real Life Story
Do I Have to Die in Pain?

Pain is the most common symptom among terminally ill patients and it is the one that they fear the most. Those fears are well founded.

Studies have shown that more than half of patients with cancer, the bulk of patients with AIDS, half of hospitalized patients, and a third of nursing home residents have inadequate pain management in the course of their disease. For a variety of reasons, women with cancer, minorities, children, and elderly patients receive less pain treatment than other patients. The effect on end-of-life decision-making is significant: Nearly 70 percent of Americans say they would consider suicide if they had uncontrolled pain associated with an illness.

Fear of Addiction is Unfounded

Dingbat Treatment of pain has been a difficult challenge for the medical community to overcome. One of the most persistent barriers to effective pain control has been an unfounded belief that giving patients narcotic pain killers such as morphine will lead to addiction. Over the past few years that attitude has changed among both patients and physicians, but change is happening slowly.

Dr. Richard Payne, who directs the pain and symptom management section of MD Anderson Cancer Center in Houston, and who sat on a private sector panel that developed federal cancer pain guidelines, says the risk of opiods turning a patient into a drug addict is "practically nil." Patients become physically dependent on morphine after a few days if they stop taking it abruptly. But pain experts agree they will not experience withdrawal if the drug is appropriately tapered off and discontinued.

Doctors Face Barriers

Historically, practitioners have undertreated pain because they have not been trained to recognize and assess it. In a survey of more than 1,000 physicians, 75 percent who treated cancer patients over a six-month period admitted a lack of knowledge inhibited their ability to control pain.

Another major barrier: Physicians worry that prescribing narcotics would cost them their medical license. Drug enforcement agencies at the state and federal levels aggressively monitor narcotic prescriptions; an estimated 100 doctors lose their licenses each year for overprescribing narcotics. A large proportion of physicians admit they undermedicate patients for pain symptoms to avoid getting into trouble with the law.

Other barriers: a belief among both patients and physicians that pain should be accepted as a normal part of a serious illness such as cancer and its treatment; and a fear that giving a medication too early will diminish its subsequent effectiveness. Experts in pain treatment say that for most narcotics there does not appear to be an upper dosage limit; in cancer patients, for example, what appears to be tolerance or decreased pain relief with the same dosage over time is usually a reflection of the disease's progression.

Physicians are conflicted about how to treat pain. Undertreatment prevails even though most attending medical physicians in hospitals agree that it is sometimes appropriate to relieve suffering when doing so may advance the death of a patient. According to an article in the 1995 Archives of Internal Medicine, more than a third of medical and surgical attending physicians surveyed admitted that fear of hastening a patient's death is most often the reason for undertreating pain. Nevertheless, three quarters of those physicians believe that dying patients should determine the best dosage regimen to control their pain.

Addressing Pain Openly

Dingbat Dr. Kathleen Foley, who runs the pain and palliative care center at Memorial Sloan-Kettering Cancer Research Center in New York City, says for many patients the prospect of pain can be as terrifying as the disease itself. Dr. Foley says that for many patients in the advanced stages of terminal illness, the symptom of pain becomes the disease. Doctors "need to give patients permission to talk about pain" by asking them about it, she says. And patients need to accept that they don't have to be in pain, she adds.

Three years ago, the nursing department at Sloan-Kettering sought to break down barriers to pain treatment by enhancing its visibility. Pain is now considered the fifth vital sign, along with blood pressure, temperature, pulse, and respiratory status that gets entered into the patient's medical chart. Patients are asked twice daily to rate their pain on a scale of 0 to 10. The provider places that rating on the beside medical chart in view of the doctors, nurses, and social workers treating that patient. "You don't have to be dying to get good pain control; it should be all the way through," says Nessa Coyle, a registered nurse who runs the supportive care program for the pain and palliative care division at the cancer hospital.

Coyle says asking patients about their pain has become integrated into bedside practice "just as you ask a patient about nausea and bowel movements." It's important for practicing physicians and nurses as well as those in training. In fact, all patients admitted to Sloan-Kettering are now asked to rate their pain routinely. Patients understand "that we think pain is very important and an important aspect of care," says Coyle. Raising its profile within the medical institution has empowered patients to express their pain symptoms; they learn to say it's shooting, burning, or dull. It also has facilitated the physician's ability to assess and treat pain and how it's affecting their patient's daily life. Once patients gauge their pain, they are asked how it's affecting their ability to move, to go to the bathroom, to eat, and to sit up.

Spreading the Word

The hospital is also reaching out to the community to help outpatient practitioners adequately respond to pain symptoms in patients with advanced cancers or AIDS. Before patients are released from Sloan-Kettering, the pain and palliative staff talk to the community nurse and primary doctor about pain treatment. The hospital also has a hotline for any medical practitioner seeking general advice about pain treatment, even for non-hospital patients.

Meanwhile, pain experts are hailing a move by the American Academy of Pain Medicine and the American Pain Society, which in March issued a consensus statement touting use of opiods as a "legitimate medical practice" for chronic pain symptoms. There is no such statement for non-cancer related illnesses and the groups say there is no justification for undertreatment of pain. The guidelines are meant to arm physicians with principles to follow and to implore state legislatures to pass laws that don't interfere with medical use of opiods for management of intractable pain. The national pain groups are hoping the guidelines are adopted by state medical boards, which typically decide the appropriateness of physician prescribing habits.

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