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A Changing Impulse: Will to Live Fluctuates in Terminally Ill Patients

The Longest Pain: The Suffering of Children with Cancer

Whose End of Life Is It, Anyway?

Why Is Hospice Hidden?

A Rest in Peace


March 28, 2001
Too Little, Too Late: Treating the Pain of the Terminally Ill
By Leah Shafer

pain management illustration: Jason Stout
Jason Stout

first letter dying is a normal part of living. But pain does not have to be a normal part of dying. Although pain is quite treatable -- even the worst pain associated with terminal illnesses -- medical literature is packed with stories and studies of undertreated pain.

"Pain relief has just never been a priority, and that's very sad because the thing that patients fear the most is pain," says Warren Wheeler, M.D., a hospice and palliative care physician and president of the Ohio Pain Initiative, an organization that works to educate medical professionals and the public about pain control and treatment. Palliative care is the specialized practice of end-of-life care -- the humane and compassionate treatment of dying patients and the loved ones they leave behind.

For patients facing the end of life, pain management is an acutely important issue; far too often, pain is undertreated, underestimated, or overlooked. But good news is on the horizon: There is a growing awareness of this problem in the medical community. More doctors are getting trained to meet their dying patients' pain prevention and alleviation needs, whether this means administering narcotic pain relief, non-narcotic pain relief, or alternative therapies.

Treating the whole person

The pain of a terminally ill person is multifaceted. Physical pain, especially in advanced cancer, is the most obvious type and one that is largely treatable with painkillers -- including opiates, narcotics derived from opium; nonsteroidal anti-inflammatory drugs, like aspirin and acetaminophen; tricyclic antidepressants; and nontraditional therapies.

But there is more to the picture than the pain of the physical body. Terminal-illness pain management is a multidisciplinary discipline; it involves looking at the patient as a whole person, with emotional and spiritual needs as well as bodily ones.

"Pain is physical, psychological, social, and spiritual or existential, depending on the patient's beliefs. It's hard for professionals to think in those terms -- treating the whole person rather than just the disease," Dr. Wheeler says.

Whole-patient therapy could include not only traditional pain management using medication, but also physical therapy, massage, spiritual counseling, grief support, neurostimulation, acupuncture, visualization, and aromatherapy.

For instance, therapies that emphasize relaxation -- like massage, meditation, or aromatherapy -- can help a patient feel more in control of the situation and perhaps even increase a patient's ability to tolerate pain, Dr. Wheeler explains.

But Dr. Wheeler emphasizes that narcotics are the cornerstone of effective pain relief. "My own experience is that [alternative therapies] play a small role when it comes to managing pain associated with a malignant illness, because it is so severe," he comments. "The pain of dying can be very, very severe." As part of an overall treatment plan, alternative therapies are valuable for increasing patient comfort, relaxation, and well-being -- but they aren't useful for the relief of intense pain.

Unfortunately, an integrated approach to pain treatment is not common. Recent studies in the Journal of the American Medical Association, the British Medical Journal, and numerous other publications tell us that dying patients have a variety of needs that aren't being met, and that such patients frequently die in pain. A 1998 study reported that at least 50 percent of the family members of the recently deceased that were surveyed believed their loved ones had suffered pain in the final week of life. Another study found that 50 percent of the terminally ill people surveyed who could communicate had moderate to severe pain at least half of the time in their final three days of life.


For patients facing the end of life, pain management is an acutely important issue; far too often, pain is undertreated, underestimated, or overlooked.


Many medical professionals are uncomfortable discussing death with their patients; this can be an obstacle to discussions of pain management. "Patients come to a physician to relieve suffering, but [physicians] fear their own mortality -- this prevents them from being present, [and thus they] avoid discussing death," Dr. Wheeler says.

Another part of the problem is that medical schools don't adequately prepare their students for dealing with end-of-life issues.

"Pain management is not taught in the schools of medicine, nursing, and pharmacy," Dr. Wheeler explains. "I teach a class on pain management and palliative care to senior medical students, and it's only two hours -- that's only two hours in their entire four years that they hear anything about pain management and palliative medicine. How can you possibly be an expert when you've only heard a two-hour discussion?"

There are other major barriers to adequate pain management, Dr. Wheeler says. The physician must not only know the nuts and bolts of specific pain medications, but also be familiar with the larger issues involved. Also, there are political and legal barriers to pain management resulting from societal beliefs about the role of narcotic pain relievers -- what might be termed "opiate-phobia."

Finding pain relief, not addiction

When other therapies fail, doctors frequently move terminally ill patients to narcotic pain relief. Severe pain almost always calls for strong narcotics, the most common of which is morphine. The goal of narcotic therapy is pain prevention, not pain relief, so narcotics are administered in regular doses around the clock, as opposed to on an as-needed basis.

For various reasons, some patients and their families may resist strong narcotic therapy or want to avoid it altogether. One reason for this is that starting narcotic therapy may mean having to face up to the seriousness of an illness and its prognosis. It can also be disturbing for family members to see a loved one "doped up" during the final days of life, even though the alternative -- watching that person suffer in pain -- isn't pretty either.

But one unsubstantiated misgiving about narcotic therapy stems from the notion that such drugs will somehow turn a patient into an addict. As a culture, we've focused an enormous amount of energy on anti-drug messages, so it's not surprising that such a sentiment is affecting the valid medical use of narcotic therapies.

Mellar Davis, M.D., medical director of the Harry R. Horviz Center for Palliative Medicine, in Cleveland, Ohio, explains that addiction is a distinct problem that is different from the tolerance a patient will experience with narcotics after a time. Gaining a tolerance means that, over time, a patient will need larger doses to get pain relief, says Dr. Davis. Addiction, on the other hand, involves the abuse of a substance and a psychological dependence -- taking the drug in spite of the havoc it brings.

The risk of addiction should not be an issue among terminally ill patients who seek pain relief, since cessation of treatment will come only with death. The unjustified fear of creating terminally ill "addicts" takes away from what should be the primary effort: the comfort of the patient.

"The incidence of addiction is extremely low, since we're dosing for pain -- we don't see addiction as a major problem among terminal patients," explains Dr. Davis. "Among the terminally ill, the notion of addiction is really not relevant at all."

Doctors must also face the real fear of regulatory scrutiny by state and federal drug enforcement agencies, as well as the state boards of medical examiners. In some instances, doctors have had their licenses revoked for the overprescription of opiates. These realities have a chilling effect on the legitimate prescription of opiates for pain relief.

"Stringent legislation reduces the appropriate use of opiates," Dr. Davis says. "The proper treatment of pain becomes more difficult. More people have uncontrolled pain because doctors fear law enforcement, potential litigation, or fines for treating patients who are in pain."

About a dozen states have passed legislation that protects physicians from prosecution or civil suits associated with prescribing opiates, provided that the medicine was prescribed judiciously and with the best interests of the patient in mind.

Palliative care for pain

Palliative care focuses on the treatment of the whole patient; it stresses comfort, support, and dignity in death for people facing a terminal illness. With a team of medical and other experts, patients can make the most of their final days; many even learn that pain does not have to be a part of the dying process.

If you're desiring palliative care for a loved one, first make sure a physician is licensed by the American Board of Hospice and Palliative Care Medicine. Physicians with this license have extensive training in dealing with the pain of dying. If possible, you should discuss the options with both the dying person and the physician.

Dr. Wheeler says he's learned that the benefit of hospice is not just for patients. He has worked with various hospice programs since 1978, and has found that this experience has improved his own quality of life.

"By treating the terminally ill, you move into their community, you become sensitized to your own mortality, you suffer with your patients, and when they die, part of you goes with them," Dr. Wheeler says. "It makes you a better person, a better physician."

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