Pain management still poor, panel says

By LAUREEN McMAHON

The message is clear: the management of pain for most terminally ill patients is poor throughout much of North America, so poor, in fact, that one U.S. state has actually prosecuted a care provider who refused to give adequate medication to relieve the pain of a terminally-ill patient.

The case was outlined by Oklahoma Attorney General W.A. Drew Edmonson, who joined a panel of ethicists, educators, and hospice experts to discuss pain management in a closed-circuit teleconference on April 5.

Sponsored at two local venues by the Family Funeralhome Association, the teleconference was co-sponsored by the Hospice Foundation of America and the Centre for Living With Loss, a bereavement counselling and education program of Hospice and Palliative Care Associates.

In the Vancouver area, health care providers viewed the four-hour telecast at either Hastings Park Racetrack in Vancouver or Fraser Downs in Surrey.

Attorney General Edmonson, who received the 2005 Champion for Pain Relief Public Awareness Award from the American Alliance of Cancer Pain Initiatives, said his state is committed to providing residents with the best care possible.

"If a doctor refuses to prescribe appropriate medication to treat pain and his decision results in that patient being in greater pain, he or she could find themselves in trouble with the state licensing board for departing from good medical practice."

Neglecting proper pain management, Edmonson added, is not acceptable "because the information is certainly out there."

He credited the rapidly growing hospice movement with helping uncover the fact that many people suffer needlessly.

The four-hour 13th annual bereavement teleconference was moderated by CNN correspondent Frank Sesno. Panelists came from a variety of health disciplines related to palliative care and hospice, including gerontology and pharmacology.

Dr. William Lamers, Medical Consultant to the Hospice Foundation of America, stressed that patients’ best hope for having pain dealt with effectively is through a hospice model of care, which means a team-centred, holistic, home-based, family-centred approach.

Care-givers must also, added Dr. Lamers, widen their parameters of pain measurement to include the psychological and emotional pain which accompanies serious illness.

It is critical, he said, to establish ways to continually update the information on the degree of pain a patient is experiencing.

"I know of one case where a patient was asked, ‘How is your pain?’ and he responded, ‘It’s strange, because I’ve been in hospital three months and no one has yet asked me about my pain!’

"That patient also wanted to know if the care-giver meant the pain of the disease that was going to kill him, the pain of his life when his daughter died, or the pain of having no one visit him!

"So it’s obvious that pain can mean something different to different people at different times. People must also be given time to answer their questions. Doctors should know enough by now to sit at the patient’s bedside and say, ‘Tell me about it.’"

There are different reasons why good pain management may flounder, including cultural ones, said Cornell University professor Dr. Kathleen Foley, attending neurologist for the Pain and Palliative Care Service.

Some patients, Dr. Foley said, feel compelled to remain stoic for their families.

"However, a really big problem is when doctors and other care-givers worry needlessly that medications pose a threat of addiction and so are reluctant to prescribe adequate doses of analgesics even for intractable pain.

"Pain is what the patient says it is," stressed Dr. Foley.

"We need our patients, if they are able, to give us the ‘straight goods’ on their pain. Family members may not be able to do this effectively."

A patient’s total pain must be assessed, she added, including their fatigue, anxiety, and depression as well as other social, psychological, spiritual, and existential distress.

When asked by Sesno how this should be done, Dr. Foley said, "We ask them to rate it on a scale of 0 to 10, which seems to be quite effective. Of course, in the case of children, or someone with cognitive difficulty, we have to find additional methods of assessment."

A history of taking drugs can influence the prescribing of medications, said Kelli Gershon, a palliative care nurse at the Anderson Cancer Center at the University of Texas.

"We need how to know how to deal sensitively with any history of substance abuse. There may be a need to add counselling in the case of a person who has dealt with previous stresses chemically."

At the opposite end of the spectrum, said Dr. Foley, "is the patient who doesn’t even want to take Tylenol.

"This can, however, change over time. Sometimes we find that once patients have been told they have terminal illnesses, they start to relent and accept the medication they need for pain."

Sometimes, said Dr. Lamers, patients feel they deserve pain because of sins they have committed in life.

"I see my role as just trying to listen to them," said Dr. Lamers. "I may try to negotiate the amount of pain that they are suffering and suggest that certain amounts of pain could be relieved, such as just turning over in bed, etc.

"It’s a fine line and it’s important to respect a patient’s psychological needs."

The medical experts were united in their hope that medical schools would do more to educate future care-givers in pain management.

"It’s getting better, but we still have a long way to go," said Dr. Foley.

More information is available from the Family Funeralhome Association, 604-733-2638.