NEWS

U.K. Initiative Aims to Broaden Definition of Palliative Care

John Illman

Dame Cicely Saunders, M.B. B.S., is one of Britain’s most celebrated doctors. Originally trained as a nurse, she launched the modern international hospice movement in 1967 by founding St. Christopher’s Hospice in London. As the U.K. newspaper The Daily Telegraph reported on Sept. 5, she is nationally renowned as "a woman who has dedicated her life to improving the way people die." The popular view in Britain is that no one else in the world has done more to alleviate pain and suffering.

But the idea that palliative care helps people to die with dignity and without pain has been promoted at the expense of the pain experienced by newly and recently diagnosed cancer patients, according to palliative care specialists.

"Most people, public and professional, don’t understand what palliative care is," said Sam Ahmedzai, M.B. Ch.B., professor of palliative medicine, University of Sheffield. "Many people assume it is a euphemism for terminal care. The World Health Organization (WHO) definition we’ve been working with since 1986 does indeed stress ‘incurable disease.’ WHO has now broadened its definition, but the way palliative care in the United Kingdom and other countries has been configured is still very much end stage."



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Dr. Sam Ahmedzai

 
The validity of his concern has been confirmed by Britain’s largest-ever survey of cancer patients. Two-thirds of the 65,000 patients in the government survey by the Department of Health complained about experiencing pain or discomfort during their first hospital visits. Compared with patients served by trusts ranked as the "best," three times as many patients served by the "worst" trusts complained that the hospitals’ efforts to address pain control were inadequate.

"We have plenty of specialists who know how to assess pain and administer appropriate therapy, but they don’t get to see the patients at the appropriate time," Ahmedzai said. "Patients are referred [to palliative care specialists] at a very advanced stage, typically after they have failed initial therapy and have progressive disease, say 6 to 12 months down the line."

The general perception among palliative care specialists in Britain is that, after 30 years of the United Kingdom leading the way, the United States now has the innovative edge in pain control. In fact, one U.S. society has described pain as the "fifth vital sign," after blood pressure, pulse, respiratory rate, and temperature.

"We need to follow the U.S. example," said Joanne Rule, chief executive of the CancerBACUP national charity. "If we don’t routinely assess pain in every consultation, patients will not get the level of care they need."

A new research initiative in the north of England by Ahmedzai may help to restore the United Kingdom’s pioneering reputation in pain control. He and colleagues are developing a "user-friendly" questionnaire to encourage patients and their caregivers to take the initiative in evaluating the patient’s pain and to seek palliative care if necessary. Now under development, the questionnaire will be made available in public libraries and on the Internet, as well as in health centers and hospitals. There will be one version for patients and another for their caregivers, and still another version for general physicians, nurses, social workers, and other healthcare professionals.

"We see no reason why patients shouldn’t trigger their own referrals," Ahmedzai said. "Many patients try to hide their pain because they fear hospital readmission or morphine therapy. [Caregivers] often bear a heavy burden as a result."

Patients and caregivers completing the questionnaire will respond to a series of questions about their pain and other physical and psychosocial problems. Their scores will provide the basis for advice as to whether they should seek palliative care immediately or repeat the questionnaire at a later date to monitor change.

The hospice movement may have moved on since Dame Cicely launched St. Christopher’s, but her key message remains as important today as it was in the 1960s. Dame Cicely said: "I didn’t set out to change the world. I set out to do something about pain. ... In 1964, I started lecturing with slides and personal stories. I’d just turn the lights out and let the patients speak. This gave a voice to the patients and I’ve always said that the patients are the real founders of the hospice movement. ... There’s still a long way to go, but as long as people keep listening to patients, we’ll be all right."



             
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