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Compassion Leads Effort to Notify Patients of Pain Treatments

January 1999

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Pressing for a new role for the federal Patient Self Determination Act, (PSDA) Compassion in Dying Federation wrote to a federal regulatory agency on December 16, 1998 and asked its assistance to improve the pain treatment patients receive. The letter seeks to turn a federal law requiring hospitals and nursing homes to inform patients of their rights to make health care decisions into a tool to inform patients about their rights to effective pain treatment. The Health Care Financing Administration (HCFA) received the letter as the agency that administers the Medicare program and regulates every institution and provider accepting Medicare patients.

This project is another in a series of national initiatives by Compassion in Dying Federation to improve care of the dying. It applies an innovative approach to effect real and immediate change in the care of dying patients. The highly esteemed firm of Heller Ehrman White & McAuliffe in San Francisco assisted Compassion in our legal investigation and analysis of the meaning and scope of the PSDA. After several strategy conferences with medical and legal experts throughout the country, the plan to seek action from the Health Care Financing Administration emerged.

Behind the letter is Compassion's concern that patients in California and elsewhere are needlessly suffering in pain that could be alleviated if only they were properly informed about their rights to adequate pain treatment. HCFA currently enforces the PSDA to have providers inform patients of their options under state law to fill out living wills and other advance directives and state their wishes about life sustaining treatments. But the record shows Congress also thought options under state law for pain treatment were important.

California's Pain Patient's Bill of Rights (PPBR), enacted in 1997, establishes a right to request "any or all modalities" to alleviate severe and intractable pain. Compassion's letter to HCFA states that providers in California should be informing patients about their rights under the PPBR, and HCFA should be ensuring this notification.

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Prominent national health care groups joined Compassion in its letter to HCFA, including Choice in Dying, Americans for Better Care of the Dying, American Pain Foundation, American Academy of Pain Management and the Medicare Rights Center. Other organizations sent their own letters supporting Compassion's initiative and asking HCFA to take on the new role. These organizations are California Hospice Association, the American Bar Association, Pain and Policy Studies Group at the University of Wisconsin and Southern California Cancer Pain Initiative.

Kathryn Tucker, Director of Legal Affairs for Compassion in Dying Federation said, "Inadequate pain care is widespread. If patients are aware of their rights to receive pain medication, they are more likely to do so. Fewer patients will suffer needlessly if the right to notification about the Pain Patients' Bill of Rights is enforced. The laws are clearly written to prevent suffering. There is no excuse for pain to be under treated in our advanced health care system."

According to studies cited in the letter, "pain is prevalent and is frequently under treated. Adequate pain control is not being achieved in a significant portion of patients even though pain could be well controlled for more than 85% of all cancer patients."

"This effort will raise both patient and physician awareness of the importance of treating pain and further strengthen patients' rights to participate in the decisions about their medical care," Tucker said. If successful in enforcing notification about state pain laws in California, this initiative could apply to every state where pain management is addressed in state law.

The letter to HCFA is available for review, or can be read at the Compassion in Dying website, compassionindying.org.


A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by Compassion in Dying. It is a part of the publication Compassion in Dying.
 
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