Compassion in Dying Federation and Other Patient Advocacy Groups Prompt Action
In December 1998, Compassion in Dying Federation, joined by other organizations concerned with end-of-life care, wrote to the Health Care Financing Administration (HCFA) asking that it investigate compliance with the Patient Self Determination Act (PSDA) as implemented in California. HCFA is responsible for enforcing compliance with the PDSA.
Summary of the issue as presented in the letter to HCFA:
Congress passed the PSDA in 1990 requiring healthcare providers to inform patients of their medical decision making rights under state law. Until now, impact of the PSDA has been chiefly limited to patient notification of options under a state's advance directive laws, such as a living will and health care power of attorney.
But an integral aspect of medical care, recognized by Congress, is the treatment of pain. To the extent state law recognizes a right to make medical decisions about the treatment of pain, Compassion in Dying's letter asserted the PSDA creates an obligation on the part of healthcare providers to inform patients of this right.
California passed the Pain Patient's Bill of Rights in 1997. This state law created an explicit right to request treatment for the alleviation of pain with the words "A patient suffering from severe chronic intractable pain has the option to request or reject the use of any or all modalities in order to relieve his or her severe chronic intractable pain." In recognizing this right, the state legislature found that for some patients, "pain management is the single most important treatment a physician can provide."
Compassion in Dying put forth the position that the term "medical care," as used in the PSDA, is defined as "the diagnosis, cure, mitigation, treatment, or prevention of disease." Clearly, the provision of medication to relieve pain is an integral part of the mitigation or treatment of disease, and is included in the term "medical care."
So it was the position of Compassion in Dying, and its partners in this effort, that since California law establishes effective pain management as central to the treatment of illness, and provides that patients have a right to request effective treatment for their pain, then the PSDA requires that California healthcare providers inform patients of this right.
HCFA agreed. It her June 25 letter to Compassion in Dying, Nancy-Ann Min DeParle, HCFA Administrator, first agreed that "medical care" encompasses the provision of pain treatment. She further agreed that patients in California must be informed of their right under state law to request or reject specific pain medication. She then noted that HCFA has "the legal authority to require that providers furnish information on the right to pain treatment to patients."
Ms. Min DeParle has forwarded HCFA's ruling to its San Francisco HCFA Regional Office with instructions for its officials to investigate Compassion in Dying's claim. Compassion in Dying hopes the ruling can be implemented quickly and effectively to help prevent unnecessary end-of-life suffering in California. Compassion in Dying will work with the HFCA Regional Office to begin the process of implementation of the Administrator's determination and to ensure that patients are provided information about pain care options.
This article was provided by Compassion in Dying. It is a part of the publication Compassion in Dying.