Providing Information, Counseling at the End of Life
Francois Pouliot, M.D., Ph.D. and Susan Gaeta, M.D.
Providing information and counseling to patients and families about care options at the end of life is often difficult for even well-trained professionals, yet such information is essential to patient care and empowerment. We will look at the initiatives launched recently in New York and California, before assessing the situation in Texas.
New York - The "Palliative Care Information Act"
Since Feb. 9, 2011, information and counseling concerning palliative care and end-of-life options must be offered in the State of New York to patients with an illness or condition expected to cause death within six months.
According to the law, palliative care is "health care treatment, including interdisciplinary end-of-life care, and consultation with patients and family members to prevent or relieve pain and suffering and to enhance the patient's quality of life, including hospice care."
Patients will be fully informed of the options available to them, so that they are empowered to make choices consistent with their goals for care, wishes and beliefs, and to optimize their quality of life. The law is not intended to limit the options available to terminally-ill patients. Nor is it intended to discourage conversations about palliative care with patients whose life expectancy exceeds six months.
The information provided will include
Range of options appropriate to the patient;
Risks and benefits of various options;
Patients' "legal rights to comprehensive pain and symptom management at the end of life."
The information and counseling may be provided orally or in writing. If the attending health care practitioner is "not willing to provide the patient with information and counseling," he/she must "arrange for another physician or nurse practitioner to do so," or must "refer or transfer the patient to another physician or nurse practitioner."
The information and counseling must be offered, but it need not be provided if the patient refuses the offer. If the offer is declined, the attending health care practitioner should document the decision in the medical record. The practitioner should renew the offer, as appropriate, consistent with changes in the patient's condition and the treatment options available to him/her.
California - The Right to Know End-of-Life Options Act
Effective Jan.1, 2009, the Right to Know End-of-Life Options Act requires physicians to fully disclose all end-of-life treatment options so that patients and their caregivers can make their own treatment decisions.
At a patient's request a physician must provide information about palliative and hospice care, withholding or withdrawing of life-prolonging treatments, voluntary stopping eating and drinking, and palliative sedation. If not comfortable with the patient's choice, the physician must refer to another physician who will provide the care.
Texas - Discussions Around Respecting Choices
In Texas, no such law was enacted, but many initiatives to inform and counsel patients and their caregivers exist. Respecting Choices is a well known advance care planning system used by many. Developed in Wisconsin by the Gundersen Lutheran Medical Foundation, Respecting Choices does not focus on completing a document as a one-time event, a one-size-fits-all approach. Advance care planning is an ongoing process of communication integrated into the routine of patient-centered care. For more information, go to http://respectingchoices.org/about_us
Advance Care Planing at The University of Texas MD Anderson Cancer Center
MD Anderson Cancer Center has launched its own initiative about advance care planning that will be using the Respecting Choices model as background and is sponsored by the Psychosocial Council under the leadership of Alma Rodriguez, M.D., vice president, Medical Affairs and Frank Tortorella, vice president, Clinical Support Services. The focus of the initiative is to create an advance care planning process to guide best practices throughout the continuum of cancer care.
Emphasizing that advance care planning is an ongoing process of communication among patients, families, patient representatives and health care providers. Patient's prognostic information, therapeutic options and wishes for further treatment are understood and addressed to better honor patient preferences.
Please contact the co-chairs, Donna Zhukovsky, M.D., Margaret Meyer and Susan Gaeta, M.D., of the Advance Care Planning Initiative for additional information.