Thursday, September 26, 2002

This presentation is part of : End of Life: Beliefs and Care Initiatives

The Use of Complementary and Alternative Medicine at End-of-Life by Persons Who Die in Community-Based Settings

Virginia P. Tilden, RN, DNSc, Youmans Spalding Distinguished professor and associate dean for Research1, Linda L. Drach, MPH, research associate and project director1, and Susan W. Tolle, MD, director and professor2. (1) School of Nursing, Oregon Health & Science University, Portland, OR, USA, (2) Center for Ethics in Health Care & School of Medicine, Oregon Health & Science University, Portland, OR, USA

Objective: To examine the frequency of use and goals of treatment of seven complementary and alternative medicine (CAM) modalities by persons near the end of life.

Design: Telephone survey of family informants of a random sample of adult decedents, culled from Oregon death certificates.

Population, Sample, Setting, Years: The study population consisted of adults who died of natural causes in community (non-hospital) settings in Oregon between January and September 2001.

Our sample consisted of 250 decedents, 55% female and 14% ethnic minority. The mean age was 79, with 12 years of education. Place of death was most frequently the decedent's home (46%), followed by nursing home (38%) and foster care or in-patient hospice (16%). The most frequent causes of death were cancer (39%), heart disease (19%), and Alzheimer's disease or other dementia (10%).

Concept or Variables Studied Together or Intervention and Outcome Variable(s): Specific questions were asked about the decedent's use of CAM therapies in seven categories during the last 6 months of life. Categories included: massage, herbs/herbal medicine, lifestyle diets (e.g. macrobiotics), megavitamin therapy, relaxation techniques, acupuncture, and other CAM therapies. Respondents whose family member used CAM at end of life were also asked to delineate the main reason the decedent did so (e.g. cure, symptom management).

Methods: A random sample of Oregon death certificates was drawn on a monthly basis, with oversampling for ethnic minority decedents. Family respondents were located using death certificate information and public and private sources (e.g. published obituaries, phone directories). Family respondents were interviewed by phone 2-5 months after their loved one's death. Questions about CAM were asked at the end of a 30-minute interview about the broader experience of their family member's end of life care.

Findings: Despite limited contact information on death certificates, 72% of family respondents were located. Of those who were study-eligible, participation rate also was 72%. The 28% refusal rate is comparable to other studies of highly sensitive topics.

Fifty six percent of decedents used one or more CAM therapy at the end of life. CAM usage was especially high among ethnic minorities, who comprise 4.5% of community-based deaths in Oregon and 14% of our study sample. Seventy percent of Blacks used CAM, 64% of Asian-Pacific Islanders, 75% of American Indians, and 75% of Hispanics. This compares to 54% of non-Hispanic whites.

Massage was the most commonly used therapy at the end of life (29%), followed by herbs (19%), lifestyle diets (15%), megavitamin therapy (13%), relaxation techniques (12%), and acupuncture (4%). Twenty percent of decedents also used "other therapies that are not generally provided by most medical doctors or hospitals." These included a wide range of alternative therapies, including music therapy (2%), chiropractic (2%), and meditation/breathing exercises (2%).

The most frequent treatment goal cited was symptom management (49%). Twelve percent used CAM to slow their disease process and prolong life. Twenty six percent sought a combination of these benefits. Only 5% of CAM users felt their chosen modality might be curative for their condition.

Decedents using CAM were younger at time of death (p<.0005) and more likely to have died at home (p<.01), with a primary diagnosis of cancer (p< .05), than those who did not use CAM.

Conclusions: Rates of CAM use were higher in a dying population than those reported in previous studies about CAM use in the general population (e.g. Eisenberg, et al, 1993). Most persons using CAM sought symptom management rather than cure.

Implications: Many people at the end of life initiate the use of complementary and alternative therapies as a means of symptom management. Therefore, health professionals should routinely ask persons with advanced serious illness about their use of CAM, in order to identify potential conflicts with allopathic therapies (e.g. selected herbs and chemotherapy, specific diets and profound weight loss) and to explore patients' treatment goals and outcomes.

CAM was used far more frequently by those dying at home, a finding that may be related to both age and primary diagnosis, but may also point to the relative inaccessibility of some alternative treatment modalities in the nursing home or other community-based facilities. Patients may need assistance maintaining CAM therapies as they transfer to a new setting or as their illness progresses.

More research is needed regarding the benefits of specific modalities for symptom management at end of life.

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