Family members – particularly wives, daughters, and sisters – are the primary caregivers for millions of terminally ill patients in this country, often serving as the sole providers of an array of homemaking, transportation, nursing, and personal care needs. According to a groundbreaking study published today in the New England Journal of Medicine, 96 percent of primary caregivers – those providing patients with the most assistance – are family members, and 72 percent are women.
The research found that less than 20 percent of patients received paid caregiving in addition to family assistance, and the proportion of assistance provided by non-family volunteers was negligible.
More than 15 percent of terminally ill patients were found to rely almost entirely on paid assistance to meet their caregiving needs. These patients tend to be unmarried, poor, and elderly. Compared to other patients, they are also significantly more likely to have unmet care needs.
The study is the first to examine caregiving needs among dying patients with a range of illnesses. It is one of the few studies on caregiving to be conducted in more than 10 years, reflecting the impact of recent efforts to reduce hospitalizations and to shorten hospital stays. The study's findings shed new light on patterns and disparities in meeting the caregiving needs of people with terminal illnesses -- and raise serious questions about the future of caregiving for these patients.
"What's quite clear from the data is that families bear a huge responsibility in caring for people who are dying," said lead study investigator Ezekiel J. Emanuel, M.D., Ph.D., chair of the department of bioethics at the National Institutes of Health. "In effect, they have developed into a separate, unpaid service sector, filling a tremendous need that is not falling on the commercial or the pubic health care sector."
But the demographics of families are changing, as people need to work, continue to divorce, live longer, and move to different parts of the country, making it more difficult for family members to provide care. As a result, Dr. Emanuel believes it is likely that an increasing number of terminally ill patients will rely on paid caregiving assistance. "The problem then becomes: Who will pay for these services once family members are no longer available to provide them? This is an issue that insurers and health care policy makers will have to consider for the baby boom generation," he said.
For the caregiving study, approximately 1,000 terminally ill adults and their primary caregivers were interviewed between March 1996 and March 1997. Patients and caregivers in the study came from six randomly selected cities – Birmingham, Ala.; Brooklyn, N.Y.; Mesa County, Colo.; St. Louis, Mo.; Tucson, Ariz.; and Worcester, Mass. Patients were located by referral from their physicians. The most common illnesses among them were cancer, heart disease and chronic obstructive pulmonary disease. (Patients with HIV/ADIS were ineligible for this study.) More than 90 percent of the patients were living at home; however, patients that were hospitalized or living in a nursing home or a residential hospice were included in the study.
The study is one of eight research components funded by the Commonwealth Fund and the Nathan Cummings Foundation in an unprecedented effort to expand the nation's understanding of the dying experience and find ways to improve it. The Commonwealth-Cummings Project on the End of Life was directed by Dr Ezekiel Emanuel and Linda L. Emanuel, M.D., PhD., vice president of the Institute of Ethics, American Medical Association. Other research components of the project will explore issues such as euthanasia and suicide, the impact of managed care on terminally ill patients, pain management among the dying, and the inner life and spirituality of dying patients.
Among the other major findings from this study:
- Women are doubly affected by caregiving needs at the end of life. Nearly three-quarters (72 percent) of all caregiving responsibilities for terminally ill patients fall on women. Yet when women fall sick with a terminal illness themselves, they must rely on paid help to a significantly greater extent than men. This is true even among women who are married. For instance, 33 percent of men rely on paid assistance for personal care. Among women, that rate is nearly double (58 percent).
- Volunteer non-family assistance in meeting the caregiving needs of terminally ill patients is astonishingly low. Only 4 percent of patients in the study had primary caregivers who were not family members and less then 3 percent of patients needing care reported receiving any volunteer assistance at all. "Death is a frightening experience," noted Dr. Ezekiel Emanuel "Caring for a dying person in America is not something people volunteer to help do."
- Patients dying of cancer have fewer caregiving needs, fewer unmet needs, and rely less on paid assistance to meet their caregiving needs than patients with other terminal illnesses such as heart disease and emphysema. The researchers observe that most attention directed toward the terminally ill during the past two decades has focused on cancer patients. As a result, their needs have been better delineated than those of other patients, and programs have been designed to meet their needs. However, those programs may not apply to patients with other terminal illnesses.
- African-Americans are less likely to rely on their families, and, therefore, more likely to require paid services than white and Hispanic patients. This finding appears to be related to the fact that African-Americans are significantly less likely to be married or living with a partner than whites or Hispanics.
These results have four policy implications:
- Recent efforts to reduce the use of paid caregiving assistance are likely to have an adverse impact on many terminally ill patients. Policies such as caps on reimbursement, benefit limits, and other interventions have been used to reduce the use of home health care services. These policies are likely to hit hardest those patients who are most vulnerable and who rely most on paid assistance: women, African-Americans, widows, and older patients. The researchers recommend that the impact of these policies on the terminally ill be thoroughly considered before they are widely implemented.
- Men, friends, and colleagues need to be more actively engaged in caring for terminally ill patients. Religious, social, and other organizations must become more actively engaged in assisting with the caregiving needs for people who are dying.
- Policy makers need to consider the implications of demographic changes on the needs of the terminally ill. Because these changes often result in less stable family structures, dying patients in future decades may increasingly rely on paid caregiving assistance. This will place additional demands on home care services and will increase health care costs.
- Additional research on the caregiving needs of terminally ill, non-cancer patients is needed. Data from the study suggest that these patients have greater unmet needs than cancer patients. More data are required to develop appropriate care programs for non-cancer patients.
"Caregiving is an extremely important issue for women, and will have a strong impact on women's futures," said Karen Davis, president of the Commonwealth Fund. "The question of public policy to address caregiving needs must be addressed now, while the proportion of elderly people in America is still beginning to grow."
Charles Halpern, president of the Nathan Cummings Foundation, said, "This study highlights large burdens being borne by unpaid, often untrained family caregivers. We need to assure that these caregivers are suitably trained and supported. We also need to integrate effective paid caregivers into care for the terminally ill. Since the poor and elderly are among those who rely most on paid caregiving, we must protect policies that help pay for this essential care at the end of life."
In addition to Dr. Ezekiel Emanuel and Dr. Linda Emanuel, co-authors of the New England Journal article are Diane L. Fairclough of the Center for Research Methodology and Biometrics, AMC Cancer Research Center, Denver; Julia Slutsman, Department of Health Policy and Management, School of Hygiene and Public Health, Johns Hopkins University, Baltimore; Hillel Alpert, Vital Science and Health, Newtonville, Mass.; and DeWitt Baldwin, M.D., Ph.D., of the Institute of Ethics, American Medical Association, Chicago.
The Commonwealth Fund, based in New York, helps Americans live healthy and productive lives. Its four current national program areas are improving health care services, bettering the health of minority Americans, advancing the well-being of elderly people, and developing the capacities of children and young people. The Nathan Cummings Foundation, also of New York, is rooted in the Jewish tradition and committed to democratic values, including fairness, diversity and community. The Foundation works to improve the quality of life at its beginning and at its end by supporting humane patient-centered care that provides comfort and caring, as well as cure.