"The nation needs to understand the medical and social support needs of the longest lived, and today in America, that’s older women," commented Daniel Perry, executive director of the Alliance. The seven truths the report describes are included here.
Truth No. 1 - Although women outlive men, they are more likely to suffer from chronic disease, including declining functional and cognitive status. U.S. women outlive men by an average of six years. Aging women are more likely to experience chronic conditions such as arthritis, osteoporosis, Alzheimer’s disease and incontinence. Problems of prognostication make it hard for patients and providers to know when life is ending.
Truth No. 2 - Most older women in the U.S. die outside of the home, in nursing homes or hospitals. Lack of palliative care is characteristic of institutional end-of-life settings. Other end-of-life symptoms, including shortness of breath, depression, loss of appetite and nausea, are also widely present. Although strategies exist to manage these symptoms, many physicians are unaware of them.
Truth No. 3 - Unmet care needs for older women generally result from fragmented and limited financing for long-term care services. Many of the elderly rely on families for informal assistance: Formal, paid services are not widely accessible. For example, Medicare covers part-time home health services for a limited period, but only when very specific guidelines are met. The needs of older, frailer individuals wishing to live independently often go unmet. Moreover, because home health aides are underpaid and receive poor benefits, the profession is unattractive. Nursing home coverage is difficult to obtain, forcing families to "spend down" to qualify for assistance.
Truth No. 4 - There is little support for family caregivers despite the reliance on care at home. Family members often perform medical procedures, including infusion therapy, kidney dialysis, surgical wound care, total parenteral nutrition and respirator care, at home. Three-quarters of these caregivers - as well as the majority of those being cared for - are women. Despite the satisfaction some people find in caregiving, the task often conflicts with work and other family commitments, and can lead to physical injuries, emotional problems, isolation and exhaustion. Improving partnerships with health care professionals and increasing the continuity of care across settings might alleviate some of these problems.
Truth No. 5 - Most married older women outlive their spouses, often resulting in a decline in economic status. Nine out of ten married women will be widowed at some time during their lives. When their spouses die, many women receive reduced Social Security and pension benefits. Moreover, in the event of a husband’s illness, many wives are forced to spend down family resources to obtain care, leaving them impoverished.
Truth No. 6 - For many older women who live alone, complex health care needs arise at the end of life. Depression in older women living alone is often undiagnosed and untreated. When a spouse dies, bereavement counseling is rarely used unless the death was sudden or violent. And hospice care is not readily available to women who do not have a primary caregiver at home.
Truth No. 7 - Better end-of-life care that respects women’s preferences, provides emotional and physical comfort, fosters family peace, and meets spiritual needs is a service society can provide and afford. Most Americans value a natural death in a familiar setting, surrounded by family and friends. However, few deaths follow this path. Hospice programs, which deliver palliative care in a home setting, seem to be the most appropriate response to these shortcomings. And hospice eligibility requirements exclude many.
To significantly improve women’s end-of-life care, the Alliance for Aging Research suggests focusing on three broad categories: research, education, and restructuring. The Alliance recommends that medical professionals and researchers explore and analyze issues surrounding women’s health, including gender differences; the effects of chronic illness on women; non-invasive screening tools; training and payment of health aides; assessment of end-of-life needs; and factors influencing quality of care and patients' preferences.
A failure to communicate available information is responsible for many shortcomings in care for older women. The Alliance recommends increasing awareness in several areas relevant to end-of-life care, such as physician training in chronic illness; public understanding of aging, long-term and chronic care services; improved resource and referral materials; physician-caregiver collaboration and home nursing training; and bereavement programs. The Alliance recommends that some institutions be analyzed and restructured to provide better care. Issues to consider include the role of nursing homes in end of life care; national and local caregiver-support programs; national long-term care policies that impoverish the elderly; and links between medical and social services and finance structures.
The Alliance for Aging Research published One Final Gift to “sharpen a perspective on the experience and needs of older women at the end of life.” Currently, no one profession or system focuses on the many health, social, emotional and spiritual concerns facing aging women - a situation the Alliance hopes to change. By raising awareness through dissemination of One Final Gift, the Alliance aspires to create a consciousness among individuals and organizations possessing the power to institute effective change. Ultimately, the report promotes giving our mothers, sisters, wives, and friends a true gift: the possibility of a good death.
To order a copy of this report, contact The Alliance for Aging Research, 2021 K St., NW, Suite 305, Washington, DC 20006 or phone: 202.293.2856.
Charlotte Eichna, a summer intern at the Center to Improve Care of the Dying, is an undergraduate at Brown University.
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