This article is adapted from a publication by Daniel Perry, Executive Director of the Alliance for Aging Research, a not-for-profit organization based in Washington, D.C. The Alliance is the leading citizen advocacy group in the United States dedicated to improving the health and independence of Americans as they age through advances in medical research (see link below).

Benjamin Franklin, one of the founding fathers of the United States, said memorably that nothing in this world is certain except death and taxes. While his words ring true more than two hundred years later, he could not have foreseen how today's extended life spans have resulted in very different experiences for women as they encounter old age and the end of life. Human longevity in the twentieth century alone increased dramatically - from an average of 47 years at birth in 1900 to 76 years by 1999. While boys outnumber girls at the beginning of life, women today outnumber men by almost four to one after the age of 95. American women on average outlive men by six years.

Because men are less likely to survive into very old age, the face of global longevity is predominantly female. Like the United States, most countries are witnessing rapid growth in the numbers and proportion of the very old in their populations (people over age 95) - a global graying that will only increase as aging Baby Boomers create a Senior Boom tidal wave. What makes this phenomenon troubling, at least in the USA, is that older women are especially vulnerable to gaps in social services and are more likely than men to experience chronic health and financial problems at the end of life. Studies show that American women are more likely than men to be sicker, poorer, alone and with greater care needs at the end of their lives.

Women and men in every culture tend to have different experiences in old age, but especially so when death approaches. Women in the USA face the end of their lives in ways that are fundamentally different from men. They do so in a medical culture that intrinsically is not designed to meet their special needs. Within this context, families and community-based social service agencies struggle to provide safe and comfortable living arrangements; social, emotional and spiritual support; and help with finances, transportation, meals and daily personal care.

There are many gaps in our knowledge concerning women at the end of life. The under-representation of women as research subjects, which has persisted for many years, leaves us with limited information and understanding of many disease processes in older women and of how women fare in the medical care system.

The Alliance for Aging Research has produced a report, One Final Gift: Humanizing the End of Life for Women in America ¹ , which identifies specific gaps in research and public policies that raise concerns for many women as they near the end of their lives. While in their younger years, women often provide care to sick or dying family members in the home, whereas they are themselves likely to face death alone, in hospitals or nursing homes.

Reviewed by a panel of experts in the fields of gerontology and geriatrics, hospice and palliative care, care-giving issues, bioethics and health policy, One Final Gift identifies seven essential truths about caring for women at the end of life. While we focus on older women in the United States, we believe many of these facts apply to aging women everywhere.

Truth No. 1 Women live longer than men, and they are more likely to suffer from the effects of chronic diseases, including declining functional and cognitive status.

Truth No. 2 The majority of older women in the US die outside the home, in nursing homes or hospitals.

Truth No. 3 Fragmentation and limited financing for long-term care services, especially toward the end of life, result in unmet care needs for older women.

Truth No. 4 Despite increasing reliance on care at home, there is little support for family caregivers.

Truth No. 5 Most married older women outlive their spouses; consequently many of them suffer a steep decline in economic status.

Truth No. 6 Older women are more likely to live alone, with an ensuing complexity of health care and other needs near the end of the life.

Truth No. 7 Society can provide and afford much better care at the end of life that respects women's preferences, provides emotional and physical comfort, fosters family peace and meets spiritual needs.

A complete overhaul of America's medical and social support infrastructures is necessary if we are to improve care at the end of life for older women. The changes needed encompass some of the following:

• The way medicine is practiced
• How care is reimbursed
• How community health and social services co-operate
• How health professionals are trained
• How information about long-term care and end-of-life issues is disseminated

To achieve these changes, we need to know:

• What should be the goals of care for an older woman near the end of her life?
• When should there be a transition from life-prolonging care to comfort care?
• Who addresses an older woman's non-medical needs?
• How can we include a woman and her family - and encourage them to take a front seat - in the decision making on these critical issues?
• How can quality care be delivered and evaluated using the combined resources of family, community, and medical and social service systems?

In the USA, these complex questions arise in the context of a medical care system poorly aligned with the needs of older people generally. It is a system that still trains its professionals, provides care and pays for services based on the needs of patients with acute medical conditions and serious injuries. It is primarily geared toward the young and middle-aged with health insurance designed to cover acute medical problems, rather than chronic diseases of the elderly. Community-based service agencies and volunteers typically work with limited resources. They may have only fleeting interactions with the medical care system or with other social services agencies.

Painful but necessary changes include the transition from unlimited fee-for-service financing and health care environments defined by technology, to organized systems of pre-paid health care shaped by demands for new cost efficiencies.

Perhaps the greatest transition of all is the passing of a "doctor knows best" attitude among the general public and the rise instead of a patient empowerment movement that insists on respect from health care providers with the unique needs and preferences of patients. After all, the patient is as much a part, if not the most pivotal member, of the "medical team" as the physician, surgeon, nurse, or technician. What could possibly be a better time to humanize health care and to respect an individual's wishes than at the end of life? The twin goals of achieving continuity and coordination of care over the life span and attaining the conditions for a good death demand national dialogue in every country.

The Alliance for Aging Research has recommended the following steps to achieve these goals:

• More governmental support for increased research and training into better care and treatment options for chronically ill older women at the end of life.
• Better training for health care and social service providers in applying the principles of palliative care in settings where older women live and die.
• New collaborative channels among the various agencies that provide community and social services, and medical care institutions.
• Family caregivers must be given better preparation, information, and support in order to fulfill their role adequately, as caregiving responsibilities increasingly shift from medical settings to the home.
• Reexamination of government-funded health policies so that older people and their families are not forced to spend down to poverty levels in order to obtain long-term care programs.

Deep human emotion, values and judgments surround how we care for the dying. We must therefore keep in mind the human faces of those we are fighting for. They are our mothers, sisters, grandmothers, aunts, and neighbors.

Source

Daniel Perry. It's Time to End Gender Discrimination at the End of Life. The International Alliance of Patients' Organizations (IAPO). The Patient's Network (TPN) http://www.iapo-pts.org.uk/tpn/tpn.html accessed 2/15/2002.

Links

• The Alliance for Aging Research
• Gentle Endings: Preparing for a Peaceful Departure
• How do women view their risks of major diseases?
• Helping Doctors make Difficult Treatment Decisions when You Can't Advise Them
• What is Ageism, and How Should We Combat it?

Footnotes

1. One Final Gift. PDF format, available at: http://www.agingresearch.org/brochures/finalgift/welcome.html accessed 2/14/2002