Improving Life's Beginning and Its End

The goal of the health program is to improve the quality of life at its beginning and at its end. We believe that the support a society provides to people at these two points in life is a reflection of that society's values and an indicator of its future stability. In Affirmative Action: A Fair and Effective Remedy for Discrimination, Elaine Jones, executive director of the Legal Defense Fund, quoted Colin Powell as saying: "There are those who say all you need is to climb up on your bootstraps, but there are too many Americans who don't have boots, much less bootstraps." Our grant dollars are awarded to projects that help people obtain boots, and we define boots in two ways: as access to the goods and services necessary to meet basic human needs-nutritious food, shelter, clothing, health care; and as the support necessary to develop a sense of control of one's life, a sense of oneself as a productive member of society, and optimism about the future.

The Foundation's view is that health has more to do with mental outlook, social support, and the ability to meet basic needs than with the absence or presence of disease. We believe that the health care system's overwhelming focus on the treatment of disease impedes health promotion and the provision of comfort care to those with chronic disease. Few providers organize their services so that they can develop a holistic view of the patient (mind, body, spirit, and community); few have the skills necessary to include the patient and her family, appropriately, as full partners in maintaining health and managing disease. We reach out to those developing programs that will demonstrate the wisdom of doing so.

At the same time, we reach out to those who are thinking and acting creatively around the tension between the benefits society derives from a sound economy and those it derives from assuring that the basic human needs of all are met. A concern about the poor and the impact of poverty on the human spirit has been at the heart of the health program since its inception.

Beginning of Life

When the President signed the Personal Responsibility and Work Opportunity Reconciliation Act into law, a challenge was presented to those concerned about the health and well-being of children. The states are now responsible for deciding which families receive what kind of cash assistance and for how long (though not for a period longer than five years). Under the new law, there are no guarantees of assistance for previously eligible recipients. At the same time, an increasing number of states are requesting and receiving approval from the Department of Health and Human Services to experiment with new ways to provide health care services to families with children.

In response to the shift from federal to state authority over the scope and content of health-related safety net programs, the Foundation dedicated resources to building the capacity of state-based public interest organizations and policy makers to protect the health of young children. For example, the Foundation supported the work of the Center on Budget and Policy Priorities and the Center for Law and Social Policy to enhance the ability of public interest groups to assess state proposals regarding tax and budget policy, cash and food assistance, and health care programs. We also awarded a grant to the Center for Health Policy Development (also known as the National Academy for State Health Policy) to work with state policy makers committed to improving the quality of health care for children in foster care.

While access to food, shelter, and health care services contribute to a healthy beginning to life, they do not assure it. Numerous studies have documented the complex interplay of psychological, social, behavioral, economic, environmental, and other non-biomedical factors that affect young children's ability to develop into healthy adults. As a result, new holistic models of care have emerged which recognize that children's health improves as the quality of the lives of the adults with whom they live improve.

Family-centered maternal and child health care programs are among those models. This approach to care acknowledges that families, broadly defined, have the primary responsibility for protecting the health of young children and, in most cases, for following the treatment regimens necessary to cure or manage disease. In the most effective programs, health care providers involve families in decision-making and build the capacity of adults to problem-solve, instead of fostering dependency on professional services.

The Foundation awards grants to enhance awareness and adoption of family-centered models of maternal and child health care. For example, in 1996, we awarded a grant to the Institute for Family-Centered Care to provide training and technical assistance on best practices and policies to health professionals from teaching hospitals across the country. In addition, we awarded a grant to Montefiore Medical Center in support of a planning process aimed at transforming the primary, secondary, and tertiary pediatric care provided by the medical center and the community-based health care services it supports.

End of Life

Debates over physician-assisted suicide have helped open the door to a more public discussion about death and dying. At the same time, they have diverted attention from the larger issue-the inadequate quality of care at the end of life. Many health care providers are rising to meet the challenge created by increasing criticism, and there appears to be a growing commitment to expand palliative care into the mainstream. The question is whether the mainstream focus of care at the end of life will take into account the whole person-mind, body, spirit, and community-or be more limited.

With an eye toward an expanded view of care at the end of life, the Foundation funds projects that explore ways to improve communication between people who are dying and those who are important to their care, including health professionals, clergy, and community; to heighten the visibility of and address the needs of family and other informal caregivers; and to decrease the psychological, emotional, and spiritual distress associated with the dying process. For example, we awarded a grant to Johns Hopkins University to design and evaluate interventions for use by clergy, social workers, and doctors that will relieve the psycho-spiritual distress experienced by dying patients, helping them reach more peaceful closure. The Missoula Demonstration Project is organizing the community of Missoula, Montana, to meet the needs of its dying residents through better coordinated services, including increased volunteer services. We also supported Family Caregiving in An Era of Change, a project of the United Hospital Fund of New York, which has as its goal enhancing the ability of family caregivers to provide care to their loved ones more competently and with less unnecessary burden.

In addition, the Foundation is concerned about the ability of terminally ill people to meet their basic human needs, including their access to health care. For example, the grant we awarded to the National Health Law Program (NHeLP) supports the work of NHeLP, the National Center for Youth Law, and the National Senior Citizens Law Center in monitoring changes in Medicaid and Medicare and in providing technical assistance to state-based legal advocates around those changes.

In 1997, the Foundation will continue its focus on improving the quality of life at its beginning and at its end. As we assess projects that address the needs of low-income constituencies, we will pay particular attention to those programs that share their best practices and policies with other groups. In assessing projects for improving the quality of care available to those at the beginning or end of their lives, we will focus on those programs that demonstrate the eYcacy of an expanded view of health to the mainstream of health care. more public discussion about death and dying. At the same time, they have diverted attention from the larger issue-the inadequate quality of care at the end of life. Many health care providers are rising to meet the challenge created by increasing criticism, and there appears to be a growing commitment to expand palliative care into the mainstream. The question is whether the mainstream focus of care at the end of life will take into account the whole person-mind, body, spirit, and community-or be more limited.

With an eye toward an expanded view of care at the end of life, the Foundation funds projects that explore ways to improve communication between people who are dying and those who are important to their care, including health professionals, clergy, and community; to heighten the visibility of and address the needs of family and other informal caregivers; and to decrease the psychological, emotional, and spiritual distress associated with the dying process. For example, we awarded a grant to Johns Hopkins University to design and evaluate interventions for use by clergy, social workers, and doctors that will relieve the psycho-spiritual distress experienced by dying patients, helping them reach more peaceful closure. The Missoula Demonstration Project is organizing the community of Missoula, Montana, to meet the needs of its dying residents through better coordinated services, including increased volunteer services. We also supported Family Caregiving in An Era of Change, a project of the United Hospital Fund of New York, which has as its goal enhancing the ability of family caregivers to provide care to their loved ones more competently and with less unnecessary burden.

In addition, the Foundation is concerned about the ability of terminally ill people to meet their basic human needs, including their access to health care. For example, the grant we awarded to the National Health Law Program (NHeLP) supports the work of NHeLP, the National Center for Youth Law, and the National Senior Citizens Law Center in monitoring changes in Medicaid and Medicare and in providing technical assistance to state-based legal advocates around those changes.

In 1997, the Foundation will continue its focus on improving the quality of life at its beginning and at its end. As we assess projects that address the needs of low-income constituencies, we will pay particular attention to those programs that share their best practices and policies with other groups. In assessing projects for improving the quality of care available to those at the beginning or end of their lives, we will focus on those programs that demonstrate the eYcacy of an expanded view of health to the mainstream of health care.