Health Program Essay

A Good Beginning, A Good Ending:
Improving Care at Two Crucial Stages of Life

---

By Andrea Kydd
Director, Health Program

---

Birth and death are natural parts of life that have been made overly burdensome for families and communities by the contradictions between this country's words and deeds--contradictions reflected in our health care, human services, and family/community support systems. While, for example, we champion the ideals of the "whole person," "strong families," and "healthy communities," we provide little support for their development. While we struggle around the "right to life" and the "right to die," few programs are designed that increase access to the information, goods, and services that make choice possible, and those that exist often hang in the balance when hard choices have to be made. While we take pride in our pluralism, we are increasingly offended by the notion that attention should be paid to special needs that result from racial, religious, cultural, linguistic, and economic differences.

The Nathan Cummings Foundation's health program is interested in bridging the gap between what we profess to believe as a nation and what we do to implement those beliefs as we assess current policies and create new ones that affect the health and well-being of people at the beginning and the end of their lives. The Foundation feels strongly that the bridge must be built with the understanding that health is more than the absence or presence of disease. It is reflected in a sense of control over one's life, a view of oneself as a contributing member of a social support network or community, and a capacity for a positive outlook on the future.

Today, many people have access to high-quality health services--about 37 million, however, have been left behind. Moreover, few have access to the kind of preventive services that mitigate more serious health and social problems. Low-income people are particularly vulnerable to the consequences of poor or no health care. For example, it is low-income people who have the least access to prenatal care, well-baby care, and/or family planning services. However, most of us, no matter what our financial resources, are at a disadvantage when health care providers and other helping professionals fail to treat us as whole people, fail to recognize the impact that members of our families and social support networks have on our health and well-being, and fail to recognize that the births and deaths in our lives are hampered, not assisted, by the sometimes unnecessary intrusion of medical technology.

---

Birth and death are the two great portals through which each person passes. Yet we have isolated them behind technological walls and obscured the social, familial, and spiritual opportunities that they present.

---

In the past, the Foundation has supported organizations such as the Center for Budget and Policy Priorities--organizations committed to ensuring that eligible low-income families with children have access to government-supported, health-related programs such as Medicaid and the Supplemental Food Program for Women, Infants and Children (WIC). In addition, the Foundation has supported organizations such as the Center for the Advancement of Health, Harvard University, and Beth Israel Medical Center in New York City as partners in an effort to bring humane, patient-centered care into the mainstream of the health care system. Over the next few years, as the health program focuses its efforts on improving the quality of life at its beginning and at its end, these aspects of the program's strategy will remain constant: support for organizations that focus on the special needs of low-income families and support for organizations working to expand the view of the health care system so that it considers the whole person, the importance of family and social support networks to people's well-being, and the multicultural and multiracial nature of this society.

Beginning of Life

Experts concur that America's children are in danger, especially the 15.7 million children currently living in poverty. Today, 9 million children lack health care; preschool vaccination rates lag behind some third-world countries; and millions of children begin life and school not ready to succeed. While programs such as Medicaid and WIC and the implementation of family support programs nationwide have helped improve babies' chances of being born healthy and surviving, millions of children continue to fall through the cracks during their infancy. As a result, new approaches to maternal and child health have been developed that challenge traditional models. These approaches not only help prepare pregnant women and women who have just given birth to act as their own and their children's primary caregivers, but also increase their sense of control over the course of their lives and the lives of their children.

The interventions on which these models rest focus on the entire family. They emphasize family strengths, rather than deficiencies or pathologies. In addition, they recognize families as partners in, rather than passive recipients of, health care. Consumer-driven, family-centered maternal and child health models help families use and build on the resources to which they have access.

---

No discussion of health care can disregard the 37,000,000 who are uninsured--who lack preventive care, who have irregular medical attention, and who are denied the benefits of modern medical advances.

---

For example, the Better Homes Fund is exploring whether stress reduction and group support techniques will improve the health outcomes, parenting skills, and social networks of homeless pregnant women, as well as the health status of their newborns. In this study, two groups of homeless pregnant women will receive prenatal care of comparable quality. The women in one group will also be taught stress reduction techniques and participate in a support group. In addition to discussing effective parenting and the use of social and health services, the support group will give the women an opportunity to experience the importance of a social support network and the power that comes from providing assistance to another. (Each woman will be attended by a midwife and another member of the support group.) Through before-and-after testing, the project will determine if there is a significant difference between the two groups in such areas as birth outcomes, level of mother/infant attachment, knowledge about parenting, the effective use of health and social services, and confidence and autonomy.

There is a growing recognition of the efficacy of a family-centered approach to maternal and child health, as evidenced by its incorporation into federal program guidelines and regulations. Family-centered care programs are varied and dependent on the setting and system in which they are instituted. Nevertheless, excellent examples of family-centered care exist, as do organizations that are working to promote family-centered approaches. The Institute for Family-Centered Care provides training and technical assistance to health care providers in family-centered maternal and child health care practices, and documents the work of providers who are improving the health and health outcomes of children by including the children's families as full partners.

The benefits of better maternal and child health care will not be shared by low-income people, however, if current health care, food assistance, and cash assistance programs are cut back or eliminated, and new, improved programs are not created to replace or supplement them. As a consequence, the critical nature of the work of organizations such as the Children's Defense Fund and the National Association of State-Based Child Advocacy Organizations cannot be overemphasized. Who receives what kinds of health-related services will determine the health of generations to come and, by extension, the health of the country.

End of Life

Autonomy, social support, and hope have an impact on health at the end of life just as they do at the beginning of life. Until the last 50 years or so, the physician's role in relation to death was to comfort the patient and the patient's family. But today, with so much of the health care system's focus on cure, many physicians and other health professionals view the death of a patient as a professional failure. They have difficulty informing patients of impending death, supporting patients as they come to terms with the end of life, and advising families and friends.

Dissatisfaction with the way we die has fueled a public debate on dying well. The most visible aspect of the debate has been around patient autonomy, including physician-assisted suicide. The Nathan Cummings Foundation believes that the focus on patient autonomy, while important, is too narrow to be the center of public discourse on death and the dying process. The debate should center on the needs of those who are dying, their families, and social support networks; the types of programs that must be established to meet those needs; and the resources available to support those programs.

Advances in medical science and technology make it possible to eliminate physical pain and to keep the human body alive indefinitely with the help of machines. However, little is known about how to support the mind and spirit of dying people and those who attend them. Few resources have been devoted to understanding the nature of suffering in the last stages of life and its relationship to the quality of the dying process. We speak of physical pain and suffering as if they are one. Yet, there are clear indications in the medical literature that suffering continues even when physical pain has been eliminated.

The work of Ira Byock, M.D., and others who provide palliative care services suggests that attention to a dying patient's inner life can enable that person to find meaning in her suffering, and, thereby, enable her to have a positive end-of-life experience. The Foundation has awarded a small grant to enable Byock and others in his Montana community to develop the Missoula Demonstration Project. Through this project, Byock hopes to demonstrate, in practice and through research, that the quality of life can be preserved during the dying process and that superior care of patients and their families can be provided in a cost-effective manner.

To inform its grantmaking, the Nathan Cummings Foundation, in collaboration with the Commonwealth Fund, has awarded a grant to Harvard University and the National Opinion Research Center at the University of Chicago for a study to determine the kinds of services and support that would improve the quality of life of people who are terminally ill. In this first-of-a-kind study, people with terminal illness who are expected to die within a year and their primary caregivers will be interviewed to learn their attitudes and needs and the nature of the services to which they have access.

At the same time, the Foundation has begun to explore what is known about primary/family caregivers and their needs and to develop strategies for engaging caregivers, health care professionals, academicians, and public and private policy makers in examining how best to meet those needs. Those who are dying from a chronic disease often are cared for at home, placing the major responsibility for their care on family members, including life partners or others in the dying person's social support network. The important role that family caregivers play is given little recognition by health care providers and policy makers. As a consequence, there is a lack of resources available to protect the health and well-being of caregivers. an body alive indefinitely with the help of machines. However, little is known about how to support the mind and spirit of dying people and those who attend them. Few resources have been devoted to understanding the nature of suffering in the last stages of life and its relationship to the quality of the dying process. We speak of physical pain and suffering as if they are one. Yet, there are clear indications in the medical literature that suffering continues even when physical pain has been eliminated.