Rethinking the Way America Takes Care of Its Chronically Ill

<i> David Schulman, a Los Angeles lawyer specializing in AIDS issues, is a member of the Union of American Hebrew Congregations' National Committee on AIDS. </i>

The baleful conditions of American health care now get abundant media coverage. As medical costs continue to rise, proposals proliferate on ways to control spending--which, as a percentage of our gross national product, has risen nearly 3% since 1981.

Yet millions of Americans lack access to basic health care, and the quality of much of the care they do receive runs from doubtful to bad, as we now are regularly reminded. How can the world’s richest nation tolerate such a situation?

Proffered answers on Capitol Hill are many and varied. But a solution cannot be conjured up with either the wave of a governmental magic wand nor with well-intentioned appeals to volunteerism. The way lies in a transformation of our understanding of health care itself.

Changed conditions have altered health-care realities, yet our discourse has not adjusted. The roots of our health-care quandary lie in the very success of the prevailing paradigm of care.

Medical research and technological advances have mastered the mysteries of acute trauma and infection. But by so doing, we have altered the very nature of morbidity--of how we die.


Ours are the first generations faced with the widespread dilemmas of chronic illness. The needs of the chronically ill are so different, yet our paradigm--the concept of care accepted by most of us as effectively explaining the process--has not yet adjusted.

Broken legs need to be set expertly and fast. It does not matter much if the orthopedic surgeon is brusque and the nurses wake the patient every three hours when their shifts change. The broken leg will heal.

But the chronically ill have profoundly altered self-images that must be addressed, too. Mental, physical and emotional health interact in complex interweavings affecting our senses of control, autonomy, dependence, involvement, fear of abandonment and--especially--loss.

Our acute-care skills have gained us precious gifts, but have kept us from perceiving clearly the dilemmas of different kinds of care--that faced by residents of nursing homes, AIDS patients desperate for support, persons with Alzheimer’s disease who are burdens on their families. We struggle for answers: Is there a right to die? To refuse care? To demand care?

In the mid-'60s, policy-makers chose institutionally based, professionally dominated modes of care for the elderly, a hierarchical model successful at delivering acute care.

But chronic care requires a fundamentally different response, one grounded in the meaning and familiarity of community, family and friends. That explains the powerful growth of hospice --providing a homelike setting for supportive care of the terminally ill.

In 1976, the Karen Quinlan case--in which a New Jersey court granted a young woman’s family the right to disconnect a respirator that kept her alive, when she was given no chance of recovery from a coma--confronted society with the specter of potentially meaningless life attached to life-support machines. Shortly thereafter, hospice grew from a few scattered programs to more than 2,000.

Yet the nature of hospice--humane terminal care in the home or homelike settings through the efforts of family, friends and trained support volunteers coordinated by interdisciplinary professional teams--remains at risk because society does not recognize the differing needs of the chronically ill, nor does it fund them adequately. Medicare requirements are more suited to calculating surgical hours and recovery days than they are for encouraging strategies for caring and support; hospices are thus forced to become more like the institutions to which they were originally an alternative. Out of anguish over AIDS, the San Francisco gay and lesbian community adopted the most important qualities of hospice and coordinated large teams of friends and volunteers to enable persons with AIDS to receive a broad range of home care at a fraction of the cost of institutionally based delivery.

Yet that model is already unraveling. The never-ending cycle of involvement and loss is burning out many volunteers, most of whom come from San Francisco’s lesbian and gay communities.

“It is impossible to overstate the value of the contribution made by family, friends, neighbors and lovers,” said Dr. Tom Peters, associate health director for San Francisco. But he added: “It is now time for the federal government to explicitly assume the responsibility for patient care, as it would in any other type of natural disaster.”

Chronic care requires a reworking of the relationship between government, medicine and the community. The role of current health-care institutions should remain focused upon what they do best--delivering acute care. But society should recognize that the increasing demands for chronic care are not best delivered there.

Health-care institutions should welcome carefully coordinated efforts to develop new methods of care such as those undertaken in San Francisco. After all, they fear the epidemic’s unplanned impact upon their fiscal and institutional stability.

This vision of care, however, cannot be limited to people infected with HIV, the virus that causes acquired immune deficiency syndrome. Justice mandates that successful aspects of new programs also be applied to the frail elderly, the neurologically impaired or any who require chronic care.

With AIDS as a catalyst, our religious institutions can construct a new ethos of caring. An invitational conference of religious leaders, organized by the Jimmy Carter Center and the AIDS National Interfaith Network, is meeting in Atlanta in December to consider just this issue.

There are many outside America’s religious mainstream who share in the commitment to relieve suffering. But religious institutions are centrally committed to doing so, have pre-existing networks of potential volunteers and low administrative overhead. They therefore offer a promising choice for an organizing base, along with other community-based organizations.

The Robert Wood Johnson Foundation has helped pioneer a consortium approach in its AIDS-funding strategy, as has the National Community AIDS Partnership. But government, the medical community and the public community at large have yet to fashion new partnerships in health care.

A new care paradigm should begin with public and private financial assistance to religious and community-service organizations, to let them mobilize congregational and community volunteers. Federal dollars should mandate that hospitals, out-patient facilities and health agencies provide home health education and training. Then family and friends could learn the skills necessary to make extensive home care possible.

Multiple-service, community-based facilities in the inner city would have powerful effects upon the poor. Financial support, education and involvement of family, friends and neighbors would re-orient relations between the poor and the helping professions.

True change in our current model of care would alter the patterns of life for us all. But the devastating issues of chronic care confront us with the urgent need for such change.

Articulating a new ethos of mutual care-taking lies at the heart of our struggles to become a kinder and gentler nation. To do so, however, requires first that we see clearly what is truly needed.