- BIOETHICS FORUM ESSAY
Envisioning Civic Palliative Care
Dying cannot be understood properly, or responded to well, without recourse to the connections between the dying experience and the larger social structures that make up a social and civic community. To develop this perspective further, it is important to envision a new kind of palliative care system that extends beyond professional expertise and a clincal model to encompass the capacities, resources, and social capital of entire communities. Such a system might aptly be called civic palliative care. It does not exist anywhere in the United States, but it is within our grasp.
Values Animating Palliative Care
Death and dying are among the most intimate and personal experiences in human life. One becomes preoccupied with disease, symptoms, medical treatments. Yet, this is not the whole truth. Intense, highly charged and delicate, invested with meanings that are at once intimately personal or private and necessarily social and public, dying is a particularly complex social performance that takes place in an exceedingly dense or thick cultural environment. Dying well requires a delicate social ecology of caring connections and meaning that can surround and support dying patients and families as they strive to make sense of what has befallen them.
In the past, when it was largely technologically impotent, medicine (together with religion) at its best created just such an ecology of social rituals and cultural meanings during the dying process. To varying degrees, dying could be a time of repairing and renewing relationships and identities—with family and friends at hand, with an opportunity to reconcile with those estranged, to forgive and to ask forgiveness. Today, medicine and medical treatment decisions set up a dynamic that tends to overlook the significance of that ecology. Clinical palliative consultation can alleviate this to some extent. But remembering civic and cultural context is fundamental.
A future design for civic palliative care should extend the duration of holistic (bio-psycho-social-spiritual) support and services beyond a delimited period of a few months during the end-of-life stage of chronic illness. This design can develop programs that offer different types and levels of services over time as the patient’s need for support and palliation increases. In other words, we should expand the remit of palliative care “upstream” into an earlier stage of chronic illness management and long-term care.
This expanded conception of palliative care also necessitates enlisting the support of many service providers and agencies in a local community to create a community-based model of integrated health and social services, nutritional support, housing, and transportation support for persons needing substantial help with activities of daily living. This would be, in effect, a civic palliative care system with multidisciplinary palliative care expertise, case management, care planning, and goal setting tailored to the needs and values of the individual, and seamless continuity of care across services and settings. In addition to this, we should also come to see civic palliative care not only as a matter of civic coordination and an ecology of support, but also as a civic responsibility incumbent upon entire communities, working with and supporting individuals in need of services, families, and professional health and social service providers. For a more detailed presentation of this type of policy and institutional innovation, see Access to Hospice Care: Expanding Boundaries, Overcoming Barriers, a special supplement to the Hastings Center Report .
Civic Palliative Care
Aging and chronic disease call forth from many communities concern and response in the form of government support for senior centers, area agencies for aging, aging in place programs, Meals on Wheels, and adult day (and night) care facilities, as well as volunteer supports of all kinds from churches, service clubs, and neighborhood associations. This is the infrastructure upon which civic palliative care can build. In this way entire communities can become the providers of care giving and care planning, across a broad continuum of settings and services, for their members and families who are moving along a trajectory of chronic, debilitating, and life-limiting illness. These characteristics reflect goals that hospice has sought to adhere to, but their implications extend well beyond what we currently designate as hospice alone. They also provide elements for a restructuring of the entire system of care in the final chapter of life.
Civic palliative care will have to navigate the fissures and crevices of the health care system, no matter how it is financed and organized. It will most likely discover when the fabric of a local community and its social capital are in need of repair. Civic palliative care offers a promising way to provide enhanced continuity across institutional settings and to assist patients and families who are wrestling with complex clinical and personal decisions. For an innovative, rich discussion of this approach see the important recent book by Joanne Lynn, MediCaring Communities.
Palliative care and hospice must develop new organizational forms if they are to function in this way. The development of such new forms of financing and delivery for civic palliative care will tax the political courage of health policy makers and the creativity of palliative care and hospice leaders. It will also require that policy-makers begin to combine health care with social care, and the combination of civic palliative care and other initiatives of civic renewal can provide the model for doing so. While the first expression of civic palliative care—which is currently being referred to as “community-based palliative care”—may be care of the dying, in the final reckoning, the scope of its mission and contribution will grow. Civic palliative care will take its place within a wide array of other civic and service organizations as an active participant, a plain member and citizen, of a just, healthy, caring, and resilient civic community.
Bruce Jennings is an adjunct associate professor in the Department of Health Policy and the Center for Biomedical Ethics and Society at Vanderbilt University School of Medicine. He is also a senior advisor to The Hastings Center and a Hastings Center Fellow. He is coauthor of The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life, Revised and Expanded Second Edition (Oxford University Press, 2013) and co-editor of Hospice Ethics: Policy and Practice in Palliative Care (Oxford University Press, 2014).
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