What do ethics, state governments and family caregiving have in common? Most discussions of ethics, especially linked to government, concern what not to do. But ethics, broadly understood, establish principles and open discussions about what is right, what is just and what should be done.
Most arguments favoring state government support for family caregivers rest on economic grounds. There is neither enough money nor enough workforce to replace the free labor that families provide for older adults needing assistance to manage their medical needs, daily living requirements and personal care. As AARP public policy analysts put it last year in their issue brief, Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving, "Adequate funding for family caregiver support will provide an excellent return on investment."
THE RIGHT THING
Yet ethics, not economics, are the impetus for most family caregiving. Family caregivers take on difficult and long-term responsibilities because, they typically say, "It is the right thing to do. After all, she's my mother." Caregivers may couch their decisions in terms of emotional bonds, religious teaching, cultural tradition, gratitude or a sense of duty, but the essence of all these reasons is an ethical obligation to help a family member in need.
Typically, governments appeal to personal responsibility, an ethical term aimed at encouraging families to take on this job that would otherwise be the state's financial and management burden. Public policy and practice have been built on the implicit premise that families are resources to be used until exhausted, not true partners in an individual's care or clients in their own right. As a matter of justice, governments have ethical responsibilities not only to support families' efforts to give care but also to recognize the value caregivers provide to the public, not just to their family members.
In January 2006, in anticipation of a changed New York State administration following the November elections, the Families and Health Care Project of the United Hospital Fund (UHF) decided to create a policy agenda to build support for family caregivers. New York has not been a leader in this field even though it has 2.2 million adult family caregivers, a number surpassed only in California and Texas. To broaden the discussion from service needs to underlying ethical principles, UHF staff decided to create an ethical framework.
As far as we knew, no U.S. state or national government had ever done such a thing, although I had participated in the World Health Organization's working group on global issues related to family caregiving, as well as contributed to its 2002 report Ethical Choices in LongTerm Care: What Does Justice Require?
With partial support from the Greenwall Foundation, UHF's Families and Health Care Project convened a working group to create the ethical framework and a policy agenda, both of which were released in November 2006. The resulting report, available on the UHF website at www.uhfnyc.org, defined an ethical framework as "a statement of basic values, principles and community norms that govern policy making and implementation."
Recognizing that in all societies family members have ethical obligations to care for each other, the framework asserts, "Public policy that supports family caregivers puts into practice the widely held view that families are intrinsically important because they give meaning and depth to fundamental human relationships." The statement continues that such a policy supports the deeply held societal and professional views of "the primacy of providing benefit to the patient or client."
The document also recognizes that establishing family caregivers in a policy agenda as partners in their family member's care and as clients in their own right requires a fundamental shift in philosophy. The essential assumptions underlying the change were:
* Good ethics start with good facts, so that policies affecting family caregivers should be based on evidence, not myths or stereotypes that families given support abandon their relatives;
* Public policy should be transparent-open to comment, critique and evaluation by stakeholders, including family caregivers themselves;
* Support should be multidimensional;
* A policy agenda should include staff training and assistance to implement these goals. …