Long-term care for people with chronic illnesses and disabilities presents an urgent challenge around the world, as existing systems of care have come under great strain and are unable to fully meet growing demands. The critical ethical issues related to long-term care ? which all people are at risk to face during their lifetimes ? are the focus of a new World Health Organization report entitled "Ethical Choices in Long-Term Care: What Does Justice Require?" .
The universal problem of long-term care is intensifying, due to a combination of demographic and epidemiological forces. A recent WHO study estimates that in many developing countries, the need for long-term care will increase by as much as 400% in the coming decades.
Changes in social structure provide a partial explanation of the increased need for long-term care solutions. Many families are having fewer children and as more young people migrate from rural to urban areas, and from poorer to richer countries, they may not be available to provide care. Similarly, as women, the traditional care-givers in society, are pulled into the labor force by economic necessity or personal desire, they may be unable to continue providing those services.
Furthermore, much of the demand for long-term care arises from aging populations, chronic health challenges, increasing dependency, the HIV/AIDS epidemic, dietary and lifestyle habits, increased road injuries, and the rise in diabetes, cardiovascular disease and stroke. There is a fundamental ethical obligation to provide care for all, particularly the weak and vulnerable, yet most societies are faced with resource limitations and difficult decisions about which of the competing needs are met. Governments have a crucial role as they must anticipate needs, ensure that resources are available and distribute them equitably and efficiently. Yet, strategies for providing long-term care have been low on government agendas everywhere and are completely absent in some countries. Little has been done to address the current challenges, much less to prepare for the future.
Existing systems of allocating the burdens and benefits of caring for the chronically ill and disabled are often unfair and the inequity is likely to intensify.For example, caregiving tasks have fallen disproportionately on females who are not adequately compensated or protected. Removing a girl from school to care for an ailing relative may sentence her to a lifetime of poverty and unmet potential. The report suggests that caregiving should be redefined as gender neutral and that states should consider prohibiting depriving girls of an education.
The report illuminates the many ethical and social issues at stake. Among key questions that need to be answered are the following:
- What urgent long-term care needs exist?
- Whose needs are at stake?
- What resources are available to meet those needs?
- What are families expected to do, how can they be supported and what would constitute an intolerable burden for these common care-givers?
- What discriminatory biases, e.g. gender, age, or geographic, are embedded in decisions about care-giving?
Answers to such questions discussed in the report will help in the design of long-term care systems that are responsible, accessible, efficient and accountable, and address the wide variety of human needs with dignity and respect. The WHO report is an outcome of a July 2002 consultation at the University of Chicago that brought together philosophers, experts in public health and long-term care and professionals knowledgeable about developing countries. The report calls upon societies to invite dialogue about the ethical framework within which equitable, fair, rational, and transparent decisions about long-term care can be made.