Volume 3, Issue 05 - July 2000

Family Caregiving: Community Responsibility

The view that families should take care of their own and bear the responsibility of the physical and financial costs of caregiving for family members is based on the assumption that these same family members are willing and able to provide this care. But more and more, this responsibility is becoming too difficult for some to bear. In this article I will consider from an ethics perspective the question - to what degree should society support families caring of families?

Setting the Stage

It seems that not long ago, the term "health care providers" evoked the image of professionals in hospitals and long term care units. However, with emphasis being shifted to increased family and community involvement and responsibility, the image and the reality of providing care is quickly changing.

Some of the factors contributing to this changing environment include: an increasing number of elderly persons; more single parent households; the high costs of providing institutional care to ill family members and overall health care restructuring; and an increase in the number of women, traditionally the primary care providers, into the work force.¹ These factors present several challenges to families as providers of care.

Today, one in five Canadians report that they provide some degree of informal caregiving inside or outside the home, in addition to care they provide to family members in institutions. ² The percentage of the workforce involved in eldercare is expected to increase to one in four in the next decade with a projected growth of people over 80 years doubling in twenty years.3 In addition to providing actual physical care to assist with activities of daily living, one in five caregivers report they contribute financially to the cost of community services which are provided to their family members. As well, the costs of groceries, medications, transportation and/or medical supplies may be provided for their family member. ²

For those relations who reside at a distance from family members, indirect care requires frequent visits, phone calls and the general management of elder's affairs. This results in increased feelings of guilt and stress - in addition to the impact it has on employment responsibilities. ³

 These realities have never been more evident for those individuals and families involved in providing end of life care or palliative care. Health Canada estimates that the number of cancer deaths in Canada, representing 80% of all palliative care deaths, will reach 105,000 per year by 2010 (a 67% increase since 1997).4 Health care restructuring, increased reliance on outpatient clinic visits, earlier discharges from hospital, and the increasing need for informal and formal home care necessitates more family involvement. Recent reports reflect the reality of the experiences of individuals and families who are providing end of life care and the need to provide support. ^1,2,5,6 The need has never been more clearly identified and discussed as it is now.

By the same token, the desire of family members to participate and to walk alongside the end of life journey of their relations has never been stronger. The problem is that when families to take on this role, significant stresses are felt in other areas of family life. The question is, are these stresses a burden that families should simply have to bear privately? Or is there a responsibility on the part of society to assist families with these challenges?

The Ethical Arguments

I believe society has a moral obligation to provide services that minimize suffering, and to maintain care for its citizens. This obligation can be grounded in a number of moral principles including beneficence, justice,7 and efficiency.

Beneficence

The principle of beneficence suggests that there is a social obligation to advance the well-being of people in our society. Our health care system and other public services are founded on this principle. If this principle is accepted in its truest form, then there would be no need to limit health care in institutions. Commitment to this principle, therefore, includes doing whatever is required wherever individuals need care including care in the home. This can be achieved directly through the provision of services or indirectly by providing support to those providing care in the case of family care providers.

Justice

One reading of the principle of justice has it that everyone ought to have equal opportunities to flourish as individuals. Minimizing illness-related suffering for all persons is reflective of this principle in that illness is often a barrier to accessing opportunities that are necessary for any individual to flourish.

On the one hand, families with wealth tend to be in much better position to handle the stresses of illness than those less well off. And in spite of possible wealth, women and certain family members have to face more responsibility than others - at greater personal cost. Yet on the other hand, illness is not deserved, as one's place within the family hierarchy, one's gender or, for the most part, one's economic status are not deserved characteristics. To be penalized for one's situation with regard to these attributes would be unfair and unjust. Therefore, social supports are needed to help those least well off by enabling them to better provide appropriate care to their family members. Adequate supports for families looking after loved ones at home in the community as well as in acute and long term care settings would go towards ensuring that equal access to supportive care does exist.

Efficiency

We have a moral obligation to use community resources efficiently, as well as in accord with basic values (efficiency is a value). In addition to efficient utilization of health care dollars, this responsibility extends to the productivity of the nation. Hence the drain on the productivity of the working population also needs to be considered in any calculation of efficiency. If this is accepted, then it is evident that leaving the burden of care exclusively on families contributes to inefficiencies in many areas, including in the work place.

Statistics Canada (1992) estimates that one out of two Canadians of working age will provide care at home in the next generation. Since 1991 there has been a significant increase in care giving among the 15-24 year olds and 35-44 year olds. ² The impact of this is significant in terms of work performance, income and employment opportunities. Duxbury and Higgins indicate that employees responsible for the care of others (children and elderly family members) are more likely to experience productivity losses due to increased absences, tardiness, stress related to home and work responsibilities as well as the telephone time needed to attend to care issues. ³ Providing social resources to assist families to look after loved ones would result in more efficient use of social/community resources as it is related to employment and to the better utilization of existing health services.

Types of Community Support

As indicated earlier, caregiver support can come in the form of direct service or in support of the care provider. Both financial support and palliative care are instrumental in assisting family members who provide end of life care.

Providing caregiver support from a public policy perspective is not a new idea as several G7 countries have in place measures to support families. In Sweden and Norway, legislated benefits provide up to 60 days of 90% paid leave for individuals caring for ill or dying family members. ⁴ In Belgium employees are provided up to one year paid leave for hospitalization of a spouse, mate, child or grandparent. In the U.S. the Family and Medical Leave Act, which applies to all public employees and extends to private employers who have over 50 employees, provides for twelve weeks unpaid leave for care of a spouse, child or parent with a "serious health condition".¹

Though it is recognized that employers may provide employees support in various ways (time off, flexible days, leaves of absence), social support for families in Canada has been less forthcoming. In 1998, the federal government instituted a tax break for family caregivers. Currently Saskatchewan is the only province to have incorporated into their labor legislation the availability of twelve weeks unpaid leave to provide care to family members. It is evident in Canada that family members are provided with little income security and job protection when they choose to be absent from work to care for a family member.

In addition, greater attention and resources need to be directed towards palliative care initiatives. Individuals who are dying and the families who care for them are vulnerable. Their energies are directed toward the care required and to the "work" that needs to be accomplished at the end of life. With appropriate palliative care, the physical and emotional energy that may normally have been used to advocate on one's own behalf can be directed to pain and symptom management, psychological and spiritual comfort and to saying goodbye to those close to them. The emphasis of palliative care is meant to enhance the quality of life of the person who is dying and of the family members who are providing the care, to be able to find meaning and value in the suffering related to terminal illness. It is care that attempts to minimize the adverse affects of illness and death on the individual and the family. ⁷

Conclusion

Ideally, the care that is provided to an individual who is dying is personal and intimate family care. With the rapid shift of responsibilities and expectations of health care provision to family members and to the community, society has an obligation to reduce the suffering experience not only with the illness itself, but also with the costs of caring in terms of lost income and job impact. The reality and the costs of family caregiving have been documented repeatedly. It is now time for sincere discussion and public policy implementation that will enable families to properly care for those who are in need of such support.

The Palliative Care Association of Alberta (PCAA) , the Toronto Palliative Care Council and the Canadian Palliative Care Association have joined together to move the issue of family caregiver job protection and income support onto the agendas of public discussion and policy makers. For information about this initiative email Dennie at dhycha@dthr.ab.ca or call the PCAA at (780) 447-3980.

References:

1. Bessner, R. (2000). Job protection to family caregivers. Submitted to the Canadian Palliative Care Association. Unpublished.
2. Berger, E. (1999). Special Report health services in the home and informal caregiving. Toronto ON: The Berger Monitor.
3. Duxbury, L. & Higgins, C. (1998). Balancing Family & Work-Life in Saskatchewan: Realities and Challenges. Prepared for the Government of Saskatchewan.
4. Otfinowski, P. (2000). PCAA: In support of palliative caregivers. Palliative Care Association of Alberta Newsletter, 5(1).
5. Carstairs, S. (2000). Quality End-of-Life Care: The Right of Every Canadian. Ottawa, ON: The Senate of Canada. Available online at
   http://www.parl.gc.ca/36/2/parlbus/commbus/senate/com-e/upda-e/rep-e/repfinjun00-e.htm
6. Anderson, M. & Parent, K. (1999). A study conducted by Queen's Health Policy Research Unit for the Canadian Association for the Fifty-plus Final Report. Kingston, ON: Queen's University.
7. Randall, F. & Downie, R. S. (1999). Palliative Care Ethics. (2nd edition). Oxford, England: Oxford University Press.

Views offered in this article are those of the author and do not necessarily reflect the position of the Provincial Health Ethics Network.