"…it is vital that you are aware not only of your working definitions of family and health but also of how those definitions are shaping and perhaps constraining your practice (Hartrick Doane & Varcoe, 2005, p. 24)."I believe that Hartrick Doane and Varcoe’s call is a moral imperative — an imperative
that is in urgent need of more attention in contemporary health care ethics work. Nelson and Nelson (1995) observed over a decade ago that health care agencies and families were two systems of care that were “rubbing each other the wrong way” (p. ix). Sadly, this remains true today. In health care delivery and health care ethics work we encounter, for instance, angry relatives in acute care who are fearful we will too hastily withdraw treatment from their loved ones; parents coping with complex and serious illnesses of their children and trying to decide what is in the children’s best interests; frail seniors who are isolated from their families and coping at home on a razorthin margin of safety; exhausted women looking after children and seriously ill relatives in the home; rural families trying to cope with the costs and disruption of sending their loved ones to the big city for specialized treatment; and homeless people who are seriously marginalized in their attempts to access health care and have no family present to advocate for them.
Improving the ethics of practice with families requires that all of us operating in health care re-visit what we think we know. Following through with the examples above, this means that we need to realize that what we see as families “demanding” excessive treatment may in fact be a reflection of their fear of abandonment; “pushy” parents may have quite legitimate interests in having their voices and the voices of their children more carefully attended to in treatment decision–making; frail seniors are not necessarily “choosing” to “live at risk” but may be coping as best they can with minimal resources at their disposal; women caring for children and seriously ill relatives are not necessarily just fulfilling their "responsibility” but may be seriously constraining their own quality of life; rural families ought not to have to “bear the consequences” of where they have “chosen” to live; and homeless people are not “frequent flyers”, but are people who distrust the mainstream health care system and often seriously delay accessing badly needed acute care.
Ultimately, then, in contemporary health care ethics work we need to foster a better understanding of how sociopolitical contexts affect health and health care for families, and we need to foster a much more finely tuned ability to reflect on widely held biases and assumptions. Both are required if we are to engage with families and family members in a manner that promotes mutual trust and collaboration (Hartrick Doane & Varcoe, 2005; Nelson & Nelson, 1995). It is therefore most fortunate that the 19th Annual Canadian Bioethics Society Conference1 this year is devoted to the topic of the family. Our colleagues in Newfoundland have planned a wonderful event that promises to bring together enlightening plenary and concurrent sessions that can help us to promote more ethical practice with families.
I hope to see many of you there.
Paddy Rodney, RN, MSN, PhD
References:
1. St. John’s Newfoundland, June 18th-21st, 2008. http://www.easternhealth.ca/cbsc2008/
2. Hartrick Doane, G., & Varcoe, C. (2005). Family nursing as relational inquiry: Developing health promoting practice. Philadelphia, PA: Lippincott, Williams, & Wilkins.
3. Nelson, H.L., & Nelson, J.L. (1995). The patient in the family: An ethics of medicine and families. New York: Routledge.
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