The first part of Thursday's class will introduce the subject matter on aging, family caregiving, death and dying. During the second half, UW-Madison HDFS Department Chair and Professor Linda Roberts will speak regarding some of her research. Dr. Roberts is a longtime friend and colleague of mine, going back to the early 1990s when we were both working on alcohol studies at the Research Institute on Addictions, in Buffalo, NY.

The following article presents an excellent overview of many relevant issues:

Haley, W.E., Allen, R.S., Reynolds, S., Chen, H., Burton, A., & Gallagher-Thompson, D. (2002). Family issues in end-of-life decision making and end-of-life care. American Behavioral Scientist, 46, 284-298.

The article begins with the statement that, “Family members are involved in every aspect of end-of-life decision making and care,” and goes on to discuss several areas. Two areas I want to examine are caregiving and end-of-life decision-making. Here are some excerpts from the article:

ON CAREGIVING

Families have been found to provide the majority of care for individuals with chronic illness.

…projects [focusing on care of patients with either cancer or dementia] found rates of psychological distress in caregivers to be two to three times higher than those in general community populations regardless of the nature of the illness for which care was being provided

Although providing extensive caregiving is certainly more stressful than providing occasional caregiving, studies of primary caregivers of patients with dementia and cancer generally find that objective measures of the amount of care provided do not explain much of the variability in caregiver distress…

…despite the large number of studies on caregiving and its associated stresses, it should be noted that very little of the research literature to date has focused on caregiving near the end of life.

ON END-OF-LIFE DECISION-MAKING

Concerning end-of-life decisions… individuals may make formal advance directives, specifying their wishes for end-of-life care and/or designating someone (usually a family member) as their surrogate decision maker in the event that they are incapacitated. Even with a formal advance directive, it is necessary for family members to be aware of this document and insist that it is implemented when patients face a health crisis.

Family members are often key decision makers regardless of patients' prior preferences concerning end-of-life care... Dying patients may even prefer that family members make final decisions. Terry and colleagues (1999) found that a majority (54%) of terminally ill patients would select their surrogate's treatment decision rather than the treatment outlined in their own advance directive.

Family members are often asked by health care professionals to propose a decision that is based on what they believe the patient would have wanted. A growing body of research, however, shows that surrogate preferences can be an inaccurate reflection of the patient's actual treatment wishes…. Specifically, familial surrogates tend to overestimate the frequency with which patients would like to receive aggressive or invasive treatment near the end of life…

This separate PowerPoint slide show by Haley has a lot of background on caregiving, and death and dying (see slide 29, in particular). Much of the rest of the slideshow pertains to interventions to help caregivers.

The Wikipedia has some informative pages on advance directives and hospice/palliative care.

On the topic of bereavement, two useful resources are the University of Michigan’s Changing Lives of Older Couples (CLOC) study, and the stage-theory study we discussed earlier (Maciejewski and colleagues, “An empirical examination of the stage theory of grief”, for which there’s a link in the bibliography section below).