Friday, March 6, 2015

Reframing the family history to understand the family experience of illness

by Elizabeth Menkin, MA, MD, FAAHPM

In caring for elders with chronic illness, I often encounter family history notes from hospital that simply say “noncontributory” or “father died of MI, mother died of stroke” or something equally unhelpful. Admittedly, family history as a predictor of risks for developing particular diseases or complications is not too useful or interesting when someone has already reached advanced age with a well documented list of comorbidites that already predict the patient’s likely cause(s) of death.

However there is a useful way to reframe the family history when talking to a patient/family already dealing with multiple chronic comorbidities or terminal illness. Ask who among family members and close friends has died, and what was that experience like for them: what was their involvement near the end with the one who died; what do they recall about what went well; or what were problems, etc.? This is often a key segue to fears, unresolved bereavement, erroneous beliefs, thoughts about inadequate care or limiting medical interventions, or opportunity to discover an absence of experience - a hole in their education about end of life.

A recent study by Amjad et al* showed that older individuals who have experience with end-of-life care of others show greater readiness to engage in ACP discussions, such as discussing quality vs quantity of life. In contrast, personal experience with major illness did not correlate with such readiness. I am probably not unusual in finding myself surprised when patients with major health problems with limited prognosis are not forthcoming with thoughts about their own end-of-life care. But here is a way to open the discussion to find out ‘where they are at’ by talking about the experiences they have witnessed. It is another way of implementing the Yahoo Maps approach to EOL care. Meet patients where they are: you can't know how to get where you're going if you don't know where you are starting from!

Elizabeth Menkin is a Geriatrician and retired Hospice Medical Director formerly at TPMG Inc. and then at SDH-IPM (z’’l). She is now content to deal with ‘one starfish at a time’ in Saratoga, CA. She gains no income from the Go Wish cards, but avidly promotes their use.
Amjad H, Towle V, Fried T (2014). Association of experience with illness and end-of-life care with advance care planning in older adults. Journal of the American Geriatrics Society, 62 (7), 1304-9 PMID: 24934237

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