It is quite a coincidence that I am teaching an ethics module this week on Truth-telling and Confidentiality for the Certificate and Master’s program for Clinical Specialists in Palliative Care. There are lots of challenges in palliative care practice where clinicians struggle with these dilemmas – is it OK to take off the nametag that identifies me as from hospice if so requested? Can the family ask that we not tell the patient their diagnosis of terminal cancer? Should I disclose HIV status to a decision maker for a critically ill patient dying of their HIV-linked brain cancer? But the topic that is “hot” this week is how to manage patients with dementia.
The New Yorker article on “The Memory House” (October 8th, 2018) asks the question about whether the illusions of dementia should be corrected or accepted. The author, Larissa MacFarquhar, describes a new way of interacting with dementia patients pushes back against the constant re-orienting of patients to their current situation – often needed on a daily basis: you are in a memory care unit, your wife is dead, no – you can’t go home. This “truth-telling” approach has been part of standard dementia care in many institutions. The concern is that this may result in repeated suffering, agitation, need for sedation, among other untoward effects.
This new approach says “lying” is OK. Toward the end of calmer, happier clients, staff at these alternative settings will say the dead spouse is at the office or will walk the client to the “fake” bus stop where they can wait together until the client wants to do something else. The rooms recreate an early setting of, for instance, small-town California in the 1950s. There is even reports of beach sand, wave sounds, films of familiar settings outside the windows, and old-style porches with rocking chairs outside the rooms. Philosophers have argued that painful truths can’t be assimilated by those with advanced dementia into anything that provides benefit. Respect and happiness trump truthtelling.
Olivia Gamboa, in a Geripal Blog responding to this, asks “Does ‘compassionate deception’ have a place in palliative care?” (October 30, 2018) Her question relates to whether the idea of “pleasant fictions” should be applied more widely in palliative care. She ultimately concludes that patients with terminal disease who are cognizant in general make “meaningful use” of prognostic information. The skill of palliative care consultants (as with other providers) is the “when” and “how” we deliver information – “being thoughtful about how we are speaking difficult truths, attending to our patients’ emotional responses and offering our ongoing presence and support….”