Mr. Hendricks is a 58 year old with early-onset dementia that has progressed rapidly in the last three years. He is living in a continuing care facility with a nephew, Frank, as his substitute decision maker.
Mr. Hendricks has an advance directive, written twenty years ago, which specifies that if he were to develop dementia he wishes to refuse any interventions aimed at cure, including antibiotics for pneumonia, and states that he would find a life with moderate or advanced dementia not worth living. Cold and flu season is coming up, and staff at the continuing care home are wondering what their responsibility is if Mr. Hendricks develops pneumonia as well as whether Mr. Hendricks should receive the annual flu shot. Their concern is amplified because, contrary to Mr. Hendricks’ expectations, he seems to find considerable pleasure in his life with worsening moderate dementia.
Frank, Mr. Hendricks’ nephew, lives two provinces away and says that while they had a loving relationship, he and his uncle didn’t have a lot of “deep” conversations. He describes his uncle as “strong-willed” and someone who always seemed to be guided by an internal compass as opposed to external considerations. He’s unsure of what his uncle would want in this situation, but he wants to do the “right” thing and is looking to staff for guidance.
Staff have requested a consult to address their worries.
As you prepare for the consult, you start thinking about the central value of respect for autonomy and the distinction between the person who Mr. Hendricks was when he wrote his advance directive and the person he is now. In this case, you can think of ways that a focus on autonomy drives you to look at what Mr. Hendricks “then” wanted as the most important information, but also ways that focusing on respecting the degree of autonomy that he currently possesses might cause you to emphasize what Mr. Hendricks wants in the present. There are various ways to think about autonomy for Mr. Hendricks. You’re also attentive to the fact that in cases like this, concerns about best interests are often seen as being in tension with commitments to autonomy. You are wondering about what might be considered to be in Mr. Hendricks’ best interest, particularly with regard to the flu shot.
In the consult, you bring the reflections you’ve had while preparing to the table to help frame the discussion. Your impression in the meeting is that Frank is struggling with the substitute decision making role; he keeps on repeating, “I just don’t know what to do,” and seems deeply uncomfortable with refusing interventions for his uncle. A lawyer was also part of the consult and she spoke eloquently about the need to respect the wishes expressed in the advance directive, while several staff members described the joy that Mr. Hendricks took in singing with other residents and in tending to the facility’s garden.