My five-year old sons favorite show on TV is called Railroad Alaska. Just in case you haven't figured out why by the title alone, may I just ask what self-respecting five-year old wouldn’t love a show whose protagonist is a train and whose antagonist is snowpack in various forms, including avalanches. I though despise the show, mainly because nothing really ever happens during any of the 60 minute long episodes (aside from the aforementioned avalanches). However, I do find it interesting that most of the semi-staged plots focus on older couples who are living off-the-grid, miles away from anything except a railroad line. There are often clips of their children talking about how their weekly/monthly visits are really the only help the older adults get in their rural homes. The children also talk about how far away their parents are from any medical care, and if she/he had “another” stroke, they would likely find him/her dead a week later. But they all seem comfortable with this fact of life in rural Alaska, and they wouldn't have it any other way. Safety takes a backseat to independence and autonomy.
Compare that with the scene that is discussed in a NEJM article published by Alexander Smith, Bernard Lo, and Louise Aronson. Alex and company write about a 96-year-old widower with critical aortic stenosis and mild cognitive impairment who is having progressive dyspnea. Like those living in rural Alaska, his son also visits his fathers cluttered and dirty house about once a month. Also, similar to the mindset of those off-the-girders, the 96 year old states when admitted to the hospital that he wants “to leave my apartment feet first. I’m going home.” He also rejects the idea of “strangers” coming into his house to help him out despite his sons concern that his dad can’t continue to care for himself alone.
What should the health care team do in this setting when the patient retains decision-making capacity but is making a very unsafe decision? Respect the patient’s autonomy and independence, or protect his safety? Alex's article suggests these four practical steps to help with potentially self-neglecting patients:
- Avoid setting too high a threshold for safety
- Try to persuade patients to accept interventions that promote the goal of remaining at home
- Do a home visit (and have the health care system pay for it to prevent re-hospitalizations)
- Plan for worst-case scenarios and document in advance directives
Alex goes more in depth on all four of these points in his NEJM piece. What resonates with me the most is the focus on the patients goals, even if it does mean that meeting these goals may increase risk for the harms seen with self-neglect. Alex's also doesn't advocate that we as health care professionals wait for someone to fail at home, but rather that we take an active involvement in the care of the patient, using persuasion and trust building as techniques to minimize risk. I think this is the key point that prevents clinicians from the ethical quandary that Helen Chen wrote about in a previous GeriPal post (The "Right" to Fail?):
But, while we can and do use individual autonomy as the principle that enables us to ethically step back and however regretfully watch the train go off the cliff, the emphasis on individual autonomy may also give us, in some sense, the right to fail families and caregivers, and perhaps even the patient herself.
by: Eric Widera (@ewidera)
Note: for more food for thought read Ken's post on self-neglect as a palliative care emergency