(The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 38, Issue 4.)
Eighty-five year-old “Jane” was raped after a middle-of-the-night break-in. She lived alone. Ninety-two year-old “Joe” refused to be convinced by everyone, including his own doctor, that his driving days had traveled well over the horizon. Jane’s desire to continue to live on her abandoned Detroit street, full of burned out shells and lots of over-grown weeds, was honored. Joe’s desire to keep driving was not. What makes the difference?
In February the Michigan chat-room for elder law attorneys quickly jumped rail to the national stage (ElderBar listserv) upon discussing a case where a nursing home kept an older adult against her will after she revoked her medical power of attorney. In the nether-land of fading capacity, the burning question becomes whether sufficient capacity occurs to respect one’s self-determination for the issue at hand, even if one’s decision invites what most would consider a high danger. Certainly, Jane’s steadfast desire to stay invited a repeat threat upon her safety if not her life.
So I entered the listserv fray:
Situations such as these hit the sweet spot of high legal, social, medical and ethical complexity. The seesaw of weighing safety and individual rights, once it ventures beyond black and white obvious scenarios, is as clear as mud. In this mud, we must somehow not only wade but act. Some of our colleagues remind us that the fundamental sanctity of being human must serve as our polestar as we each arduously slog through this particular mud pool. We all grapple with trying to hit the perfect balance and appreciate the exceedingly difficult task we all face riding this seesaw. Our hides and minds can get sore!
Being an elder law attorney and a geriatric care manager and having intervened in scads of these situations, I conclude that the analysis is extraordinarily individualistic. [I then shared the story of Jane]. Do we “make her safe” by removing her from her happy memory-laden home of over fifty years? Or do we respect her wishes, given she was ostensibly competent to make this decision, despite her perilous environment? After much deliberation and consultation with an urban gerontologist, it was my conclusion to honor her wishes--I otherwise might as well have ripped out her heart by securing her (physical) safety. I then shored up the home’s safety features by having the police do a safety inspection, getting the city to cut down the surrounding weed meadow, and encouraging her two children support her and visit her as often as possible.
In another case [I then describe “Joe.”], Joe has increasing dementia, lacks insight but is not necessarily incompetent. However, his questionable judgment led him to drive well past the point of being safe as he often got lost. He frequently falls necessitating hospitalization and rehabilitation. After a year of working with him and his daughter, we concluded that he was unable to appreciate the peril he was presenting on the road, and the daughter removed the car.
I had helped to empower Jane’s wishes, and dis-empower Joe’s.
All each of us can do is learn to ride this difficult and highly impacting (on the older adult) seesaw by being clear on:
1. the particulars of the person (strengths, weaknesses, insight, physical abilities…)
2. the particulars of the person’s supports (family, friends, relatives, social groups…)
3. the particulars of legally defined capacity
4. the sanctity of the human being, no matter how incapacitated s/he may be
5. the wishes of the person
5. the concerns of the caregiver(s) and others involved
I don’t see any way of doing justice to any of these situations without the involvement of a geriatric care manager or geriatric cognitive psychologist to weigh in on all these particulars. In other words, analyzing these highly complex situations in a purely legal manner ignores the fundamental intangibles of the affected human being.
After this off-the-seat-of-my-pants reply (aided by decades of experience), I dove headlong into further reading and realized that we need a better way to even begin the discussion on risk vs autonomy. A grid analysis resulted by combining well-known concepts of ADLs (Activities of Daily Living), IADLs (Instrumental Activities of Daily Living), and degrees of autonomous risk perceived when the affected individual undertakes various ADLs and IADLs. The Autonomous Range of Risk Analysis (ARRA) is presented below. Each stakeholder in the affected individual’s circle of support, including most centrally the affected individual, can complete the ARRA by taking a wide marker and begin the line within each ADL or IADL task presented where risk is perceived to begin for the affected individual acting autonomously, and continuing the line through the highest degree of risk presented by same.
The affected individual, the caregiver(s), and others involved in the affected individual’s life and/or care can all complete the ARRA. A productive discussion can then begin on where the risks are perceived, and what underlies each person’s perceptions. An affected individual lacking insight may be surprised by others’ perceptions and thus be aided by this “reality check.” Perhaps s/he will be angered. If so, then those in his/her circle of support will have a clearer understanding of the affected individual’s perceptions. In any event, having a more precise picture of where each stakeholder stands will facilitate more productive discussion on where the affected individual’s autonomy can be enhanced with appropriate supports, and where hard lines needs to be drawn.
Jane’s autonomy, for instance, was enhanced by shoring up her home’s security measures, leveling the surrounding weed meadow, and getting her children more involved. Joe’s autonomy found it’s limit in the task of driving. However, more precision can occur by stakeholders in considering other areas of his life where his autonomy can be enhanced. Let me know if the ARRA seems useful in your work.