More PSA

Good to know, for your loved ones and maybe even yourself: There really is a difference between a person who makes decisions no one likes and a person who is incapable of making their own decisions. Unfortunately, well-meaning people can blur that difference by forgetting that there is no law that forbids a competent person to choose to live in an "unsafe" manner. It's is a good thing there is no such law, or else we would be arresting everyone who chooses to skydive or mountaineer, and if we got totally crazy we'd arrest everyone who chooses to drive a car.

So, if your loved one decides she wants to return home to independent living even though her heart might stop at any moment, say (or any number of other things), and that completely freaks you out, you do have some ethical choices. You could ask the loved one to reconsider; you could scrape up money and hire attendants; you could move in with the loved one or ask the loved one to move in with you assuming you can take care of her. But, if your loved one clearly understands the risk of sudden death (or whatever) and is willing to incur that risk because of her desire to live independently, and can be clear about that, chances are she is not incompetent. You can really disagree with her decision, you can wish she'd go to a nursing home or something, you can try to talk her into doing it your way, but you may not succeed.

You can intervene if your loved one is not capable of understanding her risk or is not able to decide whether that is an acceptable risk. If your loved one has dementia such that she cannot understand her condition and its consequences, you can intervene. If you are her designated decision-maker, you can override her wishes in aid of her safety. If she doesn't have a designated decision-maker there are ways of filling that gap. But if she's competent, all you can do is figure out how you wish to cope with the possible consequences of her decisions.

The systems in place for determing competence are not idiot-proof and some are not even fool-proof. I recently heard of a situation where an elder was found incompetent because the family felt her choices were unsafe, even though she was clear about her condition, wishes, and risks. She was seen by a mental health evaluator and thought the questions she was asked and the test she was asked to take were stupid and irrelevant, and said so. She was absolutely intransigent and crabby besides. The evaluators couldn't figure her out and decided she wasn't competent. Not so. The patient was perfectly competent to make decisions--she just made decisions other people didn't like.

We who work in hospice can fall into the trap of feeling that any sane person would like the care we can provide at end of life. Who on earth would want to be in pain, alone, and unsafe when there are options? Who wants to die in an emergency room or ICU with tubes in every orifice and machines for company? As it happens, plenty of people would make that choice--people for whom, say, agency and independence are much more important than comfort and safety. I met such a person once when I attended a hospice referral. EVERYONE involved--doctors, nurses, family, hospice admission staff--felt that receiving inpatient hospice care was in the patient's best interest. The patient, however, did not agree. And the patient was clearly competent to choose. This patient was a fighter, down to the bone. Remaining a fighter was how the patient found meaning and identity. The patient had a bad disease and knew it, but was not done fighting and might never be. I felt for the family because this patient would be hard to take care of, but we could not give the family the comfort of believing the patient incompetent. Hospice could have provided comfort and support and safely, but comfort and support and safety were not important to the patient as fighter. Our values did not match. I am guessing the patient probably did die in an ICU unit, or will, having stayed a fighter until the very end. And that has to be OK, problematic as it might be for those left behind.