Bioethics, healthcare policy, and related issues.
I saw the just-released Neil Young concert film, “Heart of Gold”, last week, and it was lovely. In terms of production values, it is far from Jonathan Demme’s best work – at certain times it looked distinctly amateurish – but it does a perfectly acceptable job of conveying the concert performance and the music, which is all that really matters. It’s a simple film – a straightforward record of the best of two nights’ performances at Ryman Auditorium, Nashville (the “Grand Ol’ Opry”), by Young and a huge group of backing musicians, some of them major stars in their own right, with little filler or “backstage secrets” nonsense to break it up. It contains a few chuckles – one of Young’s longtime bandmembers recounts that he slipped in the back door of his first recording session with Young, decades ago, and they had recorded five tracks together before introducing themselves; Young also explains from the stage that the “old man” in his hit song of that name (“Old man take a look at my life / I’m a lot like you were . . .”) was the caretaker on his farm, who couldn’t believe that a “rich hippie” had enough money at such a young age to buy a big spread like that. Mostly it just contains people making music, and the movie rarely gets in the way of its own story, which is a very good thing. Young comes across as a gentle, wise man moved by a kind of sweet longing for connection with friends and family. (It is hard to believe he once wrote “Southern Man” or “Ohio”.) In fact, I was struck by how many of his songs are explicitly about friendship, and how much he values it the older he gets – they far outnumber his songs about romantic love, the standard grist for the country/rock mill.
It’s a very enjoyable movie whether you’re a Neil Young fanatic or not. I recommend it to anyone. But enough of that. It was the bioethics content of the concert that I really wanted to comment on.
OK, there’s not really much bioethics content in a Neil Young concert, but there was one moment in the film that struck me strongly.
Young was introducing a song in memory of his father, who had died from complications of Alzheimer Disease not long before. (A closing credit quietly dedicates the film: “for daddy”.) He said that, in the last months, his father had been unable to recognize anyone from his family, and he remarked “It’s an amazing thing, seeing someone you love like that, living in the moment.”
That line remains with me, indelibly. “. . . living in the moment“. A perfect description of someone with advanced dementia, unsparing yet unpitying, and un-self-pitying.
Young never intimated that the loss of his father’s memory was a loss to him (the son). His father was still there, still, literally, present, living in the moment though the past was gone to him. Young clearly regretted what had happened but never implied that his father was diminished by it as a person.
At one point he recounted a statement by one of his family’s young grandchildren, who claimed that Grandpa was still alert and aware of things because, one day in the car, he had blurted out “squirrel” on seeing one in the road. Young clearly knows the little girl’s assessment is wrong, but that carries no terrors for him. He told the story as a wry joke – not clinging to a false hope but not finding pathos where it was not needed. His father’s life was largely gone, but his father remained, for a time at least, and that was how things had to be.
That tone characterized Young’s remarks throughout. He related the death of his father, and said that they’d held “a real nice memorial” for him later. He said it with sadness but without wistfulness: he missed his father but did not pretend things could be or should be other than they were. The memorial was nice, whether the occasion was desired or not. (This strikes me as very much a “country” attitude, in the best way.)
This wisdom is of significance for those, like me, who emphasize “personhood” in bioethics and seek to make clinical decisions on the basis of its presence or absence. I think those who are acutely aware of the issue are also usually careful to distinguish between loss of personhood and loss of other qualities or capacities not necessary for personhood – the professionals who make those distinctions do not usually make the same mistakes many of the public do, for instance in failing to distinguish between “coma”, persistent vegetative state, “brain death”, and mere unconsciousness. But it is easy, at the same time, to overemphasize the significance of loss of memory and other mental capacities – to regard the life of a person with advanced Alzheimer Disease or other mental incapacity as marked by unremediated diminishment. Certainly it is gravely distressing to friends and family to see their own relationships with the patient changing, and the shared content of those relationships slipping away – but that is precisely the trap we should not fall into: imagining that change in a patient’s life that comprehends loss to others is a loss to the patient in the same way.
In some ways, mid-stage Alzheimer Disease is worse than the advanced condition, because patients are often aware of their own fading memories, or because they are subject to repeated traumas on re-learning what they had forgotten (having to be told every day that their husband is dead, for instance). Late-stage dementia can be a peaceful time, one of “living in the moment”, and that should not be regretted however much we may regret our own losses from the patient’s disease. This is not a state anyone would choose for themselves, but when it comes ineluctably and in ways we cannot prevent, it does not have to be regarded as inherently tragic. And, of course, it is far from a loss of moral personhood, even if it comprehends (arguably) a loss of personal identity.
This is worth bearing in mind (and, perhaps, communicating to the public better than we have managed to communicate “personhood” as a general concept). It’s an amazing thing, to witness someone living in the moment. It is a thing worth contemplating with an appropriate sense of profundity, not melodrama.
Thanks, Neil.
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November 28th, 2009 at 5:16 PM
[...] here for a similar observation from an equally-surpising source.) [Comments (0)] [...]