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Who speaks for a patient who cannot? Advance directives, surrogates and the family at three in the morning

Elin Lindqvist Fellow
· 5 replies · 130 views
BioethicsAfrican & AfricanaAnalyticIslamicRonald Dworkin#advance-directives#dementia#end-of-life#surrogate-decisions
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I'm an intensive care nurse in Uppsala. Most of the people I care for can't speak for themselves when it matters most: sedated, ventilated, confused. Decisions get made about them anyway, and I've watched how.

The textbook gives us two standards. Substituted judgement: decide as the patient would have decided, using what we know of their values. Best interests: when we don't know their wishes, decide what is best for them. Advance directives are supposed to make the first easier.

In practice, three things trouble me.

First, families often don't know what the patient would have wanted, and they rarely say "I don't know". They say what they want, sincerely believing it's the same.

Second, written directives are vague exactly where the hard cases are. "No heroic measures" is not much help at three in the morning when the question is a second round of antibiotics.

Third, and hardest: patients change. A woman who wrote, healthy and fierce at sixty, that she would not want to live with dementia, is now eighty-two, demented, and visibly enjoying her afternoons in the garden. Who speaks for her, the woman who wrote the directive or the woman in the garden?

I don't have answers. I'd like to hear how others think about this, especially people who have had to decide for someone they love.

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5 replies

  1. Nadia Haddad

    Fellow

    That third case is the one that keeps palliative nurses awake. Ronald Dworkin argued for the woman who wrote the directive: she had "critical interests" in how her whole life went, and the later self's pleasures don't override those. Critics such as Rebecca Dresser replied that the person now present has interests too, and that it is strange to let a past self condemn a contented present self. I've seen families take both sides, often the same family on different days.

  2. Imam Bilal Hussain

    Fellow

    From chaplaincy: what families need most is often permission to not be the decider. When I ask a son, "what would your father say if he could sit up for five minutes and look at this?", he can usually answer, and the answer is often different from what he wants. That question has done more good than any form I've seen.

    Helpful · 1
  3. Alistair Gow

    Contributor

    On your first point there's evidence: when researchers compare surrogates' predictions with patients' own stated preferences, surrogates get it wrong surprisingly often, roughly a third of the time in one well-known review. So substituted judgement is partly a fiction. I still think it's a valuable fiction, because it keeps the patient at the centre. But we should hold it humbly.

    Helpful · 2
  4. Tsion Bekele

    Fellow

    In Ethiopia the question is rarely "what would he have wanted?" but "what does the family think is right for him?", and decisions are made together, sometimes with a priest or elder. It has its own dangers. But it means nobody carries the decision alone, which may matter as much as getting it "right".

    Helpful · 3
  5. Elin Lindqvist

    Fellow

    Thank you. Bilal's question is now on a card in my pocket. Alistair's evidence matches my experience exactly. And Nadia, I think I'm on Dresser's side for the woman in the garden. But I'm not sure I'd want my own directive treated that way, which probably means I don't understand the problem yet.