This was an inspiring and deeply thoughtful meeting. My notes are a pale shadow of the meeting but may have some value.
The plural of anecdote is not data because important information is lost when anecdotes are gathered into data
And the singular of data is not anecdote because anecdotes are much richer and complex, more human.
Date and anecdotes have in common that they are always incomplete.
Case reports have almost disappeared from “top journals,” but there are now 200 case report journals. (How many are predatory?)
The “invisible glue” that keeps health care going: teamwork, doctors and nurses working together, mutual respect, continuity
Just as nobody can define “a good life” so there is no “good death”
Treating the symptoms of the dying simply unmasks their suffering
Life is messy, you can’t tidy it all up in the last few hours
Death comes unknown to us all
The concept of a “good death” actually increases fear
What looks like a “bad death” from the inevitably remote land of the living may be “good” for the person dying–perhaps somebody who insists on being unreconciled to dying
The concept of a “good death” gives us an illusion of control
The concept of a good death pushes death away from our lives
The concept of a “good death” attempts to sterilise death and “that distinguished thing” cannot be sterilised
Hospices are an odd space full of “wonderful people” doing “wonderful things” to “wonderful dying people” in a “wonderful place”
Doctors offer treatment, a good thing, but do they care? They certainly don’t care for patients as they care for kin.
You are not a carer because you want to be but because you have to be, says Alan Bennett. He didn’t care for the woman the van. She’d have hated to think that Bennett was her carer.
Those in nursing homes are not dying but are “incapable of living.” Alan Bennett
Medical language baffles and alienates us. It’s a harsh, unforgiving vocabulary that often seems to bear no relationship to our own emotional predicament.
How to interact with the seriously ill, their carers, and the berwaved: 1. Don’t ignore them; 2. Turn up; 3. Ask directly “How is the cancer?”; 4. Say “I don’t know what to say” if you don’t know what to say; 5. Avoid storytelling, particularly of “remarkable cures”; 6. Don’t try to be funny unless you’re sure you can carry it off
The isolation of the seriously ill and their relatives is the great unrecognised scandal of our age
There is an unbridgeable gulf between knowing about a serious illness and having (“knowing the presence of”) the illness
Serious illness is a proxy for death: we stay away
When we are seriously ill kin come closer but people in the middle ground fade away
The able bodied make the suffering of the seriously ill much worse
Most health care happens outside the health care system
Darwinism may explain how we behave around the seriously ill: we are trying to perpetuate or genes so kin selection (mating) and kin selection (children) matter most’ but “reciprocal altruism” is also important for protecting our genes and helps explain why we reach out to some of the seriously ill who are not kin
People who have young mates are most likely to desert them if they become seriously ill, taking the chance to find a new mate
But is this Darwinism too reductionist: might it be “the existential dread of death we all have” that keeps us away from the seriously ill
These days 20% of deaths are sudden; 20% swift (from cancer), and 60% slow–a big change to which we haven’t adapted
People with motor neurone disease write the best illness memoirs (they have the time)
Doctors who are seriously ill find their colleagues the most difficult people to deal with