Thursday, 7 October 2010

Terminally Optimistic Medicine

Thanks to Dr Charles ( for the link to a very long, detailed and somewhat gruelling essay in the "New Yorker" - gruelling but very valuable to those of us who are trying to fumble our way to a better understanding of our own mortality. It may upset you if you are, or if someone close to you is, having treatment for cancer, but it may just possibly be of particular use to you.

The details are medical but not opaque, the setting is the USA but much of it is translatable He deals with how bad we are (medical profession, families, the ill person him or herself) at addressing the reality of terminal illness and making good decisions about it. It's a complex business, of course, and we often worsen it. He examines what professionals have come up with to improve matters. A few quotes below to give you a flavour:

"Hospice has tried to offer a new ideal for how we die. Although not everyone has embraced its rituals, those who have are helping to negotiate an ars moriendi for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment." (This bit follows a look at how difficult it is for doctors not to be optimistic, to offer unrealistic hope to terminally ill patients, purely out of kindness, a kindness which can actually result in unneccessary suffering.)

"One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake, Block said. “A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany."

"The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.

More often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.” All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want."

Read more

Underlying all this is my old enemy, our culture's attitude towards mortality. If we worship youth (a beautiful thing, youth, to be sure, doesn't last, you know); if we are terrified of looking old and enlist skilled surgeons to try to avoid it; if we fill our lives with restless and relentless pursuit of stuff - things - for stuff's sake - add to the list what you will - we still can't avoid our own mortality.

I met with someone recently to discuss the funeral of his partner. Their children are young. You won't need me to go on about the especially cruel nature of the pain this family have endured and are enduring. He said they deliberately hadn't asked for a prognosis, because they understood her illness to be fairly rapidly terminal. She came home from her final outpatient hospital treatment, and they spent a week together with the children - an entire week, nothing else on, no work, just each other. They'd never done that before, and he said it was a high point of his life - and of hers. She died at the end of that week, and she was only in hospital for a few hours right at the end. It wasn't that she refused treatment - she hadn't - but that she had worked out her priorities. Seems to me she had worked out how to die, even if that may not have been how she conceptualised it.

They had avoided the desperate optimism of skilled and of course well-intentioned doctors without turning their back on some appropriate treatment, they had managed to exert control over the situation, and they had generated amongst themselves what sounded to me like the best possible end she could have had.

The bit I've italicised above is the key for me in all this. Unless we are one of those (lucky?) people to whom the Grim Reaper arrives in a moment, at a reasonable age*, we may have to deal with a decline towards our death, a medically-managed decline. If we have never contemplated our own mortality, then the situation may be many times more dreadful than it need be. I've quoted the Dalai Lama before: "The trouble with Westerners is that they don't think about death until they are dying, and it's a bit late then." And no, that's not an invitation to be morbid (the DL seems a pretty jolly old cove to me) just to be human, and accept our humanity.

*I know - neither do I know what's reasonable - but early forties isn't....


  1. Thanks for sharing your thoughts in that last post. You have a talent for making a hard subject clear to others.

  2. Thanks to you for your encouragement, it's always helpful to know one isn't just shouting into an electronic vacuum.

  3. A great quote that (thank you). And a beautiful and sad story about the young woman. I have a feeling that, with acceptance, comes responsibility - and an understanding of when it's best to say, Stop, enough. "Because Death would not stop for me, I coolly stopped for him."

  4. Fine quote from you Charles, thanks. Sometimes the great lines come bounding in just when they're needed, don't they? (Other times, of course, I can't remember where I put my bloody glasses, let alone a line of poetry half-learned forty years ago.)

    I think you're right - acceptance is the key, and people may need helping towards that acceptance sometimes, by the very medical staff who don't want to accept. Too many Custers and not enough Robert E Lees, perhaps, though we are told that's changing.

    The author of the article fears that too often medical treatment takes away the moment when someone still has the ability to "cooly stop for Death," because they are, for the best of medical motives, encouraged to hold on to treatments offering impossibly long chances, instead of being helped to see where they are and what can or can't be realistically done, until such a point that they cannot exercise acceptance, responsibility and therefore control.

    Hence the growing importance of what people used to call Living Wills (can't remember the better term) all about what medical treatment you do or don't want in a terminal situation.

  5. I worry about Living Wills, we can all be brave in in good health, and of course nobody wants to be kept alive in a persistent vegetative state, but recent brian scanning techniques have shown a deeper awareness than we previously thought in these cases,(opening up a Twilight Zone flash of horror) and I for one will probably be grabbing every available medical lifeline when the time comes. I may not of course, but I don't want to have made that decision glibly, with an airy certainty that I would always choose death over a life compromised, but life none the less.
    Required reading on this subject is How We Die by Sherwin B Newland, the most unflinching yet compassionate look at, well, how we die. Brilliant.

  6. It is perhaps not the persistent vegetative state that worries me (selfishly, since the horrors then are for others and one is, I understand, completely out of it)it's the medication and the feeding to prolong life by a few hours or even days when the individual is in a terrible state. Fiendishly difficult decisions, but the point in the article I refer to is that it takes time to prepare people for accepting that they are going to die, and if a doc keeps talking about an experimental treatment with a 5% chance,it may be eagerly grabbed rather than relinquished in favour of a more lucid and very slightly sooner death.

    Anyway - thanks for the book recommendation. On a cheerfully pedantic and juvenile note - lovely typo above, if we remember the Life of Brian. You refer to a "brian" scanning technique. Family round the bed, brian scanner searching in vain - no, no sign of Brian yet, when's he going to show up and do something miraculous about all this, isn't he supposed to be the Messiah? Enter his Mum: "he's not the Messiah, he's a very naughty boy" (sorry)