Monday, 6 May 2013

The art of dying well - and why you aren't being allowed to

On Saturday I attended what was billed as a 'Community Engagement Forum' put on by the ACT Local Hospital Network Council, to talk about that wonderful euphemism, 'End of life issues'.

It raised a lot of important issues.

'Community' consultation?!

Saturday's Community Forum, I have to say, did not start out well: as I came in the door I walked past a pile of material from 'Exit', the Euthanasia lobby group.

And in the opening speeches, ACT Chief Minister Katy Gallagher also felt the need to campaign for euthanasia despite the fact that the forum had been explicitly billed as not being about euthanasia, and despite the fact that the ACT legislative assembly (fortunately) does not actually have the power to legislate on the subject.

It also became clear pretty quickly that this was far from a representative group of the community more broadly: over a third of the participants were bureaucrats of one variety; another third plus were 'clinicians' broadly defined (doctors, nurses, paramedics, patient advocates, chaplains etc); and the three out of ten tables of 'consumers' were almost all seniors, most from organisations with a barrel to push such as Exit (though quite a number from the other side as well, as I've subsequently discovered).

The community being consulted was, in the main, a rather selective one of insiders, and of a particular generation whose views, I suspect, are not particularly representative of the wider community.

And the positions taken in the discussions reflected this: when I suggested that most people would prefer to die at home for example (which I've subsequently confirmed is supported by the research), most people at my table in the morning (consisting mainly of bureaucrats and 'clinicians') disagreed.  Most want to die in hospital, they claimed, in order to spare family members the trauma of it all, and to facilitate organ donation.  I pointed out that very few people have signed up as organ donors in this country, and in fact dying at home doesn't entirely preclude this anyway.  To no effect!

Thankfully though, one of the main speakers, Dr Peter Saul of Newcastle gave a talk that helped focus the debate admirably.  On euthanasia, for example, he pointed out that overseas experience showed that only a tiny minority of people are interested in having a doctor or someone else kill them - he quoted a figure of 0.5% in Oregon, USA and 3% in Holland.  Nor, he pointed out, is there any 'right to die' at any stage of our lives.

Dying well for the majority

The real issue, Dr Saul suggested, is how we treat  the vast majority of people.  And at the moment, he argued, dying is being medicalised in the way that childbirth was some years back.

The view that because we can do something, we should, he suggested, is pervasive in our society.  But in reality, we need to take a hard look at the morality and other implications of these decisions and not just let the technological solution become the default.

He told a salutary story: as a young doctor he wanted to pursue a career in obstetrics - tending those giving birth, he thought would be such a positive experience.  But on his first day on the ward he was given an 'amniohook' and instructed to break the waters and administer the necessary drugs to induce labour so that all the women due to give birth would do so at the scheduled time, regardless of whether the baby was ready to come or not!

Dying, he argued - and the other speakers provided statistics and cases to support his case - is similarly being transformed from something that takes pace at a natural pace into something controlled to an unnecessary degree by the medical profession and driven by reasons other than the genuine interests and desires of the patient.

Most people, for example, when asked say that would prefer to die at home.  But in reality, most people end up dying in hospital.

Even worse is the problem of 'futile treatment', such as Intensive Care use (at a cost of around $4,000 a day) when there is no hope of recovery: 45% of Canberra Hospital deaths were in Intensive Care, a shockingly high figure which is actually substantially lower than it was four years ago, and the rate in many other States.

Why is it happening?

The aim of the day seemed to be mainly to work out how to push increased use of 'advanced care planning', whereby people set out their preferences for treatment in the event that they can't express their wishes when it becomes necessary, and, perhaps more importantly, have a conversation with their families in advance in order to get families to go along with those plans when the crunch comes.

Some pro-life activists apparently have a problem with the Advanced Care Plan concept.  I don't agree - it seems to me that given the right framework and protections they potentially offer some protection against a system that is no longer premised on the 'first do no harm' principle.

But what did quickly became clear at the Forum was that simply raising awareness of the possibility of having an Advanced Care Plan will not solve the problem.

Even if you have such a Plan, in the ACT at least, it is not in any sense legally binding.  And the wishes of patients can, and, from what the speakers were saying (and my own limited experience) frequently are, overridden by family members, friends/carers and doctors.

Secondly, it became clear that the documents are not easy to put together and can be problematic.  Most people simply don't have enough information to anticipate the problems that might arise, or make clear just what they want in particular circumstances (these are not 'principles based' documents, though that approach has its own set of problems).

And there are issues too, it seemed to me, around just what a plan should legitimately be able to include that have not been openly debated.  It is one thing, for example, to make clear that you don't want 'futile' treatment; quite another to allow people to specify that they can be starved to death or left to die of thirst, or be deprived of basic treatments like antibiotics.

Fourthly, the system is currently premised on the idea that you are either capable of giving consent/making decisions or not, instead of supporting a continuity of capacity that might diminish over time, leading people who are still capable of expressing their views to be cut out altogether in some cases.  In principle I agree that recognition of continuing capacity would be preferable, provided there are some appropriate limits and protections in place - some of the examples quoted at the Forum seemed to me pretty problematic (I'll talk more about this in a later post).

Fifthly, and most importantly, Dr Saul argued that currently the system often pushes decisions in the direction of 'futile treatment'.  In a piece for The Conversation he suggests that the futile treatment problem  - which poses huge costs and thus impacts on the sustainability of our health system - is partly driven by the pressure on Emergency Departments - when someone dying arrives in the Emergency Department, it is generally quicker and easier for everyone involved to send them straight to Intensive Care rather than take the couple of hours needed to have the conversation with them and their family about the fact that they are unlikely to benefit from further treatment.

A number of the other speakers suggested that the futile treatment problem is also being driven in part by the fear of litigation from distraught relatives, as well as a reluctance of doctors to admit 'failure' in the form of death, leading them to always want to try just one more thing.  I would argue that the quest for funding and incentives around the pharmaceutical, pathology and medical device industries, clinical trials, and the 'publish or perish' imperative may also be factors in this.

We need to address this issue, because it does seem to be real, and it goes straight to the issue of the dignity of the person who is dying, and their capacity to have a 'good death' in the traditional sense of the term.

But it is also important because the ever increasing cost of the health system is in part driving the push for euthanasia (voluntary or otherwise!).

Attitudes to death and dying

One of the overarching themes of the day was the claim that people are reluctant to talk about death and dying, and confront issues about their preferences in the event they aren't able to express them.

The task then, in their view, was to encourage people to have' the conversation'.

I'm not actually convinced this is entirely true - most of my generation (those in their early fifties or thereabouts) are having to face up to these issues as our parents become older and frailer or we ourselves observe the deaths of friends and family, or our parents reactions to the death of their friends.

It seems to me, from more than a few conversations on this subject, that we come away from these encounters disquieted, but not sure what we can do or say, or could have done better to influence outcomes.  Certainly that was my own motivation for attending this particular forum.

The problem, I think, is rather that there is no longer a consensus, even among practising Catholics, on what constitutes a good death, but rather sharply divided views.  We paper over these schisms partly in the interest of avoiding conflict, and partly because we lack the framework to deal adequately with them.

Somehow we need to try and recover the Catholic framework around death and dying, and where the tensions with what seems to be happening in so many cases liwa.  The traditional framework - which sees life as a God-given gift, and focuses on the dignity of our human state; that sees this earthly life primarily as preparation for heaven; and sees meaning in suffering - has largely been undermined, I think by secularist notions that reject the importance of community over the individual's autonomy, and by the continuing promotion of science's (sop far illusory!) claims to cure the problem of mortality.

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