13:02, October 04 41 0 theguardian.com

2017-10-04 13:02:03
Helping someone die well is the final act of caring I can give as a doctor

Claire and Bob have been together so long it’s impossible to imagine one without the other. He’s a walking – well, waddling – textbook of modern medicine. With his impressive girth, arthritic hips, diabetes, hypertension and gout, I get to see a lot of Bob. So it was unusual when it was Claire who presented with some nasty sounding pains. A flurry of tests and specialists and the answer came back: widespread secondary cancer, manageable but not curable. The best bet? A brutal course of chemo to keep the beast at bay.

Claire only ever dresses in purple, green and white. Feisty still, as a young feminist she would have been formidable, relishing the gender fight – a fight that even today she knows is far from over. But right from the start she knew that this cancer was not a fight she would win, and I was not surprised when she declined chemo. “I’d rather make the most of the time that’s left.” And it was also no surprise to me when she asked about her end of life choices. “When I’m near the end, I’d like Bob and the kids there, have a little party and say goodbye, then go. At home.” For Claire it’s not the pain that scares her, but the futility of eking out a few extra days or weeks with drips and tubes, declining function and declining dignity.

With the Voluntary Assisted Dying (VAD) legislation before the Victorian parliament, there is finally the possibility for people like Claire to have their wishes fulfilled. It’s an option that a very small group is likely to want or need. Overseas experience suggests that only a tiny percentage of people with end-stage illness choose VAD, most dying at home or in care in the same way as before the legislation existed. Even though she may not need it, why should someone like Claire not be free to exercise this choice? Here are some of the various arguments that are put forward:

Could coercion occur?

The proposed legislation contains a raft of measures to ensure that any request is made freely by someone of a sound mind. Could coercion still occur? Possibly, though with the safeguards built into the legislation it’s hard to see how it would not be picked up. On the other hand, the current lack of any regulation leaves vulnerable people open to all sorts of risks of coercion, with no checks and balances available. If coercion were a voting politician’s main concern, the only logical outcome would be to support VAD.

Ditto when it comes to feeling a burden, but with an extra element. Claire has adult kids and as she put it “I adore my kids, but I don’t want them having to look after me as I fall apart. I wiped their arses, but I don’t want them having to wipe mine!” (Told you she’s feisty). In Claire’s world, the decision about what level of burden she will accept becoming is hers to make, and no one else’s.

Helping my patients end their days well

We doctors love our Latin. I’ll let you in on our little secret – we only really use it to make us sound more sophisticated and knowledgeable than we really were, a useful disguise for our bewilderingly inadequate understanding of the human body and its complexities. Even these days, a little more honest about our limitations, we still enjoy resorting occasionally to a bit of linguistic mystique. “Primum non nocere” is one of our best-known phrases, often said to be part of the Hippocratic oath that all doctors are required to take. Here’s another little secret: it doesn’t appear anywhere in the oath, which – yet another little secret coming up – we don’t actually take anyway (if I go on like this, we’ll have no mystique left at all).

Primum non nocere means first do no harm, a sensible and appropriate dictum (more Latin) that most doctors fully agree with. It is sometimes used as a reason why doctors should not be involved with VAD, for what greater harm could there be than death?

I completely disagree with this argument. I may have little assistance to offer my patients with their taxes, but when it comes to life’s other certainty, I see it as our last and in some ways greatest responsibility. I have seen awful deaths, average deaths and many deaths which went pretty well. If it has been my job to help people live their lives as healthily and well as possible within the bounds of their preferences, surely it is also my job to help them end it in a manner as befits their wishes? Helping someone end their days well, in accordance with their individual wishes where possible, is the final act of caring that I can provide.

Palliative care and VAD are not mutually exclusive

Why do so many complex ideas get reduced to simplistic binary questions? Good palliative care is crucial, should be properly funded and available for all those who need it. VAD is not meant to be in some sort of opposition to palliative care, but an option for those whose suffering cannot be adequately addressed by even the best palliative care. Palliative care and VAD are complementary, not mutually exclusive.

For the overwhelming majority of people regular medical care, the help of family and friends, and at times high quality palliative care, provide all that is needed. There remains, however, a small but very important group for whom even the best care cannot relieve their suffering. This suffering may be physical, with pain, nausea, pressure sores, the inability to eat, incontinence and so on, or may be the psychic distress that comes from the loss of function, independence and dignity associated with their illness. It may be a combination of any or all of these. Knowing that death is imminent, some like Claire would prefer to die sooner at a time and in a manner of their own choosing, with support from friends and family, rather than allow a protracted period of undignified suffering to drag pointlessly on to its inevitable conclusion.

As a clinician, I firmly believe that people have the right to choose how they live, which includes having choices about how they die.

Listening to Claire speak, it is obvious to me that there is something that she wants and needs that no amount of excellent palliative care and pain management can provide. That something is control, her autonomy to make a reasonable decision that is right for her.

What about the “slippery slope”?

This argument concerns many people. Fortunately I believe it is easily addressed.

  • Research from jurisdictions overseas with VAD laws has not shown any significant evidence of slippage.
  • The proposed Victorian legislation is the most cautious of any in the world.
  • Any change in the laws here could not just happen, but would require further debate and legislative change.

Do we really want to avoid making a good law now because of some theoretical and unlikely concern about something that might, but probably won’t, happen in the future? Using those criteria, I can’t imagine too many laws of any kind that would pass.

In the end, the central questions about VAD are not about doctors like me, nor politicians, lobby groups or anyone else. They are about people like Claire and Bob and what choices they have. No one opposed to VAD has to make the choice that Claire, fully supported by Bob, is considering. Supporting VAD takes nothing away from anyone, makes no one worse off, but provides enormous comfort to a very small group of people like Claire. I fervently hope that her future, however long it may be, does not involve the need for VAD. But equally fervently, I want it to be a choice available to her if and when it does become necessary.

  • Nick Carr is a GP in St Kilda and an ambassador for Dying with Dignity Victoria

  • Claire and Bob’s names have been changed to protect their identity