Rodney Syme: Dying autonomy

AT a recent national medical students’ conference in Melbourne I spoke about voluntary assisted dying, describing it as “a process of open discussion about dying”.

I told the conference that an open discussion “allows informed decisions by competent individuals, supported by their doctor with assistance in living so long as the person finds meaning in their life, and the prescription of oral medication, if the person requests it, that the person can take, or not, in their own home, at their own time, surrounded by whomever they choose to share their dying experience and say goodbye”.

I argued for this option on the basis of six medical “givens” about the end of life.

These givens are that:
•    Dying may be associated with intolerable suffering that may rise to a crescendo as death approaches
•    Some suffering will only end with death
•    Doctors have a duty to relieve suffering
•    Palliative care cannot relieve all pain and suffering
•    Some patients do rationally and persistently request a hastened death
•    Doctors have a duty to respect patient autonomy.

What palliative options currently exist for persistent and rational requests for a hastened death in the face of unrelievable and intolerable suffering?

The American Academy of Hospice and Palliative Medicine cited three. The first, refusal of life-prolonging treatment (not an option many patients have); and second; voluntary refusal of food and fluids — may result in slow dying over some days, and there was no mention of palliation of associated suffering.

The third option was the offer of “palliative sedation, even to unconsciousness”. This is a process of titrated medication, controlled by the doctor, not the patient, which again may occur over some days. It is usually associated with withdrawal of fluids.

It is a process that clearly leads to death, albeit slowly. Some palliative physicians have called it “slow euthanasia”.

The slow titration approach to palliative sedation is not based on legal concerns — a doctor providing medication with the intention of relieving pain and suffering, which foreseeably hastens death, has no legal problem. The AMA Code of Ethics supports this approach.

The palliative care problem stems from its philosophy, which states that palliative care neither prolongs dying nor hastens death. The patient may suffer a partial relief of suffering and a slow death to protect the moral interests of the physician. In whose best interests is the doctor acting?

The federal government is seeking submissions on the exposure draft of the Medical Services (Dying with Dignity) Bill 2014, which includes reference to the rights of terminally ill people to seek assistance to end their lives.

However, governments in Australia currently support palliative care, stating that it renders the option of voluntary assisted dying unnecessary.

This ignores a significant problem — the not too occult religious philosophy underpinning palliative care, 60% of which is provided by the Catholic Church in Australia. This, of course, puts much practice in a specific moral and ethical framework, which may be quite contrary to that of those being treated.

Don’t just take my word for it – read the work of UK palliative care consultant Fiona Randall, English sociologist Julia Lawton, University of Queensland associate professor of sociology Alex Broom and Australian palliative care physician Professor Ian Maddocks. All speak of experience from within palliative care.

Many doctors avoid or deny conversations with their patients about dying for a number of reasons. It can be difficult if you are not accustomed to it and some doctors are ignorant, or are in fear, of the law. And some may have a moral difficulty in talking of voluntary assisted dying.

But for many patients, just being able to talk openly about their fears and distress can be therapeutic, and such requests should not be met with a flippant remark such as “don’t worry, I won’t let you suffer”. Just discussing the option of voluntary assisted dying with a patient can have a profound palliative effect.

I can find no logical reason why a person, dying with unrelievable suffering, loss of meaning and control, should, by law, go to the very end of the line. Many patients say that they would like to die at the end of the day, as the sun is setting, rather than go in the dark night.

At the medical students’ conference, I asked these neophyte doctors to compare these two ways of dying for a person who had fulfilled the six medical “givens”.

Would they respect their patient’s autonomy in this circumstance?

Dr Rodney Syme is the vice-president of Dying with Dignity Victoria.