My late father used to say that suffering from advanced emphysema was like gasping for air after running a marathon, and having a sock stuffed into your mouth. So when my sister Peggie Nairn also developed cigarette-induced emphysema she had some idea of what to expect.
By the time her emphysema was very advanced, at age 74 years, she had been dependent on continuous oxygen for five years and could not so much as make a cup of tea without experiencing severe air hunger and laboured breathing.
In the final months of her life she discussed with me many times her wish to end her life. As an anaesthetist with ready access to the medications she would need, this presented a dilemma. It appeared there was no one else Peggie could turn to, as assisted dying is against the law.
In the end, help came from the interpretation of a doctrine called ‘double effect’, well known in palliative care.
This doctrine allowed for a form of assisted dying called Terminal Sedation (TS) to be provided to Peggie, at the Bethesda Hospital Palliative Care Unit.
TS is an infusion process involving continuous sedation up to the point of death. It is thought to be a defensible position in the court, but it is my understanding that it does not necessarily exempt the physician from a murder charge.
In Peggie’s case, it worked well. After removing her oxygen and receiving subcutaneous sedation, she fell asleep and remained so until she took her last breath twelve hours later. However, it should be said that, unlike voluntary assisted dying (VAD), which is efficient, certain and pain-free, the timing with TS is usually less certain. The patient may linger in an anguished or comatose state, dehydrated and deteriorating.
TS is arguably legal, or at least common, because it is deemed to be a practice that relieves pain or suffering, while VAD is not legal because it is a deliberate act to end life. But the difference is contrived rather than real, given that the final outcome and the intention are the same. While VAD is an autonomous and deliberate choice of the patient, TS can more often be the decision of the physician.
Simply having the choice to end one’s life when suffering becomes unbearable can greatly relieve anxiety to the point that patients can enjoy their remaining time.
As a doctor, I’ve come to realise people fear the process of dying far more than death itself. More than a third of patients granted access to Nembutal never actually use it.
Palliative care can reduce pain for many people but not everyone, and not without affecting consciousness in the case of TS. Research from the University of Wollongong’s Palliative Care Outcomes Survey shows five per cent of WA patients have what would be called a ‘bad death’. Peggie had watched her husband Donald die in terrible agony from bowel cancer. Community nurses provided her with extra morphine to give him, but it didn’t work. It was not just physical pain he endured, but also loss of dignity and control.
Peggie was happy she got to say goodbye to her loved ones, and to have her daughters with her. She did not believe in an afterlife, but was so happy with the care given to her that she jokingly remarked: “there must be a heaven after all”.
Despite the tears, there was a tangible feeling of relief and acceptance, amongst friends, family and staff. Peggie had been granted her last wish.
Dr Peter Beahan (retired), February 2019