Palliative Care in Australia - myths and realities
by Dr Mary Brooksbank
This article first appeared at Palliative Care Australia's website. Dr Brooksbank cuts through some of the myths about palliative care and provides a good point of reflection and a prism with which to view the 'hard case' stories that we find in the media that push towards euthanasia and assisted suicide. As with many an issue, there's always more to the story as Dr Brooksbank explains...
I’ve spent about 40 years looking after people who were dying. I was a burns surgeon for the first half of my career and I have since worked for 20 years in specialist palliative care.
I’ve watched many people die peaceful deaths which could easily have been traumatic and painful, including my father. So I’m interested in the euthanasia debate which has recently sparked again.
I can understand why people want to alleviate suffering at the end of life, and why they think voluntary euthanasia might be a compassionate way of achieving that. But with good palliative care, no-one needs to die in unbearable pain, whether they die at home, hospice or hospital. I’m not sure that advocates of euthanasia really understand that.
Sadly, in Australia, a small number of people do experience pain while dying expected deaths. There is no denying that painful deaths occur. There are complicated cases, where people have pain that is generated in ways that are very difficult to turn off. There are times when people will need a palliative care specialist and a full palliative care team to help support them through. But no-one dying an expected death needs to die in extreme, agonising pain. If they do, it’s because they haven’t had access to good quality palliative care. They should have had that access.
Part of the problem is that many doctors, who aren’t palliative care specialists, are still learning about palliative care. They’re learning to identify patients who need specialist care, and when and where to refer them. Many doctors have up-skilled and developed palliative care skills that they weren’t taught at medical school. But I believe it is inappropriate to be having a debate in our society about euthanasia until every single health professional knows how to relieve pain and address suffering properly.
Sometimes sedation plays an important role in relieving pain; something I learned when my Dad was dying of prostate cancer. Right at the end of his life, Dad developed delirium and started reliving agonising war experiences. As well as experiencing physical pain, his psychological suffering was extreme. I was a young doctor and had no understanding of palliative care or pain relief, but his very wise GP found a combination of medications that calmed Dad and kept him comfortable.
Once Dad was settled, the GP said “I don’t think we should let him surface again”. Like many people caring at home for people who are dying, my role was to give Dad the injections his GP had prescribed. I gave them when he started to become restless again; twice over about six hours. After that, my Dad died. That was almost 40 years ago, and it was an example of good palliative care, but I spent a long time thinking at one level I had killed him. He died of his illness. I didn’t kill him. All I did was give him symptom relief, but it took quite a long time for me to genuinely process that.
Since then, many times in my career, I’ve seen really good stuff happen in families when someone is peaceful while dying. Not all families resolve all of their issues of course, but it’s a time when they do talk and very important conversations can happen. Inevitably it is sad. But I’ve heard people describe it as a beautiful time too.
I’ve also seen many patients who are strong in themselves, who desperately want to be relieved of their burdensome body. They are clear that they want to die. The right medication can help with this too, giving them a break so they can make the most of their final days.
I remember a man who was extremely distressed with severe breathlessness (too often as a palliative care doctor I would be called to people in crisis like this). For him the only possible relief at that moment was the sedation I gave him, and a few hours later, he woke up, and wanted to ring his brother in Ireland in order to say a last farewell.
I also remember a woman who came into hospital emotionally distraught and in pain saying she’d had enough. Her family dynamics were fraught and everyone was distressed. I was able to say to her, have a sleep now and let’s talk about it when you wake up. She spent the following week with her daughters. At the end, tensions dissipated, and together the girls helped wash her after she had died.
Inadequate understanding of palliative medications can lead to even greater distress. I was called to an unconscious dying patient who had become agitated in response to morphine. Agitation is a side effect of too much morphine in some situations, but to try and make him more comfortable, his doctor had increased the dose and that had caused seizures. The patient’s wife was so upset to see him in this state that she couldn’t sit with him. But within less than an hour of halving the morphine and adding a mild sedative, he settled. She spent the rest of his time at his bedside.
In Australia, we have developed a specialist stream of very competent palliative care professionals, but that workforce can’t meet the needs of the entire population. A lot of work is being done to up-skill doctors and nurses, and increasingly they are delivering top-quality care. The reality is though, particularly with our ageing population, that the whole palliative care sector is desperately under-resourced.
To me, there is no confusion between the concepts of caring for someone and that of ending their life. Although I understand that some people want that sense of control at the end of their lives, for me the time to have this debate is when everyone has access to good quality palliative care.
You can read Palliative Care Australia's recently revised statement on euthanasia and assisted suicide HERE.
Dr Mary Brooksbank AM is chairman of Palliative Care SA (PCSA). She retired at the end of 2008 from her positions as Director of Palliative Care at the Royal Adelaide Hospital, Medical Director of Mary Potter Hospice, Director of Central Adelaide Palliative Care and her role as lecturer, University of Adelaide. She was a long standing ex-officio member of the Board of PCCSA and retains a deep commitment to palliative care.