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THE award-winning documentary LIFE before Death is a very moving film which reveals large gaps in access to palliative care services and adequate pain management across 11 countries, including our own.
It encourages us to think about why millions of people around the world aren’t able to live well at the end of life.
Access to palliative care is a huge problem in the Asia–Pacific region. It is limited by an insufficient workforce with insufficient knowledge and training, as well as insufficient resources to access drugs and equipment. This is compounded by a fear of drugs like morphine.
Morphine has for centuries been part of a black market trade in this region that has left it with a tainted reputation. As a consequence, governments have created bureaucratic processes that leave access wanting and suffering unresolved.
In Australia we could be seen as lucky in comparison to some other countries in the region — and indeed we are. However, there are still people in this country experiencing pain and suffering at the end of life.
It is easy to see the challenges of geography in this problem, and we are learning to overcome these in a variety of ways. Outreach programs are increasing and improving, but we need to export expertise, knowledge and training to regional and remote areas so that palliative care is entrenched as an available competency.
Linking this competency to expert advice is also important and the increasing availability and capacity of telehealth must be harnessed.
Geography, however, is not our only challenge. Language and culture loom large as barriers to all health services and this is magnified in palliative care.
In addition, it is only in recent years that we have begun to focus on palliative care for Australian children. Yes, children do die. Thankfully not so many these days, but surely minimising their suffering at the end of their lives should be the highest priority.
At the other end of the community, it is pleasing to see increasing efforts to provide good palliative care to our elderly people, but we are aware that the current systems are not adequately meeting the end-of-life care needs of older Australians.
But perhaps the largest barrier we have to overcome to improve access to palliative care is ourselves.
As doctors we are trained to treat and cure aggressively until the very end. In some cases, referral to palliative care is seen as abandoning the patient, or that you have failed.
In palliative care we focus first on how people feel. We seek to maximise the experience of life at the same time as minimising suffering in all its forms.
We also seek to facilitate good bereavement processes in the family and friends of the person we are caring for.
This is not rocket science, but it does require a different approach. The ability and indeed courage to recognise when cure is not possible and that death will occur — and to then communicate it to the patient and their family — is something that we must do better in order for Australians to gain access to the opportunities that come with palliative care.
When writer and poet Maya Angelou said “People will forget what you say, people will forget what you did, but people will never forget how you made them feel” she could well have been talking about palliative care.
What we say is important, but will likely be forgotten. The procedures we do, the treatments we prescribe are important, but will be forgotten.
We need to focus more on how people feel, as it will be remembered.
Better access to palliative care, and the ability to enhance life despite the inevitability of death, simply requires us to change the way we think.
Dr Scott Blackwell is the president of Palliative Care Australia and a GP practising in WA.
Posted 10 April 2012
Words are important. I agree with Beryl Shaw here. I recall in 1983 when I was recovering from an operation and someone said something to me that I preferred to not have heard, being physically weak I was not able to turn my attention off those words that echoed in my mind, something I wrote about and dwelt on long afterwards.
Compassion and understanding are vital in any relationship, let alone one that is based on trust, as between doctor and patient, and one that is clearly running out in terms of physical interaction time. At the Australian and New Zealand Society of Palliative Care meeting held in Adelaide in November 2010 one of the papers I presented was about the use of morphia, entitled “The Last Gasp” in which I used the analogy of life as a milkshake – strawberry, banana and chocolate, as preferred – with the last part of each sucked up with a straw, irrespective of the noise, because the shake has been savoured and enjoyed. The same is true of life. The last gasp represents the last taste, the memory and enjoyment at the end of a sweet and savoured journey through life, that needs to be understood as cherished as is life itself. To use morphia when no pain exists, to subdue the noise made at the end of life, curtails life for those wishing to experiencing the full joy and memory of it through the last gasp, and its use when there is no pain is because those who do resort to use morphia for their own feelings of disquiet which resonates in the noise of the last gasp, or from lack of understanding and enjoyment in life. Morphia in that situation = more fear. When there is pain or to temper the disquiet in terminal COPD where death is not impending judicious use of morphia is justified. I have also seen palliative nurses kill a patient and even doctors in palliative care deny relatives the last final moments of meaningful interaction with their loved ones, cutting their lives and this begging opportunity by precious hours, even days. Thus while I answered 1. in your poll, I really regard the answer to be a combination of A1 and A2, to read: Yes – but be more encouraging for our patients and the practice of compassionate care, which need not be regarded as palliative care, but rather as how medicine needs to be practised, including palliative care.
Dr Myers practices as a consultant physician & geriatrician in private practice in Melbourne.
In saying ‘people will forget what you say’ we are avoiding knowledge that shows how much patients are affected by the words we use. Every time individuals speak with me about the care, or lack of it, they or their loved ones experience during medical or palliative care, the first thing out of their mouth is ‘He/She said ——‘. The words you use and the way you use them are primary notes on how you truly feel about the person you are treating.
We all know that communication is reported to be the most poorly represented skill in medicine across the world. And it’s so easy to improve this for both patient and health/aged care professional.
The last words a dying patient or their loved ones hear make the leaving better or worse. So let’s not ignore their great power for positive change.