IAHPC BOARD MEMBERS’ REPORTS

Palliative Care in Australia

Dr Yvonne Luxford

Having ranked second in the Economist’s Quality of Death index in 2010, you are forgiven for concluding that Australia is quite comfortably meeting the needs of its population as they die. Yet access to palliative care in Australia is nothing short of a lottery, predominantly determined by your location, but also affected by your diagnosis, the education of your health professional, your cultural background, and your age.

One area that we often find difficult is to gain the attention of governments, and to help them understand the importance of focusing on palliative care when they have so many competing priorities. The Senate of the Australian Government is currently conducting an Inquiry into palliative care in Australia. This provides an opportunity to look at the big picture and assess its strengths and weaknesses, identify gaps and provide a few solutions in the form of recommendations to the many issues that impact this relatively new, emerging, and vital health discipline. The Senate’s terms of reference are broad, covering fields that include access, funding, workforce, research and advance care planning.

Despite the government’s commitment and the dedication of our health professionals, carers and volunteers, many Australians continue to miss out on receiving appropriate end of life care. Like most issues in health the reasons are complex. There is not enough funding dedicated to palliative care, there is insufficient training of health professionals in this field, culturally appropriate resources and services are lacking, there is an unwillingness in society to accept and openly discuss dying, and our population is rapidly ageing.

Australia is vast, and our population and health services cluster around the coastal fringe. Innovative techniques such as video based multidisciplinary case conferencing help to reduce the extremes of distance, but this is not common. Less remote locations have few health professionals, often meaning disruption to home and family life as people are transferred to the cities for treatment and care.

Around a quarter of Australia’s population was born overseas, bringing a rich cultural diversity which also means a variety of needs and attitudes in relation to death and dying. Australia’s Aboriginal and Torres Strait Islander peoples have specific beliefs and requirements that, along with different languages, can be unique to various locations. We need to do more to develop the health workforce across all cultural groups, and to ensure that the broad variety of beliefs are accommodated and respected.

Palliative Care Australia believes that palliative care must be of the highest quality, timely, resourced to enable choice, based in accordance with an individual’s level of need, and evidence based in accordance with current research. Palliative care must be available regardless of location, age, income, diagnosis or prognosis, social and cultural background, in order to support Australians to live well at the end of life.

Our world status is a testament to Australia’s commitment to ensuring that every Australian who needs it has access to high quality palliative care. This Senate Inquiry further attests to that commitment. But, we remain a very long way from achieving our goals, and Australians will continue to die inadequately supported, and in pain, until we address some core issues.

Dr Yvonne Luxford is a board member of the IAHPC since 2011 and the Chief Executive Director of Palliative Care Australia. Her biography may be found at: http://www.hospicecare.com/Bio/luxford.htm

I Had A Dream!

by Dr Derek Doyle, Scotland

Like the great Martin Luther King ‘I had a dream!’  In my case it was shared by hundreds of fellow countrymen in the UK and countless thousands worldwide. It was an exciting dream that I prayed would become a reality – dignity and compassionate care would be recognised as basic human rights, and the principles of palliative care would be adopted as integral components of all care worldwide.

I thought my dream was coming true. First there were palliative care units, then community services, then hospital teams. Degree courses in palliative care nursing became available country-wide. Every medical school introduced palliative medicine into the curriculum (though, it must be admitted, in much more depth in some than others) and every family doctor (GP) had to demonstrate knowledge of it. There are now more palliative medicine specialists in the UK than there are neurologists and oncologists combined. There is no denying that palliative care nursing and palliative medicine are respected and now attractive to increasing numbers of young nurses and doctors.

The dream was damaged by a recent headline in a reliable national newspaper which read
“ Patients in hospital dying without dignity”- an observation emanating from no less than The Office for National Statistics. It reported that 50% of families said that hospital nurses consistently failed to treat the relatives of the dying with respect. Almost a third said the quality of care in hospital was only fair or poor while one in ten said their loved ones were not given adequate pain relief. Care in hospitals was rated as significantly worse than that received by the terminally ill who opted to be treated at home or in a hospice. This survey of 22,000 bereaved families, commissioned by the Department of Health, found that although seven in ten people wanted to die at home, more than half died in hospital – proportions found in previous UK studies. The National Council for Palliative Care and the Dying Matters Coalition reminded us of other studies where bereaved people reported that just 57% of hospital doctors and 48% of hospital nurses showed dignity and respect.  Thankfully other commentators have stressed how excellent most GPs and community nurses are.

 Why is this happening in my country regarded by many as a world leader in palliative care provision, professional education, the establishment of palliation specialties, clinical palliative care research? Not knowing the answers I spoke to some hospital doctors and nurses. (unscientific, I know) Their responses disturbed me but may suggest more questions and some lines of research!

“As an oncologist I don’t need to know much about palliative medicine  - after all we have the hospital palliative care team next door – it’s their job.”
“All of us nurses would give excellent palliative care if we had the ratio of nurses to patients they have in hospices.”
 “ I was taught palliative care only weeks before I qualified as a doctor, and even then not in any depth or detail, in fact 30 minutes.”
 “ As a junior doctor, no matter how much I want to do better, I simply don’t have time to sit for hours holding a patient’s hand, and that’s what palliative care is, after all.”
 “Face it – some of us are at ease with the dying and some not. Why is it assumed we are all happy doing it? Why should we be so criticized?”
 “Yes, we visited a hospice but it was such a short visit I learnt nothing. I felt the staff there were all ‘holier than thou !”
 “The only thing I was taught was ‘breaking bad news’”
 “ Why criticize hospital care when more should be done to care for the dying at home?”
“ Blame the politicians and the bankers – sufficient staff to provide good palliative care costs money.”

Was I right to dream that dream? Am I right to be upset? Is it time for more multi-centre research looking at the views and experience of medical and nurse colleagues of the basic training they had in palliative care? Are we teaching what they need to know or are we making palliative care seem daunting and beyond the ability of many doctors and nurses? Do we ourselves know what relatives and patients mean by ‘dignity’ To me, the dreamer, palliative care is so much more than easing pain, nausea, fear. It embraces what the Christian Bible describes as the Peace of God which passes all our understanding. Teachable? Are those doctors and nurses I questioned exceptions or are we failing?