Presenting the “Brilliance” project at the 2017 Australian Palliative Care Conference with Cathie Jeffs and Professor Gregory Crawford (along with matching coloured balloons!)
Funded by a PJ Smith Faculty Scholarship, and in search of some respite from Auckland rain, I returned to South Australia this week to visit the sites of two ongoing research projects and to attend the 2017 Australian Palliative Care conference. First I had the joy of spending the first few days with Dr Annmarie Hosie from (IMPACCT) at UTS in Sydney. I’m working with her, and ward nurse researcher Tamsin Symonds, on a video reflexive ethnography study to explore safety and quality for people with dementia and delirium in hospital. As Merryn highlighted in her last blog, the importance of hospitals in the care of people with life-limiting illness is paramount. This is particularly true for older people with cognitive impairment, who make up over a third of people over 65 admitted to hospital. As findings of a recent study led by Professor Reynish from Stirling University showed: “People who are admitted to hospital with confusion seem to do badly”. Indeed, their study showed that they are at increased risk of dying, increased risk of re-admission, and experience a hospital stay nearly two weeks longer than those without confusion. Not everyone with cognitive impairment is able to be cared for in wards like Tamsin’s, where there are skilled nurses passionate about care of people with cognitive impairment. Therefore, there is an urgent need to conduct studies like ours, which aim to improve the care of older people in hospital.
However, the rhetoric of hospital avoidance and home death were constant themes of the conference. Despite, Sarah Hoare’s excellent systematic review, my own work on the meaning of home, and Jackie Robinson’s important findings on the role of hospitals at end of life, the oversimplified figure that ‘70% of people want to die at home’ continues to be espoused. My own view is that we really need to get past this. The focus instead must turn to how we can best support wellbeing, safety and quality in all care settings.
This view has resonance with Alex Jadad’s utopian idea that we should aim for a world that doesn’t need to provide palliative care, that we would simply ‘provide care’. He discussed this, and much more, in his plenary titled “A good death for all – what would it take?” “We all know what a bad death is”, claimed Prof Jadad. But what do we know what we mean by a ‘good death?’ (The very question Jackie Robinson and I challenged post-graduate students on in class last week!) Prof Jadad also questioned why the words death and dying are not front and centre in many of our palliative care documents and statements. This made me wonder again about the mixed messages we, as a palliative care sector, appear to give. On the one hand we try to ‘sell’ the message that palliative care is not just about death and dying and should be integrated at diagnosis of life-limiting illness. However, on the other, we seem fixated on trying to get the whole of society to speak about death and dying at all costs. It seems to me that we really need to understand more about people’s experiences of some of these ‘death talk’ initiatives, as well as their outcomes.
Alex Jadad also challenged us on our role in much bigger global issues. For example, as people with palliative care expertise, what role should we play in the staggering number of deaths result from hunger, environmental injustice, and female infanticide? “It’s a girl” – the three deadliest words in the world” he exclaimed. “Sexism is behind 200 million missing women”. Food for thought indeed.
Closer to home, death and dying is indeed very much a gendered issue. Most family carers, for example, are women. And the work they undertake is getting not only more technically demanding, but also more extensive, and expensive. This needs to be factored in to initiatives such as the ‘hospice at home’ service for people with dementia presented at the conference. The study conclusions were that this model was not only successful (good news), but ‘much cheaper’ than care in an institution. However, I was compelled to ask the question: “Did you include the costs to family caregivers in the economic analysis?”
Maybe it is because we are so far from the utopia of integrated palliative care for all that voluntary assisted dying is very much on the political agenda in Australia and NZ. I remember the day when an audience member would be quickly shut down at a palliative care conference if they mentioned the dreaded ‘E’ word. However, at this conference, a stellar panel grappled with what the effects of the introduction of euthanasia might be on palliative care provision. What would the role of palliative care clinicians be? How would we support staff? Roger Hunt, one of the panel members argued that it would create opportunities for palliative care…perhaps even more funding. However, Palliative Care Australia CEO Liz Callaghan was doubtful…..”there’s no sign of this yet”.
Perhaps Alex Jadad’s Utopia would be possible if the world was full of people like Maggie Beer, who delivered one of my favourite plenaries of the conference. Maggie, a South Australian institution, is passionate about providing older people with high quality food. Her positivity is infectious. She argues:“I’ve seen and heard so much about the negative side of aged care, so I’m putting it out there: I want to hear good ideas and experiences that can be shared”. This thinking is closely aligned with work I have been collaborating with Dr Ann Dadich from Western Sydney University and clinicians at Northern Adelaide Palliative Care Service on, in the area of Positive Organisational Scholarship (although I don’t think Maggie would think of it as ‘POS’!).
This mention of the significant role aged care play in palliative care made me wonder too, if the panel session title on the final day needed to be ‘flipped’ from: ‘Palliative care is core business for aged care’ to ‘Aged care is core business for palliative care‘ Surely we have as much to learn from each other?! Indeed, this ethos is the basis of the SHARE initiative we have developed in Auckland to promote reciprocal learning between hospices and aged care facilities: early results are very promising.
Of course, as is often the way, I had to go all the way to Adelaide to connect with NZ colleagues. We had the opportunity to hear (and learn) from Leise Groots Alberts, as well as Mary Shumacher from Hospice NZ. If you weren’t able to attend and want to know more, you can catch up on some of the live sessions from the conference here. The next conference will be in Perth, September 2019. I would recommend putting it in your diaries now!