The grandeur of the Royal College of Physicians of Edinburgh’s interior faded in the background as friendly smiles, warm handshakes and engaging conversations over teas and coffees filled the room giving a great ambience for the start of the Scottish Partnership for Palliative Care Annual Conference 2015. The astonishing range of professions represented displayed the crossover between diverse skills and knowledge pools which are much needed for the multidisciplinary approach, a long-standing principle in palliative care.
The conference, held on Wednesday 23 September, had the theme, ‘From Worms, Butterflies and Veils to Outcomes’.
What did the day hold for the participants? Here are just a few highlights:
In the opening session Dr. Fliss Murtagh from King’s College London insightfully handled an often challenging topic in palliative care circles, outcome measurement. While the complex question of whether all aspects of palliative care are measurable continues to fuel much debate, Dr. Murtagh’s call was that palliative care should come up with tools for outcome measurements before factors from outside palliative care boundaries will start imposing tools on palliative and end of life care services that may have little applicability or relevance for the care we provide.
The film based on the ‘Butterfly Project’, a five year project in partnership between Prince and Princess of Wales Hospice, St. Vincent’s Hospice and Ardgowan Hospice, I’m sure raised a number of questions in many of us: are we doing enough for children to understand and support their experiences of loss and grief? The film clearly demonstrated the importance and value of doing so.
Professor Miriam Johnson from Hull York Medical School spoke on breathlessness as an often undiagnosed, but acutely distressing symptom for patients with a wide range of clinical conditions. It’s not just the difficulty in breathing that matters, it’s the psychological, social and emotional trauma breathlessness brings to the person, which she called ‘total breathlessness’, that deserves attention. Yet another forceful reminder that breathlessness, or any other physical symptom a patient may be going through, cannot be seen in isolation. Just as Cicely Saunders used physical pain as a window to recognise and deal with ‘total pain’.
The goal of palliative care remains the alleviation of suffering for the person concerned in all its totality, as much as possible. The non-physical aspects of breathing and breathlessness are gaining significance. A recently launched project, ‘Life of Breath’, is a senior investigator award, funded by the Wellcome Trust awarded to Prof. Jane Macnaughton at Durham University and Prof. Havi Carel at the University of Bristol. The project examines historical, philosophical, cultural and anthropological aspects of breathing and breathlessness.
Coming from theology and philosophy background, I found Professor Sheldon Solomon’s (professor of social psychology at Skidmore College, New York) lecture fascinating. He explained the Danish philosopher Søren Kierkegaard’s idea of ‘self-aware human beings’ and demonstrated how the terror of the awareness of their death shapes our behaviour and patterns of relationships.
There’s much to consider about the question he raised at the end: what will happen if the values of palliative care in medicine (where there is a heightened awareness of mortality) is applied to life in general?
Should hospitals be always seen as horrible places to die? Of course most of the general population wants to die at home, but then when the complications of illness and frailties of advanced age begin to detect much of what one can and cannot do, do people not change their minds about their preferred place of care?
Dr. Deans Buchanan, palliative care consultant from Ninewells Hospital, Dundee, argued that it is time to recognise that majority will die in an hospital and there is little scope for this trend to make any dramatic change in the near future. His question is compelling: if ‘hospice friendly hospitals’ and ‘hospice at home’ are welcome ideas, isn’t ‘home at hospital’ a reasonable and practical idea?
At the closing session, Shona Robison MSP, Cabinet Secretary for Health, Wellbeing and Sport, highlighted the integration of health and social care as a great opportunity for placing palliative care as a higher priority for all who will need it, with equal access and high quality. She also indicated her hope that the Strategic Framework for Action to be published later this year by the Scottish Government will contribute to making significant changes in the right direction.
The questions raised to the Cabinet Secretary highlighted important concerns: whether the current differences in integration of health and social care in children’s services have negative implications for palliative care for children and whether the future of palliative care in Scotland make it easier for those who transit from children’s care to adult care settings. The concerns expressed clearly recognised the value of families and loved ones getting quality time with the patient rather than having to endlessly run around to organise the care for them.
Appropriate treatment for disease and symptom management, access to palliative care for all and quality assessment and monitoring are continuing to function as baseline factors. But the notion that death and caring for the dying needs to become everybody’s business and the importance of families, communities and relationships is gaining prominence.
The palliative care community in Scotland is eagerly awaiting the publication of the Strategic Framework for Action for Palliative and End of Life Care later this year. There is much hope that this will provide a comprehensive vision for the future of palliative and end of life care in Scotland.
Rev Dr Hamilton Inbadas