I was fortunate enough to spend time with Professor Allan Kellehear in Singapore recently. We had a series of events as part of The Singapore Hospice Council’s launch of Compassionate Communities SG which were both inspiring and informing.
I am grateful for the time of everyone involved in this fantastic knowledge exchange, particularly Bee-Hia Sim, Executive Director and Vanessa Ho, Transformation Lead at the Council.
I have heard Allan talk and present previously, but in Singapore we were having discussions with people involved in Compassionate Communities SG and tackling the many definitions, theory, and ambition of public health palliative care which created a great opportunity for learning.
Some of Allan’s ways of describing the field of public health palliative care and its history I had not heard before and these discussions were incredibly valuable for all who listened to them including me.
A key insight into the foundation of Public Health Palliative care relates to other fields of healthcare. Every field of medicine has three areas i) public health ii) primary / community health and iii) secondary / hospital / inpatient care. Every field, expect palliative care, before the public health palliative care movement began.
Perhaps this is because public health is often seen as preventing disease, prolonging life and health promotion and this is not considered relevant to someone with a terminal illness. However, that argument does not work, as palliative care has three audiences i) those who have a terminal diagnosis iii) those who are bereaved and iii) caregivers.
Public health, and particularly its discipline of health promotion requires positive messaging and this can be difficult in the context of death. Applying public health to palliative care requires creativity, broader thinking and deeper knowledge of dying and grieving.
Public Health includes key disciplines that are essential to population health: –
· Biostatistics
· Environmental health sciences
· Epidemiology
· Health policy and management
· Social and behavioural sciences
These are all relevant to palliative care and of course several are linked. In public health palliative care, we are particularly interested in the last two which includes health promotion.
Health promotion is about prevention, harm reduction, sustainability, and early intervention.
Health promotion practice includes:
· Social marketing
· Community development
· Participatory relations
· Policy development
· Service redesign
· Public education
· Social ecology
All of these are relevant to public health palliative care. The one most commonly practiced is community development via ‘compassionate communities’ and then perhaps public education is the next most observed in practice.
Allan, in his lectures and talks often reminds us that health promotion is all around us e.g. bicycle helmets, seatbelts, condoms, food, drink, cigarette packaging warnings.
I have heard this before, however, having more time for discussion with our colleagues in Singapore, Allan used the analogy of health and safety. We take it for granted that our buildings are safe, that effective design, policy, and training is in place due to health and safety legislation. The same for cars, aeroplanes, bridges etc. Health and safety is public health and elements are health promotion e.g. health and safety training and public signage.
At a meeting room venue, Allan pointed out health promotion examples of signage and said once you start seeing them you can’t stop. He was right, traveling around Singapore I saw plenty of examples of health promotion, particularly using the advertising space on trains and adverts outside of public housing.
The new essentials of palliative care ‘cog model’ by Dr Julian Abel shows how specialist care, primary care, communities (as in residents) and civic society all need to work together to achieve the aspiration of improved experiences around serious illness, death, dying, loss and care giving.
As someone who has worked in healthcare a long time, when I first heard about the new essentials about seven years ago, I very easily understood specialist and primary care. Also, thanks to a module on my masters degree, some joint working with a community development trust around end of life care, and engagement in Cormac Russells’ work, I understood the essence of the community element. Having experience in health service redesign, I could see how these worked together and how services might change.
I confess to ignoring the fourth ‘civic society’ element of the model for a little while. I didn’t quite see how I could influence that until I became involved in Compassionate Birmingham.
The compassionate city charter helped bring the civic element to life and working with colleagues in Birmingham we got to explore what this might mean in practice.
The aspiration of a Compassionate City is the health and safety example. We want all our civic spaces – employers, schools, parks, museums, neighbourhoods, care homes, hospitals everywhere to be equipped with design, policy and training to better support people impacted by serious illness, death, dying, loss and caregiving.
Having heard this analogy first hand, I better understand the aspiration and why the compassionate city programme is designed like it is.
Public health programmes are not only better for people, they also reduce demand on services. Just like seatbelts, bicycle helmets, condoms and drug and alcohol warnings reduce demand on services.
In the context of palliative care, public health programmes can support early identification, better planning, crisis reduction, more open conversations, support for anticipatory grief, reduction of caregiver burnout etc.
In addition, public health palliative care can tackle social morbidities. Social morbidities are the things that happen as a result of poorly supported palliative care (the person who is ill, the people who are bereaved and the care givers) and include time off work, time off school, depression, suicide, loneliness, isolation, youth offending, increased use of drugs and/or alcohol.
These are critical, societal issues that cannot be ignored due to the professionalisation of dying that focuses more time and attention on the other two domains of health (primary/community and secondary care) rather than at least equally paying attention to the third domain – public health.
We should, like in other fields of public health, be able to take it for granted that when we are at work, school, university, out in our neighbourhoods and towns that society has been designed, has effective policies, training and public education to support people who are seriously ill or impacted by death, dying, loss or caregiving. To achieve this, we need the disciplines that make up public health palliative care.
We know, for many, this is not how they experience society. We know that people feel isolated in their bereavement because people do not know what to say. We know that parents with a child with a life limiting condition who might not behave in the same way as other children, feel judged when out in society and therefore also become more isolated. We know that some people do not feel supported at work due to rigid or inequitably implemented HR policies. We know that some children are bullied in school after a parent has died.
My Dad died when I was 23 and was working, he died at nearly midnight on a Saturday night, I lived on my own and obviously spent time with my Mum and family on the Sunday and the Monday as it was a public holiday. On the Tuesday, I went back to work, a colleague said that I can’t have loved my Dad very much because I was back at work so soon. My Mum had no choice but to go back to work. I could not just sit on my own in my flat – I needed to be around people.
My example is not particularly bad, I have heard far worse from other people over the years, and it should not be like that.
I have also had incredibly supportive bosses and colleagues, who I will always be grateful to.
The World Health Organisation has said that healthy ageing is a global public health priority and in Singapore we visited an active ageing centre and a mosque that are both doing a wonderful job at health promotion in the context of ageing and are reflecting on how they build on their work in relation to death, dying, caregiving and loss. Birmingham’s emerging ageing well strategy has public health at its heart and also includes compassionate cities, community development and work around dying.
It is ironic that the the world health organisation does not seem to recognise public health palliative care also as a global health emergency particularly given the super aged society we are facing. The WHO does recognise public health palliative care as a policy direction as does the UK via Ambition Six of the national framework ‘ambitions for palliative and end of life care’. Ambition Six, ‘every community is prepared to help’ needs to be considered in the context of public health and more broadly than it is often applied.
There is huge progress across the world since Professor Allan Kellehear created the argument and guide for public health palliative care. And we should recognise all those people who have been involved in the movement since it’s inception.
As Allan says however, we are about to live in a super aged society, no one has done that. No healthcare system in the world and no community has experienced the number of older people with multiple conditions living and dying that we are going to be experiencing. No younger generation anywhere in the world has lived amongst the super aged and experienced all that might mean for them.
I am coming away from my trip to Singapore with some great examples in practice and have met some wonderful people committed to improving palliative care. I am also coming away with deeper understanding of the field of public health palliative care which will be invaluable as I continue in this work.
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