Power and Allyship: more reflections on #PHPCI2019

November 4 2019

Aileen co-facilitated a workshop with her colleagues and co-authors Alan Bevan and Brett Sholz to consider the issue of power and Allyship – What does it mean to Ally? Actually Ally?

For me, PHPCI was a return to the Blue Mountains.  It was here on Gundungurra and Darug country I wrote much of my PhD. It was in this magical place I became an Australian citizen. This was significant – Not only was PHPCI a time to reacquaint with familiar places, friends and family- it was also a time to reflect further on the meaning of home, issues of identity, community, caring, inclusion, equity and colonisation. These themes of PHPCI were closely connected with the title of our workshop. What does it means to Ally.. Actually Ally?

I have been fortunate to be able to draw from Alan’s expertise and experience as a service user and co-author for several years now.  Brett’s research focuses on ways in which health and health services can be more equitable, challenging power norms, and lead by consumers. He is a leader in this area in the field of mental health. I have felt for some years that we, in palliative care have much to learn from mental health in consumer leadership.   At the School of Nursing, University of Auckland, we are fortunate to have a consumer leader on staff. Debra Lampshire is a valued member of our team!  We palliative care folks espouse a strong focus on patient and family/whanau needs and wishes, but where are the consumer voices and leadership in the organisation, research and education of palliative care?

Having met Brett at IIQM conference in beautiful British Columbia some years ago, we serendipitously reconnected more recently over our shared interests.

Alan kicked off our workshop by sharing his experience of caring for his wife Sue. Sue was diagnosed with Alzheimer’s disease at 49 and died just five years later in a nursing home. As Alan shared recently:

“I had assumed that in a first-world country like Australia, there would be palliative care services available,” Unfortunately Alan was unable to access the support and care he needed until the very end of Sue’s life. 

Despite Alan being an articulate educated male, he was unable to access the palliative care he and Sue so badly sought.

I confessed in our workshop that when, as an early career researcher, I first invited Alan to join me on a project as a ‘consumer’ I didn’t really know if what I was doing was ‘right’. I stumbled along in the dark.  As Kelli Stajduhar conveyed in her presentation however– “its not about what you do- but how your are”.

Our own Tess Moeke Maxwell was a participant in the non-verbal sculpt exercise I facilitated – [I think she only came along to the workshop because we had one of the best views of the mountains in the entire venue! Little did Tess realise what she was in for]!

As Tess described:

“How easily I slipped into being Joan… COPD, wanting to look out the window (over the Blue Mountains!), worrying about my husband Tom who seemed to lapse into a sense of helplessness… and all those dreadful doctors and nurses and health professional do-gooders who kept hassling me, doing stuff to my body. I just wanted to be with my husband and look at the view and be peaceful. I really felt like I was on a merry-go round with a bunch of health professionals, except it wasn’t a lot of fun. I liked the lady down the road who is part of the doula community support. She knelt down by my chair, and looked at me, and held my hand. I liked her. She became a friend to me and Tom.

Tess continued: “This was a powerful way of getting me out of my ‘researcher’ subjectivity and into Joan, ill and no sign of recovery. It was amazing to see things from a different perspective. I think this could be a great tool for workshopping with health professionals so they can see what it might be like to be sick and vulnerable. Joan stuck around me for several days afterwards”.

Finally, participants were invited to consider power issues in their own contexts – and how they might go about Allying.

For myself, I continue to reflect further on what this means in the context of compassionate communities and the public health palliative care as a movement.  We were fortunate to have Professor Denise Marshall present at our Palliative Care Nurses New Zealand conference the following week. Denise expressed a need for professional leadership in the beginnings of #comcom. I am not so sure, and that leaves me a little uncomfortable.  I’d loved to hear your thoughts.

You can read our paper Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis here.