Why are you going to Tassie? It’s been a frequent question on this trip and I’ll be honest I did start asking myself the same question when I realised the distance I was travelling for 2.5 days.
When it came to planning my WCMT Fellowship I knew I wanted to visit the countries I’m visiting (Australia, New Zealand and Canada) because they’re all countries with a history of deinstitutionalisation in learning disability provision, where access to appropriate healthcare has been an issue for learning disabled people, where there is data collected on premature mortality, where they’re English speaking (I really need to learn a new language but that wasn’t going to happen for this trip) and they’re also countries with strong histories of human rights, activism and advocacy. When it came to the detail of where or who to visit within the countries it became a little more organic and scattergun, I knew some researchers and desk based research revealed organisations, advocates and interesting approaches. Many of these people recommended other people. I also initially hoped to attend the ASID Conference that was taking place in Hobart in November. Dr Valerie Murphy’s GMC hearing put paid to that, so instead I scoured the conference programme to see who was presenting about things of most interest. That is when I first came across Anna Holliday. Anna was presenting on disability, end of life and bereavement and the work she’d been leading at Li-Ve Tasmania. Anna was the principal reason I was visiting Tasmania and Hobart in particular, and even though the End of Life Community of Practice meeting that I hoped to attend was cancelled, it was still totally worth the trip.
Anna picked me up from my boutique bunkhouse (I’m not sure what the boutique bit was but its in a stunning neighbourhood, Battery Point) and we headed up Mount Wellington to take in the amazing view, and to start talking. Anna works for a large disability services provider, Li-Ve Tasmania formed by the merger of two organisations, one of which was originally established by parents and families in the 1950s. Anna leads their work on end of life care for disabled people, and it is seriously ambitious and impressive in equal measure. This is a snapshot from Li-Ve Tasmania’s 2016-17 annual report (you can read the full report here):
Anna outlined the work that she’s been leading on and the headline messages so far, which in a nutshell is that learning disabled people understand more, notice more and want to talk more about death and dying than anyone currently acknowledges. We discussed how so often what people are (or are not) told, what they are (or are not) valued for, and what they are (or are not) involved in is down to staff, service or societal fear around death and dying. This took me back to conversations I had right at the start of my trip with Rebecca Scott-Bray from University of Sydney, and indeed with several other people since. Until we are ALL a lot more comfortable discussing, death and dying, bereavement and grief, we will not manage to address matters of end of life care, we’re unlikely to do it well for any of us, but we’re particularly unlikely to do it well for those of us with a learning disability. Anna and I chatted solidly for about four hours, we talked about our personal experiences, those of learning disabled people that we knew, how often people will seek out those members of society who are comfortable discussing these matters, and engineer opportunities for conversation. We discussed the research and practice plans that Anna and Li-Ve Tasmania have and their partnerships with Palliative Care Australia, TasCare and academics such as those at the Palliative Care Unit at La Trobe University and more locally at the University of Tasmania.
We also discussed how everyday, in many ways, providing end of life care is, or should be. As Anna so eloquently put it:
Care staff who know the individual and have done for some while have the best seat in the house to provide end of life care – they need to recognise what assets they have.
My strong hunch is that we have over medicalised death to such an extent that people now routinely expect someone to die in hospital. Of course in some instances this is necessary or preferred, but in many other it should be possible to provide end of life care to someone in their own home, and avoid the trauma and confusion of a new or different environment and unknown caregivers. Anna was also keen for families to understand what is possible, and what a good death might look like. If people don’t know what they can wish for, or what is reasonable or possible, then we set our benchmarks and expectations far too low. This is also a common problem when it comes to investigations after death, if people do not know what to expect how can they possibly know if the appropriate things are happening?
We also discussed the service providers that are fearful of people who use their services dying, who don’t recognise or acknowledge that if they’re to provide life long care to people they will need to consider end of life too. Indeed Anna shared one anecdote of a CEO of a disability provider who told an assembled room of people that they didn’t want death on their watch because it wasn’t good for business. As Anna so rightly pointed out if providers are not prepared to support people to the end of their lives, then they should say so on their NDIS brochure – they need to be explicit that once someone get’s sick or is approaching the end of their life, that they’ll be shipped off to another facility. If providers aren’t going to actively address end of life then they need to be upfront about it…. and see how good that is for business.
I loved spending time with Anna. We had a leisurely lunch at another beautiful Australian beach side restaurant (I have been so spoiled) and continued to talk about all things death and dying. She outlined what next for their programme, for the supports they are developing for disabled people, for families and siblings, and for staff. We also discussed when the duty of care ends, for a disabled person, for their friends and housemates, for their family and carers. A duty of care does not end when someone’s pulse stops, and we’d all do well to acknowledge that and consider it further.
My final reflection is that one of the key factors that came up several times during our conversations was the power of a supportive CEO. Anna is clearly given scope to innovate as she sees fit and has the support of a CEO who is prepared and willing to engage with these issues and not shy away from them. It’s clearly a brilliant combination and one not to be overlooked.
After my day with Anna I hopped on a catamaran up to the Museum of Old and New Art (MONA) and spent an hour or two wandering around there. My brain was on overdrive as I immersed myself in the Museum of Everything exhibits. It left me feeling more confident about the need for something more than a report when my WCMT Fellowship is over, watch this space.