Recently I was invited to give a keynote at the Ministry of Health Long Term Conditions Conference at the beautiful Te Papa in Wellington. Great to get the invite and validation palliative care is seen as part of the long term care conditions trajectory – slightly inevitable to be speaking right at the end of the day. Putting death last makes sense chronologically, but also means a long day (particularly if you get up before 5am) and a diminished audience.
I took the opportunity to reflect on some of the key equity challenges facing palliative care in Aotearoa. Not all of them as that could have been overwhelming as I think I could literally keep going to weeks. But enough hopefully to get people thinking and, in particular, to challenge some of the assumptions that they hold. And that they bring to their roles as clinicians, policy makers and service designers.
I talked about evidence of inequities in access to hospice and specialist palliative care. The particular groups who are at risk of not accessing this level of care, despite very limited evidence of having ‘less complex’ palliative care needs. Most evidence drawn from overseas as we are still working on building up this picture nationally, but it was great to be able to present Michal’s work on quality of dying in Aged Care (spoiler alert – we’re doing pretty well when put in an international line up). I also talked about Helen Butler’s Master’s work which showed that people with severe and persistent long term-mental illness are 3.5 times less likely to receive specialist palliative care than the general population. Can’t wait to see what she uncovers in her PhD which will explore this critical issue in more detail.
I was then able to share some of our early analyses form the VOICEs survey – we have 794 completed questionnaires (which include literally hundreds of pages of qualitative data from open text items). The interesting finding is that overall satisfaction across settings is high – hospice fares better – hospital and Aged Care a bit worse as would be expected. And we heard stories of excellent care – and unfortunately poor care – across all settings. Our challenge is to now unpick that.
And finally I talked about what evidence we have that people are supported to achieve their aspirations for end of life care. I presented evidence from our collaboration with the LiLACsNZ Study of Longitudinal Ageing showing that the top end of life priority for both Māori, and non-Māori older people, is to not be a burden to family. And then presented evidence that it would be easy for them to feel they are a burden at the moment given the impediments health services put up to the family and whānau who are trying to navigate them.
You cannot talk about equity within our context without foregrounding the experiences of Māori. And I was very fortunate that Tess agreed to be videoed talking about equity concerns for whānau – and that Lisa agreed to do the videoing. Tess spoke eloquently for over 45 minutes…. while I mainly nodded! Here’s a short extract below, but we will post some more extracts over the next few weeks as I think we all have a lot to learn from Tess’s korero.