Today I spoke at the Palliative Care Nurses New Zealand conference on a very sunny day in Wellington. It was great to have the opportunity to talk about an issue which is not only close to my own heart, but also had a lot of resonance with the audience, namely the support needs of family and whānau carers.¹
In a nutshell I argued that family and whānau represent our most significant resource within palliative care. They represent the foundation of the palliative care workforce, as recognised in the New Zealand 2017 Palliative Care Action Plan which identified ‘growing the capability of family carers and communities’ as one of its’ five strategic priorities.
However, they are not well supported in their caregiver role, with significant negative implications. Firstly, for the well-being of the hundreds of thousands of New Zealanders who are currently providing care and support for somebody with a life limiting illness, secondly for the well-being of those individuals facing the end of their lives, and finally for the well-being of our health system as a whole.
Indeed, both the international evidence, and our research in NZ, supports the conclusion that family carers are ‘shadows in the system’. They are not asked to share the unique expertise and information they hold. Or worse, this expertise and information is completely ignored. Worryingly, they are often left with unanswered questions and unresolved concerns.
You are likely to have heard of Chris Pointon, husband of the inspirational Dr Kate Granger, who died just over a year ago. Her ‘hello my name is’ campaign was brought by Chris to NZ as part of his world tour. We were aware many people would not have the opportunity to hear him speak so he very kindly agreed to take part in a videoed interview. As you can imagine, this was very thought provoking; we promise to share it with you in due course. However, in the meantime, here’s just a small snippet in which he reflects on how relatives can be overlooked by health professionals:
A lot of our research recently has been aiming to exploring the sorts of challenges Chris describes, as well as bringing the work of family and whānau carers ‘out of the shadows’. One way in which we have done this is our Māori whānau digital story project led by Lisa Williams and Tess Moeke-Maxwell. For example, in the following story, Manaaki Poto describes the complex and extensive work of her whānau during her sister’s last months. She rather beautifully refers to the process of carrying out this work as a ‘beehive of love’.
The bee metaphor Manaaki draws upon is very appropriate when we consider the sheer quantity of work that family and whānau do. Gunn Grande, Christine Rowlands, and other UK colleagues drew attention to this recently, identifying that family members spend on average 69 hours work a week caring in the last three months of somebody’s life. When you consider that the average working week is meant to be 40 hours, and that many carers are doing a paid job alongside their caring role, this is truly remarkable.
We know that caring work brings with it benefits, but it also brings costs. And these costs are highly interconnected with the wellbeing of the person being cared for. Recent studies, for example, have shown significant positive associations between the mental health of people with advanced COPD and their family carers. Michal Boyd’s recent work found similar associations between the quality of life of people with dementia and their family carers here in New Zealand.
An issue rarely discussed is that these costs are also gendered. Our recent review, for example, concluded that women are not only more likely to care, but we are also more likely to suffer as a consequence. Indeed, the scant research that has adopted a gendered analysis has concluded that women experience higher levels of mental and physical strain related to caregiving, a finding attributed to societal expectations that women will care.
Further costs of caring our work has drawn attention to are financial ones. This is another issue largely overlooked within palliative care research and policy. Our work identified that family and whanau incur a wide range of direct and indirect costs. And that these have very significant implications – missing meals, selling houses, even bankruptcy. I presented several stories which exemplified the impact of these costs on family and whānau, including this story, which has stayed with me.
Our Te Pakeketanga study clearly demonstrated that these financial, psychological, and physical costs of caring are rarely recognised by health professionals. Moreover, we identified many examples where the unique information and expertise they possess was similarly ignored. The result was significant stress for the caregiver and unnecessary suffering for the person at end of life. The following example, from our film Farewell, Haere Atu Ra which presents narratives from the study, exemplified this well. In this situation, the family’s knowledge of their mother/grandmother’s end of life wishes was ignored, resulting in an unwanted and futile resuscitation attempt:
I also presented another vignette from the film which drew attention to the fact that not all solutions to the challenge of better supporting family and whānau carers reside in health services. Indeed, given the rapid rise in palliative care need predicted both nationally and globally, they cannot. Rather, and as I reflected on in a recent blog about public health palliative care, community approaches also warrant serious consideration. For example, in this narrative, it is clear that community-based initiatives, such as the compassionate neighbours project in London, may have helped provide the respite and support this carer so desperately needed:
This led me to conclude that improving support for family and whānau carers will require a multi-pronged approach. I identified three avenues for so doing within the NZ context. Firstly, I think we need to think at policy level solutions related to caregiver allowance and leave. The Canadian example is interesting to consider within this context. Secondly, there is definitely room to improve how carers are supported within health services, for example through initiative such as the Carer Need’s Assessment which is now being piloted internationally. And finally, in line with public health palliative care approaches, there’s a real need for communities to define, develop, and lead their own strategies. Together with Ros Capper, I will present thoughts about how this could be best addressed within the context of her local community at our one day conference on the 3rd November.² Although, as noted in my previous blog, what we mean by ‘communities’, as well as several other ‘crunchy questions’ also require really serious critical reflection.
Moving care closer to home is a New Zealand health priority, including at end of life. We must, however, remember that this cannot be achieved without acknowledging that families are again being asked to take on not just more, but increasingly complex, caregiving tasks – tasks that have traditionally been undertaken by paid health and social service providers. There needs to be an awareness that this cannot be done without additional support. Nurses are very well placed to take forward this message and I am hopeful that many of those who were present today will do so. I’ll come back to where I started: family caregiving is an issue which affects us all – many of us professionally, but all of us personally.
¹ ‘Family carer’ is obviously a complex concept; many people labelled by health professionals and researchers in this way do not identify as ‘carers’. I have used it as shorthand within this blog, but rest assured, I do not do so uncritically.
² We still have some spaces left for our conference in Auckland on the 3rd November: please contact Kristy for more details and to register: firstname.lastname@example.org