What does good end of life care look like in hospital from the family perspective?

hallway-867226_1920We have done a lot of research over the years looking at the role of hospitals in palliative and end of life care. Our studies in both the UK and NZ have confirmed that hospitals do play an important role for people with palliative care needs and that the vast majority of end of life hospitalisations are not ‘avoidable’. Jackie’s work has extended this to confirm that patients do experience benefit from hospital admissions.

Unfortunately, we have also identified significant problems with the hospital as an environment for palliative and end of life care. In particular, we have found communication around prognosis and relationship-centred care often lacking. However, focusing on what is going wrong may not be the best catalyst for change. Rather, identifying what is going well within the current care environment can provide more motivating for staff and help identify good practice that can be shared.

We had an opportunity through our Te Pākeketanga study to look at how bereaved family and whānau described good end of life care in hospital. We worked with interview data from the 21 of 34 cases where family members were ‘extremely’ or ‘very’ satisfied with a public hospital admission their older relative experienced in their last 3 months of life.

This led us to identify that examples of good care aligned with Dewar and Nolan’s compassionate care framework. Tess and Stella also identified congruence with Maori values and we were fortunate that our Senior Kaumātua, Matua Rawiri Wharemate provided guidance around how the framework could be extended to more fully reflect these values. Our final model – the Kapakapa Manawa: bicultural relation-centred compassionate care model – provides concrete examples of actions staff can take to undertake care perceived by families to be compassionate and with which they are highly satisfied.

Screenshot 2019-04-28 at 11.55.51 AM
Kapakapa Manawa: bicultural relation-centred compassionate care model

‘Kapakapa’ is defined as ‘to get the heart to throb, pulsate, flutter’. The pulsating of the ‘Manawa’ (heart of a person) motivates a person to energise their heartfelt emotions to enact care practices to support the dying person and their family/whānau. We believe these understandings both complement and extend Dewar and Nolan’s theoretical model and, more broadly, Western understandings of ‘compassion’. In particular, conceptualising ‘compassion’ as a verb, rather than a noun, puts the emphasis on action, something that is needed if patient and family/whānau palliative care needs are to be routinely met within acute hospital settings. And excitingly some of our clinical colleagues agree and we are working on developing an implementation plan with one District Health Board at the moment – watch this space!

You can read the paper in Palliative Medicine here, or access the accepted manuscript version here: Submitted manuscript version hospital paper

As ever, we’d love to hear what you think.



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