“We weren’t actually told she was dying”

A new Te Ārai paper identified the profound impact that uncertainty has upon the experiences of people whose family/whānau member dies of heart disease. 105 bereaved family/whānau respondents to the VOICEs survey we conducted in partnership with the Auckland District Health Board indicated their relative had died of cardiac disease. Analysis of these questionnaires, which included a lot of free text data, identified that uncertainty led to distrust in healthcare professionals, stories left incomplete, loss, regret and missed opportunity and disempowerment.

Led by Dr Jackie Robinson, and published in the open access journal BMC Palliative Care, the paper highlights the ongoing impact on bereaved family when uncertainty is not made explicit in conversations regarding end of life for people with heart disease. It was clear that timely and sensitive conversations regarding the uncertainty of when death may occur are an important factor in ensuring that bereaved family are not left with unresolved narratives.

Jackie reflected that it is important to “reframe how we think and talk about uncertainty” and acknowledge that “clinicians’ uncertainties may not always reflect or match up with families’ uncertainties. Ultimately being explicit about our inability to be certain about the timing of death may thus lead to a more positive and complete experience for bereaved family.”

The thematic analyses of free text data drew on a three-dimensional framework described by Han et al. which characterises uncertainty in a healthcare context from different perspectives.

We were fortunate that Dr Caitlin Pilbeam from the University of Oxford was able to join us in this work and bring expertise from her PhD which looked at living well with heart failure towards end of life.

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