Supporting pathways to palliative care for people diagnosed with chronic kidney disease: P2

Background: The increasing acceptance of the elderly onto dialysis programs has heightened the interest in and study of the process of end-of-life decision-making in ESKD, and the role of palliative care in the later stages of treatment. A medical history review was conducted as part of a wider research program to describe current clinical practice.

Aims and methods: A medical history review of 45 CKD and dialysis patients who died in 2006-2008 in Northern Tasmania aimed to determine the associations between patient or family request, or actual withdrawal of RRT and/or referral for palliative care, and recorded potential predictors of withdrawal in the last 12 months of life. Qualitative and quantitative analysis was performed.

Results: The presence of advanced health care directives, patients wish to die, and stroke were associated with family request for withdrawal. The loss of will to live, behavioural changes, severe pain, loss of ADL's were associated with patient request for withdrawal. Expressed need to die, behavioural changes, loss of ADL's and appetite were associated with actual withdrawal. There was a cycle of ambiguity as patient and families change their minds about treatment withdrawal. Who controls this process fluctuates from time to time. A limited range of language is used to express the recognition of the need to die.

Conclusion: Loss of function, particularly from stroke, and severe pain are interpreted as representing levels of suffering which would justify the need to withdraw. The influence of patient, family and clinicians on this decision involves negotiation and equivocation.