Enabling meaningful input from palliative care consumers to guide service improvement work

Globally, there is a growing imperative to involve consumers (patients and families) and consumer representatives (people with lived experiences) in service redesign, research and implementation projects. Understanding how to enable meaningful consumer input in relation to palliative care specifically, remains elusive.

To seek the perspectives of Australian patients living with palliative care needs, and their family members, to understand whether and how they would like to contribute to service improvements.

An exploratory qualitative study, using semi-structured interviews. Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; snowballing; and via established networks.

Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: Providing feedback about care quality needs to be safe and personal; The clinician-patient/family power imbalance makes real time feedback challenging to provide; Willingness to contribute varies according to diagnosis, timing and role; Face to face feedback is preferred.

Recommendations for future practice, policy and research centre around 3 key areas:

• Embed mechanisms for real-time feedback that impacts immediate care provision through targeted outcome and experience measurement relevant to those with advanced serious illness.
• Establish mechanisms for feedback post-discharge with explicit consideration of timing for people with advanced serious illness. Feedback needs to align with a time of illness stability or after a respectful period post-bereavement and ought to provide an opportunity for both an interview and/or survey format.
• Enable meaningful and targeted representative roles for patients with advanced non-malignant serious illnesses and bereaved family members for longer term input and co-design work for health service improvement.

Enabling meaningful consumer input in relation to palliative care, requires careful consideration due to the unique requirements of this population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focused opportunities for input into service improvement work will enable real and sustained improvements in inpatient care palliative care, founded in what matters most for people requiring this care.