Background:
The majority of expected deaths in Australia occur in acute hospitals where optimal palliative care is variably provided. A significant body of evidence has described what people with life limiting illness perceive to be important for inpatient care, but little data refers specifically to the Australian context.
Aim:
To determine the relevance of elements noted within international research to be important for optimal inpatient palliative care, from an Australian perspective, and how these apply to future care needs.
Methods:
A qualitative study using semi-structured interviews focused on what is important about the way care is provided within the hospital setting, what specifically enabled care to feel supportive or less so, and what would have made a big difference to the quality of care experienced. Interview data were transcribed, checked and entered into NVivo 12 for management. An integrated approach to analysis was used with the deductive component informed by a systematic review and meta-synthesis of previous research. Ethical approval was obtained and participants gave informed consent (2019/ETH03307).
Results:
Fifty participants were interviewed: patients (n=21); current carers (n=16); and bereaved carers (n=13). Data confirmed and added depth of understanding to all previously reported domains of importance including: (1) Effective communication and shared decision making; (2) Expert care; (3) Respectful and compassionate care; (4) Adequate environment for care; (5) Family involvement in care provision; (6) Trust and confidence in clinicians; (7) Minimising burden; (8) Financial affairs; and (9) Maintenance of sense of self. New themes not previously identified concerned the importance of addressing nutritional needs and enabling access to senior clinicians.
Discussion:
This study provides confirmation about what is important for optimal hospital palliative care from the perspective of the Australian consumer, providing a roadmap for optimising palliative care in the Australian hospital setting.
Conclusion:
Targeted policy, practice, education and research action are required to enable care that concords with what patients with palliative care needs, and their families, state to be priorities for their care. Improving access to optimal palliative care in all Australian hospitals is an urgent next step.