What matters most to patients with palliative care needs when receiving care within the hospital setting?
A blog post written by Dr Claudia Virdun, Senior Research Fellow, Cancer and Palliative Care Outcomes Centre, School of Nursing, QUT
Caring for people with palliative care needs is a core component of health care provision within the hospital setting. This care can be considered in relation to two groups of patients (and their families/carers):
- patients in approximately their last 12 months of life - approximately 80% of Australians will experience a hospital admission in their last year of life, with 24% having >3 care episodes, and 53% staying in hospital for >15 days;  and
- patients who will die on a particular admission - some 85,000 Australians will die in a hospital annually, accounting for half of all deaths. 
The centrality of the role of hospitals in provision of palliative care is often not well recognised and care provision can be suboptimal. [3-5] The reasons for this are complex and varied but include: ineffective communication, poor symptom management, too little input into decision making, complexity of working across multiple teams within multi-level organisations and a lack of safety and quality indicators to inform improvement efforts. [6-9]
This is something that patients notice, and it impacts on their experience at the end of life:
Where it lacked is that unless you were always on the ball for your own case, there could be a lot of mistakes because ... they are put down on computers, you don't know what is written there so you'll have to constantly be on the ball. But if somebody's very ill, or very tired or uneducated, it's not easy to be on the ball (Patient 11, 72yr female with malignancy)
I like to be treated as a normal well individual. Because that's where I keep my consciousness…Is that I am well, all is well, in terms of keeping myself positive…I've found a way to be very... to live very well, in the state that I'm in. Which is now fairly rapidly deteriorating (Patient 16, 60yr male with non-malignant illness)
I think it would help if when the doctors doing their rounds…if they could give you some sort of indication of when they'd be in the ward … it's like working on another planet. Everything else in the outside world just gets turned off...you still need to realize that people need to go to work and have that appointment to talk about their mother (Patient 13, 61yr female with non-malignant illness)
When considering how to enable improvements in care, it is important to start with understanding what is most important from the perspectives of patients living with palliative care needs, and their family members/carers. [10-11] What is it they need to feel safe and well cared for in our hospitals? Research has demonstrated the need for: 1) respectful and compassionate care; 2) effective communication and shared decision making; 3) effective teamwork; 4) enabling family involvement; 5) maintaining role, meaning, and identity; 6) excellence in physical care; 7) impeccable assessment and care planning; 8) effective symptom management; 9) technical competence; 10) patient safety; 11) supported access to senior clinicians; 12) patient-focused structural factors; 13) family-focused structural factors; and 14) cleanliness to support infection control with each of these 14 domains (Figure 1) informed by key clinical practice points (n=68). 
Understanding how to drive reform to optimise these domains of importance, within busy and varied hospital environments caring for diverse populations across metropolitan and rural contexts, is a critical next step if the best evidence-based end-of-life care is to be afforded to everyone. Keeping the patient and family/carer perspective of their quality of care at the centre of all we do, is critical in shaping care that will enable better outcomes and experience for those we care for.
- Assareh H, Stubbs JM, Trinh LTT, Muruganantham P, Jalaludin B, Achat HM. Variation in Hospital Use at the End of Life Among New South Wales Residents Who Died in Hospital or Soon After Discharge. J Aging Health. 2020 Aug-Sep;32(7-8):708-723. doi: 10.1177/0898264319848582. Epub 2019 May 26.
- Palliative Care Australia and KPMG. Investing to save. The economics of increased investment in palliative care in Australia. Canberra: KPMG, 2020 May.
- Milnes S, Orford NR, Berkeley L, Lambert N, Simpson N, Elderkin T, Corke C, Bailey M. A prospective observational study of prevalence and outcomes of patients with Gold Standard Framework criteria in a tertiary regional Australian Hospital. BMJ Support Palliat Care. 2019 Mar;9(1):92-99. doi: 10.1136/bmjspcare-2015-000864. Epub 2015 Sep 21.
- Bloomer MJ, Hutchinson AM, Botti M. End-of-life care in hospital: an audit of care against Australian national guidelines. Aust Health Rev. 2019 Oct;43(5):578-584. doi: 10.1071/AH18215.
- Clark K, Byfieldt N, Green M, Saul P, Lack J, Philips JL. Dying in two acute hospitals: would usual care meet Australian national clinical standards? Aust Health Rev. 2014 May;38(2):223-9. doi: 10.1071/AH13174.
- Nevin M, Hynes G, Smith V. Healthcare providers' views and experiences of non-specialist palliative care in hospitals: A qualitative systematic review and thematic synthesis. Palliat Med. 2020 May;34(5):605-618. doi: 10.1177/0269216319899335. Epub 2020 Feb 5.
- Brereton L, Gardiner C, Gott M, Ingleton C, Barnes S, Carroll C. The hospital environment for end of life care of older adults and their families: an integrative review. J Adv Nurs. 2012 May;68(5):981-93. doi: 10.1111/j.1365-2648.2011.05900.x. Epub 2011 Dec 29.
- Cardona-Morrell M, Kim J, Turner RM, Anstey M, Mitchell IA, Hillman K. Non-beneficial treatments in hospital at the end of life: a systematic review on extent of the problem. Int J Qual Health Care. 2016 Sep;28(4):456-69. doi: 10.1093/intqhc/mzw060. Epub 2016 Jun 27.
- Hillman KM. End-of-life care in acute hospitals. Australian Health Review. 2011 May;35(2) 176-177. doi.org/10.1071/AH10963
- Virdun C, Luckett T, Davidson PM, Phillips J. Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliat Med. 2015 Oct;29(9):774-96. doi: 10.1177/0269216315583032. Epub 2015 Apr 28.
- Virdun C, Luckett T, Lorenz K, Davidson PM, Phillips J. Dying in the hospital setting: A meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important. Palliat Med. 2017 Jul;31(7):587-601. doi: 10.1177/0269216316673547. Epub 2016 Dec 8.
- Virdun C. Optimising care for People with palliative care needs, and their families, in the Australian hospital setting: the OPAL Project [Other thesis on the Internet]. Sydney: University of Technology Sydney; 2021. [updated 2021 Jul 11; cited 2021 May 5].
Dr Claudia Virdun, Senior Research Fellow, Faculty of Health, School of Nursing, QUT