The location of palliative care is important, but the Health Care Consumers’ Association (HCCA) believes that the quality of care people receive is the most important factor determining their overall satisfaction with palliative care.
Superficially our position may appear at odds with the much quoted statement that 70% of Australians would like to die at home (Productivity Commission’s findings on end-of-life care). However, this is based on the context and nuance revealed through in-depth interviews with one consumer and 16 carers. These people generously shared their experiences and expectations of home-based palliative care with us last year.
Certainly, people who receive care in the location of their choice had more positive experiences than those who did not. However, participants recognised that home-based palliative care wasn’t appropriate or possible for everyone. What made the difference to them was receiving person-centred care.
We know that a person-centred approach delivers better care experiences and health outcomes. The aspects of person-centred palliative care that mattered most to participants were:
- Support and involvement of carers;
- Whole of person care that considers mental, emotional and physical wellbeing;
- Care that respects the individual’s culture, beliefs, values and personal characteristics; and
- Clear, timely and respectful communication, including about care options.
We found distinct differences in overall experiences of care in different settings.
Home-based palliative care responded flexibly to the needs of consumers and carers, and supported and involved carers. The benefits of home based care were personal and practical:
In my own home, I was able to go out into the kitchen, I was able to do what I wanted. I could go out into the garden, if people wanted to come we could go and sit in another room.
In-patient hospice care generally met consumers’ and carers’ high expectations of this model of care:
“[My husband’s room] was large enough to have a double sofa bed and another area where people could sit… My daughter and I could open up the double bed at night time and stay on that.”
Hospital provided inconsistent person-centred palliative care including at the end-of-life. However, when person-centred palliative care was present, experiences were more positive:
“When I had an issue, the palliative care nurse heard about it and she said, “Why didn’t you call me?” and I said, “I couldn’t have called you at that time of night”, and she said, “I wouldn’t have minded.” She was very generous with her time.”
Delayed referral to home-based palliative care, and delayed referral from hospital to hospice, were the major barriers to good care experiences in these locations. Lack of overnight respite options was a major challenge for home-based carers.
Unfortunately, people who received most of their care in hospital felt that it provided person-centred care inconsistently. When services and professionals did deliver person-centred care, hospital experiences were more positive. Hospitals can and do deliver excellent palliative care, but consumers are telling us that improvements are necessary:
The major problem was [my mother] wasn’t getting access to palliation and she was routinely having ob.’s taken…. The palliative care nurse knew what to do, but in between, the regular nurses were not skilled enough to do that or too pressured to do that.
The built hospital environment also needs to change. This carer’s experience illustrates the impact the built environment and use of space has on the care experience:
“[My husband was in a] converted corridor which had four beds with curtains a meter from the bed on all sides. He had no view beyond these curtains. For somebody who had loved the outdoors, who was a really keen bushwalker all his life, it was just dreadful to not even be able to see a tiny bit of sky.”
In all locations of care, palliative care should be delivered in places that offer privacy, the opportunity for quiet, space for loved ones to stay comfortably including overnight, and a view of the outdoors.
To learn more about the experiences of the people who spoke with us and to read our analysis and recommendations please view our report (845kb pdf).
ACT Health funded this research.
ACT Health Human Research Ethics Committee approval (ETH.3.17.051)
Calvary Public Hospital Human Research Ethics Committee approval (Ref: 23-2017)
Spiller S. Consumer and Carer Experiences and Expectations of Home-Based Palliative Care in the ACT (845kb pdf). Hackett (ACT): HealthCare Consumers; 2017.
Productivity Commission. Introducing Competition and Informed User Choice into Human Services: Reforms to Human Services. Canberra: Productivity Commission; 2017. Report No. 85.
Picker Institute Europe. Principles of patient centred care [Internet]. 2018 [cited 2018 Apr 26].
Life Circle has made a series of videos in which family carers share their experiences: https://lifecircle.org.au/stories-of-care/
Dr Sarah Spiller, Policy and Research Officer, Health Care Consumers’ Association (HCCA)
Dr Kathryn Dwan, Policy and Research Manager, Health Care Consumers’ Association (HCCA)