Jackie Robinson presents highlights from her presentation at the Te Arai Research Group conference. (Download her conference presentation: Jackie Robinson – PPoint)
Challenging the notion that patients would prefer to be at home during periods of acute illness.
Having worked in hospital palliative care for many years I have noticed that despite most people wanting to be cared for and die at home, many would come to hospital multiple times during the last year of their life. Repeated admissions were often assumed by those working in the hospital to be due to inadequate community resources.
Whilst for many people being at home is an appealing option, for others particularly those from some cultural groups, the hospital was being chosen as the most appropriate place of care. This made me wonder about what benefits patients with a life limiting illness experienced as a result of being in hospital.
Unsurprisingly, a review of the literature revealed significant burden associated with being in hospital in palliative care. Yet we knew little about the benefits patients experienced.
This led to the first phase of a mixed methods study which used a qualitative approach to explore the benefits and burdens of hospital admissions from the perspectives of patients with palliative care needs. Findings revealed that while participants did indeed experience burdens, most of which were related to the hospital environment, all participants experienced benefits having been in hospital.
These benefits extended beyond the treatment they received in hospital to include:
- feeling safe,
- getting better,
- relief for family and,
- help to manage at home.
In addition, nearly all participants expressed a preference to be in hospital even if the care they had received in hospital could have been provided at home.
Using the findings from the literature review and phase 1, I developed a survey to identify the predictors of benefit and burden. Findings from the survey revealed that “feeling safe” was a significant predictor for a preference to return to hospital.
In addition, people with a non-malignant diagnosis, those from a non-Western culture and older people were less likely to feel safe in hospital. Also people living in deprived areas and younger people experienced more benefit being in hospital. Interestingly, participants did not consider community service such as GP teams and hospice as being enablers to remain at home.
In summary this study challenges the notion that patients would prefer to be at home during periods of acute illness. Indeed, people often feel safe in hospital and experience benefits that extend beyond the treatment they receive. In addition, a preference to return to hospital does not appear to be influenced by experiences of burden being in hospital.