by Jackie Robinson

When I started my PhD 5 years ago I had been working as a Nurse Practitioner in hospital palliative care for some time. I had become curious why the acute hospital was considered by many as an unsuitable place of care for those with palliative care needs. I listened to hospital colleagues question why patients were coming to hospital when nothing could be done in terms of treatment and at times criticise community services for not enabling patients to remain at home. Yet I had met many patients who received care that could only be provided in the acute hospital, others who were anxious about being discharged home and some who expressed a preference to remain in hospital until their death. I had always thought that palliative care was about supporting patient choice, yet when it came to choosing hospital as a place of care, it wasn’t a choice we could support nor was it an environment that was considered conducive to providing good palliative and end of life care. But what was known about patients and families experiences of care in a hospital setting?

Grounding the study in patient experience was a choice I made very early on in the research process. I felt strongly that health professionals, including myself, were quick to make opinions about what we thought was best for the patient and their family, but what did patients think? An integrative review of the literature revealed a gap in our knowledge of patient and family experiences of palliative care in a hospital setting, with a strong focus in the literature on the negative aspects of care.  I was very aware of the limitations of a hospital environment and how it was not always conducive to providing good palliative care however what surprised me was that there was no reference to the benefits of being in hospital for patients? Was it that they did not experience any benefits? And if this was the case why did they keep coming back to hospital? And what was driving the rhetoric around hospitals not being a place for palliative care?

A review of national policy revealed a type of problematisation of death and dying in hospital.  It seemed that patients with palliative care needs were costing the healthcare system a lot of money and most of it was being spend on expensive hospital care. I didn’t think this was all that surprising given that people are the sickest they are ever going to be in the last year of life. However, reducing admissions and the number of deaths that occurred in the hospital setting was a major focus of national policy. This focus aligned well with the concept of a ‘good death’ which forms the philosophical foundations of palliative care practice. After all, didn’t most people want to be cared for and die at home surrounded by their family and friends? Also, did that mean for those who spent time in hospital or even died in hospital did not receive care that was aligned with a ‘good death’?

Policy which focused on preventing hospital admissions and reducing the costs associated with hospital care, along with the philosophical impetus in palliative care of achieving a ‘good death’ at home, might lead to a barrier for those who needed appropriate hospital based care. It seemed to me that what was needed was a more balanced understanding about patient experiences of palliative care in a hospital setting with a better understanding of the benefits as well as the burdens. This led to phase 1 of my study which used a qualitative approach, interviewing patients with palliative care needs who had been admitted to hospital. Unsurprisingly, the findings from this phase revealed significant patient burden being in hospital most of which were associated with the hospital environment. Factors such as busyness, lack of privacy and poor communication were expressed by participants.

These included feeling safe, getting/feeling better, relief for family and receiving support to manage at home. In addition, all but one participant expressed a preference to go to hospital rather than to remain at home even if they could have accessed the care they got in hospital at home. This suggested that what was being experienced in hospital in terms of benefit could not be easily replicated in the home setting. Was there something specific about the benefits or burdens of being in hospital that influenced their preferences to be in hospital? Did some patients experience benefit and burden more than others?

The second phase of my study used a quantitative approach, surveying patients who had been admitted to hospital with palliative care needs. The questionnaire was developed  from the integrative review and the qualitative interviews. My findings from this phase are currently under review so I can’t share too much now, but watch this space as they were really interesting!

The final part of writing a thesis is the dreaded discussion; bringing together the component parts and integrated them into a cohesive discussion which highlights new knowledge and identifies opportunities for further research.  Someone told me once that the findings from my PhD will only be one small stitch in a tapestry of knowledge but now I have to describe that “small stitch”. My next blog will tell you more….