Jackie Robinson, Palliative Care Nurse Practitioner, Auckland City Hospital, Professional Teaching Fellow and PhD Candidate, University of Auckland, New Zealand, explains the background to her longer research article that has been selected as ‘Editor’s choice’ in the September edition of Palliative Medicine.
For many working in palliative care, enabling death at home is the ultimate achievement in supporting a patient at the end of their life. However, for most of my nursing career I have practised palliative care within a hospital setting. I have met many patients who have preferred to be in hospital during periods of acute illness; for some, their preference has been to remain in hospital until death. I believe that many patients have been supported to die well in this setting. Therefore, the seemingly prevailing view within palliative care policy, practice and research that hospitals have little meaningful role to play in end-of-life care has been a concern for me.
My PhD research began with an integrative review relating to patient experience of palliative care in a hospital setting. Findings from the review were unsurprising, with patients describing poor symptom management, poor communication with health care professionals and an inadequate environment. 1 However, what was surprising was that most of the studies did not ask patients directly about their experience, nor provide any opportunity for them to identify any benefits of hospitalisation.
Phase 1 of my PhD addressed the gap identified in my literature review by exploring the benefits and burdens of hospital admission for people with palliative care needs. What was striking was that participants indicated a preference to be in hospital, even if the care they received in hospital could be provided at home. Furthermore, they reported benefits of hospitalisation beyond the treatment they received, including feeling ‘safe’ and ‘cared for’, relief for family, receiving help to manage at home and a sense of feeling and/or getting better.2 The findings suggest that during periods of rapidly changing care needs, the hospital may be perceived as a safe space with easy access to help when needed.
However, it is also important to note that participants described a range of factors associated with the hospital environment which impacted negatively on their experience including problems associated with the physical setting and difficulties with social relationships, including relationships with family, other patients and health professionals. 3 This indicates that we have much work to do in optimising the hospital environment for patients, many of whom we now know welcome a hospital admission.
However, in the context of a global recession with rising hospital related costs and increasing pressure to reduce public health spending, the potential to save money by keeping people with palliative care needs out of hospital is an attractive option. Therefore, understanding the role hospitals play in palliative and end-of-life care is essential if patients are to receive the best possible palliative care, regardless of where they are cared for or die.
1. Robinson J, Gott M, Ingleton C. Patient and family experiences of palliative care in hospital: What do we know? An integrative review. Palliat Med. 2014;28(1):18-33.
2. Robinson J, Gott M, Gardiner C, Ingleton C. A qualitative study exploring the benefits of hospital admissions from the perspectives of patients with palliative care needs. Palliat Med. 2015.
3. Robinson J, Gott M, Ingleton C, Gardiner C. The impact of the environment on experiences of hospital admissions from the perspectives of patients with palliative care needs. BMJ Support Palliat Care. 2015 (Under review).
Download a free copy of the full article
This post relates to a longer article, ‘A qualitative study exploring the benefits of hospital admissions from the perspectives of patients with palliative care needs’ by Jackie Robinson, Merryn Gott, Clare Gardiner, Christine Ingleton published in Palliat Med September 2015 vol. 29, no. 8, 703-710. Published online before print March 13, 2015 doi:10.1177/0269216315575841.
EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (If you need to register or login to download this paper please follow the instructions in the top right-hand corner of EAPC home page and scroll down to the article). Click here to view other EAPC-originated papers.