Benefit or Burden? Exploring Experiences of the Acute Hospital as a Place of Care Amongst People with Palliative Care Needs

Abstract

Background The concept of a “good death” has informed the philosophy of palliative care. Supporting preferences for place of care and enabling death at home surrounded by family and friends remains the pinnacle of good palliative care. Evidence suggests that home remains the preferred place of care and place of death for most people. Yet, many people will spend a significant amount of time in hospital during the last year of their life and, in many countries, a majority will die in a hospital setting. With pressure on health funding, the way in which hospitals are being used in the last year of life is being increasingly scrutinised by leaders, clinicians and policy makers. “Inappropriate” or “potentially avoidable” hospital admissions are seen as opportunities for cost savings. However, there is a paucity of evidence regarding the experiences of people with palliative care needs, which focuses on both the positive and negative aspects of being in hospital. In addition, little is known about how these experiences influence a preference to return to hospital. Aim To explore the benefits and burdens of hospital admissions for people with palliative care needs and examine how these experiences influence a preference to return to hospital. Methods A two-phase, sequential mixed methods study. Findings Patients experience of benefit extended beyond the treatment they received to include: getting/feeling better, relief for family, getting help to manage at home, and feeling safe. Those living in high deprivation and those with cancer experienced more benefit being in hospital. Significantly more burden related to being in hospital was experienced by Chinese and Pacific participants. Most participants expressed a preference to be in hospital rather than remain at home even if the care they had received in hospital could have been provided at home. In addition, feeling safe was a significant predictor of a preference to return to hospital. Despite most being involved with community-based services at the time of admissions, participants did not perceive services such as the general practitioner and community hospice as enablers to remain at home. Conclusion This study confirms that people with palliative care needs view acute hospitals as playing an important role in their care, contrary to policy assumptions. These findings have significant implications for practice and policy internationally, notably in relation to which models of care are developed and funded. In particular, the findings indicate that in many countries there is currently a risk of developing a model of care that is not in line with the preferences and experiences of people with palliative care needs and that could result in them being unable to access hospital care when needed. The findings also demonstrate that if people with palliative care needs are to be cared for at home, more research is needed to understand what they require to feel safe at home during a period of acute illness or deterioration, rather than assuming that what is required is more access to community services. Finally, further investigation is required to gain an understanding of what feeling safe in hospital means for patients from different socio-demographic groups across multiple care settings.