In the UK, many people nearing the end of their lives are moved to hospital to die. In fact, nearly half of all deaths occur in hospital. Yet, enabling death at home remains an important priority in UK end-of-life care policy and hospital admissions at the end-of-life are often negatively labelled.
Through in depth interviews with healthcare staff and family carers, this study probes the reasons why people who are cared for at home get moved to hospital in the last days of life. The study exposes a gulf between the nursing and care needs of patients dying at home and the capacity of both professional and family carers to respond.
Healthcare staff and next-of-kin said they believed that dying at home was desirable. But the challenges they encountered in delivering end-of-life care at home countered the desirability of home as a place to deliver end-of-life care and led them to instigate hospital admissions. So hospital admission was sought as a solution, both by healthcare staff and family carers interviewed for the study, when there was insufficient nursing provision available at home, or where family support was challenged or overwhelmed.
“Nursing someone who is… is… you know, completely physically dependent, it’s very strenuous, and you need a lot of kit. And […] even the changes that you have to… you know, it’s… […] We [GPs] like people to die at home, and we do try very hard to organise it as much as we can. But it’s… it’s difficult. I mean, the [community care team] are amazing. I wish there was about eight times more of them”. (GP)
The 33 interviews analysed for this study are from a much larger study exploring end-of-life hospital admissions, part of the Cambridge Palliative and End of Life Care Group’s focus on the organisation of services and care provision.
Dr Hoare explained that the interviews in this study were conducted with healthcare staff and next-of-kin involved in the admission to a large English hospital of patients who subsequently died there within three days of admission (‘case-patients’). The case-patients had died within three days of admission, were aged over 65 and had had either cancer, chronic obstructive pulmonary disease or dementia.
“The stories we uncovered in this study demonstrate the difficulty of providing and maintaining care at home. Our case studies exposed the vulnerability of home care for some patients, which can be dependent on stretched professional and lay provision. We were very struck by the huge amount of work we found many carers to be providing, and the significant strain those providing it were under”.
– Dr Sarah Hoare, Research Associate
Healthcare staff in this study advocated dying at home – even when there were clear practical difficulties – mainly because of their ideas around familiarity, comfort and the presence of loved ones. But when there wasn’t sufficient care at home to meet the patient’s needs, they explained how they arranged hospital admissions as the only way to ensure patients received appropriate care. They talked about the challenge of maintaining patients at home where the patients’ care needs had escalated and additional care was required sooner than care could be organised or was available. This was particularly applicable when a patient’s condition had deteriorated rapidly or they were experiencing unanticipated symptoms.
“I wondered about perhaps keeping [the case-patient] at home with some district nurse support […], unfortunately when I rang the district nurses they were very busy with [a] cancer patient and there wasn’t a district nurse available to come and help, so I had a chat to the patient and [their spouse] and said, “what do you feel about being admitted?”, and [the case-patient] wasn’t that keen to go up [to the hospital], [their spouse] was quite keen for [them] to be looked after, [the spouse] was struggling” (GP)
When patients were receiving personal care from spouses and adult children who supported their day-to-day living and healthcare needs, hospital admission was sometimes sought as a solution, when patients required more care than family members could provide.
“And there is, you know, this practical side of nursing people, you know, mobilising, even moving them safely when they can no longer move themselves… […] I went to visit an elderly couple and found both of them on the floor where they had been, God help them, all that night, because she had been trying to get him out of bed to the loo and he had fallen on top of her, and there they had lain all night long.” (GP)
“Our findings challenge the prevalent discourse that home is an inherently better place to receive end-of-life care than hospital and highlight the dissonance between policy rhetoric and the everyday reality of caring for patients close to the end of life. Our research suggests that if policy and practice maintain an emphasis on facilitating deaths at home, there must also be a focus concurrently on ensuring that patients can die there safely”.
– Dr Stephen Barclay, University Senior Lecturer in General Practice and Palliative Care
The study was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research & Care (CLAHRC) East of England and the NIHR School for Primary Care Research
Read the study LINK
Media queries: Lucy Lloyd, Communications Manager at the Primary Care Unit