what are the reasons for dying patient died at hospital despite of wanting to die at home

Research

Home care and terminate-of-life infirmary admissions: a retrospective interview written report in English primary and secondary care

British Periodical of Full general Practice 2019; 69 (685): e561-e569. DOI: https://doi.org/10.3399/bjgp19X704561

Abstract

Background Enabling death at abode remains an important priority in end-of-life intendance policy. However, hospital continues to be a more prevalent place of death than home in the Uk, with admissions at the end-of-life often negatively labelled. Admissions are often attributed to an unsuitable domicile surroundings, associated with inadequate family care provision and insufficient professional person care delivery.

Aim To understand issues in professional person and lay care provision that discourage death at home and lead to hospital admissions at the terminate of life.

Design and setting A qualitative study of admission to a large English hospital of patients close to the finish of their life.

Method Retrospective in-depth semi-structured interviews with healthcare professionals (n = 30) and next-of-kin (n = 3) involved in an admission. Interviews addressed why older patients (>65 years) close to the finish of life are admitted to hospital. Interviews were transcribed and analysed thematically.

Results Domicile-based stop-of-life care appeared precarious. Hospital admission was considered by healthcare staff when there was insufficient nursing provision, or where family support, which was ofttimes extensive but under supported, was challenged. In these circumstances, home was not recognised to exist a suitable identify of intendance or death, justifying seeking care provision elsewhere.

Decision Challenges in home care provision led to hospital admissions. Home end-of-life intendance depended on substantial input from family and professional person carers, both of which were under-resourced. Where either care was insufficient to meet the needs of patients, dwelling was no longer deemed to be desirable past healthcare staff and hospital intendance was sought.

• end of life care
• home palliative care
• hospitalisation
• primary intendance

INTRODUCTION

Supporting patients at the terminate of life to die at home and preventing their admission to hospital is a significant task for GPs and community nursing teams. Place of expiry is a key policy marking of end-of-life intendance success in both the U.k.^{1 , 2} and internationally,³ though recent literature challenges the priority given to location in terminate-of-life care.⁴ Inquiry has demonstrated that patient preferences for place of expiry are circuitous,^five that notions of home are malleable and include other settings which may feel 'home like',^{6 – viii} and that the hospital is of import in cease-of-life intendance provision.^{ix – 11} However, death at home remains a policy concern. Reflecting this, end-of-life hospital admissions are often defined as 'avoidable', 'preventable' or 'inappropriate',^{5 , 12 , 13} specially compared to customs-based care.

It is not clear why patients at the end of their lives are admitted to, and die, in infirmary^{14 , 15} though many reasons have been suggested. It seems likely that the provision of end-of-life care in the community from both professional person and lay carers is an important factor, recognised in both the limited literature exploring cease-of-life hospital admissions^{11 , fourteen , 16 – 18} and in related research on customs-based end-of-life care. For example, the availability of professional home-based cease-of-life care is associated with the likelihood of patients with cancer dying at home rather than in hospital.¹⁹ Notably nevertheless, the human relationship between professional finish-of-life intendance in the customs and hospital admissions has notwithstanding to be explored robustly.^twenty The claiming for family carers in providing intendance at dwelling and the clan between bug in this care and stop-of-life hospital admissions is often identified in policy, and recognised by GPs.^{11 , 18 , 21} Issues are often attributed to family members being 'panicked' past changes to a patient's symptoms in the dying phase,²² or considering family members felt unable to cope with incessant care provision, and their own distress in watching a relative die.^{23 , 24} Similar to professional care however, the circumstances that lead families to seek hospital intendance have not been considered in detail.

Hospital continues to exist a more prevalent place of death than home in England.²⁵ Agreement why these admissions occur will help GPs and community nurses to back up patients in their stop-of-life care, whether at dwelling or elsewhere. This article explores empirically the relationship between the care requirements of abode-based end-of-life provision and hospital admissions using healthcare staff, and family carer perspectives of why patients previously cared for in the customs are admitted to, and die, in the acute hospital setting.

METHOD

Design and participants

The data presented are from a larger study exploring end-of-life hospital admissions.^{26 , 27} The focus of this article is on why patients shut to the end of life who are cared for at home do not die there but are instead admitted to infirmary. Interviews (n = 33) were conducted with healthcare staff and next of kin involved in the admission to a large English infirmary of a patient who later died there inside 3 days of access (a 'case-patient').

How this fits in

It is known that dying at home is an end-of-life care policy priority, with reducing cease-of-life hospital admissions targeted in stop-of-life care improvement measures. Many people currently dice in hospital. Understanding why deaths occur in hospital rather than at home is underexplored but is ofttimes assumed to exist associated with problems in care provision. This study shows that home-based end-of-life intendance can be precarious and an absence of nursing care or family support may facilitate hospital admission; deaths in hospitals can occur where dwelling house is not considered a suitable place of care and death, and offers benefits to patients, family carers, and staff.

Interviewees included community healthcare staff (GPs, a community specialist nurse, and ambulance staff) hospital staff, and the case-patients' next of kin. This study centres on the accounts of interviewees involved in the care of a case-patient who had been admitted to infirmary from dwelling. Additionally, the accounts of interviewees involved in the admission of example-patients from other community settings have been included as they usefully reflected on other patients admitted from home. These quotations are indicated by (a).

Data collection

All interviews were semi-structured, in depth, and were conducted between 2012 and 2013. Healthcare staff interviews addressed the participants' involvement in the case-patients' admission, their views on the reasons for the access, and terminate-of-life admissions generally. These interviews were conducted within a month of the interviewee's interest in the instance-patient's care, lasted approximately xxx minutes, and occurred at the participants' identify of work or nearby. Next-of-kin interviews considered the case-patient'southward care in the last months before death, including their involvement in care provision. These interviews took identify four–7 months after the instance-patient'due south death, lasted approximately ane hour, and occurred at their home.

Analysis

Interviews with staff and next of kin provided highly detailed accounts of the circumstances that led to the hospital admission of case-patients and for staff interviewees, similar patients they had cared for previously. Interviews were audiorecorded and professionally transcribed verbatim. The transcripts were analysed thematically to empathize the reasons that facilitated admission to hospital. Transcripts were coded by paw and so using the software NVivo (version 10), with sections of the text tagged using both a priori and emergent data categories. Codes were then sorted and charted to assess both the breadth and depth of data. Data were synthesised to empathize both the private case-patients' admission, and the admissions collectively, with synthesis aided by reference to both stop-of-life care and sociological literature. Extended details about the report methodology^{26 , 27} and related findings^ten tin can be constitute elsewhere.

Quotations in the text are followed past the participants' part, study number, and interview page number. Identifying details have been omitted to protect the anonymity of the interviewees and the deceased case-patients.

RESULTS

Appendix i shows the characteristics of the case-patients and Table 1 provides a summary of all participant roles. Hospital admissions were instigated by patients, family carers, GPs, and ambulance staff, oft working in collaboration. Dying at home was desirable for patients according to healthcare staff and next of kin. However, healthcare staff did not always feel that patients' place of intendance was necessarily a suitable environment to either receive terminate-of-life intendance or dice. Important factors in this evaluation were the availability of professional and family unit care provision, and problems in either were pertinent to the decision to facilitate patients to hospital.

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Table i.

Study participant roles, N = 33

Facilitating expiry at home was desirable

Dying at dwelling house was advocated past healthcare staff from all occupational roles. The desirability of decease at home was conceptualised using ideas of familiarity, comfort, and the presence of loved ones, equally well as the fulfilment of perceived patient preferences most place of expiry. Even where staff articulated practical difficulties in supporting a patient'due south expiry to occur at home, it was typical to concurrently recognise the desirability of patients dying at home: 'Most people want to dice at abode right? Surrounded by, you know, their friends, family and everything else.' (GP, 4, 5) 'I think people should exist able to die at home. Most elderly and concluding patients do not want to die outside their home but I call up in that location is a general fear and lack of confidence past relatives etc, and I don't retrieve necessarily there would be resources to manage that. So I remember if the resources were in place to assist support the family and so I do think that would exist a practiced option.' (GP, 10, nine)

Importance of formal care provision

Despite the aspiration for home-based end-of-life care, the customs was not always a viable or a desirable place of care for patients according to interviewees. A significant factor in this negative assessment of home was the absence of sufficient domiciliary care to address a patient's needs. For patients deemed to be in that state of affairs, the utility of hospital as a care provider was recognised by interviewees. Community staff described facilitating admissions to ensure patients received appropriate care: 'I think the matter that we struggle with in the community is the resources to manage a death, sometimes information technology tin can be quite difficult for the district nurses with short detect depending on what else is on their caseload. Things like hospice, it depends on bed availability and then it can be quite frustrating, you know what you desire to practise or you know how you lot want to manage it and sometimes people do have, you know difficult symptoms that we accept to refer to hospice, if they don't have a bed and so sometimes it becomes difficult because what do you lot do? You're kind of caught betwixt a rock and a hard identify actually.' (GP, 15, 7)

Availability and timeliness of nursing provision

Community nursing was well regarded by interviewees, particularly GPs. However, the limited availability of this care, peculiarly at short find, was a significant trouble. Staff described the challenge of maintaining patients at home where the patients' care needs had escalated and additional care was required sooner than intendance could exist organised or was available. This was particularly applicable when a patient's condition had deteriorated rapidly or they were experiencing unanticipated symptoms. In these circumstances, hospital intendance was sought: 'I wondered well-nigh perhaps keeping [the example-patient] at domicile with some commune nurse support [...], unfortunately when I rang the district nurses they were very decorated with [a] cancer patient and there wasn't a district nurse bachelor to come and aid, so I had a chat to the patient and [their spouse] and said, "what do y'all feel most beingness admitted?", and [the case-patient] wasn't that keen to go up [to the hospital], [their spouse] was quite swell for [them] to be looked afterwards, [the spouse] was struggling.' (GP, 1, 2)

Community care was supplemented by family care

Problems in domiciliary cease-of-life care were also associated with family unit care provision, especially for patients resident at home. These patients oftentimes received personal intendance from spouses and developed children who supported their day-to-solar day living and healthcare needs. Where patients required more than care than family members could provide, hospital admission was oftentimes sought both past community staff and family members. Staff descriptions of these admissions typically involved negative portrayals of family members equally being unwilling to provide terminal care, or more charitably, equally being unprepared for the patient's decease: 'I felt that the master trouble was that the family weren't able to manage [the case-patient's] condition at domicile. I felt it would accept been more appropriate for [them] to have stayed at abode only to have had obviously a lot, the nursing support if information technology had been bachelor at home. [...] [but arranging boosted intendance] wouldn't accept necessarily inverse anything considering I don't, as far as I empathise I don't think in that location is that service available where, y'all know, they would have somebody at home nursing [them] and I just think the family did not want to nurse [them] to [their] death.' (Locum GP, ten, v)

To sympathise why infirmary admissions may have been sought considering family members did not 'want' to keep to provide care it is useful to explore the family caring role. In the next section, the demands on family unit carers' time, physicality, and experience are examined in relation to finish-of-life infirmary admissions.

Experience to provide care

Family intendance provision at home could be compromised past the limited feel some family carers had of death and end-of-life care. For healthcare staff, naïve family carer expectations of the dying procedure were idea to hinder the likelihood of death at home, every bit unfamiliar but typical end-of-life intendance symptoms were reported to atomic number 82 family carers to seek reassurance and care. Consequently, infirmary admissions were thought to occur, either straight, as carers sought assistance from ambulance or out-of-hours services, or indirectly, if they requested boosted help that could realistically only be fulfilled in hospital: ' [...] So it does seem that we had talked most finish-of-life care but we probably didn't talk virtually preferred place of care or maybe the family weren't prepared well enough for the concluding stages of [the case-patient'southward] dying to manage with the support that nosotros take.' (Ward doctor, 14, i)

For family carers, inexperience was often expressed equally concern about the quality of their care provision, particularly compared to professional carers. While this was non cited past family carers as a reason for admission — family carers who had facilitated instance-patient admissions said they did so to access necessary medical back up — they acknowledged the hospital to exist a place for professional attending and a identify where their relative would receive advisable care: 'I was pleased [they] died in hospital, because I always used to think "If you're ill, hospital is the best place to exist, because there you can have all the correct attending and everything that you want". At domicile, I mean, I don't know all that much almost the medical service actually, [...] I couldn't be a nurse, I would practice what I could for [my spouse] but I don't know, you lot know, how well I would be doing it compared with a qualified nurse.' (Next of kin, half-dozen, thirteen)

All-encompassing care

Supporting a dying relative often involved significant investment of time and resource by family carers. The consequences of this to the family carer was infrequently recognised by the family carer themselves, who typically dismissed their own intendance provision as just role of their family role. Notwithstanding, providing intendance could take negative furnishings on the family unit carer'south wellbeing, and healthcare staff described how a patient's intendance need could exceed the family carer's chapters to provide intendance. In these instances, additional care was often recognised to be necessary, whether sought from hospital providers or elsewhere: 'I don't remember [the family] understood how much work information technology would exist [caring for the case-patient]. [...] They simply looked drained. I retrieve, maybe, I don't know why they never had whatever care. [...] They were doing [the intendance] all themselves. The daughter was living there and she was doing, getting up in the dark and [...] I recollect [the case-patient'south] partner [as well]. [...] [A]nd the daughter but looked so, and so tired. [...] And I, I hateful, maybe with a bit more ... they was saying to me well-nigh [the case-patient] going into, maybe a home. They understood that [the case-patient] had probably got to that point considering [the case-patient] was getting very difficult for them to manage. [...] Because [the example-patient] didn't sleep much at dark, the family was all up all night and and so they were finding it difficult during the day.' (Specialist nurse, 11, 3–iv).

Concrete care

The family caring function was recognised past professional staff to exist physically demanding. This could brand family care provision hard, particularly if a carer was a frail older individual and the patients' health had deteriorated such that they required substantial hands-on back up. In these instances, both community and infirmary interviewees recognised that the continued maintenance of patients at abode was impractical without additional support. Where this was non thought possible, staff recognised the helpfulness of care elsewhere, including hospital: 'And there is, y'all know, this applied side of nursing people, y'all know, mobilising, even moving them safely when they can no longer movement themselves. [...] I went to visit an elderly couple and constitute both of them on the floor where they had been, God aid them, all that night, because she had been trying to become him out of bed to the loo and he had fallen on top of her, and there they had lain all night long.' (aGP, 28, 10) '[...] the factors that contributed [to the instance-patient'southward admission] were an disability to at that fourth dimension ensure [they were] comfy at dwelling house, incertitude about how best to meet [their] needs, lack of nursing support at home because [they] were there with [simply their partner]. It's a little bit hard to come across how anything else could accept happened unless a nursing team could have been on site or a doctor and so perhaps with a nurse could accept been on site to back up [their] terminal hours. Part of that is my ignorance, I don't think I know enough nigh how you support a death to happen while at habitation when you just have, say, an elderly spouse at that place.' (Ward doctor 5, three–4)

Caring for patients at home

Ensuring a patient could die at dwelling house in a manner that met staff expectations of an appropriate decease was not easy. The factors identified to a higher place were often considered to be interdependent problems, which could be challenging for GPs to meet and therefore could precipitate hospital admissions: 'And nursing someone who is ... is ... you lot know, completely physically dependent, it's very strenuous, and you need a lot of kit. And [...] even the changes that you lot have to ... you lot know, it's ... [...] We [GPs] like people to die at dwelling, and we practise effort very hard to organise it as much as we tin can. But it's ... information technology's difficult. I mean, the [community intendance team] are amazing. I wish at that place was most viii times more of them.' (aGP, 28, 10)

DISCUSSION

Summary

The present research identifies that hospital admissions at the end of life can exist a upshot of the challenges in delivering stop-of-life care at home. Insufficient available nursing provision and family unit carers who had exceeded their chapters to intendance countered the desirability of abode every bit a place to deliver cease-of-life care. These circumstances oft caused GPs, together with family unit carers and other healthcare staff to seek care for patients through infirmary admissions.

Strengths and limitations

This commodity has explored the consequences of insufficient customs-based care as a precursor to cease-of-life infirmary admissions. This research usefully contributes to the limited evidence base on end-of-life infirmary admissions. In a policy and clinical context where the desirability of dying at dwelling is presumed, the present findings as well add insight to the practicalities of domicile-based end-of-life intendance.

The findings of this report are from an in-depth qualitative written report of 33 healthcare professionals and next of kin involved in the admission to one English language hospital of ix patients close to the end of life. The extent to which interviewee accounts of the case-patients', and similar patients', customs-based care, and the reasons for their hospital access, can be extrapolated to finish-of-life intendance in general is therefore limited. For instance, it is likely that another patients with problems in the provision of professional person or family care would continue to remain at dwelling house and not seek hospital care. Even so, the challenges faced by healthcare staff and family carers in providing end-of-life care accords with existing research, equally outlined later on, and contributes to an agreement of why admissions occur.

Formal intendance provision that occurs at the interface of health and social care, such as supporting personal hygiene, or eating and drinking, has not been addressed in this article. This care is pertinent to understanding how end-of-life care can be facilitated at home,²⁸ and paid carers were known to accept supported some of the case-patients. Interviewing these carers was outside the report scope, and their role was not sufficiently elaborated past other interviewees to be considered.

Comparison with existing literature

The limited availability and chapters of domiciliary nursing care was cited as a reason why interviewees instigated hospital admissions for patients shut to the end of life. The challenge for GPs in arranging community nursing end-of-life care is too reported in a UK-wide survey,²⁹ and seems likely to be due to the restricted capacity of community nursing, where ascent demand for services coincides with staff shortages.³⁰ Internationally, the importance of community-based cease-of-life care provision for facilitating expiry at home accords with review evidence, which identifies receipt of community-based nursing, dwelling palliative care, and GP home visits as key factors.^{31 , 32}

The importance of family care provision in facilitating death at home is well-established.^{31 , 33} The present research shows that where lay intendance is recognised to be no longer tenable, healthcare providers may seek infirmary care for patients, supporting GP accounts nigh the reasons for end-of-life admissions¹⁸ and debasing rhetoric about family carers.^{vi , 18} However, information technology would exist inaccurate to assert on the basis of this that problems in lay care provision instigate these admissions,^{23 , 34} without acknowledging simultaneously the contribution of family care provision in maintaining patients at abode. Interviewees demonstrated that family members delivering easily-on care provided vital support, supplementing professional care provision.^{35 , 36} Therefore, information technology is plausible that easily-on care from family members can defer access to infirmary for some patients while resident at home. This is pertinent given the context of lay care provision: family unit carers were understood to be oft ill-prepared for their role^{i , 18 , 34 , 37} with often substantial, if typical, psychological^{23 , 34} and physical^{vi , 36 , 38} demands made of them, specially for those with express mobility such equally delicate older people. It seems likely therefore that family carers' ability to sustain their care provision, and prevent hospital admissions, is compromised without supplementary back up.³⁹

Facilitating end-of-life intendance at home was of import for professional carers, who echoed prevalent notions about the desirability of decease at dwelling house.^{8 , 37} However, interviewees also recognised that the safety of end-of-life care at home could be compromised.^{8 , ten , 40} Where the cause of this could not be addressed adequately, healthcare staff and family carers sought care for the patients elsewhere. While hospice and residential nursing homes were considered, challenges in accessing these institutions at brusk notice meant hospital care was prioritised⁴¹ highlighting the importance of hospital as a provider for finish-of-life care.¹⁰

Implications for research and practice

The present analysis was informed by a sociological involvement in dying at dwelling house, focusing on the physical and technical infrastructure of dwelling and infirmary, the skills of lay carers and professionals, and the mode dying is understood past those involved.⁴² This perspective exposed the vulnerability of home treat some patients, which can be dependent on stretched professional and lay provision, and builds on over a decade of sociological scholarship on the role of home equally a place of care.⁶

The case-patients' infirmary admissions demonstrate the difficulty of providing and maintaining care at home. The authors' findings challenge the prevalent discourse that home is an inherently better place to receive end-of-life care than hospital and highlight the dissonance betwixt policy rhetoric and the everyday reality of caring for patients close to the end of life. The present research suggests that if policy and exercise maintain an emphasis on facilitating deaths at home, there must also be a concurrent focus on ensuring that patients can die at that place safely. Identifying how best to achieve this volition require farther enquiry, and is likely to require investment to ensure that community nursing provision is adequately staffed, responsive, and available throughout the twenty-four hour period and night.⁴³ Supplementing this essential provision with rapid and reliable specialist clinical services that offer support for patients at abode for extended periods of fourth dimension, such equally hospice at abode and Marie Curie nursing services, would also be pertinent.^{44 – 46} To facilitate intendance delivery, primary care clinicians must be supported by acceptable data-sharing practices,⁴⁷ and be confident in delivering palliative and end-of-life care.⁴⁸ Family carers must also be supported, including greater recognition of their needs.⁴⁹ Debasing assessments of the association between family unit intendance and end-of-life hospital admissions obscures the significant undertaking of lay carers to support patients at home. Future research could productively address how families persist in providing intendance, and how GPs and others tin best support them.

Acknowledgments

The authors would similar to thank the participants and those involved in the fix-up and running of the study.

Appendix 1. Case-patient characteristics, Northward = 9

Characteristics	due north
Sexual practice
Female	7
Male person	two
Age, years
65–69	1
lxx–79	2
80–89	v
>89	1
Condition
Cancer	2
COPD	ii
Dementia	5
Previous place of intendance
Dwelling house	half dozen
Residential dwelling housea	three
Time of access
Weekday (9.00 am to 5.00 pm)	3
Weekday (5.00 pm to 9.00 am)	two
Weekend	four

Notes

Funding

This study presents independent enquiry part funded by the National Institute for Health Research Collaborations for Leadership in Practical Health Research and Intendance (NIHR CLAHRC) Cambridge and Peterborough (grant number: RG55908), and NIHR CLAHRC Due east of England (grant number: RG74481). The writing of the article was funded by the NIHR Schoolhouse for Primary Care Research (NIHR SPCR) (grant number: RG85520 [NIHR SPCR-2016-S67]). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Wellness. The Marie Curie Pattern to Care programme is a service improvement program. This inquiry forms part of the design stage of this programme (grant number: RG87570), which is funded by Marie Curie, the UK's leading charity caring for people living with any terminal illness and their families.

Ethical blessing

The study was canonical by the Hertfordshire Enquiry Ethics Commission (England) (ethical approval number: 11/EE/0491. Approval to view the patients' medical records to identify potential interviewees was granted by the and then National Information Governance Board (ethical approving number: ECC one-5 (M)/2012). All interviewees gave consent to accept part in the study.

Provenance

Freely submitted; externally peer reviewed.

Competing interests

The authors take declared no competing interests.

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• Received October 22, 2018.
• Revision requested December vii, 2018.
• Accepted December 24, 2019.

• © British Journal of General Practice 2019

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