A survey of end-of-life care in care homes: issues of definition and practice

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers' understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents' conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home.     

The last 3 months of life: care, transitions and the place of death of older people

Many older people die in hospitals, whereas research indicates that they would prefer to die at home. Little is known about the factors associated with place of death. The aim of the present study was to investigate the care received by older people in the last 3 months of their life, the transitions in care and the predictors of place of death. In this population-based study, interviews were held with 270 proxy respondents to obtain data on 342 deceased participants (79% response rate) in the Longitudinal Aging Study Amsterdam. In the last 3 months of life, the utilisation of formal care increased. Half of the community-dwelling older people and their families were confronted with transitions to institutional care, in most cases to hospitals. Women relied less often on informal care only, and were more dependent than men on institutional care. For people who only received informal care, the odds of dying in a hospital were 3.68 times the odds for those who received a combination of formal and informal home care. The chance of dying in a hospital was also related to the geographical region. The authors argue that future research is needed into the association that they found in the present study, i.e. that decedents who received both formal and informal care were more likely to die at home. In view of the differences found in geographical region in relation to place of death, further investigation of regional differences in the availability and accessibility of care is indicated.     

Societal costs of home and hospital end‐of‐life care for palliative care patients in Ontario,Canada

In Canada, health system restructuring has led to a greater focus on home‐based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end‐of‐life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end‐of‐life care associated with two places of death (hospital and home) using a prospective cohort design in a home‐based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out‐of‐pocket, informal care‐giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care‐giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end‐of‐life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end‐of‐life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end‐of‐life care, resulted in changes in the distribution of costs borne by different stakeholders.     

The role of identity in the experiences of dementia care workers from a minority ethnic background during the COVID-19 pandemic: A qualitative study

Background

Care home staff working during the COVID-19 pandemic experienced higher levels of stress and increased workloads. People from diverse ethnic backgrounds were disproportionately affected by the COVID-19 pandemic. This study explored the identity experiences of care home staff from diverse ethnic backgrounds in the context of working during the COVID-19 pandemic.

Methods

Fourteen semistructured interviews were conducted between May 2021 and April 2022 with ethnic minority care home staff in England, who worked during the pandemic. Participants were recruited using convenience and theoretical sampling. Interviews were conducted via telephone or online platforms. A social constructivist grounded theory methodology was utilised in analysing the data.

Findings

Participants described five key processes which facilitated or hindered the impact that their experiences had on their identity: dealing with uncertainty and transitioning into a COVID-19 world; difficult emotions; experiences of discrimination and racism; the response from the care home and societal systems; and the personal vs collective responsibility. When participants' physical and psychological needs went unmet by support structures within the care home and/or society, they experienced a sense of injustice, lack of control and being unvalued or discriminated against by others.

Conclusions

This study highlights the importance of recognising the unique needs of staff from diverse ethnic backgrounds working in care homes and adapting working practices to improve impact on identity, job satisfaction and staff retention.

Patient and Public Involvement

One care home worker was involved in developing the topic guide and helping to interpret the findings.     

Moral problems in palliative care practice: A qualitative study

Clarifying and analysing moral problems arising in the practice of palliative care was the objective of participatory observations in five palliative care settings. The results of these observations will be described in this contribution. The moral problems palliative caregivers have to deal with in their daily routines will be explained by comparison with the findings of a previously performed literature study. The specific differences in the manifestation of moral problems in the different palliative care settings will be highlighted as well.This revised version was published online in October 2005 with corrections to the Cover Date.     

Family‐centred care: a qualitative study of Chinese and South Asian immigrant parents' experiences of care in paediatric oncology

Background Over the past two decades, there is increasing emphasis being placed upon providing family‐centred care (FCC) in paediatric oncology settings. However, there is a lack of knowledge of FCC in paediatric oncology from the perspectives of immigrant parents. The purpose of this paper is to describe Chinese and South Asian immigrant parents' experiences of FCC in paediatric oncology settings in Canada. Methods This study adopted a constructivist grounded theory approach. Fifty first generation Chinese and South Asian parents of children with cancer who were at least 6 months post‐diagnosis were recruited from six Canadian paediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi, and transcribed into English. Analysis involved line‐by‐line, focused and theoretical coding, and the use of the constant comparison method. Results Findings indicated that overall parents were highly satisfied with the care and services they received, and their experiences were reflective of the key elements of FCC. However, there were some areas of concern identified by participants: parents not perceiving themselves as a member of the medical team; inconsistency in the quality and co‐ordination of services among healthcare providers; disrespectful and mechanical manner of a few healthcare providers; and parents' discomfort with healthcare providers communicating sensitive health‐related information directly with their child. Conclusions In order to successfully provide family‐centred services to immigrant parents of children with cancer, better communication of the elements of FCC between healthcare staff and families is needed to negotiate a clear role for the parents as partners of the healthcare team. Moreover, a better understanding of how family relationships are structured in immigrant families will assist healthcare providers to balance the best interests of the child with that of the family as a unit.     

Expenditures on health care in the last year of life.

18-26% of public expenditure on health care is devoted to care of patients in their last year of life. 60% of this expenditure is on patients in somatic nursing homes. The figures do not tell directly whether too much or too little money in Norwegian health care is spent on people in the end stage of life. In order to answer this question, one must look at the quality of terminal care and assess the share of patients having a reasonable benefit of the care they receive.     

Physicians' psychosocial barriers to different modes of withdrawal of life support in critical care: A qualitative study in Japan

Despite a number of guidelines issued in Anglo-American countries over the past few decades for forgoing treatment stating that there is no ethically relevant difference between withholding and withdrawing life-sustaining treatments (LST), it is recognized that many healthcare professionals in Japan as well as some of their western counterparts do not agree with this statement. This research was conducted to investigate the barriers that prevent physicians from withdrawing specific LST in critical care settings, focusing mainly on the modes of withdrawal of LST, in what the authors believe was the first study of its kind anywhere in the world. In 2006–2007, in-depth, face-to-face, semistructured interviews were conducted with 35 physicians working at emergency and critical care facilities across Japan. We elicited their experiences, attitudes, and perceptions regarding withdrawal of mechanical ventilation and other LST. The process of data analysis followed the grounded theory approach. We found that the psychosocial resistance of physicians to withdrawal of artificial devices varied according to the modes of withdrawal, showing a strong resistance to withdrawal of mechanical ventilation that requires physicians to halt the treatment when continuation of its mechanical operation is possible. However, there was little resistance to the withdrawal of percutaneous cardiopulmonary support and artificial liver support when their continuation was mechanically or physiologically impossible. The physicians shared a desire for a “soft landing” of the patient, that is, a slow and gradual death without drastic and immediate changes, which serves the psychosocial needs of the people surrounding the patient. For that purpose, vasopressors were often withheld and withdrawn. The findings suggest what the Japanese physicians avoid is not what they call a life-shortening act but an act that would not lead to a soft landing, or a slow death that looks ‘natural’ in the eyes of those surrounding the patient. The purpose of constructing such a final scene is believed to fulfill the psychosocial needs of the patient's family and the physicians, who emphasize on how death feels to those surrounding the patient. Unless withdrawing LST would lead to a soft landing, Japanese clinicians, who recognize that the results of withdrawing LST affect not only the patient but those around the patient, are likely to feel that there is an ethically relevant difference between withholding and withdrawing LST.     

Doing involvement: A qualitative study exploring the ‘work’ of involvement enacted by older people and their carers during transition from hospital to home

ContextBeing involved in one''s care is prioritised within UK healthcare policy to improve care quality and safety. However, research suggests that many older people struggle with this.DesignWe present focused ethnographic research exploring older peoples'' involvement in healthcare from hospital to home.ResultsWe propose that being involved in care is a dynamic form of labour, which we call ‘involvement work’ (IW). In hospital, many patients ‘entrust’ IW to others; indeed, when desired, maintaining control, or being actively involved, was challenging. Patient and professionals'' expectations, alongside hospital processes, promoted delegation; staff frequently did IW on patients'' behalf. Many people wanted to resume IW postdischarge, but struggled because they were out of practice.DiscussionPreference and capacity for involvement was dynamic, fluctuating over time, according to context and resource accessibility. The challenges of resuming IW were frequently underestimated by patients and care providers, increasing dependence on others post‐discharge and negatively affecting peoples'' sense and experience of (in)dependence.ConclusionsA balance needs to be struck between respecting peoples'' desire/capacity for non‐involvement in hospital while recognising that ‘delegating’ IW can be detrimental. Increasing involvement will require patient and staff roles to be reframed, though this must be done acknowledging the limits of patient desire, capability,and resources. Hospital work should be (re)organised to maximise involvement where possible and desired.Patient/Public ContributionOur Patient and Public Involvement and Engagement Panel contributed to research design, especially developing interview guides and patient‐facing documentation. Patients were key participants within the study; it is their experiences represented.     

Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study

BackgroundCultural values are crucial to the practice and impact of patient and public involvement (PPI) in research.ObjectiveTo understand different PPI cultures among research teams and the impacts of PPI associated with each culture type.DesignA participatory action research design.Setting and participantsThe setting was 10 palliative care research projects. Seventeen patients and members of the public and 31 researchers participated.InterventionA programme consisting of four components: (1) training and coaching of patients and the public to prepare them for participation in research, (2) tailored coaching of the 10 research teams over 12‐18 months, (3) a community of practice, and (4) a qualitative evaluation.ResultsWe identified three cultures types: relationship cultures, task cultures, and control cultures. We identified four areas of impact: the project aim became more relevant to the target audience, methodological reliability increased, the research products were better able to reach the public, and the awareness increased, associated with behavioural changes, among researchers regarding PPI.DiscussionA relationship culture appears to be long‐lasting due to impacting the behaviours of the researchers during future projects. Different cultural types require different types of patients and researcher participants, assigned to different tasks.ConclusionsFurther research remains necessary to investigate the support required by researchers to enable relationship‐ and task‐oriented PPI cultures.Patient or public contributionPatient advocates and representatives contributed to our research team throughout the entire research process, as well as within the 10 implementation projects.     

Dying at home in rural residential aged care: A mixed‐methods study in the Snowy Monaro region,Australia

Residential aged care (RAC) is a significant provider of end‐of‐life care for people aged 65 years and older. Rural residents perceive themselves as different to their urban counterparts. Most studies describing place of death (PoD) in RAC are quantitative and reflect an urban voice. Using a mixed‐methods design, this paper examines the PoD of 80 RAC residents (15 short‐stay residents who died in RAC during respite or during an attempted step‐down transition from hospital to home, and 65 permanent residents), within the rural Snowy Monaro region, Australia, who died between 1 February 2015 and 31 May 2016. Death data were collected from local funeral directors, RAC facilities, one multi‐purpose heath service and obituary notices in the local media. The outcome variable was PoD: RAC, local hospital or out‐of‐region tertiary hospital. For the permanent RAC residents, the outcome of interest was dying in RAC or dying in hospital. Cross tabulations by PoD and key demographic data were performed. Pearson Chi squared tests and exact p‐values were used to determine if any of the independent variables were associated with PoD. Using an ethnographic approach, data were collected from 12 face‐to‐face, open‐ended interviews with four RAC residents, with a life expectancy of ≤6 months, and six family caregivers. Interviews were audio‐recorded, transcribed and analysed thematically. Fifty‐one (78.5%) of the permanent residents died in RAC; 21.5% died in hospital. Home was the initial preferred POD for most interviewed participants; most eventually accepted the transfer to RAC. Long‐term residents considered RAC to be their “home”—a familiar place, and an important part of their rural community. The participants did not consider a transfer to hospital to be necessary for end‐of‐life care. Further work is required to explore further the perspectives of rural RAC residents and their families, and if transfers to hospital are avoidable.     

Performance of care for end‐of‐life cancer patients in Tuscany: The interplay between place of care,aggressive treatments,opioids, and place of death. A retrospective cohort study

Supportive and palliative care at the end of life (EOL) is a core component of health systems. Providing care at the EOL may require the interaction of several care providers working in different settings including nursing homes, home care, hospices, and hospitals. This work aims to (a) provide evidence on the performance of EOL care for cancer patients across healthcare organizations, with a focus on the place of care, aggressive treatments, opioids, and the place of death and (b) analyze factors associated with dying in hospital. A population‐based retrospective study was performed using administrative data from Tuscany region (Italy). Thirteen thousand sixty‐six cancer patients who died in 2016 were considered. There is a marked variability in EOL care within regional areas, with the multilevel logistic regression highlighting a greater likelihood of dying in hospital for patients who were admitted to intensive care units or previously hospitalized. There is a lower probability of dying in acute care setting for patients assisted in hospices and in both hospital and hospices/home care and for patients treated with opioids. This intraregional variation highlights the need to improve EOL planning and rethink the delivery of supportive/palliative care. Further investigations on the preferences of patients may lead to more understanding.     

Determinants of primary and non-primary informal care-giving to home-based palliative care cancer care-recipients in Ontario,Canada

Informal care plays an important role in the care of care-recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non-primary caregivers. Moreover, little is known about the provision of informal care in the context of home-based palliative care. The purpose of this study was to examine the provision of primary and non-primary informal care-giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non-primary caregivers are those other than the primary caregiver who provide care-giving. A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home-based palliative care cancer care-recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care-giving. Regression analysis with instrumental variables was used. About 90% of primary caregivers were spouses and children, while 53% of non-primary caregivers were others rather than spouses and children. The average number of hours of primary and non-primary informal care-giving reported for each 2-week interview period was 83 hr and 23 hr, respectively. Hours of home-based personal support workers decreased the intensity of primary care-giving and the likelihood of non-primary care-giving. Home-based nursing visits increased the propensity of non-primary care-giving. The primary care-giving and non-primary care-giving complement each other. Care recipients living alone received less primary informal care-giving. Employed primary caregivers decreased their provision of primary care-giving, but promoted the involvement of non-primary care-giving. Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non-primary care-giving, to balance the work of the primary caregivers and their care-giving responsibility, and to effectively arrange the formal home-based palliative care services.     

Difficulties in navigating the intersection of generalist and specialist palliative care services: A cross-sectional study of bereaved family's experiences of care at home in New Zealand

A generalist–specialist model of palliative care is well established as a framework for the provision of community care in resource-rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross-sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers—Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi-square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty-six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision-making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that “generalists” are willing and able to play a key role in palliative care provision needs to be further challenged.