The end of life and the family: hospice patients’ views on dying as relational

The end of life is a highly emotive and critical period in the life course and families often play a central role during this time. Despite significant sociological work on dying as a relational experience, there has been little exploration of the significance of contemporary family structures and relations. In this article, drawing on the accounts of twenty hospice in‐patients, we explore how the end of life (in this case within an in‐patient unit) is mediated by family dynamics and expectations. Participants’ accounts reveal a range of interpersonal experiences, including: pressures and strains on families and patients; differentiation in family responses to and involvement in the dying process; and tensions between individual and family preferences/desires. We argue that family dynamics strongly influence individual experiences near death and that the focus on individual preferences and the management of disease in palliative care contexts must be augmented with sophisticated and nuanced understandings of the family context. We suggest that sociological conceptual explanations of shifts in social and family life, such as individualisation and ontological security, may also help us better understand the ways families approach and respond to the dying process.     

Growing old and getting sick: maintaining a positive spirit at the end of life

End of life throws up significant mental health challenges. A high proportion of people in the terminal stages of illness experience depressive symptoms. This paper integrates a theory of hierarchy of human needs and empirical research describing experiences of grief and depression in terminal illness, to develop a model of care aimed at reducing depression and suffering. This care attends to physical, psychological, social and spiritual aspects, taking into account the concerns of patients and their families. Professional help can be offered to patients to restore dignity and hope, strengthen their ways of coping, and encourage social connections. To offer this, a well-resourced and coordinated, multidisciplinary and skilled workforce is needed.     

‘Treat them into the grave’: cancer physicians’ attitudes towards the use of high‐cost cancer medicines at the end of life

The prescribing of high‐cost cancer medicines at the end of life has become a focus of criticism, due primarily to concerns about the safety, efficacy and cost‐effectiveness of these medicines in this clinical context. In response to these concerns, a number of interventions have been proposed – frequently focused on improving physician–patient communication at the end of life. Underpinning these strategies is the assumption that the prescribing of high‐cost cancer medicines at the end of life is primarily the result of poor communication on the part of cancer physicians. In this paper, we explore the factors perceived by cancer physicians to be driving the use of high‐cost cancer medicines at the end of life. Drawing on semi‐structured interviews with 16 Australian oncologists and haematologists, we demonstrate that these physicians believe that the use of high‐cost medicines at the end of life is driven by multiple factors – including individual, interpersonal, socio‐cultural and public policy influences. We conclude that these factors, and their interactions, need to be taken into account in the development of public policy and clinical interventions to address the use of high‐cost medicines at the end of life.     

Early clinical exposure to people who are dying: learning to care at the end of life

BACKGROUND: The nature of medical care at the end of life and, in particular, the way in which caring is learned remain problematic for medical educators and the profession. Recent work has indicated that doctors learn to care, in an emotional and intimate way, from people who are dying. METHODS: This paper reports on the development of a programme designed for medical students in their first clinical year who spend time with a person who is dying and their family. The students are required to produce a portfolio assignment that includes a personal reflection of the experience. The findings from a phenomenological study undertaken using these personal reflections are reported. These reflections and comments are interpreted as being embedded in five key themes. RESULTS: The actual encounters differed from the medical students' anticipation of them. Students identified an emotional component to the experience; they explored their own and the patient's understandings of spirituality; they reflected on personal meanings of the encounter and they suggested ways in which they might learn to care more effectively for people who are dying. DISCUSSION: The way in which many of these students approach end-of-life care has been altered through a transformative educational experience that encouraged them to draw on their own experiences and skills. Their learning was facilitated by the writing of accounts and the discussion that each group held with teaching staff at the conclusion of the programme.     

A community‐of‐care: the integration of a palliative approach within residential aged care facilities in Australia

In developed countries, residential aged care facilities (RACFs) are increasingly becoming the place of care and site of death for older people with complex chronic illnesses. Consequently, it is becoming ever more relevant for these facilities to provide appropriate complex, as well as end‐of‐life care for this growing group of people. Evidence‐based guidelines for providing a ‘palliative approach’ were developed and introduced in Australia in 2004, with the emphasis on improving symptom control earlier in the disease trajectory. The aim of the study reported here was to explore the extent to which a palliative approach was being used in the organisation and provision of care for older people with complex needs living in mixed‐level (a combination of low‐ and high‐level care) RACFs. This paper primarily reports on the qualitative findings. Two residential aged care organisations, one in rural New South Wales and the other in Sydney, Australia, participated. Data were collected over a 9‐month period from May until December 2008. Residents, family members and aged care staff were interviewed. Thematic analysis of participant interviews shows that while the various elements of a palliative approach are incorporated into the care of high‐level care residents, the discourse itself is not used. In this paper, we argue for a new conceptualisation of care for people in mixed‐level care facilities: a community‐of‐care, in which a palliative approach is one of several components of the care provided. The findings illuminate aged care staff experiences of providing care to high‐level care residents. They also provide valuable insights into high‐level care residents’ perceptions of their health, care provided and the way in which they foresee their care being provided in future. These findings will be important for informing clinical practice, research and policy in these settings.     

A “separation of worlds”: The support and social networks of family carers of people with dementia at the end of life,and the possible role of the internet

Caring for someone with dementia is one of the most challenging caring roles; however, the demands of the role towards the end of life often mean carers are unable to maintain face‐to‐face support. The aim of this study was to: (a) Explore the experiences of older (over 65 years) family carers of people with dementia of support towards the end of life; (b) Explore with family carers the role of the internet as a support for them at the end of life. Semi‐structured interviews were conducted, with purposive sampling from general practice and research networks to recruit 20 current and former family carers aged 65 and over in England (2016–2017). Interviews were audio‐recorded, transcribed, and analysed using thematic analysis. An overarching theme of the “separation of worlds” (the internal caring world and the outside world of society) was identified, with four sub themes: (a) the support role of relationships and social networks; (b) loss as a consequence of caring; (c) reconstruction of life as a carer; and finally; (d) life within and beyond the computer screen. This study demonstrates the complexity of social support at the end of life for family carers depicted in a model of two worlds. The internet can be seen as a viable approach to help carers maintain existing networks, reconstruct networks they have lost or developing new networks to meet their new needs and circumstances as a carer. Future support interventions should focus on a mixed model of technology and human interaction.     

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.     

Promoting health and well-being at the end of life through client-centered care

Background: Client-centered care is the cornerstone of the hospice and includes family members and significant others as the client unit. There needs to be a conceptual shift away from “medicalizing” patients at the end of life to promoting their health and considering their well-being a shared responsibility. Using the hospice philosophy of client-centered care can inform and expand health-promotion occupational therapy practice, particularly for people at the end of life. Objectives. This paper examines client-centered care at the end of life as that which enables engagement in meaningful occupation and promotes health and well-being until one dies. Methods: Constant comparison and thematic analysis is used for 12 interviews of hospice professionals. One of the themes, client-centered care, is discussed relative to the promotion of health and well-being at the end of life. Results: Client-centered care is deemed to be an important approach at the end of life. Conclusions/significance: It is determined that client-centered care at the end of life is vital to promote quality of life, health, and well-being. Further research is indicated.     

An exploratory study of spiritual care at the end of life

PURPOSE Although spiritual care is a core element of palliative care, it remains unclear how this care is perceived and delivered at the end of life. We explored how clinicians and other health care workers understand and view spiritual care provided to dying patients and their family members.     

Differential impacts of care‐giving across three caregiver groups in Canada: end‐of‐life care,long‐term care and short‐term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care‐giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end‐of‐life (EOL) care (n = 471); (ii) those providing long‐term care (more than 2 years) for someone with a chronic condition or long‐term illness (n = 2722); and (iii) those providing short‐term care (less than 2 years) for someone with a chronic condition or long‐term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care‐giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self‐assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care‐giving, more so than both short‐term and long‐term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care‐giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long‐term or short‐term caregivers. This provides the evidence for the assertion that EOL care‐giving is the most intense type of care‐giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short‐term and long‐term caregivers.     

Advance care planning for Māori,Pacific and Asian people: the views of New Zealand healthcare professionals

Despite the benefits of advance care planning (ACP), international research has suggested that in pluralistic and multicultural societies such as New Zealand, significant differences exist in the uptake of ACP between European‐based populations and other cultural groups [Crawley (2005)]. The purpose of this study was to therefore explore the views of generalist palliative care providers in both the community and hospital settings regarding the barriers to ACP adoption as well as methods to increase knowledge about ACP among Māori, Pacific and Asian cultural groups within New Zealand society. Eleven individual interviews, two joint interviews and three focus groups were conducted with health and social care professionals with a wide range of knowledge and experience in palliative care. Challenges were related to a number of issues based on culture, including family decision‐making style, a need to ‘do everything’ and a reluctance to discuss issues surrounding dying and death. Suggestions to increase the knowledge of ACP included techniques to improve information access and the utilisation of shared norms and values to assist with discussions between Māori, Pacific and Asian health professionals and their patients and families/whānau. Findings indicate a need for more family/whānau‐centred models of ACP, addressed much earlier in the healthcare process and within the community setting.     

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.     

A semiparametric joint model for terminal trend of quality of life and survival in palliative care research

Palliative medicine is an interdisciplinary specialty focusing on improving quality of life (QOL) for patients with serious illness and their families. Palliative care programs are available or under development at over 80% of large US hospitals (300+ beds). Palliative care clinical trials present unique analytic challenges relative to evaluating the palliative care treatment efficacy which is to improve patients’ diminishing QOL as disease progresses towards end of life (EOL). A unique feature of palliative care clinical trials is that patients will experience decreasing QOL during the trial despite potentially beneficial treatment. Often longitudinal QOL and survival data are highly correlated which, in the face of censoring, makes it challenging to properly analyze and interpret terminal QOL trend. To address these issues, we propose a novel semiparametric statistical approach to jointly model the terminal trend of QOL and survival data. There are two sub‐models in our approach: a semiparametric mixed effects model for longitudinal QOL and a Cox model for survival. We use regression splines method to estimate the nonparametric curves and AIC to select knots. We assess the model performance through simulation to establish a novel modeling approach that could be used in future palliative care research trials. Application of our approach in a recently completed palliative care clinical trial is also presented.     

Trends in inpatient treatment intensity among Medicare beneficiaries at the end of life

OBJECTIVE: Although an increasing fraction of Medicare beneficiaries die outside the hospital, the proportion of total Medicare expenditures attributable to care in the last year of life has not dropped. We sought to determine whether disproportionate increases in hospital treatment intensity over time among decedents are responsible for the persistent growth in end-of-life expenditures. DATA SOURCE: The 1985-1999 Medicare Medical Provider Analysis and Review (MedPAR) and Denominator files. STUDY DESIGN: We sampled inpatient claims for 20 percent of all elderly fee-for-service Medicare decedents and 5 percent of all survivors between 1985 and 1999 and calculated age-, race-, and gender-adjusted per-capita inpatient expenditures and rates of intensive care unit (ICU) and intensive procedure use. We used the decedent-to-survivor expenditure ratio to determine whether growth rates among decedents outpaced growth relative to survivors, using the growth rate among survivors to control for secular trends in treatment intensity. Data Collection. The data were collected by the Centers for Medicare and Medicaid Services. PRINCIPAL FINDINGS: Real inpatient expenditures for the Medicare fee-for-service population increased by 60 percent, from $58 billion in 1985 to $90 billion in 1999, one-quarter of which were accrued by decedents. Between 1985 and 1999 the proportion of beneficiaries with one or more intensive care unit (ICU) admission increased from 30.5 percent to 35.0 percent among decedents and from 5.0 percent to 7.1 percent among survivors; those undergoing one or more intensive procedure increased from 20.9 percent to 31.0 percent among decedents and from 5.8 percent to 8.5 percent among survivors. The majority of intensive procedures in the United States were performed in the more numerous survivors, although in 1999 50 percent of feeding tube placements, 60 percent of intubations/tracheostomies, and 75 percent of cardiopulmonary resuscitations were in decedents. The proportion of beneficiaries dying in a hospital decreased from 44.4 percent to 39.3 percent, but the likelihood of being admitted to an ICU or undergoing an intensive procedure during the terminal hospitalization increased from 38.0 percent to 39.8 percent and from 17.8 percent to 30.3 percent, respectively. One in five Medicare beneficiaries who died in the hospital in 1999 received mechanical ventilation during their terminal admission. CONCLUSIONS: Inpatient treatment intensity for all fee-for-service beneficiaries increased between 1985 and 1999 regardless of survivorship status. Absolute changes in per-capita hospital expenditures, ICU admissions, and intensive inpatient procedure use were much higher among decedents. Relative changes were similar except for ICU admissions, which grew faster among survivors. The secular decline in in-hospital deaths has not resulted in decreased per capita utilization of expensive inpatient services in the last year of life. This could imply that net hospital expenditures for the dying might have been even higher over this time period if the shift toward hospice had not occurred.     

LGBT people's knowledge of and preparedness to discuss end‐of‐life care planning options

Despite the devastating impact of HIV/AIDS, end‐of‐life care planning among lesbian, gay, bisexual and transgender (LGBT) communities is relatively under‐researched, especially in Australia. This paper reports findings of a survey of 305 LGBT people living in New South Wales, which examined their knowledge of and attitudes towards end‐of‐life care. The focus of this paper is their preparedness to discuss with healthcare providers any end‐of‐life care plans. The results highlight that while the majority of respondents were aware of three of the four key end‐of‐life care planning options available in New South Wales – enduring powers of attorney, enduring guardians and person responsible (only a minority had heard of advance healthcare directives) – a much smaller number of people had actually taken up these options. Only a minority of respondents were able to identify correctly who had the legal right to make treatment decisions for a person who is unconscious following a car accident. A small proportion of people had discussed end‐of‐life care options with general practitioners or another main healthcare provider, and only in very few cases were these issues raised by the practitioners themselves. Those most likely to not feel comfortable discussing these issues with practitioners included younger people, those not fully open about their sexuality to family members, and transgender people and others who do not define their gender as male or female. The paper highlights the importance of education strategies to raise awareness of the end‐of‐life care planning options among LGBT people, as well as strategies for increasing health providers' preparedness to discuss these issues with LGBT patients.     

Receiving care at home at end of life: characteristics of patients receiving Hospice at Home care

BACKGROUND: Specialist Hospice at Home (HAH) services play an important role in the provision of care for people who choose to die at home. METHODS: A pilot evaluation of a new HAH scheme in East Midlands, UK was carried out between January and December 2003, in which routine data were collected and analysed. RESULTS: In 2003, 155 people received the HAH service. Most patients (83%) were over the age of 60 and had a cancer diagnosis (92%). Almost one-third of patients waited for 2 days or longer to receive care from the HAH scheme. These patients were around three times as likely to be in an inpatient hospice (RR=3.27; 95% CI=1.19-8.95) or an acute hospital (RR=2.85; 95% CI=1.33-6.09) when they were referred. The median length of service use was 4 days. CONCLUSIONS: The HAH service enabled people to die at home in the last days of life. Given the aging population, we would expect the demand for such services to further increase. Shortcomings identified included delay in receiving care for people moving to home from hospices and acute hospitals.