Temporal trends in place of death for end‐of‐life patients: Evidence from Toronto,Canada

Understanding the temporal trends in the place of death among patients in receipt of home‐based palliative care can help direct health policies and planning of health resources. This paper aims to assess the temporal trends in place of death and its determinants over the past decade for patients receiving home‐based palliative care. This paper also examines the impact of early referral to home‐based palliative care services on patient's place of death. Survey data collected in a home‐based end‐of‐life care program in Toronto, Canada from 2005 to 2015 were analysed using a multivariate logistic model. The results suggest that the place of death for patients in receipt of home‐based palliative care has changed over time, with more patients dying at home over 2006–2015 when compared to 2005. Also, early referral to home‐based palliative care services may not increase a patient's likelihood of home death. Understanding the temporal shifts of place of death and the associated factors is essential for effective improvements in home‐based palliative care programs and the development of end‐of‐life care policies.     

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.     

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.     

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.     

The role of healthcare support workers in providing palliative and end‐of‐life care in the community: a systematic literature review

Despite the widespread use of Health Care Support Workers (HCSWs) in providing palliative and end‐of‐life care, there is little information available about their contributions towards supporting patients who want to be cared for at home or to die at home. Between January and April 2011, a systematic review was conducted to address two questions: (i) What particular tasks/roles do HCSWs perform when caring for people at the end of life and their families to comply with their desire to remain at home?; (ii) What are the challenges and supporting factors that influence HCSWs’ ability to provide palliative and end‐of‐life care in the community? Databases searched for relevant articles published between 1990 until April 2011 included CINAHL, EMBASE, PsychINFO, British Nursing Index, Web of Science, Medline and ASSIA. In total, 1695 papers were identified and their titles and abstracts were read. Ten papers met the eligibility criteria of the study. After the methodological quality of the studies was appraised, nine papers were included in the review. Judgements regarding eligibility and quality were undertaken independently by the authors. The findings indicate that HCSWs invest a great deal of their time on emotional and social support as well as on assisting in the provision of personal care. They are also involved in providing care for the dying, respite care for family members and offer domestic support. Although it is important to acknowledge the many positive aspects that HCSWs provide, the findings suggest three challenges in the HCSWs role: emotional attachment, role ambiguity and inadequate training. Support factors such as informal peer grief‐support groups, sense of cohesiveness among HCSWs and task orientation enabled HCSWs to overcome these challenges. To conclude, induction and training programmes, a defined period of preceptorship, appropriate support, supervision and clearly defined role boundaries may be helpful in reducing the challenges identified in HCSWs’ roles.     

The magnitude,share and determinants of unpaid care costs for home‐based palliative care service provision in Toronto,Canada

With increasing emphasis on the provision of home‐based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home‐based unpaid care‐giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home‐based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty‐nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home‐based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care‐giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care‐giving costs were the largest component – $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out‐of‐pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care‐giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home‐based palliative care in future.     

Impacts of care‐giving and sources of support: a comparison of end‐of‐life and non‐end‐of‐life caregivers in Canada

This is the second in a series of papers that deal with care‐giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short‐term, long‐term and end‐of‐life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non‐EOL caregivers (short‐term and long‐term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long‐term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care‐giving experience and the caregiver supports received, while also examining the differences in these across EOL and non‐EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non‐EOL caregivers. The study revealed that with respect to socio‐demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non‐EOL caregivers are experiencing negative impacts from their care‐giving role, comparatively greater supports are needed for EOL caregivers.     

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.     

Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision ‐ a prospective study

The aim of the study was to describe the expectations and experiences of end‐of‐life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed‐method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill‐health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; ‘talking about dying’ and ‘integrating living and dying’. All participants stated that they were committed to providing end‐of‐life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end‐of‐life care, doubts from care home and primary healthcare staff about their capacity to work together when residents’ trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.     

Predictors of caregiver burden across the home‐based palliative care trajectory in Ontario,Canada

Family caregivers of patients enrolled in home‐based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non‐modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home‐based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi‐weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home‐care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non‐linear fashion from study admission to patient death. Increased monthly unpaid care‐giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non‐modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care‐giving demands, thereby potentially allowing for longer patient care in the home setting.     

Task shifting in the provision of home and social care in Ontario,Canada: implications for quality of care

Growing healthcare costs have caused home‐care providers to look for more efficient use of healthcare resources. Task shifting is suggested as a strategy to reduce the costs of delivering home‐care services. Task shifting refers to the delegation or transfer of tasks from regulated healthcare professionals to home‐care workers (HCWs). The purpose of this paper is to explore the impacts of task shifting on the quality of care provided to older adults from the perspectives of home healthcare workers. This qualitative study was completed in collaboration with a large home and community care organisation in Ontario, Canada, in 2010–2011. Using a purposive sampling strategy, semi‐structured telephone interviews were conducted with 46 home healthcare workers including HCWs, home‐care worker supervisors, nurses and therapists. Study participants reported that the most common skills transferred or delegated to HCWs were transfers, simple wound care, exercises, catheterisation, colostomies, compression stockings, G‐tube feeding and continence care. A thematic analysis of the data revealed mixed opinions on the impacts of task shifting on the quality of care. HCWs and their supervisors, more often than nurses and therapists, felt that task shifting improved the quality of care through the provision of more consistent care; the development of trust‐based relationships with clients; and because task shifting reduced the number of care providers entering the client's home. Nurses followed by therapists, as well as some supervisors and HCWs, expressed concerns that task shifting might compromise the quality of care because HCWs lacked the knowledge, training and education necessary for more complex tasks, and that scheduling problems might leave clients with inconsistent care once tasks are delegated or transferred. Policy implications for regulating bodies, employers, unions and educators are discussed.     

A longitudinal study of end‐of‐life preferences of terminally‐ill people who live alone

As a home death seems to be the perceived ideal, terminally ill people who live alone are at a disadvantage in terms of their place of care and death and little is known about their end‐of‐life preferences. This study aimed at eliciting patient preferences for their place of care and death longitudinally at two points during their illness trajectory, and reporting on the extent they were able to achieve their place of choice or congruence between preferred and actual place of death. A questionnaire was administered by a researcher in the patients' homes during two visits, 6–12 weeks apart depending on patient prognosis. Forty‐three patients of Silver Chain Hospice Care Service in Western Australia participated during 2009–2010. The results indicated that preferences were in favour of either a home or hospice death, with more preferring home as a place of death rather than a place of care. However, overall congruence between preferred and actual place of death was between 53% and 41% dependent on whether it was based on first or second visit preferences respectively. This is the first longitudinal study to elicit the end‐of‐life preferences of terminally ill people who live alone. As home may not be the preferred location for dying for many patients (nearly half of the patients in this study), ability to die in the place of choice needs to be looked at as a possible indicator of meeting patient needs or as a quality measure in end‐of‐life care.     

Utilisation of home‐based physician,nurse and personal support worker services within a palliative care programme in Ontario,Canada: trends over 2005–2015

With health system restructuring in Canada and a general preference by care recipients and their families to receive palliative care at home, attention to home‐based palliative care continues to increase. A multidisciplinary team of health professionals is the most common delivery model for home‐based palliative care in Canada. However, little is known about the changing temporal trends in the propensity and intensity of home‐based palliative care. The purpose of this study was to assess the propensity to use home‐based palliative care services, and once used, the intensity of that use for three main service categories: physician visits, nurse visits and care by personal support workers (PSWs) over the last decade. Three prospective cohort data sets were used to track changes in service use over the period 2005 to 2015. Service use for each category was assessed using a two‐part model, and a Heckit regression was performed to assess the presence of selectivity bias. Service propensity was modelled using multivariate logistic regression analysis and service intensity was modelled using log‐transformed ordinary least squares regression analysis. Both the propensity and intensity to use home‐based physician visits and PSWs increased over the last decade, while service propensity and the intensity of nurse visits decreased. Meanwhile, there was a general tendency for service propensity and intensity to increase as the end of life approached. These findings demonstrate temporal changes towards increased use of home‐based palliative care, and a shift to substitute care away from nursing to less expensive forms of care, specifically PSWs. These findings may provide a general idea of the types of services that are used more intensely and require more resources from multidisciplinary teams, as increased use of home‐based palliative care has placed dramatic pressures on the budgets of local home and community care organisations.     

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.     

Shared care: the barriers encountered by community-based palliative care teams in Ontario, Canada

To meet the complex needs of patients requiring palliative care and to deliver holistic end-of-life care to patients and their families, an interprofessional team approach is recommended. Expert palliative care teams work to improve the quality of life of patients and families through pain and symptom management, and psychosocial spiritual and bereavement support. By establishing shared care models in the community setting, teams support primary healthcare providers such as family physicians and community nurses who often have little exposure to palliative care in their training. As a result, palliative care teams strive to improve not only the end-of-life experience of patients and families, but also the palliative care capacity of primary healthcare providers. The aim of this qualitative study was to explore the views and experiences of community-based palliative care team members and key-informants about the barriers involved using a shared care model to provide care in the community. A thematic analysis approach was used to analyse interviews with five community-based palliative care teams and six key-informants, which took place between December 2010 and March 2011. Using the 3-I framework, this study explores the impacts of Institution-related barriers (i.e. the healthcare system), Interest-related barriers (i.e. motivations of stakeholders) and Idea-related barriers (i.e. values of stakeholders and information/research), on community-based palliative care teams in Ontario, Canada. On the basis of the perspective of team members and key-informants, it is suggested that palliative care teams experience sociopolitical barriers in an effort to establish shared care in the community setting. It is important to examine the barriers encountered by palliative care teams to address how to better develop and sustain them in the community.