End Of Life Care Policy Research Articles

An exploration of person-centred approach in end-of-life care policies in England and Japan

BackgroundIncreasing evidence has suggested that a person-centred approach (PCA) is beneficial not only for improving care outcomes but also for mitigating the pressure on public health systems. However, policy implementation gaps have prevented the translation of this complex framework into useful practical, ethical and moral stances for end-of-life care (EOLC). This article aims to explore the meaning and implications of person-centredness in EOLC policy discourses.MethodsBy perceiving policy documents as a medium embodied with socio-political and cultural norms, we analysed how PCA in EOLC is constructed within specific socio-cultural contexts and the implications of these contexts on resultant care. Focusing on England and Japan, we conducted a critical policy analysis to examine and compare key policy and legal documents released between 2000 and 2019 in these two post-industrial and socio-culturally distinctive countries.ResultsOur analysis found that the PCA is mobilised in policy discourses primarily through three interconnected dimensions: individual, relational and existential. While acknowledging that both countries have developed varied policy and legal mechanisms to emphasise holistic and integrated care with respect to these three dimensions, we also identified significant gaps in the pol icies both within and between England and Japan. They include ambiguity in defining patients’ best interests, fragmented support for social and family care and the neglect of existential needs.ConclusionsThis cross-cultural analysis has revealed the complex nature of discourses around PCA in English and Japanese EOLC policies, which often concentrate on the multifaceted aspects of experiences as one approaches the end of life. Despite this, we argue that a more holistic construction of PCA is needed in EOLC policies not only in England and Japan but also more broadly, to encapsulate the richness of end-of-life experiences.

Institutional end-of-life care policy for inpatients at a tertiary care centre in India: A way forward to provide a system for a dignified death.

India has a high share in the global burden of chronic terminal illnesses. However, there is a lack of a uniform system in providing better end-of-life care (EOLC) for large patients in their terminal stage of life. Institutional policies can be a good alternative as there is no national level policy for EOLC. This article describes the important aspects of the EOLC policy at one of the tertiary care institutes of India. A 15 member institutional committee including representatives from various departments was formed to develop this institutional policy. This policy document is aimed at helping to recognize the potentially non-beneficial or harmful treatments and provide transparency and accountability of the process of limitation of treatment through proper documentation that closely reflects the Indian legal viewpoint on this matter. Four steps are proposed in this direction: (i) recognition of a potentially non-beneficial or harmful treatment by the physicians, (ii) consensus among all the caregivers on a potentially non-beneficial or harmful treatment and initiation of the best supportive care pathway, (iii) initiation of EOLC pathways, and (iv) symptom management and ongoing supportive care till death. The article also focuses on the step-by-step process of formulation of this institutional policy, so that it can work as a blueprint for other institutions of our country to identify the infrastructural needs and resources and to formulate their own policies.

What is a good death? A critical discourse policy analysis.

The concept of a good death is a motivating factor for end of life care policy; this article examines what English end-of-life care (EOLC) policy defines as a good death. Critical discourse analysis of policy documents and policy-promoting materials published between 2008 and 2016. Policy explicitly defines a good death as having the following attributes: being treated as an individual, with dignity and respect; being without pain and other symptoms; being in familiar surroundings and being in the company of close family and/or friends. Critical discourse analysis of 54 documents found that rather than just being an outcome or event, descriptions of what makes a death good also include many processes. A more extended definition includes: the person receives holistic EOLC; the dying person is treated with dignity and respect; the death is not sudden and unexpected; people are prepared and have ideally done some advance care planning; people are aware that someone is dying and openly discuss this; on knowing the dying person's preferences, all involved are to work towards achieving these; the place of death is important; the person's family are involved and the needs of the bereaved are considered. This analysis indicates the complex nature of the current discourses around good death in EOLC policy, which often focuses on care rather than death. Policy should focus on outlining what quality end-of-life care looks like, rather than assume 'good death' is a suitable outcome statement.

Care homes as hospices for the prevalent form of dying: An analysis of long-term care provision towards the end of life in England.

In the UK and the Westernised countries, most people die aged 80+ from disabling, chronic and degenerative diseases, having spent several years in poor health. There is thus continuity between long-term care (LTC) and end of life care (EOLC) in old age, but this continuity is poorly understood within policy and almost nothing is known about what determines the modality and intensity of LTC provision in old age towards the end of life. Drawing on multinomial logistic regression analysis of the English Longitudinal Study of Ageing (ELSA), this paper evaluates how health and socio-demographic factors affect the relative probability of receiving care through one of five long-term care arrangements (LTCAs) from the time of need at age ≥50 to death; and assesses the consequences this has for the English LTC and EOLC policy and planning. The study reveals that hospices provide end-of-life LTC for cancer diagnoses and adults aged 50-64, while care homes provide open-ended and end-of-life LTC for non-cancer diagnoses, dementia, severe disability, and adults aged 80+. Further, the informal, formal, mixed and care home LTCAs reflect increasing levels of disability and ill-health, and decreasing levels of family support, with differences concerning education and gender. Finally, dementia and Parkinson's disease are the single strongest determinants of high formal LTC provision, and overall high care needs determine high formal LTC provision. Within the English context, the consequences of this are that: 1) Continued reliance on informal family care is not sustainable; 2) To provide free formal LTC to old adults with high care needs is appropriate; and 3) Hospices do not cater for the prevalent form of dying in old age while care homes do, being the de facto hospices for severely disabled, very old (80+) adults with dementia. Yet this is not represented in English EOLC policy and research.

Examining the Gaps and Issues of End-of-Life Care among Older Population through the Lens of Socioecological Model-A Multi-Method Qualitative Study of Hong Kong.

End-of-life (EOL) care for terminal illness and life-limiting conditions is a sector in the health service spectrum that is drawing increased attention. Despite having the world’s longest life expectancy and an ever-escalating demand for long-term care, Hong Kong’s EOL care was underdeveloped. The current study aims to provide a holistic picture of gaps and issues to EOL care in Hong Kong. Data collection was conducted using a multi-method qualitative approach that included focus groups and in-depth interviews with key informants and stakeholders, and longitudinal case studies with patients and families. Deductive thematic analysis was used to examine service gaps in current EOL care through the lens of a socioecological model where gaps and issues in various nested, hierarchical levels of care as well as the relationships between these levels were studied in detail. Using the model, we identified gaps and issues of EOL care among older populations in Hong Kong at the policy, legal, community, institutional, as well as intrapersonal and interpersonal levels. These include but are not limited to a lack of overarching EOL care policy framework, ambiguity in the legal basis for mental incapacity, legislative barriers for advance directives, inadequate capacity, resources, and support in the community to administer EOL care, inadequate knowledge, training, and resources for EOL care in health and social care sectors, inadequate medical-social interface, general reluctance and fear of death and dying, as well as the cultural interpretation of filial piety that may lengthen the suffering of the dying patients. Findings highlight the multi-level gaps and issues of EOL care in a place where western and eastern culture meet, and shed light on how best to design more effective and comprehensive policy interventions that will likely have a more sustainable and instrumental impact on facilitating person-centered EOL care during the end of life.

Uncertain trajectories in old age and implications for families and for palliative and end of life care policy and practice

The provision of high-quality end-of-life care for all is high on national (and international) agendas, but areas of unmet needs identified includes elderly people. This article draws on an autoethnographic account of the dying and death of my father to identify and interrogate disjunctions between end-of-life care policy and commonplace experiences of elderly people who die in a hospital setting. There are significant disjunctions between the “blunt” tools of end-of-life care policy and the everyday experiences of the dying and death of an elderly patient and an urgent need to improve end-of-life care for our oldest generations.

Moral ambiguity in media reports of dying alone

ABSTRACT More older people are living alone in the UK, thereby increasing the prospect of dying alone at home. Lone deaths tend to be regarded as bad deaths, in that they contravene notions of accompaniment and open awareness espoused in UK end of life care policies. We describe a media analysis of dying alone conducted in two phases. First, we revisited a previous media analysis to examine whether news reporting of dying alone has changed. Second, we focussed on a single case study to explore how an account of a lone death unfolded during the days following its discovery. We found that dying alone remains a threat to individual and collective moral reputations. However, we also identified reports in which dying alone was presented as acceptable in some circumstances, and as congruent with aspects of a good death. We suggest that dying alone can be made good through media reporting, reflecting the individual choice and autonomy associated with a good death. There is potential for news media to revise cultural scripts of dying, largely based on the experiences of people dying under medical supervision.

A Population-Based Conceptual Framework for Evaluating the Role of Healthcare Services in Place of Death.

Background: There is a significant geographical disparity in place of death. Socio-demographic and disease-related variables only explain less than a quarter of the variation. Healthcare service factors may account for some (or much) of the remaining variation but their effects have never been systematically evaluated, partly due to the lack of a conceptual framework. This study aims to propose a population-based framework to guide the evaluation of the role of the healthcare service factors in place of death. Methods: Review and synthesis of health service models that include the impact of a service component on either place of death/end of life care outcomes or service access/utilization. Results: The framework conceptualizes the impact of healthcare services on the place of death as starting from the end of life care policies that in turn influence service commissioning and shape healthcare service characteristics, including service type, service capacity—facilities, service location, and workforce, through which service utilization and ultimately place of death are affected. Patient socio-demographics, disease-related variables, family and community support and social care also influence place of death, but they are not the focus of this framework and therefore are grouped as needs and other environmental factors. Information on service utilization, together with the place of death, creates loop feedback to inform policy and service commission. Conclusions: The framework provides guidance for analysis aiming to understand the role of healthcare services in place of death. It aids the interpretation of results in the light of existing knowledge and potentially identifies service factors that can be addressed to improve end of life care.

Healthy End of Life Project (HELP): a progress report on implementing community guidance on public health palliative care initiatives in Australia.

Contemporary end of life care policies propose increasing community capacity by developing sustainable skills, policies, structures, and resources to support members of a community in caring for each other at the end of life. Public health approaches to palliative care provide strategies to bring this about. Practical implementation can however be ineffective, principally due to failures to grasp the systemic nature of public health interventions, or to ensure that programs are managed and owned by community members, not the professionals who may have introduced them. This article outlines a comprehensive community development project that identifies local end of life needs and meets them through the efficient use of community resources. The project is the product of a three-phase enquiry. The first phase, carried out in a local community, examined carers' experiences of home-based dying, the networks that supported them during care, and broader community networks with the potential to extend care. Data were collected through in-depth research interviews, focus groups and consultation with a community research reference group. Findings were key issues to be targeted by a local community development strategy. In the second phase, these local findings were compared with other practice accounts to identify themes common to many contexts. A public health palliative care framework was then used to produce an evidence-informed community development model for end of life care. The third phase involves implementing and evaluating this model in different Australian contexts. A major theme emerging in phase one of the enquiry was the reluctance of carers to ask for, or even accept, offers of help from family, friends and community networks despite their evident need for support while providing end of life care at home. Others' willingness to provide support was thus hindered by uncertainty about what to offer, and concern about infringing on people's privacy. To develop community capacity for providing end of life care, these social norms need to change. Phase two brought public health strategies to bear on the themes identified in phase one to develop the Healthy End of Life Project (HELP), a strengths-based sustainable community development project. This provides evidence-based and research-informed resources that equip communities to work cooperatively with carers, family, friends and neighbors in support of residents wishing to receive end-of-life care in their home or a community setting. Services may initiate use of the framework, and will share their expertise on health and death matters, but communities are the experts to lead implementation in their local area. The third part of the article outlines current initiatives to implement and evaluate HELP in several Australian contexts. The substantive outcome of this enquiry is the 'Healthy End of Life Project (HELP); offering and providing, asking and accepting help'.

Troubling meanings of family and competing moral imperatives in the family lives of young people with a parent who is at the end of life

ABSTRACTThis article draws on a narrative study of young people with a parent who is at the end of life to examine how family lives are troubled by life-limiting parental illness. Young people struggled to reconcile the physical and emotional absence of family members with meanings of ‘family’; the extent to which young people could rely on family to ‘be there’ in these troubling circumstances was of practical, emotional and moral significance. Our discussion is situated in the context of an English end of life care policy predicated on the ideal of a good death as one that takes place at home accompanied by family members. We explore how the shift away from family as a site for nurturing children towards family as a space to care for the dying is experienced by young people, and consider how these competing moral imperatives are negotiated through relational practices of care.

Improving interdepartmental communication following a patient death.

When patients die in emergency departments (EDs), it is important to record information that can be shared with staff in other departments, such as the mortuary and bereavement office. This can be a time-consuming exercise but, if information is omitted, it can increase families' distress by delaying documents such as death certificates. This article describes how a new, tick-box-style death-in-department checklist was introduced in a London hospital adult ED to increase and improve communication and information sharing between the ED, the mortuary and the bereavement office. Audits undertaken before and after the introduction of the checklist show a 75% increase in the recording and sharing of information between relevant departments. The positive effect of the new checklist has led to its introduction in another, associated ED, and it has been incorporated into the trust's end of life care policy.

End-of-life care bonus promoting end-of-life care in nursing homes: An 11-year retrospective longitudinal prefecture-wide study in Japan.

The end-of-life (EOL) care bonus introduced by the Japanese government works as a financial incentive and framework of quality preservation, including advance care planning, for EOL care among nursing home residents. This study aims to clarify the effects of the EOL care bonus in promoting EOL care in nursing homes. A longitudinal observational study using a questionnaire was conducted. We invited 378 nursing homes in Kanagawa prefecture in Japan, a region with a rapidly aging population, to participate in the study. The outcome was the number of residents dying in nursing homes from 2004 to 2014. In a linear mixed model, fixed-effect factors included year established, unit care, regional elderly population rate and hospital beds, adjacent affiliated hospital, full-time physician on site, physician's support during off-time, basic EOL care policy, usage of the EOL care bonus, EOL care conference, and staff experience of EOL care. A total of 237 nursing home facilities responded (62.7%). The linear mixed model showed that the availability of the EOL care bonus (coefficient 3.1, 95 % CI 0.67-5.51, p = 0.012) and years of usage of the EOL care bonus (p < 0.001) were significantly associated with increased numbers of residents dying in nursing homes. Our analysis revealed that the EOL care bonus has the potential to increase the number of residents receiving EOL care in nursing homes over several years. EOL care conferences, physician support for emergency care during off-time, and the presence of an adjacent affiliated hospital may also increase the number of residents receiving EOL care in nursing homes. These results suggest that a government financial incentive may contribute to effective EOL care among nursing home residents in other developed countries with rapidly aging populations.

Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis

End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of patients affected by such conditions die without a formal end of life plan in place. We performed a systematic review to investigate conversations regarding end of life care between healthcare professionals and younger adult patients with life-limiting neuromuscular diseases. The search strategy included terms that focused on death and dying along with other factors that could impact length of life.The review found a very limited body of literature regarding end of life care conversations between young people affected by neuromuscular diseases and health professionals. The views and preferences of patients themselves have not been investigated. There is a shared reluctance of patients, family carers and healthcare professionals to initiate end of life care discussions. There are many factors that need to be investigated further in order to develop a consensus that would allow healthcare professionals to engage patients in end of life care conversations allowing them to face the end of their lives with appropriate plans in place.

Advance care planning in England: Is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People

ObjectivesTo explore whether advance care planning is associated with place of death in England, as well as with sufficiency of support to care for a dying person at home, overall...

A nurse’s phenomenological enquiry into doctors’ end-of-life decision making

This paper is based on an exploratory study conducted in a UK NHS oncology unit, informed by the interpretation of hermeneutic phenomenology by Van Manen and Dahlberg et al. Four senior oncology doctors (trainees) were recruited using homogenous purposive sampling. In-depth interviews were conducted to understand participants’ lived experience of decision making for oncology patients near the end of life. Analysis followed a line-by-line approach, with consideration of the lifeworld existentials identified by ( Van Manen, 1990 ). Common themes were uncovered of empathy, the unacknowledged influence; dichotomy and conflict; and subverted emotion (uncovered through reflection). Findings are discussed in relation to current clinical decision-making theory, particularly cognitive continuum theory, current UK end of life care policy and practice, role socialisation and inter-professional team working.

End-of-life care policy: An integrated care plan for the dying.

Purpose: The purpose was to develop an end-of-life care (EOLC) policy for patients who are dying with an advanced life limiting illness and to develop practical procedural guidelines for limiting inappropriate therapeutic medical interventions and improve the quality of care of the dying within an ethical framework and through a professional and family/patient consensus process. Evidence: The Indian Society of Critical Care Medicine (ISCCM) published its first guidelines on EOLC in 2005 [1] which was later revised in 2012. [2] Since these publications, there has been an exponential increase in empirical information and discussion on the subject. The literature reviewed observational studies, surveys, randomized controlled studies, as well as guidelines and recommendations, for education and quality improvement published across the world. The search terms were: EOLC; do not resuscitate directives; withdrawal and withholding; intensive care; terminal care; medical futility; ethical issues; palliative care; EOLC in India; cultural variations. Indian Association of Palliative Care (IAPC) also recently published its consensus position statement on EOLC policy for the dying. [3] Method: An expert committee of members of the ISCCM and IAPC was formed to make a joint EOLC policy for the dying patients. Proposals from the chair were discussed, debated, and recommendations were formulated through a consensus process. The members extensively reviewed national and international established ethical principles and current procedural practices. This joint EOLC policy has incorporated the sociocultural, ethical, and legal perspectives, while taking into account the needs and situation unique to India.

THE COMMUNITY CARE PATHWAYS AT THE END OF LIFE (CAPE) STUDY- EARLY FINDINGS

BackgroundCurrent NHS End of Life Care policy favours raising the proportion of deaths that occur at home. Currently this only occurs in 21.8% of the total. Although most people would...

End of life care policy for the dying: consensus position statement of Indian association of palliative care.

EXECUTIVE SUMMARYPurpose:To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives.Evidence:A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery.Recommendations:Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death. Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policyProviding a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom controlPalliative care and EOLC to be part of all hospital and community/home based programsStandards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodiesAll health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education.

End-of-life care policy: An integrated care plan for the dying: A Joint Position Statement of the Indian Society of Critical Care Medicine (ISCCM) and the Indian Association of Palliative Care (IAPC).

Purpose:The purpose was to develop an end-of-life care (EOLC) policy for patients who are dying with an advanced life limiting illness and to develop practical procedural guidelines for limiting inappropriate therapeutic medical interventions and improve the quality of care of the dying within an ethical framework and through a professional and family/patient consensus process.Evidence:The Indian Society of Critical Care Medicine (ISCCM) published its first guidelines on EOLC in 2005 [1] which was later revised in 2012.[2] Since these publications, there has been an exponential increase in empirical information and discussion on the subject. The literature reviewed observational studies, surveys, randomized controlled studies, as well as guidelines and recommendations, for education and quality improvement published across the world. The search terms were: EOLC; do not resuscitate directives; withdrawal and withholding; intensive care; terminal care; medical futility; ethical issues; palliative care; EOLC in India; cultural variations. Indian Association of Palliative Care (IAPC) also recently published its consensus position statement on EOLC policy for the dying.[3]Method:An expert committee of members of the ISCCM and IAPC was formed to make a joint EOLC policy for the dying patients. Proposals from the chair were discussed, debated, and recommendations were formulated through a consensus process. The members extensively reviewed national and international established ethical principles and current procedural practices. This joint EOLC policy has incorporated the sociocultural, ethical, and legal perspectives, while taking into account the needs and situation unique to India.

End-of-Life Care Policies and Practices in Pediatric Skilled Nursing Facilities

Although most children with intellectual and developmental disabilities reside in the community, a subset of children with severe intellectual disability and complex medical needs reside in pediatric skilled nursing facilities. These children have elevated mortality with end-of-life care (EOLC) routinely provided. The present study explored policies and practice in such settings by surveying administrators, nursing directors, and medical directors in facilities across the United States. In addition to EOLC policies and practices, staff reported on their understanding of definitions of do-not-resuscitate orders, family involvement in EOLC planning, and the availability of in-service training. The presence of an official EOLC policy was associated with higher ratings of perception of effectiveness among staff. Staff felt more prepared and comfortable providing EOLC when in-service training was provided.