Hospice or home? Expectations of end‐of‐life care among white and Chinese older people in the UK

This paper presents findings from two linked studies of white (n = 77) and Chinese (n = 92) older adults living in the UK, which sought their views about end-of-life care. We focus particularly on experiences and expectations in relation to the provision of end-of-life care at home and in hospices. White elders perceived hospices in idealised terms which resonate with a 'revivalist' discourse of the 'good death'. In marked comparison, for those Chinese elders who had heard of them, hospices were regarded as repositories of 'inauspicious' care in which opportunities for achieving an appropriate or good death were limited. They instead expressed preference for the medicalised environment of the hospital. Among both groups these different preferences for instututional death seemed to be related to shared concerns about the demands on the family that may flow from having to manage pain, suffering and the dying body within the domestic space. These concerns, which appeared to be based on largely practical considerations among the white elders, were expressed by Chinese elders as beliefs about 'contamination' of the domestic home (and, by implication, of the family) by the dying and dead body.     

What role do Death Doulas play in end‐of‐life care? A systematic review

Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been working with women during pregnancy and after birth for many years, and we are now seeing a new role, that of a Death Doula emerging in the end‐of‐life care space. How Death Doulas work within health and social care systems is not understood and we conducted a systematic review to explore the published literature to explore the role and potential implications for models of care delivery. Following the PRISMA recommendations, we searched the literature in January 2018 via bibliographic databases and the grey literature without search date parameters to capture all published literature. We looked for articles that describe the role/work of a death doula or a death midwife in the context of end‐of‐life care, or death and dying. Our search retrieved 162 unique records of which five papers were included. We analysed the papers in relation to relationship to health service, funding source, number and demand for services, training, licensing and ongoing support, and tasks undertaken. Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of “an eldest daughter” or to a role that has similarities to specialist palliative care nurses. Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight.     

What are the priorities for developing culturally appropriate palliative and end‐of‐life care for older people? The views of healthcare staff working in New Zealand

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end‐of‐life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, Pacific Island and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide ‘hands‐on’ care. The role of family in decision‐making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in ‘hands‐on’ palliative care and decision‐making requires care staff to relinquish their role as ‘expert provider’. Counter to the prioritisation of autonomy in Western health‐care, collective decision‐making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end‐of‐life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision.     

Does informal care impact utilisation of home‐based formal care services among end‐of‐life patients? A decade of evidence from Ontario,Canada

Understanding how informal care impacts formal care utilisation for home‐based end‐of‐life patients is an important policy‐ and practice‐relevant question. This paper aims to assess the relationship between informal and formal home care among home‐based end‐of‐life patients and how this relationship has changed over the last decade and over the end‐of‐life trajectory. We focus on informal care provided by family members or friends, and three types of home‐based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home‐based end‐of‐life care programme in Ontario, Canada from 2005 to 2016, we build a two‐part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home‐based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home‐based end‐of‐life patients. Decision‐makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.     

Whither trial‐based economic evaluation for health care decision making?

The randomised controlled trial (RCT) has developed a central role in applied cost-effectiveness studies in health care as the vehicle for analysis. This paper considers the role of trial-based economic evaluation in this era of explicit decision making. It is argued that any framework for economic analysis can only be judged insofar as it can inform two key decisions and be consistent with the objectives of a health care system subject to its resource constraints. The two decisions are, firstly, whether to adopt a health technology given existing evidence and, secondly, an assessment of whether more evidence is required to support this decision in the future. It is argued that a framework of economic analysis is needed which can estimate costs and effects, based on all the available evidence, relating to the full range of possible alternative interventions and clinical strategies, over an appropriate time horizon and for specific patient groups. It must also enable the accumulated evidence to be synthesised in an explicit and transparent way in order to fully represent the decision uncertainty. These requirements suggest that, in most circumstances, the use of a single RCT as a vehicle for economic analysis will be an inadequate and partial basis for decision making. It is argued that RCT evidence, with or without economic content, should be viewed as simply one of the sources of evidence, which must be placed in a broader framework of evidence synthesis and decision analysis.     

Non‐conscious bias in medical decision making: what can be done to reduce it?

CONTEXT: Non-conscious stereotyping and prejudice contribute to racial and ethnic disparities in health care. Contemporary training in cultural competence is insufficient to reduce these problems because even educated, culturally sensitive, egalitarian individuals can activate and use their biases without being aware they are doing so. However, these problems can be reduced by workshops and learning modules that focus on the psychology of non-conscious bias. THE PSYCHOLOGY OF NON-CONSCIOUS BIAS: Research in social psychology shows that over time stereotypes and prejudices become invisible to those who rely on them. Automatic categorisation of an individual as a member of a social group can unconsciously trigger the thoughts (stereotypes) and feelings (prejudices) associated with that group, even if these reactions are explicitly denied and rejected. This implies that, when activated, implicit negative attitudes and stereotypes shape how medical professionals evaluate and interact with minority group patients. This creates differential diagnosis and treatment, makes minority group patients uncomfortable and discourages them from seeking or complying with treatment. PITFALLS IN CULTURAL COMPETENCE TRAINING: Cultural competence training involves teaching students to use race and ethnicity to diagnose and treat minority group patients, but to avoid stereotyping them by over-generalising cultural knowledge to individuals. However, the Culturally and Linguistically Appropriate Services (CLAS) standards do not specify how these goals should be accomplished and psychological research shows that common approaches like stereotype suppression are ineffective for reducing non-conscious bias. To effectively address bias in health care, training in cultural competence should incorporate research on the psychology of non-conscious stereotyping and prejudice. TRAINING IN IMPLICIT BIAS ENHANCES CULTURAL COMPETENCE: Workshops or other learning modules that help medical professionals learn about non-conscious processes can provide them with skills that reduce bias when they interact with minority group patients. Examples of such skills in action include automatically activating egalitarian goals, looking for common identities and counter-stereotypical information, and taking the perspective of the minority group patient.     

Are patient decision aids the best way to improve clinical decision making? Report of the IPDAS Symposium.

This article reports on the International Patient Decision Aid Standards Symposium held in 2006 at the annual meeting of the Society for Medical Decision Making in Cambridge, Massachusetts. The symposium featured a debate regarding the proposition that "decision aids are the best way to improve clinical decision making.' The formal debate addressed the theoretical problem of the appropriate gold standard for an improved decision, efficacy of decision aids, and prospects for implementation. Audience comments and questions focused on both theory and practice: the often unacknowledged roots of decision aids in expected utility theory and the practical problems of limited patient decision aid implementation in health care. The participants' vote on the proposition was approximately half for and half against.     

What constitutes evidence in hospital new drug decision making?

In National Health Service hospitals in the UK the introduction of new drugs is controlled by a local Drug and Therapeutics Committee (DTC), which is expected to apply the principles of evidence-based medicine (EBM). In the light of growing expenditure on drugs, there is interest in how the decisions are made that lead to the local acceptance or rejection of a new drug. In this study the DTCs of two general hospitals were observed, tape-recorded and analysed to determine what was considered as evidence and how it was used in decision making. Evidence, as constituted by DTC members, was issues that affected the decision-making process and included: clinical trial data, cost, pre-existing prescribing of the drug, pharmaceutical company activities, decisions of other DTCs, patient demand, clinician excitement, and personality of the applicant. Debate usually started with a discussion of the scientific evidence, then the cost would be considered. Often this evidence was either inadequate or insufficient enough for a locally implementable decision and further types of evidence would be brought in to try and estimate the likely impact of adopting the new drug. EBM, while used in decision making, was supplemented by local knowledge, although decisions were accounted for in the language of scientific rationality. Both abstract scientific rationality and the local rationality of practical healthcare provision were present in the decisions of the DTCs on the adoption, or otherwise, of new drugs into local formularies and healthcare. We suggest the coming together of local and abstract in local decision-making needs to be taken into account when formulating policy and providing decision support.     

Use of health technology assessment in decision making: coresponsibility of users and producers?

OBJECTIVES: Health technology assessment (HTA) is a policy-oriented form of research designed to inform decision-makers on the introduction, use, and dissemination of health technology. Whereas research on knowledge transfer has focused on knowledge producers, little attention has been given to the user's perspective. This study examines how health-care provider, administrator, and patient associations across Canada use HTA reports and the limitations they encounter when accessing and using scientific knowledge. METHODS: This study draws from semistructured interviews (n=42) conducted with three types of user, located in British Columbia, Alberta, Saskatchewan, Ontario, and Quebec. Applying well-established conceptual categories in knowledge utilization research, our qualitative analyses sought to define more precisely how HTA is used by interviewees as well as the most significant barriers they encounter. RESULTS: The vast majority of users recognize the usefulness and credibility of HTA reports. Of interest, the way they use HTA takes different forms. Although administrators and health-care providers are in a better position than patient associations to act directly on HTA messages--making an instrumental use of HTA--we also found conceptual and symbolic uses across all groups. Our results also indicate that significant organizational, scientific, and material limitations hinder the use of scientific evidence. Overcoming such barriers requires a greater commitment from both HTA producers and users. CONCLUSIONS: This study argues that, to ensure better uptake of HTA, it should become a shared responsibility between HTA producers and various types of user.