Moral problems in palliative care practice: A qualitative study

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

Comparing processes of stroke care in high- and low-mortality hospitals in the West Midlands, UK.

OBJECTIVE: There are wide variations in hospital-specific mortality for stroke. The aim of this study was to investigate whether there were differences in quality of care when a group of hospitals with high standardized mortality ratios (SMRs) in nationally published league tables were compared with a group with low SMRs. DESIGN: Retrospective case note review of a random sample of patients from hospitals with high and low mortality according to published league tables. SETTING: Eight hospitals in the West Midlands, UK. PARTICIPANTS: 702 patients admitted to hospital with acute stroke during the year 2000-2001. MAIN OUTCOME MEASURES: Process measures derived from the Intercollegiate Stroke Audit Package. RESULTS: Crude 30 day mortality was 25% (99/402) in 'top' ranking hospitals and 38% (113/300) in 'bottom' ranking hospitals (P < 0.001). Bottom hospitals performed significantly (P < 0.001) less well on four out of seven indicators of process of care relating to the patients' first 24 hours in hospital-assessment of eye movements and visual fields, screening for swallowing disorders and sensory testing. However, analysis at the individual hospital level showed that this was largely due to poor performance in one hospital with high mortality. If this outlier was omitted, there was little relationship between process of care and SMR. No significant differences were found in care provided after 24 hours. Nevertheless even in 'top' ranking hospitals only 47% of stroke patients had at least 50% of their hospital stay in a stroke/rehabilitation unit and only 40% were on aspirin within 48 hours. CONCLUSIONS: Our results show that there is scope for improving the quality of stroke care irrespective of where a hospital ranks in terms of mortality. The lack of association between SMR and quality of care as assessed by process measures casts some doubt over the value of ranking hospitals in terms of stroke SMR.     

Assessing structure, process and outcome in palliative day care: a pilot study for a multicentre trial

Palliative day care is an expanding service which remains under-researched. Study designs need to be developed to evaluate the costs and outcomes of the service in ways which are meaningful to patients, clinicians and policy-makers. At the same time, these must be open to the same criteria for rigour and reliability as techniques used elsewhere in health and social service evaluation. To this end, a developmental stage of exploratory research was undertaken at the start of a major multicentre trial of palliative day care to meet two clear aims: to understand more about the structure and processes of palliative day care, and to identify ways in which service outcomes could be evaluated and measured. In-depth observations at five palliative day care centres were undertaken across one health region. This provided a better understanding of the models, outcomes and processes of palliative day care in five different environments. Centres represented the spectrum of medical and social care models and findings were analysed using an organisational systems approach. The findings showed that, despite the lack of a national strategic approach to developing the service, the centres all provided a core set of services which were broadly similar. However, differences in philosophy, ownership, and organisation affected how the services were provided and may have an impact on the costs of the service. The study has provided a more in-depth understanding of palliative day care services in order to design an effective research strategy for evaluating a service which crosses the boundaries of health and social care.     

Development of a set of strategy-based system-level cancer care performance indicators in Ontario, Canada.

OBJECTIVES: To develop a set of scientifically sound and managerially useful system-level cancer care performance indicators for public reporting in Ontario, Canada. IMPLEMENTATION: Using a modified Delphi panel method, comprising a systematic literature review and multiple rounds of structured feedback from 34 experts, the Cancer Quality Council of Ontario developed a set of quality indicators spanning cancer prevention through to end-of-life care. To be useful to decision-makers and providers, indicator selection criteria included a clear focus on the cancer system, relevance to a diversity of cancer providers, a strong link to the mission and strategic objectives of the cancer system, clear directionality of indicator results, presence of targets and/or benchmarks, feasibility of populating the indicator, and credibility of the measure as an indicator of quality. To ensure that the selected indicators would measure progress over time against specific and widely accepted goals, we created a strategy map based on the five strategic objectives of the Ontario cancer system: (i) to improve the measurement and reporting of cancer quality, (ii) to increase the use of evidence and innovation in decision-making, (iii) to improve access to cancer services and reduce waiting times, (iv) to increase efficiency across the system, (v) to reduce the burden of cancer. An analysis of the mean indicator ratings by experts, and the strategy mapping exercise resulted in the identification of 36 indicators deemed suitable for routine performance measurement of the Ontario cancer system. LESSONS LEARNED: The resulting instrument incorporates a credible evidence basis for performance measurement aligned to the five strategic goals for the Ontario cancer system. It represents the integrating of a management culture, focused on the implementation of a new strategic direction for the cancer system, with the underlying evidence-based culture of clinicians.     

Quality in early education and care: What do we mean?

"Quality early childhood education and care” has become a slogan. In New Zealand we do not seem to have a clear understanding of what quality in early education and care is even though it is our mission to secure and enhance it. Considerable overseas research on the characteristics of quality in early childhood centres has been carried out, yet there is no simple answer to the question of what quality is. Quality may be taken to mean either the character of a centre or its excellence; Quality may be viewed at either the programme level or the service level. No single measure is possible because various approaches to defining and assessing quality may be used. In this paper it is suggested that we need to know what is important from the perspectives of staff, parents, different cultural groups, and child development research findings if we are to promote the quality of early education and care in New Zealand.     

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

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

Understanding and improving communication and decision-making in palliative care for Turkish and Moroccan immigrants: a multiperspective study

Objective. The aim of this study is to explore how communication and decision-making in palliative care among Turkish and Moroccan patients is influenced by different styles of care management between Turkish and Moroccan families and Dutch professional care providers. Problems as well as solutions for these problems are highlighted. Design. A qualitative design was used, totally interviewing 83 people (6 patients, 30 relatives and 47 care providers) covering 33 cases of incurable cancer patients receiving palliative care. Data were analysed thematically and contextually. Results. The analysis reveals that problems in decision-making are partly related to differences in ethnic-cultural views on 'good care' at the end of life: Dutch palliative care providers prefer to focus on quality of life rather than on prolonging life, while Turkish and Moroccan families tend to insist on cure. Another barrier is caused by conflicting views on the role of the 'care management group': Dutch care providers see the patient as their primary discussion partner, while in Turkish and Moroccan families, relatives play a major part in the communication and decision-making. Moreover, the family's insistence on cure often leads to the inclusion of additional care providers in communication, thus complicating joint decision-making. Conclusion. Care providers need to understand that for Turkish and Moroccan patients, decision-making is seldom a matter of one-to-one communication. Next to acknowledging these patients' different cultural backgrounds, they must also recognise that the families of these patients often function as care management groups, with an 'equal' say in communication and decision-making. In addition, professionals should optimise communication within their own professional care management group.     

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.     

Health promotion in palliative care: the case for conceptual congruence

This article provides a critical review of the literature relevant to the conceptual foundations of health promoting palliative care. It explores the separate emergence and evolution of palliative care and health promotion as distinct concerns in health care, and reviews the early considerations given to their potential convergence. Finally, this article examines the proposal of health promoting palliative care as a specific approach to providing end of life care through a social model of palliative care. Research is needed to explore the impact for communities, health care services and policy when such an approach is implemented within palliative care organisations.     

Joint modeling quality of life and survival using a terminal decline model in palliative care studies

Palliative medicine is a relatively new specialty that focuses on preventing and relieving the suffering of patients facing life‐threatening illness. For cancer patients, clinical trials have been carried out to compare concurrent palliative care with usual cancer care in terms of longitudinal measurements of quality of life (QOL) until death, and overall survival is usually treated as a secondary endpoint. It is known that QOL of patients with advanced cancer decreases as death approaches; however, in previous clinical trials, this association has generally not been taken into account when inferences about the effect of an intervention on QOL or survival have been made. We developed a new joint modeling approach, a terminal decline model, to study the trajectory of repeated measurements and survival in a recently completed palliative care study. This approach takes the association of survival and QOL into account by modeling QOL retrospectively from death. For those patients whose death times are censored, marginal likelihood is used to incorporate them into the analysis. Our approach has two submodels: a piecewise linear random intercept model with serial correlation and measurement error for the retrospective trajectory of QOL and a piecewise exponential model for the survival distribution. Maximum likelihood estimators of the parameters are obtained by maximizing the closed‐form expression of log‐likelihood function. An explicit expression of quality‐adjusted life years can also be derived from our approach. We present a detailed data analysis of our previously reported palliative care randomized clinical trial. Copyright © 2012 John Wiley & Sons, Ltd.     

Patient perspectives on quality of care for depression and anxiety in primary health care teams: A qualitative study

BackgroundWidespread policy reforms in Canada, the United States and elsewhere over the last two decades strengthened team models of primary care by bringing together family physicians and nurse practitioners with a range of mental health and other interdisciplinary providers. Understanding how patients with depression and anxiety experience newer team‐based models of care delivery is essential to explore whether the intended impact of these reforms is achieved, identify gaps that remain and provide direction on strengthening the quality of mental health care.ObjectiveThe main study objective was to understand patients’ perspectives on the quality of care that they received for anxiety and depression in primary care teams.MethodsThis was a qualitative study, informed by constructivist grounded theory. We conducted focus groups and individual interviews with primary care patients about their experiences with mental health care. Focus groups and individual interviews were recorded and transcribed verbatim. Grounded theory guided an inductive analysis of the data.ResultsForty patients participated in the study: 31 participated in one of four focus groups, and nine completed an individual interview. Participants in our study described their experiences with mental health care across four themes: accessibility, technical care, trusting relationships and meeting diverse needs.ConclusionGreater attention by policymakers is needed to strengthen integrated collaborative practices in primary care so that patients have similar access to mental health services across different primary care practices, and smoother continuity of care across sectors. The research team is comprised of individuals with lived experience of mental health who have participated in all aspects of the research process.