Providing appropriate palliative care for older people is a major task for health care systems worldwide, and up to now it has also been one of the most neglected. Focusing on the German health care system, we sought to explore the attitudes of health professionals regarding their understanding of palliative care for older patients and its implementation.
In a qualitative study design, focus groups were established consisting of general practitioners, geriatricians, palliative care physicians, palliative care nurses and general nurses (a total of 29 participants). The group discussions were recorded, transcribed, coded and analysed using the methodological approach of Qualitative Description.
Deficiencies in teamwork and conflicting role definitions between doctors and nurses and between family practitioners and medical specialists were found to be central problems affecting the provision of appropriate palliative care for older people. It was emphasized that there are great advantages to family doctors playing a leading role, as they usually have the longest contacts to the patients. However, the professional qualifications of family doctors were to some extent criticized. The general practitioners for their part criticized the increasing specialization on the field of palliative care. All groups complained that the German compensation system gives insufficient consideration to the time-consuming care of older patients, and about excessive bureaucracy.
General practitioners are the central health professionals in the delivery of palliative care for older people. They should however be encouraged to involve specialized services such as palliative care teams where necessary. With the German health care reform of 2007, a legal framework has been created that allows for this. As far as its realization is concerned, it must be ensured that the spotlight remains on the needs of the patients and not on policy conflicts and rivalries between health care professionals. Older people might particularly benefit if "talking" medicine and time-consuming care were properly catered for, financially and organizationally, in the health care system.
Specialist palliative care is being increasingly recognised and developed to improve end-of-life care in many developed countries. However, only a small proportion of the total number of patients with incurable, progressive diseases actually has direct contact with specialist palliative care practitioners. Using the German situation as an example, the main purpose of this paper is to argue that the emphasis on specialist palliative care services without a similar encouragement of primary palliative care will deliver a constrained service.
For the vast majority of people with incurable, progressive diseases, good palliative care delivered by General Practitioners and community nurses, with access to specialist support when needed, is the optimal response. In Germany, specialist palliative care in the community was established in the 2007 health care reforms. However actual and potential delivery of palliative care by general practitioners and community based nurses has been sorely neglected. The time-consuming care of palliative patients and their families is currently far from accurately reflected in German, indeed most European primary care payment systems. However, it is not just a question of adequate financial compensation but also of the recognition of the fundamental value of this intense form of holistic family medicine.
It is imperative palliative care carried out by community nurses and general practitioners is better recognised by health professionals, health insurers, government and the scientific community as a central part of the delivery of health care for people in the last phase of life. Health systems should be arranged so that this critical role of general practice and primary care is intentionally fostered. Palliative care carried out by generalists needs an identity at an academic and practical level, developing in concert with specialist palliative care.
Advanced heart failure (HF) is a disease process that carries a high burden of symptoms, suffering, and death. Palliative care can complement traditional care to improve symptom amelioration, patient-caregiver communication, emotional support, and medical decision making. Despite a growing body of evidence supporting the integration of palliative care into the overall care of patients with HF and some recent evidence of increased use, palliative therapies remain underused in the treatment of advanced HF. Review of the literature reveals that although barriers to integrating palliative care are not fully understood, difficult prognostication combined with caregiver inexperience with end-of-life issues specific to advanced HF is likely to contribute. In this review, we have outlined the general need for palliative care in advanced HF, detailed how palliative measures can be integrated into the care of those having this disease, and explored end-of-life issues specific to these patients.
Advanced heart failure; Palliative care; Hospice; End-of-life
In Australia, many people ageing in their own homes are becoming increasingly frail and unwell, approaching the end of life. A palliative approach, which adheres to palliative care principles, is often appropriate. These principles provide a framework for proactive and holistic care in which quality of life and of dying is prioritised, as is support for families. A palliative approach can be delivered by the general practitioner working with the community aged care team, in collaboration with family carers. Support from specialist palliative care services is available if necessary.
The Guidelines for a Palliative Approach for Aged Care in the Community Setting were published by the Australian Government Department of Health and Ageing to inform practice in this area. There are three resource documents. The main document provides practical evidence based guidelines, good practice points, tools, and links to resources. This document is written for general practitioners, nurses, social workers, therapists, pastoral care workers, and other health professionals and responded to needs identified during national consultation. Evidence based guidelines were underpinned by systematic reviews of the research literature. Good practice points were developed from literature reviews and expert opinion. Two ‘plain English’ booklets were developed in a process involving consumer consultation; one is for older people and their families, the other for care workers.
The resources are intended to facilitate home care that acknowledges and plans for the client’s deteriorating functional trajectory and inevitable death. At a time when hospitals and residential aged care facilities are under enormous pressure as the population ages, such a planned approach makes sense for the health system as a whole. The approach also makes sense for older people who wish to die in their own homes. Family needs are recognised and addressed. Unnecessary hospitalisations or residential placements and clinically futile interventions are also minimised.
Evidence-based health care; guidelines; palliative care; aged care; community care
Background: Our research team has undertaken implementation of evidence in the form of practice guideline recommendations for populations in hospital, community, and long-term care settings with diverse provider and patient populations (people with chronic wounds, e.g., pressure and leg ulcers, heart failure, stroke, diabetes, palliative care, cancer, and maternity care). Translating evidence into clinical practice at the point of care is a complex and often overwhelming challenge for the health system as well as for individual practitioners.
Purpose: To ensure that best available evidence is integrated into practice, “local evidence” needs to be generated and this process accomplishes a number of things: it focuses all involved on the “same page,” identifies important facilitating factors as well as barriers, provides empirical support for planning, and in itself is a key aspect of implementation. In doing this work, we developed a roadmap, the Queen’s University Research Roadmap for Knowledge Implementation (QuRKI) that outlines three major phases of linked research and implementation activity: (1) issue identification/clarification; (2) solution building; and (3) implementation, evaluation, and nurturing the change.
In this paper, we describe our practical experience as researchers working at point-of-care and how research can be used to facilitate the implementation of evidence. An exemplar is used to illustrate the fluid interplay of research and implementation activities and present the range of supporting research.
Implications: QuRKI serves as a guide for researchers in the formation of a strategic alliance with the practice community for undertaking evidence-informed reorganization of care. Using this collaborative approach, researchers play an integral role in focusing on, and using evidence during all discussions. We welcome further evaluation of its usefulness in the field.
evidence-based practice; activating knowledge; planned-action framework; engaged scholarship; action-research
According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs) in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer.
A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts.
We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined.
The Netherlands National Trial Register: NTR2815
BACKGROUND: Problems with the provision of palliative care have been reported. Audit is one means of improving care. Earlier audits of primary care palliative care have been initiated by general practitioners (GPs) and are predominantly retrospective record reviews. Widely applicable methods for the audit of primary care palliative care do not exist. AIM: To develop relevant palliative care standards and to devise an audit schedule (the Cambridge palliative audit schedule, CAMPAS) suitable for monitoring palliative care in diverse primary care settings. METHOD: Primary health care team (PHCT) members collaborated at all stages. Reasonable outcomes and acceptable interventions for PHCTs were identified and standards developed. Each standard was constructed to ensure uniform interpretation, and CAMPAS was structured to collect data necessary for determining whether the standards were met. RESULTS: Over 50% of PHCTs (n = 20) in the health district were recruited and trained to use CAMPAS. A total of 876 contacts with 29 patients was recorded by PHCTs using CAMPAS. Considerable inter- and intra-PHCT variation was found in the achievement of the standards. CONCLUSIONS: The favourable participation rate suggests commitment to audit and improvement in patient care. Overall, the standards were reported to be suitable. Although 100% achievement of some standards may be unrealistic, the level of attainment for many suggests that it is possible. CAMPAS has been reported to be a useful structure for recording assessments and monitoring care, as well as a usable audit schedule. As an audit tool, it identified areas in need of improvement and facilitated feed-back to participants. Future audit is required to determine whether improvements in care have been effected.
Integration of palliative care for intensive care unit (ICU) patients is important but often challenging, especially in surgical ICUs (SICUs), in part because many surgeons equate palliative care with terminal care and failure of restorative care. SICU nurses, who are key front-line clinicians, can provide insights into barriers for delivery of optimal palliative care in their setting.
We developed a focus group guide to identify barriers to two key components of palliative care—optimal communication regarding prognosis and optimal end-of-life care—and used the tool to conduct focus groups of nurses providing bedside care in three SICUs at a tertiary care, academic, inner city hospital. Using content analysis technique, responses were organized into thematic domains that were validated by independent observers and a subset of participating nurses.
Four focus groups included a total of 32 SICU nurses. They identified 34 barriers to optimal communication regarding prognosis, which were summarized into four domains: logistics, clinician discomfort with discussing prognosis, inadequate skill and training, and fear of conflict. For optimal end-of-life care, the groups identified 24 barriers in four domains: logistics, inability to acknowledge an end-of-life situation, inadequate skill and training, and cultural differences relating to end-of-life care.
Nurses providing bedside care in SICUs identify barriers in several domains that may impede optimal discussions of prognoses and end-of-life care for patients with surgical critical illness. Consideration of these perceived barriers and the underlying SICU culture is relevant for designing interventions to improve palliative care in this setting.
Palliative care within the community requires well coordinated
multidisciplinary teamworking, involving both primary and secondary care
practitioners. ‘Out-of-hours’ periods are a potentially
problematic time for delivery of high quality care. We report on two national
surveys—one of medical directors of out-of-hours general practitioner
cooperatives, the other of medical directors of specialist palliative care
units. The aim was to describe general practitioners' and specialists'
perspectives on the availability and scope of community nursing and specialist
palliative care services.
The results point to wide variation in service provision within the
community. The two groups differed strikingly in their perceptions, the
general practitioners being much less positive than the specialists about the
availability of specialist advice and admission to specialist units out of
Equitable out-of-hours palliative care services of high quality are
unlikely to be achieved without dialogue between primary and secondary care
based providers, local needs assessment and adequate resourcing.
According to the World Health Organization (WHO) definition, palliative care should be initiated in an early phase and not be restricted to terminal care. In the literature, no validated tools predicting the optimal timing for initiating palliative care have been determined.
The aim of this study was to systematically develop a tool for GPs with which they can identify patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and cancer respectively, who could benefit from proactive palliative care.
A three-step procedure, including a literature review, focus group interviews with input from the multidisciplinary field of palliative healthcare professionals, and a modified Rand Delphi process with GPs.
The three-step procedure was used to develop sets of indicators for the early identification of CHF, COPD, and cancer patients who could benefit from palliative care.
Three comprehensive sets of indicators were developed to support GPs in identifying patients with CHF, COPD, and cancer in need of palliative care. For CHF, seven indicators were found: for example, frequent hospital admissions. For COPD, six indicators were found: such as, Karnofsky score ≤50%. For cancer, eight indicators were found: for example, worse prognosis of the primary tumour.
The RADboud indicators for PAlliative Care Needs (RADPAC) is the first tool developed from a combination of scientific evidence and practice experience that can help GPs in the identification of patients with CHF, COPD, or cancer, in need of palliative care. Applying the RADPAC facilitates the start of proactive palliative care and aims to improve the quality of palliative care in general practice.
early identification; general practice; indicators; palliative care
Australia is a very large country with a relatively small, diverse population. Palliative care is delivered by a range of professionals, from general (family) practitioners and community care nurses to large tertiary referral palliative care services. A national strategy provides a service development framework that informs the provision of these services. The National Palliative Care Program has provided extensive service improvement in the past decade. Challenges to improving the delivery of palliative care center around meeting the requirements of people with nonmalignant life-limiting illnesses; growing the specialist workforce; maintaining the skills of the primary care workforce; and providing palliative care to special populations such as the aged, indigenous Australians, non–English-speaking Australians, and children.
Australia; health policy; health service organization; palliative care; primary care
Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care.
To obtain detailed information on facilitators and barriers for GP–patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills.
Design of study
Qualitative study with focus groups, interviews, and questionnaires.
GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands.
GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers.
Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors' delay and strong demands from patients' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor–patient relationships, while consultants report insufficient clarification of patients' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios.
The study findings suggest that the quality of GP–patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated.
communication; palliative care; physicians, family; physician–patient relationship; qualitative research
The role of the General Practitioner (GP) is central to community palliative care. Good liaison between the different professionals involved in a patient's care is extremely important in palliative care patients. In cases where GPs have previously been dissatisfied with palliative services, this may be seen as a barrier to referral when caring for other patients. The aim of this survey is to investigate the use and previous experiences of GPs of two palliative care services, with particular emphasis on barriers to referral and to explore issues surrounding the GP's role in caring for palliative patients.
Design: Descriptive postal survey of use and experience of palliative care services with particular emphasis on barriers to referral. Setting: One Primary Care Trust (PCT), south London, England, population 298,500. Subjects: 180 GPs in the PCT, which is served by two hospice services (A&B).
An overall questionnaire response rate of 77% (138) was obtained, with 69% (124) used in analysis. Over 90% of GPs were satisfied with the palliative care services over the preceding two years. Two areas of possible improvement emerged; communication and prescribing practices. GPs identified some patients that they had not referred, most commonly when patients or carers were reluctant to accept help, or when other support was deemed sufficient. Over half of the GPs felt there were areas where improvement could be made; with clarification of the rules and responsibilities of the multi disciplinary team being the most common. The majority of GPs were working, and want to work with, the specialist services as part of an extended team. However, a greater number of GPs want to hand over care to the specialist services than are currently doing so.
A large number of GPs were happy with the service provision of the palliative care services in this area. They suggested that 3 out of 4 terminally ill patients needed specialist input. Views of services were largely positive, and reasons for non referral were unrelated to previous experience of the specialist services.
The numbers of people with heart failure is continually rising. Despite continued medical advances that may prolong life, there is no cure. While typical heart failure trajectories include the risk of sudden death, heart failure is typically characterized by periods of stability interrupted by acute exacerbations. The unpredictable nature of this disease and the inability to predict its terminal phase has resulted in few services beyond medical management being offered. Yet, this population has documented unmet needs that extend beyond routine medical care. Palliative care has been proposed as a strategy to meet these needs, however these services are rarely offered. Although palliative care should be implemented early in the disease process, in practice it is tied to end-of-life care. The purpose of this study was to uncover whether the conceptualization of palliative care for heart failure as end-of-life care may inhibit the provision of these services. The meaning of palliative care in heart failure was explored from three perspectives: scientific literature, healthcare providers, and spousal caregivers of patients with heart failure. There is confusion in the literature and by the health care community about the meaning of the term palliative care and what the provision of these services entails. Palliative care was equated to end-of-life care, and as a result, healthcare providers may be reluctant to discuss palliative care with heart failure patients early in the disease trajectory. Most family caregivers have not heard of the term and all would be receptive to an offer of palliative care at some point during the disease trajectory.
To assess experience, knowledge, and opinions of Romanian general practitioners (GPs) on palliative health care in Romania.
A questionnaire survey was performed among 1283 GPs in five districts of Romania in 2004. The data were collected on the GPs’ self-assessed experience in, knowledge of, and opinion on palliative care, entered into a database, and analyzed. The GPs were also asked to indicate if they needed to improve their knowledge about palliative care.
The response rate was 71%. GPs mostly reported having limited experience in providing palliative care, with 24% reporting to have provided palliative care frequently, and 55% reporting to have it provided sometimes. Significant correlations were found between the GPs’ experience in palliative care provision and their age, sex, and place of work. The majority of Romanian GPs reported that their medical knowledge was inadequate for the provision of care to terminal patients at home. Over 80% of GPs agreed to develop palliative care services and to participate in a training program.
GPs in Romania reported to recognize the need for improvement of palliative care delivery in their country. They expressed the need for better knowledge of palliative care and agreed that multidisciplinary teams to provide palliative care at home would be the best form of delivering this type of health care.
Knowledge about the quality and organisation of care to terminally ill cancer patients with a relatives' view in a primary health care setting is limited.
The aim of the study is to analyse experiences and preferences of bereaved relatives to terminally ill cancer patients in a primary care setting to explore barriers and facilitators for delivery of good palliative home care.
Three focus group interviews with fourteen bereaved relatives in Aarhus County, Denmark.
Three main categories of experience were identified: 1) The health professionals' management, where a need to optimize was found. 2) Shared care, which was lacking. 3) The relatives' role, which needs an extra focus.
Relatives experience insufficient palliative care mainly due to organizational and cultural problems among professionals. Palliative care in primary care in general needs improvement and attention should be drawn to the "professionalization" of the relatives and the need to strike a balance between their needs, wishes and resources in end-of-life care and bereavement.
Typically, dementia involves progressive cognitive and functional deterioration, leading to death. A palliative approach recognizes the inevitable health decline, focusing on quality of life. The approach is holistic, proactive, supports the client and the family, and can be provided by the client's usual care team.
In the last months of life, distressing symptoms, support needs, and care transitions may escalate. This project trialed a strategy intended to support a consistent, high quality, palliative approach for people with dementia drawing close to death. The strategy was to implement two communities of practice, drawn primarily from service provider organizations across care sectors, supporting them to address practice change. Communities comprised practitioners and other health professionals with a passionate commitment to dementia palliative care and the capacity to drive practice enhancement within partnering organizations.
Project aims were to document: (i) changes driven by the communities of practice; (ii) changes in staff/practitioner characteristics during the study (knowledge of a palliative approach and dementia; confidence delivering palliative care; views on death and dying, palliative care, and a palliative approach for dementia); (iii) outcomes from perspectives of family carers, care providers, and community of practice members; (iv) the extent to which changes enhanced practice and care continuity; and (v) barriers to and facilitators of successful community of practice implementation.
This action research project was implemented over 14 months in 2010/11 in metropolitan Perth, Western Australia and regional Launceston, Tasmania. Each state based community of practice worked with the researchers to scope existing practice and its outcomes. The research team compiled a report of existing practice recommendations and resources. Findings of these two steps informed community of practice action plans and development of additional resources. Change implementation was recorded and explored in interviews, comparisons being made with practice recommendations. Changes in staff/practitioner characteristics were evaluated using survey data. Findings from semi structured interviews and survey administration established outcomes from perspectives of family carers, care providers, and community of practice members. Consideration of processes and outcomes, across the two state based settings, informed identification of barriers and facilitators. Community of practice reflections also informed study recommendations.
Dementia; Palliative care; Evidence translation; Action research
The heart failure illness trajectory is both complex and unpredictable, which makes providing palliative care services to patients with heart failure a challenge. As a result, although services are needed, few tend to be offered beyond basic medical management. The traditional model of palliative care is typically based on palliative care being considered a system of care delivery most appropriate for patients with a predictable illness/death trajectory, such a terminal cancer. This type of model, which is based on the ability to predict the course of a terminal disease, does not fit the heart failure trajectory. In this paper, we propose a new model of palliative care that conceptualizes palliative care as a philosophy of care that encompasses the unpredictable nature of heart failure.
Palliative Care; Heart Failure; Illness Trajectories; Models
Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made.
To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care.
A generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement.
The co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project.
Problem: Healthcare organisations are expected both to monitor inequalities in access to health services and also to act to improve access and increase equity in service provision.
Design: Locally developed action research projects with an explicit objective of reducing inequalities in access.
Setting: Eight different health care services in the Yorkshire and Humber region, including community based palliative care, general practice asthma care, hospital based cardiology clinics, and termination of pregnancy services.
Key measures for improvement: Changes in service provision, increasing attendance rates in targeted groups.
Strategies for change: Local teams identified the population concerned and appropriate interventions using both published and grey literature. Where change to service provision was achieved, local data were collected to monitor the impact of service change.
Effects of change: A number of evidence based changes to service provision were proposed and implemented with variable success. Service uptake increased in some of the targeted populations.
Lessons learnt: Interventions to improve access must be sensitive to local settings and need both practical and managerial support to succeed. It is particularly difficult to improve access effectively if services are already struggling to meet current demand. Key elements for successful interventions included effective local leadership, identification of an intervention which is both evidence based and locally practicable, and identification of additional resources to support increased activity. A "toolkit" has been developed to support the identification and implementation of appropriate changes.
General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website .
The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166).
Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers).
Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach.
Although chronic heart failure (CHF) has a high mortality rate and symptom burden, and clinical guidance stipulates palliative care intervention, there is a lack of evidence to guide clinical practice for patients approaching the end of life.
(1) To formulate guidance and recommendations for improving end‐of‐life care in CHF; (2) to generate data on patients' and carers' preferences regarding future treatment modalities, and to investigate communication between staff, patients and carers on end‐of‐life issues.
Semistructured qualitative interviews were conducted with 20 patients with CHF (New York Heart Association functional classification III–IV), 11 family carers, 6 palliative care clinicians and 6 cardiology clinicians.
A tertiary hospital in London, UK.
Patients and families reported a wide range of end‐of‐life care preferences. None had discussed these with their clinicians, and none was aware of choices or alternatives in future care modalities, such as adopting a palliative approach. Patients and carers live with fear and anxiety, and are uninformed about the implications of their diagnosis. Cardiac staff confirmed that they rarely raise such issues with patients. Disease‐ and specialism‐specific barriers to improving end‐of‐life care were identified.
The novel, integrated data presented here provide three recommendations for improving care in line with policy directives: sensitive provision of information and discussion of end‐of‐life issues with patients and families; mutual education of cardiology and palliative care staff; and mutually agreed palliative care referral criteria and care pathways for patients with CHF.
Improving palliative care is a public health priority. However, little is known about the views of public health experts regarding the state of palliative care in Germany and the challenges facing it. The main aim of this pilot study was to gather information on the views of internationally experienced public health experts with regard to selected palliative care issues, with the focus on Germany, and to compare their views with those of specialist palliative care experts. Qualitative guided interviews were performed with ten experts (five from palliative care, five from public health). The interviews were analysed using qualitative content analysis.
Older people and non-cancer patients were identified as target groups with a particular priority for palliative care. By contrast to the public health experts, the palliative care experts emphasized the need for rehabilitative measures for palliative patients and the possibilities of providing these. Significant barriers to the further establishment of palliative care were seen, amongst other things, in the powerful lobby groups and the federalism of the German health system.
The findings suggest that from the experts' point of view (1) palliative care should focus on the needs of older people particularly in view of the demographic changes; (2) more attention should be paid to rehabilitative measures in palliative care; (3) rivalries among different stakeholders regarding their responsibilities and the allocation of financial resources have to be overcome in Germany.
Background. This qualitative study aims to gain insight into the perceptions and experiences of older patients with regard to sharing health care decisions with their general practitioners. Patients and Methods. Thirty-four general practice patients (≥70 years) were asked about their preferences and experiences concerning shared decision making with their doctors using qualitative semistructured interviews. All interviews were analysed according to principles of content analysis. The resulting categories were then arranged into a classification grid to develop a typology of preferences for participating in decision-making processes. Results. Older patients generally preferred to make decisions concerning everyday life rather than medical decisions, which they preferred to leave to their doctors. We characterised eight different patient types based on four interdependent positions (self-determination, adherence, information seeking, and trust). Experiences of a good doctor-patient relationship were associated with trust, reliance on the doctor for information and decision making, and adherence. Conclusion. Owing to the varied patient decision-making types, it is not easy for doctors to anticipate the desired level of patient involvement. However, the decision matter and the self-determination of patients provide good starting points in preparing the ground for shared decision making. A good relationship with the doctor facilitates satisfying decision-making experiences.
Out-of-hours general practitioners (GPs) cover the community over a significant proportion of a given week, and palliative care patients are seen as a priority. Little is known about how well these GPs feel supported in their line of work and whether communication exchanges work well for the proportion of their patients who have palliative care needs. For this study, GPs who provide out-of-hours care were interviewed in order to explore factors that they identified as detrimental or beneficial for good communication between themselves, patients, relatives and other professionals, specifically to palliative care encounters.
Nine GPs were interviewed using face-to-face semi-structured interviews. All nine GPs worked regular out-of-hours sessions. Data from transcripts was analysed using Interpretative Phenomenological Analysis.
A predominant theme expressed by GPs related to constraints within the system provided by the local private company owned out-of-hours provider. A strong feeling of 'being alone out there' emerged, with some GPs more willing to call for help than others, and others expressing their concern at access to pharmacies and medication being very inconsistent.
Out-of-hours GPs felt left alone on occasion, unable to access daytime services and not knowing who to call for advice. Information hand-over systems from in-hours to out-of-hours with regard to palliative care were felt to be inadequate. Out-of-hours doctors interviewed felt left out of the care loop; handover sheets from specialist palliative care providers were a rarity.
Out-of-hours services need to be mindful of the needs of the GPs they employ, in particular relating to the palliative care they provide in this setting. Other healthcare professionals should aim to keep their local out-of-hours service informed about palliative care patients they may be called to see.