Interprofessional relationships and communication in primary palliative care: impact of the Gold Standards Framework.

BACKGROUND: High quality end-of-life care in the community is achieved with effective multidisciplinary teamwork, interprofessional communication between GPs and district nurses, and early referral of patients to district nurses. These aspects of palliative care are highlighted in the Gold Standards Framework, a programme recently established in UK primary care. AIM: To investigate the extent to which the framework influences interprofessional relationships and communication, and to compare GPs' and nurses' experiences. DESIGN OF STUDY: Qualitative interview case study. SETTING: Fifteen participating practices from three primary care trusts in England. METHOD: Thirty-eight semi-structured interviews were undertaken with GPs, district nurses, Macmillan nurses, and framework facilitators. RESULTS: Adoption of the framework often resulted in earlier referral of palliative care patients to district nurses. Multidisciplinary team meetings enabled communication for sharing knowledge, discussing management problems, and keeping colleagues informed; however, arranging and maintaining such meetings was often problematic. Nurses particularly valued formal meetings while GPs generally preferred informal ad hoc dialogue. GPs largely maintained control of the mode of multidisciplinary working. The best functioning teams used a mixture of formal and informal meetings with a relatively non-hierarchical working style. CONCLUSION: Implementing the framework enabled processes of communication associated with high quality palliative care in general practice, but there was marked variation in how this worked in individual teams. In general, hierarchical doctor-nurse relationships persisted.     

Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review

Background

The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers

Aim

To explore factors that support partnership working between specialist and generalist palliative care providers.

Design

Systematic review.

Method

A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011.

Results

Of the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care.

Conclusion

Multiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.     

Relationship style between GPs and community mental health teams affects referral rates.

BACKGROUND: Community mental health teams (CMHTs) are the established model for supporting patients with serious mental illness in the community. However, up to 25% of those with psychotic disorders are managed solely by primary care teams. Effective management depends upon locally negotiated referral and shared care arrangements between CMHTs and primary care. AIM: To examine whether the style of working relationship between general practices and CMHTs affects the numbers and types of referrals from general practices to CMHTs, taking into account population and practice factors and provision of other mental health services which may influence referral rates. DESIGN OF STUDY: Cross-sectional study. SETTING: All 161 general practices in East London and the City Health Authority. METHOD: Questionnaire survey to all general practices to identify style of relationship. Collection of routinely available referral data to all statutory mental health services over a two-year period. Main outcome measures were number and types of referrals from general practices to CMHTs. RESULTS: The average annual referral rate to the eleven CMHTs in east London is 10 per 1000 adult population annually. The teams show a sixfold variation in rates of referral from all sources. Where good working relationships (a consultation-liaison style) exist between CMHTs and general practice, there are greater numbers of referrals requiring both long and short-term work by CMHTs. Two-stage multivariate models explained 47% of the referral variation between practices. Where primary care-based psychologists work with practices there are greater numbers of CMHT referrals, but less use of psychiatric services. CONCLUSION: Shifting to a consultation-liaison relationship should increase rates of referral of patients with serious mental illness, including those who can most benefit from the skills of CMHTs. Increasing the provision of primary care-based psychology might improve practice use of mental health services, reducing avoidable outpatient psychiatric referrals.     

General practitioners' use and experiences of palliative care services: a survey in south east England

Background  

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.     

Hospital based palliative care in sub-Saharan Africa; a six month review from Malawi

Background

Clinical depression is highly prevalent yet under-detected and under-treated in palliative care settings and is associated with a number of adverse medical and psychological outcomes for patients and their family members. This article presents a study protocol to evaluate a training intervention for non-physician palliative care staff to improve the recognition of depression and provide support for depressed patients and their family members. Details of the hypotheses and expected outcomes, study design, training program development and evaluation measures are described.

Methods and Design

A randomised controlled trial will be implemented across two palliative care services to evaluate the "Training program for professional carers to recognise and manage depression in palliative care settings". Pre-, post- and three-month follow-up data will be collected to assess: the impact of the training on the knowledge, attitudes, self-efficacy and perceived barriers of palliative care staff when working with depression; referral rates for depression; and changes to staff practices. Quantitative and qualitative methods, in the form of self-report questionnaires and interviews with staff and family members, will be used to evaluate the effectiveness of the intervention.

Discussion

This study will determine the effectiveness of an intervention that aims to respond to the urgent need for innovative programs to target depression in the palliative care setting. The expected outcome of this study is the validation of an evidence-based training program to improve staff recognition and appropriate referrals for depression, as well as improve psychosocial support for depressed patients and their family members.

Trial Registration

Australia and New Zealand Clinical Trials Register (ANZCTR): ACTRN12610000183088     

Providing palliative care in primary care: how satisfied are GPs and district nurses with current out-of-hours arrangements?

The complex needs of palliative care patients require an informed, expert, and swift response from out-of-hours general medical services, particularly if hospital admission is to be avoided. Few general practitioners (GPs) reported routinely handing over information on their palliative care patients, particularly to GP co-operatives. District nurses and inner-city GPs were least satisfied with aspects of out-of-hours care. Most responders wanted 24-hour availability of specialist palliative care. This indicates a need to develop and evaluate out-of-hours palliative care procedures and protocols, particularly for GP co-operatives, and to improve inter-agency collaboration.     

Advance care planning for cancer patients in primary care: a feasibility study

Background

Advance care planning is being promoted as a central component of end-of-life policies in many developed countries, but there is concern that professionals find its implementation challenging.

Aim

To assess the feasibility of implementing advance care planning in UK primary care.

Design of study

Mixed methods evaluation of a pilot educational intervention.

Setting

Four general practices in south-east Scotland.

Method

Interviews with 20 GPs and eight community nurses before and after a practice-based workshop; this was followed by telephone interviews with nine other GPs with a special interest in palliative care from across the UK.

Results

End-of-life care planning for patients typically starts as an urgent response to clear evidence of a short prognosis, and aims to achieve a ‘good death’. Findings suggest that there were multiple barriers to earlier planning: prognostic uncertainty; limited collaboration with secondary care; a desire to maintain hope; and resistance to any kind of ‘tick-box’ approach. Following the workshop, participants'' knowledge and skills were enhanced but there was little evidence of more proactive planning. GPs from other parts of the UK described confusion over terminology and were concerned about the difficulties of implementing inflexible, policy-driven care.

Conclusion

A clear divide was found between UK policy directives and delivery of end-of-life care in the community that educational interventions targeting primary care professionals are unlikely to address. Advance care planning has the potential to promote autonomy and shared decision making about end-of-life care, but this will require a significant shift in attitudes.     

Impact of Specialist Home-Based Palliative Care Services in a Tertiary Oncology Set Up: A Prospective Non-Randomized Observational Study

Background:

Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission.

Materials and Methods:

Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters.

Results:

Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P < 0.005). 83.2% patients received out of hours care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes.

Conclusion:

Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction.     

Are specialist mental health services being targeted on the most needy patients? The effects of setting up special services in general practice.

BACKGROUND: Around 25% of patients with psychoses lose contact with specialist psychiatric services, despite the government's policy to focus the efforts of community teams on this group. AIM: To identify patient and practice factors associated with continuing contact and loss of contact with specialist services. METHOD: Cross-sectional comparison was made of patients in and out of specialist contact, through detailed interviews with 102 patients among 26 south west London practices. Associations were sought between contact with specialist services and patient factors (illness severity, social functioning, quality of life, needs for care, and satisfaction with general practitioner [GP] services) and practice factors (size, location, fundholding status, training status, and the presence of mental health professionals on site). RESULTS: Thirty-one (30%) patients were currently out of specialist contact. No significant differences were found between those in and out of contact on any measures of diagnosis or psychiatric history. Those in contact had significantly more symptoms, poorer social functioning, poorer quality of life, and more needs for care. The proportion out of contact was significantly higher in two practices that had employed their own mental health professionals to provides services on site for severe mental illnesses. Two factors remained significant predictors of contact in a logistic regression model: whether or not the patient's practice offered a special service on site, and greater patient needs for care. CONCLUSIONS: Secondary mental health services are being targeted towards the more needy patients. The provision of special services in practices can shift care further away from secondary care while still meeting patients' needs.     

Palliative care in primary care: a study to determine whether patients and professionals agree on symptoms

BACKGROUND: Difficulties in managing symptoms of palliative care patients at home have been identified, yet there has been no investigation of agreement on symptom assessment in primary care. Lack of agreement between patients' and primary care professionals' symptom assessments may be contributing to difficulties in symptom control. AIM: To investigate agreement on symptom assessments between patients at home and GPs and district nurses. DESIGN OF STUDY: Prospective, self-completed, structured symptom assessments. SETTING: Routine contacts with adult palliative care patients estimated to be in their last year of life. METHOD: Patient and professional symptom assessments were obtained using CAMPAS-R, a comprehensive and reliable measure validated for palliative care in the community. Prevalence of reported symptoms was calculated in patient-professional pairs. Intraclass correlation techniques (ICCs) and percentage agreement were used to determine how well symptom assessments of patients and professionals agreed. RESULTS: Anxiety and depression were significantly more likely to be reported by professionals, and GPs over-identified nausea, vomiting and constipation. Professionals assessed emotional symptoms as more severe than patients. Agreement on scoring of physical symptoms was better, although this was at least partially due to agreement on absence of symptoms. Unlike previous reports, pain scores recorded by doctors in this study, were not significantly different from patients. CONCLUSION: This quick and easy to complete assessment tool, CAMPAS-R, has potential for monitoring quality of palliative care symptom control at home.     

Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study

Background

Coordination of care for individuals with advanced progressive conditions is frequently poor.

Aim

To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life.

Design and setting

A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service.

Method

Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed.

Results

Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators.

Conclusion

Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.     

A qualitative study exploring variations in GPs' out-of-hours referrals to hospital.

BACKGROUND: There is evidence of significant variations in hospital referral rates for GPs working in out-of-hours care. AIMS: To explain why there are marked variations in hospital referral rates for GPs working in out-of-hours care. DESIGN OF STUDY: In depth, face-to-face interviews with a purposive sample of GPs with different out-of-hours referral rates. SETTING: Bristol, UK. METHOD: GPs were selected according to their rate of out-of-hours hospital referral. They were classified as high, medium, or low referrers. Five interviews were carried out with GPs from each of the three categories. RESULTS: High referring GPs are typically cautious and believe it is better to admit if in doubt. They express anxiety about the consequences of a decision not to admit, both for the patient and for themselves. They hold negative attitudes towards alternatives to hospital admission. Low referrers were more confident about their decisions and less often worried afterwards. Low referrers were positive about alternatives to hospital admission and described themselves as able to resist pressures from family or carers to have someone admitted. Low referrers also see hospitals as places to be avoided and viewed their goal as preventing an admission. CONCLUSION: Educational programmes need to be developed to improve GPs' judgements of their competences and to build appropriate levels of confidence.     

Physicians' ratings of their knowledge, attitudes, and end-of-life-care practices.

PURPOSE: Health care institutions are examining ways to improve physicians' skills in the delivery of end-of-life (EOL) care. Experts have suggested that influencing physicians' knowledge and attitudes concerning EOL care can influence subsequent EOL practices, including hospice use for appropriate patients; yet few studies have examined empirically the influence of physicians' knowledge and attitudes on such practices. The authors assessed the influences of self-rated knowledge and attitudes on physicians' discussions and referrals for hospice care. METHOD: In 1998 and 1999 the authors conducted a cross-sectional study of physicians affiliated with six randomly selected community hospitals in Connecticut with more than 200 licensed medical and surgical beds. Physicians completed a self-administered questionnaire (response rate 52.4%) that assessed self-rated knowledge of terminal care and hospice, a set of attitudinal items, and practices related to hospice discussion and referrals, as well as standard sociodemographic data. Bivariate and multivariate analyses were conducted. RESULTS: Self-rated knowledge was significantly associated with referral practices in unadjusted analyses (unadjusted odds ratio [OR]: 0.70; 95% confidence interval [CI]: 0.52, 0.95), although this association was attenuated in adjusted analyses by specialty and other physicians' characteristics (adjusted OR: 0.80; 95% CI: 0.55, 1.18). Attitudes representing support for hospice practices and philosophy were associated with referral practices in adjusted and unadjusted analyses (adjusted OR:0.52; 95% CI: 0.35, 0.77). CONCLUSIONS: This study demonstrated that self-rated knowledge and attitudes may influence hospice referral. The results support current efforts to develop medical school curricula and continuing education programs that better cover the many aspects of caring for the dying, including hospice use.     

Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals

BACKGROUND: New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important. AIM: To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers. DESIGN OF STUDY: Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews. SETTING: Urban, semi-urban and rural communities in three areas of Scotland. METHOD: Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals. RESULTS: Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services. CONCLUSIONS: Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups.     

Swedish health care professionals' diverse understandings of diabetes care

Knowledge of health care professionals' different understandings of diabetes care is important when preparing such professionals in patient education. For patients to manage illness effectively, the actions of health care professionals are crucial. Patients' understanding of their condition should be taken as the point of departure when creating a learning situation. The professionals' understandings of diabetes care were mapped using a survey including 169 primary care doctors, nurses, assistant nurses and chiropodists in Stockholm, Sweden. The responses were analysed using a phenomenographic approach. Five understandings were identified: the professionals treat the patients, the professionals give information, the professionals focus relation and organisation, the professionals seek the patient's agreement, and the professionals focus the patient's understanding of the situation. Only 20 (12%) of the 169 professional caregivers focused the patient's understanding. Professionals need to develop their understandings of health care and the professional-patient interaction in order to support the patients' learning.     

Palliative care in the community: setting practice guidelines for primary care teams.

BACKGROUND. Previous studies have demonstrated deficiencies in palliative care in the community. One method of translating the results of research into clinical practice, in order to produce more effective health care, is the development of clinical guidelines. Setting standards for such care has been performed by care teams in both hospital and hospice settings but not in primary care. AIM. This study set out to develop guidelines for primary care teams to follow in the provision of palliative care in the community using facilitated case discussions with the members of such teams, as a form of internal audit. METHOD. Five practices were randomly chosen from the family health services authority medical list. Meetings between the facilitators and primary care teams were held over a period of one year. The teams were asked to describe good aspects of care, areas of concern and suggestions to improve these, in recent cases of patient deaths. RESULTS. In total 56 cases were discussed. All practices felt that cohesive teamwork, coordinated management, early involvement of nursing staff and the identification of a key worker were essential for good terminal care. Concerns arose in clinical and administrative areas but the majority were linked to poor communication, either between patient and professionals within the primary care team or between primary and secondary care. All the positive aspects of care, concerns and suggestions were collated by the facilitators into guidelines for teams to refer to from the initial diagnosis of a terminal illness through to the patient's death and care of the relatives afterwards. CONCLUSION. Developing multidisciplinary as opposed to medical guidelines for palliative care allows primary health care teams to create standards that are acceptable to them and stimulates individuals within the teams to accept responsibility for initiating the change necessary for more effective care. The process of facilitating teams to discuss their work allows for recognition and respect of individuals' roles and more importantly provides shared ownership, an important contributory factor in the implementation of guidelines.     

Primary care group commissioning of services: the differing priorities of general practitioners and district nurses for palliative care services.

BACKGROUND: General practitioners (GPs) have become more responsible for budget allocation over the years. The 1997 White Paper has signalled major changes in GPs' roles in commissioning. In general, palliative care is ranked as a high priority, and such services are therefore likely to be early candidates for commissioning. AIM: To examine the different commissioning priorities within the primary health care team (PHCT) by ascertaining the views of GPs and district nurses (DNs) concerning their priorities for the future planning of local palliative care services and the adequacy of services as currently provided. METHOD: A postal questionnaire survey was sent to 167 GP principals and 96 registered DNs in the Cambridge area to ascertain ratings of service development priority and service adequacy, for which written comments were received. RESULTS: Replies were received from 141 (84.4%) GPs and 86 (90%) DNs. Both professional groups agreed that the most important service developments were urgent hospice admission for symptom control or terminal care, and Marie Curie nurses. GPs gave greater priority than DNs to specialist doctor home visits and Macmillan nurses. DNs gave greater priority than GPs to Marie Curie nurses, hospital-at-home, non-cancer patients' urgent hospice admission, day care, and hospice outpatients. For each of the eight services where significant differences were found in perceptions of service adequacy, DNs rated the service to be less adequate than GPs. CONCLUSION: The 1997 White Paper, The New NHS, has indicated that the various forms of GP purchasing are to be replaced by primary care groups (PCGs), in which both GPs and DNs are to be involved in commissioning decisions. For many palliative care services, DNs' views of service adequacy and priorities for future development differ significantly from their GP colleagues; resolution of these differences will need to be attained within PCGs. Both professional groups give high priority to the further development of quick-response clinical services, especially urgent hospice admission and Marie Curie nurses.     

Interprofessional collaboration in primary health care

A study of interprofessional collaboration involving 148 general practitioner and district nurse pairs and 161 general practitioner and health visitor pairs was undertaken in 20 health districts throughout England in 1982-83. Data were collected using personal interviews and a prospective record of referrals and consultations. The ratings of collaboration recorded showed that only 27% of general practitioner-district nurse pairs and 11% of general practitioner-health visitor pairs were working in partial or full collaboration. Structural arrangements such as attachment, the number of general practitioners that community nurses work with, and working from the same building were found to be strongly associated with collaboration.