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.     

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.     

Informal carers--the role of general practitioners and district nurses.

Six million informal carers provide support for aged and disabled people in the United Kingdom. Government policies suggest that primary care teams are the main support for carers. This postal survey of 300 general practitioners (GPs) and 272 district nurses (DNs) aimed to determine current practice and views on their role in supporting informal carers. In practice, GPs and DNs lack time, resources, and training to provide support, and see themselves in a reactive role only.     

Supporting South Asian carers and those they care for: the role of the primary health care team.

BACKGROUND: Demographic and socioeconomic changes have increased policy interest in informal carers. However, despite the multicultural nature of British society, most research in this field has been in majority communities. AIM: To explore the role of the primary health care team (PHCT) in supporting carers from British South Asian communities. DESIGN OF STUDY: Qualitative study. SETTING: Four South Asian communities in Leicestershire and West Yorkshire. METHODS: Focus groups and in-depth interviews were used to assess male and female carers, supported by a literature review. RESULTS: Failure to recognise carers' needs, gaps in service provision, and communication and language issues compromised carers' ability to care. While some carers were positive about the PHCT role, the main weaknesses concerned poor consultation, PHCT attitudes towards carers, and access to appropriate services. CONCLUSION: South Asian carers' experiences largely parallel those of others, but there are some issues that are distinct, namely, language and communication barriers, culturally inappropriate services, and implicit or explicit racism. The multi-ethnic nature of Great Britain requires that professional practice enhances the ability of minority ethnic communities to provide informal care. The findings underline the important role of the PHCT in ensuring that carers' needs are taken seriously and that appropriate services reach them.     

Palliative care provided by GPs: the carer''s viewpoint.

As most terminal and palliative care is in the community, general practitioners (GPs) have an important role to play. This study presents bereaved carers' views of the palliative care provided by GPs. It suggests that symptom control may not be optimal.     

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.     

Facilitators and barriers for GP�Cpatient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants

Background

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.

Aim

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.

Setting

GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands.

Method

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.

Results

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.

Conclusion

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.     

Palliative care at home: an audit of cancer deaths in Grampian region.

BACKGROUND: Ninety per cent of the last year of life of cancer patients is spent at home. Some studies have suggested that care in this setting is often suboptimal. Information on the standard of palliative care delivered at home by general practitioners (GPs) and their teams is limited, and clarification of the problems faced is needed. AIM: To audit the home-based palliative care of patients dying of cancer. METHOD: Matched postal questionnaires were sent to the GPs and nurses of 1086 successive patients dying of cancer in whatever setting in the Grampian region of Scotland some six weeks after the death to establish the professionals' perception of symptom control, communication problems, use of services, and information given to patients and relatives. RESULTS: Response rates were 88.8% for GPs (964 out of 1086) and 87.1% for nurses (325 out of 375 that were passed on to nurses). Two-thirds of patients received palliative care at home. Pain was poorly controlled in 15.7%, and poor control of other symptoms ranged from 13.8% (nausea and vomiting) to 21% (depression and dyspnoea). Communication difficulties were present in 93.7% of cases, although only 5.2% of these were of a major nature. District nurses were involved in 76.7% of cases and Macmillan nurses in 28.0%. Twenty-six per cent of referrals to district nurses were assessed as being late in the course of the illness. Patients were fully informed about the diagnosis in 66.3% of cases and about the prognosis in 55.4%. General practitioners were more likely to report the presence of communication problems between themselves and the patient (when compared with nurses: 43.9% versus 28.0%), more likely to report that patients were 'not at all informed' about self-help groups (57.5% versus 36.3%), and were less likely to report the involvement of occupational therapists (21.8% versus 39.7%). CONCLUSIONS: Levels of reporting of poor symptom control by professionals was much lower than levels reported by relatives in other studies, but there was no difference between the reporting of GPs and nurses. However, a number of areas were identified where care could be enhanced by improved teamwork and further education and training in symptom control, as well as in communication, use of services, and information provision.     

How common is medical training in palliative care? A postal survey of general practitioners.

BACKGROUND: General practitioners (GPs) have a central role in palliative care, yet research continues to reveal room for improvement in symptom control at home. There is a need to evaluate how well-prepared GPs are for this task of caring for the dying at home. AIM: To evaluate the training in palliative care GPs have received throughout their careers. METHOD: Postal survey of 450 randomly selected East Anglian GP principals, investigating training in five areas of palliative care (pain control, control of other symptoms, communication skills, bereavement care, use of syringe driver), as clinical students, junior hospital doctors, GP trainees (registrars), and GP principals. RESULTS: A response rate of 86.7% was obtained. While GPs were clinical students, training was uncommon, (32% reported no training in pain control, and 58% no training in bereavement care), although there has been a significant increase in more recent years. Training as junior doctors was particularly uncommon (over 70% report no training in communication skills or bereavement care); there was some evidence of an increase in more recent years. During the GP trainee year, training was much more common. For GP principals, most areas had been covered, although over 20% reported no training in communication skills and bereavement care. During the community-based years as trainee and principal, training was significantly more common than during the hospital-based years of training as clinical student and junior doctor. CONCLUSIONS: There is a continuing need for medical education in palliative care. Particular attention should be paid to the basic medical education of clinical students and the training of junior doctors, especially regarding communication skills and bereavement care.     

Good end-of-life care according to patients and their GPs

BACKGROUND: Most patients prefer to die at home, where a GP provides end-of-life care. A few previous studies have been directed at the GPs' values on good end-of-life care, yet no study combined values of patients and their own GP. AIM: To explore the aspects valued by both patients and GPs in end-of-life care at home, and to reflect upon the results in the context of future developments in primary care. DESIGN OF STUDY: Interviews with patients and their own GP. SETTING: Primary care in the Netherlands. METHOD: Qualitative, semi-structured interviews with 20 GPs and 30 of their patients with a life expectancy of less than 6 months, and cancer, heart failure or chronic obstructive pulmonary disease as underlying disease. RESULTS: Patients and GPs had comparable perceptions of good end-of-life care. Patients and GPs identified four core items that they valued in end-of-life care: availability of the GP for home visits and after office-hours, medical competence and cooperation with other professionals, attention and continuity of care. CONCLUSIONS: Future developments in the organisation of primary care such as the restriction of time for home visits, more part-time jobs and GP cooperatives responsible for care after office hours, may threaten valued aspects in end-of-life care.     

Exploring the community pharmacist's role in palliative care: focusing on the person not just the prescription

Objective

Changes in health care provision have led to an emphasis on providing end of life care within the home. community pharmacists are well positioned to provide services to community-based palliative care patients and carers.

Methods

A multiple qualitative case study design was adopted. A total of 16 focus groups and 19 interviews with pharmacists, nurses, general practitioners and carers were undertaken across metropolitan and regional settings in Western Australia, New South Wales, Queensland and Victoria. Data were analysed thematically using a framework that allowed similarities and differences across stakeholder groups and locations to be examined and compared.

Results

Three main themes emerged: effective communication; challenges to effective communication; and: towards best practice, which comprised two themes: community pharmacists’ skills and community pharmacists’ needs.

Discussion

A key component of the provision of palliative care was having effective communication skills. Although community pharmacists saw an opportunity to provide interpersonal support, they suggested that they would need to develop more effective communication skills to fulfil this role.

Conclusion

There is clear need for continuing professional development in this area - particularly in communicating effectively and managing strong emotions.

Practice implications

Community pharmacists are willing to support palliative care patients and carers but need education, support and resources.     

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.     

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.     

Bereavement care in primary care: a systematic literature review and narrative synthesis

Background

Over half a million people die in Britain each year and, on average, a GP will have 20 patients die annually. Bereavement is associated with significant morbidity and mortality, but the research evidence on which GPs and district nurses can base their practice is limited.

Aim

To review the existing literature concerning how GPs and district nurses think they should care for patients who are bereaved and how they do care for them.

Design

Systematic literature review.

Method

Searches of AMED, BNI, CINAHL, EMBASE, Medline and PsychInfo databases were undertaken, with citation searches of key papers and hand searches of two journals. Inclusion criteria were studies containing empirical data relating to adult bereavement care provided by GPs and district nurses. Information from data extraction forms were analysed using NVivo software, with a narrative synthesis of emergent themes.

Results

Eleven papers relating to GPs and two relating to district nurses were included. Both groups viewed bereavement care as an important and satisfying part of their work, for which they had received little training. They were anxious not to ‘medicalise’ normal grief. Home visits, telephone consultations, and condolence letters were all used in their support of bereaved people.

Conclusion

A small number of studies were identified, most of which were >10 years old, from single GP practices, or small in size and of limited quality. Although GPs and district nurses stated a preference to care for those who were bereaved in a proactive fashion, little is known of the extent to which this takes place in current practice, or the content of such care.     

Judgements about fellow professionals and the management of patients receiving palliative care in primary care: a qualitative study.

BACKGROUND: Policies emphasise the importance of collaborative working in community palliative care. Collaborations are generally formed through formal and informal referral processes, but little is known about what influences professionals' decisions to refer to such services. AIM: To explore the influences on referrals within general and specialist community palliative care services. DESIGN OF STUDY: Qualitative, multiple-case study. SETTING: Three primary care trusts in the north-west of England. METHOD: Multiple data collection methods were employed, including documentary analysis, observation of referral team meetings and interviews. This paper primarily reports data from interviews with 47 health professionals, including GPs, district nurses, and specialist palliative care professionals. RESULTS: Judgements -- positive and negative -- about aspects of fellow professionals' performances appeared to influence referral decisions and ongoing collaboration and care. Attributes upon which these judgements were based included professional responsiveness and communication, respect, working and workload management practices, perceived expertise, and notions of elite practice. The effects of such judgements on referral and healthcare practices were altered by professional "game playing" to achieve professionals' desired outcomes. CONCLUSION: Palliative care policies and protocols need to take account of these complex and subtle influences on referrals and collaboration. In particular, teamwork and partnership are encouraged within palliative care work, but critical judgements indicate that such partnerships may be difficult or fragile. It is likely that such judgemental attitudes and practices affect many aspects of primary care, not just palliative care.     

Barriers to the adoption of computerised decision support systems in general practice consultations: a qualitative study of GPs' perspectives

INTRODUCTION: Computerised decision support systems are increasingly important in primary care for the practice of evidence-based medicine and the development of shared GP-patient decision making. However, despite their emergence, such systems have not been entirely embraced by GPs. There is little qualitative research exploring practical barriers to the adoption of decision support systems in this setting. METHOD: Qualitative interviews with 15 GPs in the West Midlands. RESULTS: Several practical barriers were identified to the use of computerised support systems in primary care consultations. These included limitations of practitioners' IT skills, problems for GPs in understanding the risk output of systems and GP concerns about communicating risk sufficiently well to patients. Concerns over the time implications of using a system in a consultation was also identified as a barrier. CONCLUSION: Designers of decision support systems for use in primary care consultations must account for the practical needs of users when developing computerised support systems. Systems must be acceptable to the format of a consultation, include definitions of what output means, and help facilitate dialogue between the GP and the patient.     

Communication on end-of-life decisions with patients wishing to die at home: the making of a guideline for GPs in Flanders, Belgium

BACKGROUND: Communication with patients on end-of-life decisions is a delicate topic for which there is little guidance.AIM: To describe the development of a guideline for GPs on end-of-life communication with patients who wish to die at home, in a context where patient autonomy and euthanasia are legally regulated. DESIGN OF STUDY: A three-phase process (generation, elaboration and validation). In the generation phase, literature findings were structured and then prioritised in a focus group with GPs of a palliative care consultation network. In the elaboration phase, qualitative data on patients' and caregivers' perspectives were gathered through a focus group with next-of-kin, in-depth interviews with terminal patients, and four quality circle sessions with representatives of all constituencies. In the validation phase, the acceptability of the draft guideline was reviewed in bipolar focus groups (GPs-nurses and GPs-specialists). Finally, comments were solicited from experts by mail. SETTING: Primary home care in Belgium. SUBJECTS: Participants in this study were terminal patients (n = 17), next-of-kin of terminal patients (n = 17), GPs (n = 25), specialists (n = 3), nurses (n = 8), other caregivers (n = 2) and experts (n = 41). RESULTS: Caregivers and patients expressed a need for a comprehensive guideline on communication in end-of-life decisions. Four major communication themes were prioritised: truth telling; exploration of the patient's wishes regarding the end of life; dealing with disproportionate interventions; and dealing with requests for euthanasia in the terminal phase of life. Additional themes required special attention in the guideline: continuity of care by the GP; communication on foregoing food and fluid; and technical aspects of euthanasia. CONCLUSION: It was feasible to develop a guideline by combining the three cornerstones of evidence-based medicine: literature search, patient values and professional experience.     

Associations between home death and GP involvement in palliative cancer care

Background

Most cancer patients die at institutions despite their wish for home death. GP-related factors may be crucial in attaining home death.

Aim

To describe cancer patients in palliative care at home and examine associations between home death and GP involvement in the palliative pathway.

Design of study

Population-based, combined register and questionnaire study.

Setting

Aarhus County, Denmark.

Method

Patient-specific questionnaires were sent to GPs of 599 cancer patients who died during a 9-month period in 2006. The 333 cases that were included comprised information on sociodemography and GP-related issues; for example knowledge of the patient, unplanned home visits, GPs providing their private phone number, and contact with relatives. Register data were collected on patients'' age, sex, cancer diagnosis, place of death, and number of GP home visits. Associations with home death were analysed in a multivariable regression model with prevalence ratios (PR) as a measure of association.

Results

There was a strong association between facilitating home death and GPs making home visits (PR = 4.3, 95% confidence interval [CI] = 1.2 to 14.9) and involvement of community nurses (PR = 1.4, 95% CI = 1.0 to 1.9). No other GP-related variables were statistically significantly associated with home death.

Conclusion

Active involvement of GPs providing home visits and the use of home nurses were independently associated with a higher likelihood of facilitating home death for cancer patients. The primary care team may facilitate home death, accommodating patients'' wishes. Future research should examine the precise mechanisms of their involvement.     

Study protocol: optimization of complex palliative care at home via telemedicine. A cluster randomized controlled trial

Background

Due to the growing number of elderly with advanced chronic conditions, healthcare services will come under increasing pressure. Teleconsultation is an innovative approach to deliver quality of care for palliative patients at home. Quantitative studies assessing the effect of teleconsultation on clinical outcomes are scarce. The aim of this present study is to investigate the effectiveness of teleconsultation in complex palliative homecare.

Methods/Design

During a 2-year recruitment period, GPs are invited to participate in this cluster randomized controlled trial. When a GP refers an eligible patient for the study, the GP is randomized to the intervention group or the control group. Patients in the intervention group have a weekly teleconsultation with a nurse practitioner and/or a physician of the palliative consultation team. The nurse practitioner, in cooperation with the palliative care specialist of the palliative consultation team, advises the GP on treatment policy of the patient. The primary outcome of patient symptom burden is assessed at baseline and weekly using the Edmonton Symptom Assessment Scale (ESAS) and at baseline and every four weeks using the Hospital Anxiety and Depression Scale (HADS). Secondary outcomes are self-perceived burden from informal care (EDIZ), patient experienced continuity of medical care (NCQ), patient and caregiver satisfaction with the teleconsultation (PSQ), the experienced problems and needs in palliative care (PNPC-sv) and the number of hospital admissions.

Discussion

This is one of the first randomized controlled trials in palliative telecare. Our data will verify whether telemedicine positively affects palliative homecare.

Trial registration

The Netherlands National Trial Register NTR2817     

Effectiveness of nurse-delivered cardiovascular risk management in primary care: a randomised trial

Background

A substantial part of cardiovascular disease prevention is delivered in primary care. Special attention should be paid to the assessment of cardiovascular risk factors. According to the Dutch guideline for cardiovascular risk management, the heavy workload of cardiovascular risk management for GPs could be shared with advanced practice nurses.

Aim

To investigate the clinical effectiveness of practice nurses acting as substitutes for GPs in cardiovascular risk management after 1 year of follow-up.

Design of study

Prospective pragmatic randomised trial.

Setting

Primary care in the south of the Netherlands. Six centres (25 GPs, six nurses) participated.

Method

A total of 1626 potentially eligible patients at high risk for cardiovascular disease were randomised to a practice nurse group (n = 808) or a GP group (n = 818) in 2006. In total, 701 patients were included in the trial. The Dutch guideline for cardiovascular risk management was used as the protocol, with standardised techniques for risk assessment. Changes in the following risk factors after 1 year were measured: lipids, systolic blood pressure, and body mass index. In addition, patients in the GP group received a brief questionnaire.

Results

A larger decrease in the mean level of risk factors was observed in the practice nurse group compared with the GP group. After controlling for confounders, only the larger decrease in total cholesterol in the practice nurse group was statistically significant (P = 0.01, two-sided).

Conclusion

Advanced practice nurses are achieving results, equal to or better than GPs for the management of risk factors. The findings of this study support the involvement of practice nurses in cardiovascular risk management in Dutch primary care.