Out-of-hours GPs and palliative care-a qualitative study exploring information exchange and communication issues

Background  

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.     

A reassuring presence: An evaluation of Bradford District Hospice at Home service

Background  

Within the United Kingdom, a developing role for primary care services in cancer and palliative care has resulted in an increase in palliative home care teams. The provision of professional care in the home setting seeks to provide necessary services and enhanced choice for patients whose preference is to die at home.     

The PAMINO-project: evaluating a primary care-based educational program to improve the quality of life of palliative patients

Background  

The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO)' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated.     

Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives

Background

Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families.

Methods

In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data.

Results

Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers.

Conclusion

Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team.

     

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.     

Early identification of palliative care patients in general practice: development of RADboud indicators for PAlliative Care Needs (RADPAC)

Background

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.

Aim

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.

Design

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.

Method

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.

Results

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.

Conclusion

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.     

Experiences, knowledge, and opinions on palliative care among Romanian general practitioners

Aim

To assess experience, knowledge, and opinions of Romanian general practitioners (GPs) on palliative health care in Romania.

Methods

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.

Results

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.

Conclusion

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.Palliative care is a relatively new form of health care provision in Central-Eastern European (CEE) countries unlike in Western Europe, where it has been an established health care specialty for decades (1,2). The most widely used model of palliative care provision in CEE countries is the hospice model. However, the number and availability of hospices and financial means allocated to these institutions have been insufficient, and the population in need of palliative care has been increasing. Palliative care professionals are less focused on the needs of patients and possible development of a new model for palliative care provision than they are on the “vested interests” of the model, ie, preventing the hospices in which they work from being closed down.With aging of the population, the morbidity profile in CEE countries has changed and so have the health care needs. The need for nursing and care, including palliative care, is increasing and largely uneven distribution of medical care facilities between urban and rural areas only aggravates the problem. All these factors bring the palliative care issues to focus (3).Until recently, palliative care in Romania and many CEE countries was primarily associated with terminal care of patients with cancer and the hospice movement (4,5). In the last few years, however, the hospice model as a preferred model of palliative care has been reevaluated and questioned by many (3). Because of the over-institutionalization of health care and the decrease in the number of hospital beds, health care policymakers are increasingly thinking about promoting palliative care at home, which would be supported by a palliative care team (1). Furthermore, people in most CEE countries prefer to die at home, as there is still a strong tradition of family care (6).The expectation of the Romanian primary health care system, which includes general practitioners (GPs) and nurses, to play an important role in palliative care at home is relatively far from realization. Not only that this aspect of health care provision is new and partly unknown to great majority of GPs, but the complementary services and expertise in home care and pain management are not well developed either. This problem is also present in Croatia, Hungary, and Slovakia (1), where various initiatives are being taken to develop palliative care as the need for it increases. As Doyle et al (7) have stated, palliative care at home is dependent on the attitudes and perceptions of family physicians and wider socio-cultural attitudes. Also, the lack of information on the latest techniques and developments in palliative care may prohibit the development of that health care area (8).The first hospices in Romania were established in Oradea and Brasov (9); by 2004, five hospices had been opened. Although a government policy from 1998 tried to strengthen the role of the GP in the health care delivery system (10), no systematic attention had been given to palliative care in general practice or hospitals until 2002 (4). Thereafter, family physicians have increasingly started to provide palliative care, but they have not been reimbursed for the service. Thus, it may be said that the efforts to develop a system of palliative care provision in Romania are still not organized.We asked GPs in five districts in Romania to self-assess their experience in palliative care provision, their knowledge and need for better education in palliative care, and their opinion on the best way to deliver this type of care.     

Primary care access to computed tomography for chronic headache

Background

The diagnostic yield of neuroimaging in chronic headache is low, but can reduce the use of health services.

Aim

To determine whether primary care access to brain computed tomography (CT) referral for chronic headache reduces referral to secondary care.

Design of study

Prospective observational analysis of GP referrals to an open access CT brain scanning service.

Setting

Primary care, and outpatient radiology and neurology departments.

Method

GPs in Tayside and North East Fife, Scotland were given access to brain CT for patients with chronic headache. All referrals were analysed prospectively over 1 year, and questionnaires were sent to referrers to establish whether imaging had resulted in or stopped a referral to secondary care. The Tayside outpatient clinic database identified scanned patients referred to the neurology clinic for headache from the start of the study period to at least 1 year after their scan.

Results

There were 232 referrals (55.1/100 000/year, 95% confidence interval = 50.4 to 59.9) from GPs in 59 (82%) of 72 primary care practices. CT was performed on 215 patients. Significant abnormalities were noted in 3 (1.4%) patients; there were 22 (10.2%) non-significant findings, and 190 (88.4%) normal scans. Questionnaires of the referring GPs reported that 167 (88%) scans stopped a referral to secondary care. GPs referred 30 (14%) scanned patients to a neurologist because of headache. It is estimated that imaging reduced referrals to secondary care by 86% in the follow-up period.

Conclusion

An open access brain CT service for patients with chronic headache was used by most GP practices in Tayside, and reduced the number of referrals to secondary care.     

Are UK primary care teams formally identifying patients for palliative care before they die?

Background

The palliative care approach has the potential to improve care for patients with progressive life-threatening illnesses from the time of diagnosis. Policy and clinical directives in the UK advocate early identification.

Aim

To determine the extent to which practices identify patients for palliative care, including factors influencing early identification and possible effects on place of death.

Design and setting

Qualitative and quantitative data were collected from six general practices from three Scottish NHS boards and analysed.

Method

Records of patients who had died in the previous 6 months were analysed and interviews with practice staff (n = 21) and with patients currently on the practice palliative care register and bereaved relatives (n = 14) were conducted. In addition, a practice meeting was observed.

Results

In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Two-thirds of patients with cancer were recorded on the register, but for those with non-malignant conditions only around 20% had any palliative care documented. This was a result of GPs not finding the current guidelines useful and being reluctant to discuss palliative care overtly with patients early in their illness. Palliative care services and documentation were geared towards patients with cancer. More district nurses than GPs saw the benefits of inclusion on the palliative care register. Only 25% of patients on the register died in hospital.

Conclusion

Most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care approach before they die. Those identified are more likely to benefit from coordinated care and may be more likely to die at home.     

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.     

GP and nurses' perceptions of how after hours care for people receiving palliative care at home could be improved: a mixed methods study

Background  

Primary health care providers play a dominant role in the provision of palliative care (PC) in Australia but many gaps in after hours service remain. In some rural areas only 19% of people receiving palliative care achieve their goal of dying at home. This study, which builds on an earlier qualitative phase of the project, investigates the gaps in care from the perspective of general practitioners (GPs) and PC nurses.     

Examining the variation in GPs’ referral practice: a cross-sectional study of GPs’ reasons for referral

Background

There is a large variation in referral rates to secondary care among GPs, which is partly unexplained.

Aim

To explore associations between reasons for referral to secondary care and patient, GP, and healthcare characteristics.

Design and setting

A cross-sectional study in Northern Norway.

Method

Data were derived from 44 (42%) of 104 randomly selected GPs between 2008 and 2010. GPs scored the relevance of nine predefined reasons for 595 referrals from 4350 consecutive consultations on a four-level categorical scale. Associations were examined by multivariable ordered and multivariable multilevel logistic regression analyses.

Results

Medical necessity was assessed as a relevant reason in 93% of the referrals, 43.7% by patient preference, 27.5% to avoid overlooking anything, and 14.6% to reassure the patient. The higher the referral rates, the more frequently the GPs referred to avoid overlooking anything. Female GPs referred to reassure the patient and due to perceived deficient medical knowledge significantly more often than male GPs. However, perceived easy accessibility of specialists was significantly less frequently given as a reason for referral by female GPs compared with male GPs. When the GPs scored the referrals to be of lesser medical necessity, male GPs referred significantly more frequently than female GPs to reassure the patient due to patient preference and perceived deficient medical knowledge.

Conclusion

There are striking differences in reasons for referral between Norwegian male and female GPs and between GPs with high and low referral rates, which reflects difficulties in handling professional uncertainty. Referring to reassure the patients, especially when referrals are less medically necessary, may reflect consideration and acquiescence towards the patients.     

Women’s experiences of referral to a domestic violence advocate in UK primary care settings: a service-user collaborative study

Background

Women experiencing domestic violence and abuse (DVA) are more likely to be in touch with health services than any other agency, yet doctors and nurses rarely ask about abuse, often failing to identify signs of DVA in their patients.

Aim

To understand women’s experience of disclosure of DVA in primary care settings and subsequent referral to a DVA advocate in the context of a DVA training and support programme for primary care clinicians: Identification and Referral to Improve Safety (IRIS).

Design and setting

A service-user collaborative study using a qualitative study design. Recruitment was from across IRIS trial settings in Bristol and Hackney, London.

Method

Twelve women who had been referred to one of two specialist DVA advocates (based at specialist DVA agencies) were recruited by a GP taking part in IRIS. Women were interviewed by a survivor of DVA and interviews were recorded and transcribed verbatim. Analysis was thematic using constant comparison.

Results

GPs and nurses can play an important role in identifying women experiencing DVA and referring them to DVA specialist agencies. GPs may also have an important role to play in helping women maintain any changes they make as a result of referral to an advocate, by asking about DVA in subsequent consultations.

Conclusion

A short time interval between a primary care referral and initial contact with an advocate was valued by some women. For the initial contact with an advocate to happen as soon as possible after a primary care referral has been made, a close working relationship between primary care and the third sector needs to be cultivated.     

Impact of pain and palliative care services on patients

Background:

Palliative care has become an emerging need of the day as the existing health-care facilities play only a limited role in the care of the chronically ill in the society. Patients with terminal illness in most cases spend their lives in the community among their family and neighbors, so there is the need for a multi disciplinary team for their constant care. Volunteers are primary care givers who originate normally from the same locality with local knowledge and good public contact through which they can make significant contributions in a team work by bridging the gap between the patient community and outside world.

Aim:

The present study has been undertaken to analyze the impact of palliative care services on patients by considering 51 variables.

Materials and Methods:

The respondents of the study include 50 pain and palliative care patients selected at random from 15 palliative care units functioning in Ernakulam district. The analysis was made by using statistical techniques viz. weighted average method, Chi-square test, Friedman repeated measures analysis of variance on ranks and percentages.

Results:

The study revealed that the major benefit of palliative care to the patients is the reduction of pain to a considerable extent, which was unbearable for them earlier. Second, the hope of patients could be maintained or strengthened through palliative care treatment.

Conclusion:

It is understood that the services of the doctors and nurses are to be improved further by making available their services to all the palliative care patients in a uniform manner.     

Risk taking in general practice: GP out-of-hours referrals to hospital

Background

Emergency admissions to hospital at night and weekends are distressing for patients and disruptive for hospitals. Many of these admissions result from referrals from GP out-of-hours (OOH) providers.

Aim

To compare rates of referral to hospital for doctors working OOH before and after the new general medical services contract was introduced in Bristol in 2005; to explore the attitudes of GPs to referral to hospital OOH; and to develop an understanding of the factors that influence GPs when they refer patients to hospital.

Design of study

Cross-sectional comparison of admission rates; postal survey.

Setting

Three OOH providers in south-west England.

Method

Referral rates were compared for 234 GPs working OOH, and questionnaires explored their attitudes to risk.

Results

There was no change in referral rates after the change in contract or in the greater than fourfold variation between those with the lowest and highest referral rates found previously. Female GPs made fewer home visits and had a higher referral rate for patients seen at home. One-hundred and fifty GPs responded to the survey. Logistic regression of three combined survey risk items, sex, and place of visit showed that GPs with low ‘tolerance of risk’ scores were more likely to be high referrers to hospital (P<0.001).

Conclusion

GPs'' threshold of risk is important for explaining variations in referral to hospital.     

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.     

Minding the gap: access to palliative care and the homeless

Background

With an ever increasing number of individuals living with chronic and terminal illnesses, palliative care as an emerging field is poised for unprecedented expansion. Today’s rising recognition of its key role in patients’ illnesses has led to increased interest in access to palliative care. It is known that homelessness as a social determinant of health has been associated with decreased access to health resources in spite of poorer health outcomes and some would argue, higher need. This article aims to discuss the current state of affairs with regards to accessing palliative care for the homeless in Canada.

Discussion

Recent review of the literature reveals differential access to palliative care services and outcomes with differing socio-economic status (SES). Notably, individuals of lower SES and in particular, those who are homeless have poorer health outcomes in addition to poor access to quality palliative care. Current palliative care services are ill equipped to care for this vulnerable population and most programs are built upon an infrastructure that is prohibitive for the homeless to access its services. A preliminary review of existing Canadian programs in place to address this gap in access identified a paucity of sporadic palliative care programs across the country with a focus on homeless and vulnerably-housed individuals. It is apparent that there is no unified national strategy to address this gap in access.

Summary

The changing landscape of the Canadian population calls for an expansion of palliative care as a field and as many have put it, as a right. The right to access quality palliative and end of life care should not be confined to particular population groups. This article calls for the development of a unified national strategy to address this glaring gap in our healthcare provision and advocates for attention to and adoption of policy and processes that would support the homeless populations’ right to quality palliative care.

     

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