Table 1

Papers included in the review

Study	Aims	Participants	Setting	Study design/method	Relevant findings
Aitken (2006) District nurses' triggers for referral of patients to the Macmillan nurse15	This study aimed to explore the triggers that motivate district nurses to refer patients to the Macmillan nurse in order to reveal whether influences other than ‘patient need’ determine referrals	District nurses (n = 8)	Primary care locality in the UK	Qualitative semi-structured interviews	Three themes emerged: knowledge and skills; interprofessional issues; perception of Macmillan. Reasons for referral to Macmillan services were often cited as the extra knowledge and skills of staff in physical and psychosocial symptom control, and family issues. Referral paths to Macmillan differed greatly and there were gaps in district nurses' knowledge of the Macmillan role. Patient perceptions could also affect referral to Macmillan. The study concluded that there is a need to educate health professionals and patients about the role of the Macmillan nurse, as well as a pressing need to develop referral criteria for the Macmillan service.

Alsop (2010) Collaborative working in end-of-life care: developing a guide for health and social care professionals16	Review of a project to develop collaborative working between palliative care nurse specialists and community matrons for patients with a non-cancer diagnosis	Community matrons and hospice staff	UK hospice	Non-empirical: project review. Focus groups of community matrons and hospice nurse specialists met to develop models of collaborative working	Two care pathways were developed: one for ‘palliative care’ and one for ‘urgent care’. One of the key functions of the pathways is to facilitate partnership working by providing clarity around concepts and principles, as well as roles, responsibilities, and decision making. These pathways were subsequently developed into a guide for use by health or social care professionals, to facilitate best practice in end-of-life care, and have been adopted by two primary care trusts.

Blackford, Street (2001) The role of the palliative care nurse consultant in promoting continuity of end-of-life care17	To explore the experiences and strategies used by palliative care nurses to communicate with GPs	Specialist palliative care nurses (n = 11) and other nurses working in specialist palliative care services (n = 11)	Specialist palliative care services, hospitals, district nursing services in Melbourne, Australia	Qualitative — focus groups and semi-structured interviews	Some issues identified related to defining roles and responsibilities of different nurses providing specialist palliative care. Difficulties were reported with communication at acute/community interface; specialist palliative care nurses could help improve this and promote continuity of care. Professional territorialism can undermine care as there is no agreed consensus on roles and responsibilities. The success of communication strategies, for example written documentation and regular meetings, were dependent on specialist palliative care nurse provision of accurate and timely information. It would be beneficial if the role diversity that exists in the palliative care nurse consultant position could be addressed to provide consistency between services and appropriate resource support.

Daley et al (2006) Heart failure and palliative care services working in partnership: report of a new model of care18	To describe the evolution of joint working between heart failure and specialist palliative care services	491 heart failure (HF) patients	HF services and specialist palliative care services in Bradford, UK	Service description incorporating descriptive service data and qualitative data from patients	Shared learning was undertaken between HF nurses, specialist palliative care staff, and primary care staff. HF nurses took on a role as key worker for patients' holistic care providing care where possible or coordinating other services. Collaboration over patient care generally took the form of advisory care or direct care. Hospice-based HF support groups were also set up to provide total care for patients with HF. Collaborative services did not lead to excess burden on specialist palliative care or increased use of hospice beds. Patients/carers were positive about the support group and found it helpful.

Davidson et al (2004) Integrated collaborative palliative care in heart failure: the St. George Heart Failure Service experience 1999–200219	To describe the development of a model of an integrated, consultative, palliative care approach within a comprehensive HF community-focused disease management programme	—	Teaching hospital in Sydney, Australia	Description of model development and evaluation	Model for integrated palliative care in HF management was developed following literature review, casenote review of patients with HF, and consultation with stakeholders. A template for a systematic care plan was developed for the integrated care of patients with HF who were dying in hospital; a key recommendation was to equip and empower generalist palliative care clinicians with specialist palliative care knowledge through education and training. An important facilitator to the model was communication between teams. Model implementation resulted in more home deaths, fewer referrals to specialist palliative care, and a probable decrease in presentations at accident and emergency.

Ewing et al (2009) Delivering palliative care in an acute hospital setting: views of referrers and specialist providers5	The aim of the study was to describe referrer (specialist palliative care service user) and provider (specialist palliative care service staff) perspectives on delivery of specialist palliative care in hospital	Junior doctors (n = 5), consultants (n = 13), clinical nurse specialists (n = 6, interviews), medical staff (n = 6), nursing staff (n = 5, focus groups)	Acute hospital trust in England	Qualitative interviews and focus groups	Large areas of agreement between referrers and providers on what hospital specialist palliative care teams should be providing for patients, that is, expertise in managing difficult symptoms and complex psychosocial problems. Access to specialist palliative care was also important, including visibility on the wards, informal routes of access to advice, and a timely response by specialists. Discordance in views of providing palliative care was identified; in particular, whether specialists should be providing generalist palliative care (such as basic psychological support) neglected by ward teams. Some issues with speed of implementation of specialist advice by generalists was also identified.

Field (1998) Special not different: general practitioners' accounts of their care of dying people20	To explore GPs' experiences of caring for dying people, and their attitudes towards such work	GPs (n = 25)	GPs who had graduated from University of Leicester 10 years previously	Qualitative unstructured interviews	Use of specialist palliative care led to tensions as GPs felt they knew most about social circumstances and patients' general requirements, but would nevertheless lose control of patient care. Some hospices were not willing to involve GPs and district nurses as full-time partners, and were only willing to deliver care on their own terms. Specialist palliative care can have detrimental consequences for GPs by deskilling them. (Note: this paper is fairly old and its relevance was questioned.)

Hanratty et al (2002) Doctors' perceptions of palliative care for heart failure: focus group study21	To identify doctors' perceptions of the need for palliative care for heart failure and barriers to change	GPs (n = 36) and consultants in cardiology, geriatrics, palliative care, and general medicine	Northwest England	Qualitative focus groups	Uncoordinated care and unplanned services reported as barriers to good palliative care in HF. Poor coordination between teams led to poor continuity of care; the concept of a key worker was suggested as a solution. Cardiologists accused of failing to recognise palliative care needs. GPs questioned the need for specialist palliative care as they felt able to manage patients who were dying and didn't want them to be ‘stolen’. A need for discussion and links between specialties was acknowledged, as was a clarification of roles.

Heals (2008) Development and implementation of a palliative care link-nurse programme in care homes22	To explore the development and implementation by a hospice education department of a palliative care link nurse programme in care homes with nursing	Questionnaires (n = 16) completed by link nurses and nursing home staff	Hospice in Southwest England	Service development evaluation	Findings included: the importance of contact and liaison with the hospice; the value of specialist nurses working in the community; and the support received from the hospice's 24-hour advice line. Networking was considered to be an integral part of the programme. Study days were found to be valuable, with increased knowledge and skills for nursing home staff. Changes in documentation and care planning were recognised as an important consequence of the programme. The link nurse was seen as a resource to cascade information, although there was a lack of knowledge and reluctance to change practice in some generalist palliative care staff.

Lloyd-Williams, Rashid (2003) An analysis of calls to an out-of-hours palliative care advice line23	To analyse the calls to a palliative care out-of-hours service during its first year	Analysis of phone calls (n = 98)	Hospice in Liverpool, England	Descriptive analysis of phone calls	GPs, community nurses, and junior hospital doctors called the service most frequently. Most calls related to pain control and conversion of drugs. Many callers were unaware of the existence of 24 hour on-call pharmacy service. Communication between professionals caring for patients was poor; many callers reported not knowing enough about the patient. The study supports continuing need for palliative care education in the community.

Low et al (2001) Specialist community palliative care services — a survey of GPs' experience in Eastern Sydney24	A pilot survey in to assess GPs' experience with a palliative care support service and to explore whether there were any barriers that might prevent needs being met effectively	GPs (n = 51)	GP practices in a locality provided by a palliative care service in Sydney, Australia	Qualitative questionnaire	Factors preventing GPs becoming more involved in palliative care included: poor training; poor communication and liaison with specialist palliative care services; difficulty accessing the service (especially out of hours); and utility of advice given. However, most GPs found the service accessible, giving useful advice with good communication.

Marshall et al (2008) Enhancing family physician capacity to deliver quality palliative home care: an end-of-life, shared-care model25	To describe a shared-care model to enhance family physician capacity to deliver palliative home care through collaboration with interprofessional palliative care specialists	Family physicians (n = 21) and community nurses (n = 6)	Family health care teams (n = 3) in Niagara West region of Ontario, Canada	Description of new model of care	The shared-care model components included: an enhanced palliative care team available to community teams; improved access and new referral criteria; coordinated continuous care; and education and decision support. The shared-care model resulted in a 40% increase in referrals and increased patient death in place of preference. Family doctors/nurses reported that access to round-the-clock consultations and practice-based education were the most important aspects of the model; they also felt patients benefited from the model.

McKinlay, McBain (2007) Evaluation of the Palliative Care Partnership: a New Zealand solution to the provision of integrated palliative care26	To evaluate a model of integrated palliative care — the Palliative Care Partnership (PCP)	Stakeholders (n = 63)	MidCentral Mixed Health Board, New Zealand	A mixed-method approach including in-depth, semi-structured interviews with a purposeful sample of stakeholders and analysis of routinely collected data	PCP comprised generalist palliative care (provided by GPs/practice nurses) and specialist palliative care (provided by nurse palliative care coordinators and hospice staff). A staff induction and education session is a prerequisite to joining PCP; stakeholders reported favourably on the model of care, clinicians reported increased confidence and satisfaction. Small numbers of patients are refused entry to the PCP (inc. aged). PCP supports GPs to provide early sustainable palliative care, generalist palliative care practitioners felt well-supported by advice from hospice staff. Educational content was seen as valuable.

Mitchell et al (2008) Do case conferences between GPs and specialist palliative care services improve quality of life?27	To explore whether case conferences between GPs and specialist palliative care services improve patients' quality of life	Patients receiving palliative care (n = 159: intervention, n = 79; control, n = 80)	Sites (n = 3, inner urban, outer urban and a regional general hospital) in Queensland, Australia	Multicentred randomised controlled trial	Global quality of life was not influenced by the intervention. Some improvement in carer burden was seen. The case conference group showed better maintenance of some physical and mental health measures of quality of life in the 35 days before death. Case conferences may improve clinical relationships and care plans at referral, which are not implemented until severe symptoms develop.

O'Connor, Lee-Steere (2006) GPs' attitudes to palliative care: a Western Australian rural perspective28	What are GPs' attitudes to palliative care in a rural centre of Western Australia? What factors contribute to GPs' attitudes to palliative care? What are the perceived barriers to the provision of palliative care?	GPs (n = 10)	Rural Western Australia	Qualitative in-depth interviews	GPs believed continuity of care was important when delivering palliative care in a rural setting. Working in a multidisciplinary team was seen as highly beneficial; GPs lead palliative care teams, but nurses may provide more care. GPs were thankful to have a specialist palliative care service but were wary of palliative care becoming a specialist-only service. Overemphasis on specialist palliative care services was identified as a barrier to rural GPs' participation in palliative care. GPs had mixed attitudes to more education and training. A telephone service for specialist palliative care advice was viewed positively.

Plummer, Hearnshaw (2006) Reviewing a new model for delivering short-term specialist palliative care at home29	To evaluate a new community palliative care nursing service at the end of its first year	Health professionals (n = 27) who completed questionnaires	Specialist palliative care unit attached to a hospital in Middlesex, England	Service evaluation: audit examining service activity and questionnaire for health professionals using the service	Evaluation of a new community outreach service, developed in response to problems experienced with discharge from inpatient care. The service comprised specialist palliative care nurses providing short-term, post-discharge care (approx. 72 hours), with medical support. Issues raised prior to implementation included: concerns about deskilling district nurses; duplicating services; raised expectation; withdrawing after 72 hours. Evaluation showed high numbers of referrals led to non-involvement — 49% of patients were enabled to stay at home following care. Health professionals reported the benefits of the service as: support for patients in crisis; facilitating preferred place of care; flexible and quick response; out-of-hours care; support; support for community team.

Pooler et al (2007) Caring for patients dying at home from heart failure: a new way of working30	To describe the development of a collaborative working model between HF nurse and Macmillan nurses, to facilitate specialist palliative care for HF patients	—	HF and specialist palliative care services in Northwest England	Description of service development	Barriers to changing practice were identified and included: lack of clinical knowledge in each other's clinical practice; specialist palliative care services being concerned about being overrun; concerns among other health professionals about non-cancer referrals to specialist palliative care. A collaborative working model was developed and involved a Macmillan nurse, HF nurses, and patients being visited at home by district nurses. The service helped address patient understanding of HF, sense of isolation, financial worries, management of physical symptoms.

Shipman et al (2002) How and why do GPs use specialist palliative care services?31	To explore GP use of and attitudes to specialist palliative care	GPs (n = 63)	Inner-city, urban, and rural health districts in England	Qualitative interview study	GPs used specialist palliative care services for advice, information, and being updated, as well as patient referral, symptom control, and respite care. GPs fell into four categories: seldom using specialist palliative care; using specialist palliative care as a resource; working with specialist palliative care as an extended team; and handing over responsibility to the specialist palliative care team. These ways of working could change, depending on context, patient need, etc. Barriers to working with specialist palliative care included: communication differences; disagreement over medication; separation of responsibility; and lack of decision making. GPs reported changes in the amount of palliative care they were able to provide now compared to historically, due to time restraints.

Shipman et al (2003) Building bridges in palliative care: evaluating a GP facilitator programme32	To evaluate the impact of a Macmillan GP facilitator programme on: palliative care on knowledge, attitudes, and confidence in symptom control of GPs; communication with patients and out-of-hours practice	GPs (n = 449)	GPs in England	Mixed-method evaluation, comprising before/after trial and in-depth interviews	Compared with controls, facilitator GPs were more likely to use local palliative care guidelines. They were less likely to discuss diagnosis, but were more satisfied with out-of-hours services. Facilitators perceived well in qualitative element, building bridges between specialist palliative care and generalist palliative care, and providing an extra perspective to traditional specialist palliative care nurses. This programme led to an increased positive attitude among GPs towards specialist palliative care.

Street, Blackford (2001) Communication issues for the interdisciplinary community palliative care team33	To examine communication patterns between nurses and GPs providing palliative care	Palliative care nurses (n = 40)	Community, hospice and hospital, Australia	Qualitative interviews and focus groups	Issues that impeded effective communication included networking issues — effective networking was rarely the result of systematic processes but via specialist palliative care nurses personally liaising and providing coordination. Transmission of information was patchy. There was little consensus on case management, and who had coordinating responsibility for patients; territorialism was sometimes an issue. Multiple service providers meant there was insufficient time for GPs and specialist palliative care nurses to ensure continuity of care, and tracking patients through the system (e.g. being informed about admissions) could be difficult. Lack of standardised documentation between services could also be a problem. Various strategies were identified to improve communication and continuity of care.

Walshe et al (2008) Judgements about fellow professionals and the management of patients receiving palliative care in primary care: a qualitative study34	To explore the influences on referrals within general and specialist community palliative care services	Health professionals (n = 47), including GPs, district nurses, and specialist palliative care professionals.	Three primary care trusts in northwest England	Qualitative interviews	GP involvement in palliative care and responsiveness varied, and was influenced by professional boundaries. Professionals recognised that their relationships with, and perceptions of, each other influenced how they worked together and made referrals. Nurses reported having to negotiate relationships; power may be an issue. Some mutual criticism of workload management practices, e.g. that of district nurses. Negative comments were made about each others' expertise. Specialist palliative care could be seen as providing an elite service; there was a ‘them and us’ mentality and GPs could be reluctant to refer. Strategies (e.g. game playing) had been developed to ‘get round’ difficult colleagues or where relationships had broken down.

Woodhouse (2009) Exploration of interaction and shared care arrangements of generalist community nurses and external nursing teams in a rural health setting35	To determine the understanding of nurses within a shared-care model, as well as the degree of interaction evident in their practice in the shared-care nursing environment in a rural care setting	Nurses from generalist community health team (n = 6), specialist palliative care team, and aged care team	Primary care in a rural health setting, Australia	Descriptive questionnaire study	Four recurring themes were identified: care plans seemed to be developed in isolation from other teams; case coordination was seen as necessary but not always achieved; knowledge of the role of other teams was varied; a variety of communication strategies described. An enduring theme was a lack of processes for communication and difficulty in achieving feedback.