Table 1

Details of included papers

Author (year)AimsParticipantsSettingMethodRelevant findings
Bestall et al (2004)22To explore the reasons why patients and families are referred to specialist palliative care (SPC)
Assessment score=31
13 patients referred to SPC (cancer and non-cancer diagnoses), 12 professionals working in SPC, 3 general practitioners, 6 community nursesNorth Trent Cancer Network, EnglandQualitative semi-structured interviews and content analysisFive key themes reported: reasons why patients are referred to palliative care; reasons why patients are not referred to palliative care; timeliness of referrals; continuity of care; use of referral criteria. Currently there are no standardised criteria in the UK to determine when a referral to SPC should be triggered. Referral criteria outlined and include complex symptoms, use of referral guidelines. Development of referral criteria may aid transition to SPC.
Jarrett (2009)21To investigate patients' perceptions of intraprofessional communication in an SPC setting
Assessment score=32
22 patients receiving SPC input (21 cancer patients and 1 multiple sclerosis patient)Two SPC units, EnglandQualitative in-depth interviews, grounded theory analysis of transcriptPatients largely positive about intra- and interprofessional communication (IIPC) when it occurred, some uncertain about extent and nature of IIPC, some patients described relaying information between different professionals or care locations, some patients and families very proactive to enhance IIPC and continuity of care.
Kendall et al (2006)24To involve cancer patients, and their carers, in designing a framework for providing effective cancer care in primary care
Assessment score=32
18 patients/carers with cancer and 16 professionals involved in cancer careSouth-east and south-west ScotlandAction research model involving two patient/carer discussion groups who met monthly over a year, and interviews with professionalsFive key points during cancer trajectory have particular significance: diagnosis; treatment; after discharge; recurrence; and the final weeks. Important role for primary care acknowledged throughout cancer trajectory. Support from primary care beneficial during transition from remission to recurrence to final weeks. Continuity of care and an individualised approach are crucial.
Krishnasamy et al (2007)20To explore patients' and family members' experiences of care provision after a diagnosis of lung cancer (LC)
Assessment score=31
23 LC patients and 15 carersTayside, ScotlandQualitative in-depth longitudinal interview study involving 3 interviews over a 6-month periodFour key domains of need apparent: pathway to confirmation of diagnosis; communication of diagnosis, treatment options, prognosis; provision of coordinated care; and support away from acute services including difficulties transitioning between services. Patients felt particularly unsafe in periods in between treatment and follow-up appointments, they felt ill-prepared for discharge or detected inadequacies in primary/secondary care communication. Many patients relied on the relationship with their hospital consultant and found it difficult to transition into palliative care.
Larkin et al (2007)18To document palliative care patients' experience at the palliative/terminal care interface; to identify perceived supportive and inhibitory factors; to analyse common experiences in the context of current palliative care development in European terms as a means to inform practice
Assessment score=30.5
100 advanced cancer patientsPalliative care centres in six European countries (UK, Ireland, Spain, The Netherlands, Italy, Switzerland)Phenomenological approach using semi-structured interviewsTransition is a confusing time for patients due to mixed messages, poor communication and uncertainty, but physical environment of the hospice offers a place of security to address this. Transition concepts fail to capture the palliative care experience fully and warrant further exploration. Transience is reported as an alternative concept, although more research is needed. Successful merging of the curative–palliative interface is beneficial to patients. Clinicians need to ensure a seamless transition as proposed as a key construct of palliative care.
Larkin et al (2007)29To support, define and consolidate the emerging concept of transience and to critically appraise how far qualitative approaches fit the examination of transience as a concept and its potential importance to palliative care
Assessment score=28.3
100 advanced cancer patientsPalliative care centres in six European countries (as above)Qualitative conceptual evaluation using two case examples from interview data (see previous Larkin paper) and a critical review of the literatureTransience is proposed as a preferred concept to transition in relation to palliative care. Transience encompasses attributes such as fragility, impermanence and stasis which are not adequately explained by the transition concept. More evidence is needed before transience can be described as a well-defined and robust concept for palliative care, but data from case studies support the concept of transience.
Murray et al (2007)23To identify and compare changes in the psychological, social and spiritual needs of people with end stage disease during the last year of life
Assessment score=35.5
24 patients with LC and 24 with HFPrimary and secondary care in south-east ScotlandData synthesis from two longitudinal, qualitative in-depth interview studies, and thematic and narrative analysis of transcriptsCharacteristic social, psychological and spiritual trajectories were discernible. LC patients reported particular distress at transition points including after treatment – ‘returning to their old life’. They also experienced difficulties at relapse/disease progression – for some engaging in a battle with the cancer gave them some sense of purpose. In the terminal phase, patients had overwhelming uncertainty, panic attacks, etc. In HF, social and psychological deterioration ran in parallel with physical deterioration, and was mediated by this. Spiritual distress fluctuated more and was modulated by other factors.
O'Leary et al (2009)25To demonstrate whether the palliative care needs of patients with advanced heart failure (HF) receiving specialist multidisciplinary coordinated care are similar to cancer patients deemed to have SPC needs
Assessment score=28.5
50 HF patients (NYHA stage III/IV) and 50 cancer patients (newly referred to SPC)Outpatient HF disease management clinic and SPC home service in EnglandCross-sectional comparative cohort study using quantitative and qualitative methods to explore functional status, symptom burden, emotional well-being, quality of life (QOL) and information and communication needsHF and cancer patients were similar in terms of symptom burden, emotional well-being and QOL. HF patients should not be excluded from SPC services, however many needs can be met at a specialist HF unit. Recognition of the palliative transition point may be key to ensuring end of life (EOL) issues are addressed. Various factors defining the transition point in HF are listed. Understanding the concept of transition can facilitate EOL care.
Patrick et al (2007)19To learn about the quality of local services from the perspective of patients, carers and staff and to develop an appropriate methodology for future consultation
Assessment score=32
10 palliative care service users/carers and 9 staffPalliative care services (hospice, community and hospital) in Kent, EnglandSemi-structured interviews with patients and focus groups with staff; content analysis of transcriptsContinuity of care is important and complex when many agencies are involved in an individual package of care. Continuity is critical to participants' overall level of satisfaction with the service provided. Staff had concerns that patient expectations are beyond what they can deliver. Hospitals give unrealistic expectations about the level of service in the community, eg, out of hours and respite care services. More respite and out of hours medication services are needed.
Pattison (2006)27To explore written guidelines and documents for critical care as evidence for the provision of EOL care in critical care
Assessment score=34.2
NAUKCritical discourse analysis of four key UK government critical care documentsLittle clear guidance about how to provide EOL care in critical care. Transitions to EOL care in critical care are often discussed within the context of a transition in physical location, which defines a very definite transition point. In addition, patients can deteriorate very quickly and the transition from curative to palliative may be rapid. Dying in critical care may infringe dignity, while transition away from interventions to comfort measures can improve dignity.
Pattison (2004)28Discussion paper on the integration of critical care and palliative care at EOL
No assessment score (non-empirical paper)
NAUKDiscussion paper drawing from several literature sourcesDiscussion of the difficulties faced when patients transition from curative treatment to palliative care. Transition must not emphasise a dichotomy between cure and palliative care. Nurses can potentially be excluded from decisions regarding a transition and may not be in control when the change of goal takes place. Transitions can be fragmented and comprehensive collaboration is required; patients must not be reduced to a prognostic probability. Consistent decision making is necessary, but each patient's case must be considered according to its own circumstances.
Wills (1978)26Case study summary of the first year of a Macmillan continuing care unit for patients with malignant disease
Assessment score=17.5
71 cancer patients referred to the unit in its first year of openingContinuing care unit at an acute hospital in West Sussex, EnglandCase study of routinely collected dataThe unit has the unique ability to coordinate with community and hospital based services. Importance of continuing care after cessation of active treatment acknowledged and achieved by regular home visits. As a consequence, good relationships were built up, inpatient duration was reduced, and more effective episode care was made possible.