BackgroundThis study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients’ preferences for place of care (and death) were facilitated and documented.MethodsThe study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75); nominated relatives (N = 11; 7 women; 4 men; median age 65) and healthcare professionals (N = 15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study.ResultsPatients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions.ConclusionsThis study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.

PURPOSE:\ud The support needs of cancer patients vary according to the phase of their cancer journey. Recent developments in healthcare are such that the advanced cancer phase is increasingly experienced as a chronic illness phase, with consequent changes in patient support needs. Understanding these needs, and identifying areas of unmet need, can enable us to develop services that are more adequate to the task of supporting this population.\ud METHODS:\ud We conducted a systematic search of four electronic databases to identify studies examining the unmet needs of people living with advanced cancer. Relevant data were extracted and synthesised; meta-analyses were conducted to obtain pooled estimates for prevalence of needs.\ud RESULTS:\ud We identified 23 studies (4 qualitative) for inclusion. Unmet needs were identified across a broad range of domains, with greatest prevalence in informational (30-55 %), psychological (18-42 %), physical (17-48 %), and functional (17-37 %) domains. There was considerable heterogeneity amongst studies in terms of methods of assessment, coding and reporting of needs, respondent characteristics, and appraised study quality.\ud CONCLUSIONS:\ud Heterogeneity made it difficult to compare across studies and inflated confidence intervals for pooled estimates of prevalence-we need standardised and comprehensive approaches to assessment and reporting of unmet needs to further our understanding. Nonetheless, the review identified prominent needs across a range of (interacting) experiential domains. Moreover, by focussing on unmet needs for support, we were able to extrapolate potential implications for service development

This review demonstrates that nurse-led follow-up services are acceptable, appropriate and effective. Combined with use of the telephone, such services can be an efficient means of maintaining contact with a large client group, providing vital support to vulnerable patients during their move into aftercare and beyond.

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