Bella Vivat

End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care:

Background: Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. Aim: To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. Design: Thematic analysis of data collected using focus groups and interviews. Participants: Single homeless people (nu2009=u200928), formerly homeless people (nu2009=u200910), health- and social-care providers (nu2009=u200948), hostel staff (nu2009=u200930) and outreach staff (nu2009=u200910). Results: This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues. Conclusion: Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.

Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer

PurposeFor adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex psychosocial challenges of this developmental phase. In this review of the literature, we report the health-related quality of life (HRQoL) issues experienced by AYAs diagnosed with cancer and undergoing treatment.MethodsMEDLINE, EMBASE, CINAHL, PsychINFO and the Cochrane Library Databases were searched for publications reporting HRQoL of AYAs. Issues generated from interviews with AYAs or from responses to patient reported outcome measures (PROMs) were extracted.Results166 papers were reviewed in full and comprised 72 papers covering 69 primary studies, 49 measurement development or evaluation papers and 45 reviews. Of the 69 studies reviewed, 11 (16%) used interviews to elicit AYAs’ descriptions of HRQoL issues. The majority of the PROMs used in the studies represent adaptations of paediatric or adult measures. HRQoL issues were organised into the following categories: physical, cognitive, restricted activities, relationships with others, fertility, emotions, body image and spirituality/outlook on life.ConclusionThe HRQoL issues presented within this review are likely to be informative to health care professionals and AYAs. The extensive list of issues suggests that the impact of a cancer diagnosis and treatment during adolescence and young adulthood is widespread and reflects the complexities of this developmental phase.

Challenges to discussing palliative care with people experiencing homelessness: a qualitative study

Objectives To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care Setting Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services from three London boroughs. Participants People experiencing homelessness (n=28), formerly homeless people (n=10), health and social care providers (n=48), hostel staff (n=30) and outreach staff (n=10). Methods In this qualitative descriptive study, participants were recruited to interviews and focus groups across three London boroughs. Views and experiences of end-of-life care were explored with people with personal experience of homelessness, health and social care professionals and hostel and outreach staff. Saturation was reached when no new themes emerged from discussions. Results 28 focus groups and 10 individual interviews were conducted. Participants highlighted that conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Themes identified as challenges to such conversations included attitudes to death; the recovery focused nature of services for people experiencing homelessness; uncertainty regarding prognosis and place of care; and fear of negative impact. Conclusions This research highlights the need for a different approach to supporting people who are homeless and are experiencing advanced ill health, one that incorporates uncertainty and promotes well-being, dignity and choice. We propose parallel planning and mapping as a way of working with uncertainty. We acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless to be known and explored.

Spiritual well-being and quality of life among Icelanders receiving palliative care: data from Icelandic pilot-testing of a provisional measure of spiritual well-being from the European Organisation for Research and Treatment of Cancer.

Palliative care focuses on improving quality of life (QoL). This study examined the feasibility of the Icelandic version of a provisional European Organisation for Research and Treatment of Cancer (EORTC) measure of spiritual well-being (SWB), and explored the relationship between SWB and QoL for palliative care patients in Iceland. Instruments from the EORTC were used: the provisional measure of SWB, which was undergoing pilot-testing in Iceland, and the EORTC QLQ C15-PAL. The correlation between scores was examined and descriptive statistics were used. Structured interviews explored feasibility. Thirty persons participated with average age 72xa0years. Belief in God or a higher power had the mean 3.33 on a 1-4 scale and the mean for overall SWB was 5.73 on a 1-7 scale. The mean score for global health/QoL was 59.4, physical functioning 48.5 and emotional functioning 78.9 on a 0-100 scale. Overall QoL was positively correlated with SWB showing r(30)xa0=xa00.386, Pxa0=xa00.035. The participants found that answering the provisional EORTC QLQ-SWB prompted an emotional response and took the opportunity to discuss the subject. The provisional SWB measure was found relevant for the Icelandic context, and the study indicates that SWB and QoL are closely connected.

The international phase 4 validation study of the EORTC QLQ-SWB32: A stand-alone measure of spiritual well-being for people receiving palliative care for cancer

&NA; The EORTC Quality of Life Group has just completed the final phase (field‐testing and validation) of an international project to develop a stand‐alone measure of spiritual well‐being (SWB) for palliative cancer patients. Participants (n = 451)—from 14 countries on four continents; 54% female; 188 Christian; 50 Muslim; 156 with no religion—completed a provisional 36‐item measure of SWB plus the EORTC QLQ‐C15‐PAL (PAL), then took part in a structured debriefing interview. All items showed good score distribution across response categories. We assessed scale structure using principal component analysis and Rasch analysis, and explored construct validity, and convergent/divergent validity with the PAL. Twenty‐two items in four scoring scales (Relationship with Self, Relationships with Others, Relationship with Someone or Something Greater, and Existential) explained 53% of the variance. The measure also includes a global SWB item and nine other items. Scores on the PAL global quality‐of‐life item and Emotional Functioning scale weakly‐moderately correlated with scores on the global SWB item and two of the four SWB scales. This new validated 32‐item SWB measure addresses a distinct aspect of quality‐of‐life, and is now available for use in research and clinical practice, with a role as both a measurement and an intervention tool.

Which measures assessing quality of death and dying and satisfaction with care at the very end of life have been psychometrically validated? A systematic review

Introduction The very end of life can be associated with pain, anxiety and caregiver burden. Numerous measures seek to assess the quality of death and dying and satisfaction with care, but there is a lack of evidence and consensus on the best tools. Aims To identify all existing tools for assessing quality of death and dying and the quality of care and satisfaction with care at the very end of life, and systematically evaluate those which have been psychometrically validated. Method Four databases (Medline, Embase, Cinahl and Psycinfo) were searched in February 2016 using a combination of MeSH and free-text terms on end of life and satisfaction with care. Article titles, abstracts and full-text papers were reviewed to identify all papers reporting multi-item measures for assessing quality of death and dying and/or quality of care and satisfaction with care at the very end of life. Articles reporting on at least one psychometric investigation of the measures identified were then assessed for quality, using the COSMIN checklist (Mokkink, 2010). Results The initial search terms identified 4136 articles after excluding any duplicates. Seventy-seven papers, reporting 48 different measures, met the initial inclusion criteria. The most commonly used measures were the Quality Of Death and Dying (QODD; Patrick, 2001) and FAMCARE (Kristjanson, 1986). Both have been validated in a variety of cultural settings and participant groups. Conclusion Many measures assess quality of death and dying and satisfaction with care, but few have been thoroughly validated. QODD and FAMCARE are the best of those assessed. References Kristjanson LJ.Indicators of quality of palliative care from a family perspective. J Palliat Care 1986;1(2): 8–17 Mokkink LB, Terwee CB, Patrick DL, et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Quality of Life Research 2010;19(4):539–549 Patrick DL, Engelberg RA, Curtis JR.Evaluating the quality of dying and death. J Pain Symptom Manage 2001;22(3):717–726

Tools Measuring Quality of Death, Dying, and Care, Completed after Death: Systematic Review of Psychometric Properties

IntroductionMeasuring the quality of care at the end of life and/or the quality of dying and death can be challenging. Some measurement tools seek to assess the quality of care immediately prior to death; others retrospectively assess, following death, the quality of end-of-life care. The comparative evaluation of the properties and application of the various instruments has been limited.ObjectiveThis systematic review identified and critically appraised the psychometric properties and applicability of tools used after death.MethodWe conducted a systematic review according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines by systematically searching MEDLINE, Embase, CINAHL, and PsycINFO for relevant studies. We then appraised the psychometric properties and the quality of reporting of the psychometric properties of the identified tools using the COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) checklist. The protocol of this systematic review has been registered on PROSPERO (CRD42016047296).ResultsThe search identified 4751 studies. Of these, 33 met the inclusion criteria, reporting on the psychometric properties of 67 tools. These tools measured quality of care at the end of life (nu2009=u200935), quality of dying and death (nu2009=u200922), or both quality of care at the end of life and dying and death (nu2009=u200910). Most tools were completed by family carers (nu2009=u200957), with some also completed by healthcare professionals (HCPs) (nu2009=u20092) or just HCPs (nu2009=u20098). No single tool was found to be adequate across all the psychometric properties assessed. Two quality of care at the end of life tools—Care of the Dying Evaluation and Satisfaction with Care at the End of Life in Dementia—had strong psychometric properties in most respects. Two tools assessing quality of dying and death—the Quality of Dying and Death and the newly developed Staff Perception of End of Life Experience—had limited to moderate evidence of good psychometric properties. Two tools assessing both quality of care and quality of dying and death—the Quality Of Dying in Long-Term Care for cognitively intact populations and Good Death Inventory (Korean version)—had the best psychometric properties.ConclusionFour tools demonstrated some promise, but no single tool was consistent across all psychometric properties assessed. All tools identified would benefit from further psychometric testing.

52 What is current practice when using sedative medication at the end of life in a london hospice and teaching hospital? a mixed methods investigation for i-can-care

Introduction The I-CAN-CARE research programme explores care and assessment of dying patients in two under-researched areas: use of sedative medication at the end of life and prognostication. We present findings from an exploration of current practice relating to sedative use. Aims To explore the understandings of palliative care physicians and nurses in London regarding use of sedatives, and simultaneously audit deceased patient records for documented sedative use. Methods Focus groups with experienced palliative care physicians and nurses working in a London hospice or hospital/community-based palliative care were audio-recorded, transcribed, and analysed thematically. Deceased patient notes at both sites were audited independently, working backwards from December 2015 to obtain 25 patients at each site who had received continuous sedation at the end of life. Results Focus group participants (ten consultants/SpRs; seventeen senior nurses) all said they used sedative medication for managing agitation or distress; aiming for patients to be “comfortable”, “calm”, or “relaxed”, and selecting drugs and dosages as appropriate for patients’ individual needs, aiming to start with the lowest doses possible. None used structured observational tools to assess the effects of sedatives; strongly preferring clinical observation and judgement. The audit found usually low dosages: 10u2009mg/day median continuous dose midazolam; range 0.35–69.5, with written comments often addressing patients’ perceived comfort. Conclusions Focus group participants considered the role of sedative medication as primarily symptom management, emphasising individualised care, and using lowest dosages possible to achieve patient comfort, assessed using clinical judgement. Data from patient records corroborated these qualitative findings.

23 Talking about the future with homeless people with ill health: the need for a different conversation

Introduction Homelessness is associated with death at a young age, frequently related to physical and mental health problems complicated by drug or alcohol dependence (Stringfellow et al., 2015). Homeless people experience high symptom burden at the end-of-life (Tobey et al., 2016), yet access to palliative care services is limited (Shulman et al., In press). Conversations around future wishes and preferences with homeless people rarely take place. Aim To explore the barriers to conversations about the future with unwell homeless people and alternative approaches to these difficult conversations. Methods Focus groups and interviews were used to explore views and experiences around palliative care with currently and formerly homeless people (n=38), healthcare professionals (n=32), hostel and outreach staff (n=39) and drug and alcohol workers (n=4), from three London boroughs. Verbatim transcripts were analysed using thematic analysis. Results Three themes were identified relating to the challenges of discussing future care preferences: the recovery focused nature of services; uncertainty around when and how to have conversations; fear of negative impact on the homeless person and staff. Conclusions There is little acknowledgement, discussion or planning around the health needs of unwell homeless people who are at risk of dying, reducing opportunities for person-centred care. An approach that considers current and continuing care needs that accommodates potential improvements and deterioration is needed. Identifying those whose health is a concern, rather than those thought to be imminently dying may help to ensure the wishes and choices of homeless people are respected, if their health deteriorates. References . Shulman C, Hudson BF, Low J, Hewett N, Daley J, Kennedy P, Davis S, Brophy N, Howard D, Vivat B, Stone P, (In press). Homelessness at the end of life: A qualitative analysis of the barriers in providing palliative care for people who are homeless. Palliative Medicine. . Stringfellow EJ, Kim TW, Pollio DE, Kertesz SG. Primary care provider experience and social support among homeless-experienced persons with tri-morbidity. Addiction science & clinical practice2015;10:A64–A64. . Tobey M, Manasson J, Decarlo K, Ciraldo-maryniuk K, Gaeta JM, Wilson E. Homeless Individuals Approaching the End of Life: Symptoms and Attitudes. Journal of Pain and Symptom Management2016; In press.