Examining service delivery patterns before and after implementation of a direct-to-patient telehealth service providing medication abortion in Australia.

In August 2016, MSI Australia (MSIA) brought to scale a direct-to-patient telehealth medication abortion service. We used MSIA's patient management systems from January 2015 to December 2018 to assess changes in the proportion of abortion patients obtaining care after 13 weeks' gestation, proportion of abortion patients obtaining medication abortion versus procedural abortion and proportion of abortion patients from regional and remote versus metropolitan areas. The proportions of abortion patients obtaining care before 13 weeks' gestational duration and those from regional and remote residents did not change between the pre- and post-periods. We observed an increase in medication abortion use that was greater among those in regional and remote areas than those in metropolitan areas.

Impacts of an advance care planning intervention on close relationships.

OBJECTIVES: To examine how an advance care planning (ACP) intervention based on structured conversations impacts the relationship between patients with advanced cancer and their nominated Personal Representatives (PRs). METHODS: Within the ACTION research project, a qualitative study was carried out in 4 countries (Italy, United Kingdom, the Netherlands, and Slovenia) to explore the lived experience of engagement with the ACTION Respecting Choices® ACP intervention from the perspectives of patients and their PRs. A phenomenological approach was undertaken. RESULTS: Our findings show that taking part in the ACTION ACP intervention provides a communicative space for patients and their PRs to share their understanding and concerns about the illness and its consequences. In some cases, this may strengthen relationships by realigning patients' and PRs' understanding and expectations and affirming their mutual commitment and support. SIGNIFICANCE OF RESULTS: The most significant consequence of the ACP process in our study was the deepening of mutual understanding and relationship between some patients and PRs and the enhancement of their sense of mutuality and connectedness in the present. However, being a relational intervention, ACP may raise some challenging and distressing issues. The interpersonal dynamics of the discussion require skilled and careful professional facilitation.

Unintended Pregnancy and Abortion in the US Navy, 2016.

BACKGROUND: The unintended pregnancy rate in the US military is higher than among civilians. While 42% of unintended pregnancies end in abortion among civilian women, there are no data on the prevalence of abortion in the military overall or by service branch. OBJECTIVE: This analysis was conducted to estimate unintended pregnancy rates and the percentage of unintended pregnancies that resulted in abortion among active-duty US Navy members aged 44 years or younger reporting female gender in 2016. DESIGN: Cross-sectional survey data from the 2016 Navy Pregnancy and Parenthood Survey, collected from August to November 2016. PARTICIPANTS: Our sample included 3,423 active-duty US Navy members aged 44 years or younger reporting female gender, generated from a stratified random sample of 38% of all active-duty Navy women in pay grades E2-E9 and O1-O5 in 2016; the survey had a 20% response rate for females. MAIN MEASURES: We calculated pregnancy and unintended pregnancy rates, the percentage of pregnancies that were unintended, and the percentage of unintended pregnancies resulting in birth and abortion in the prior fiscal year. KEY RESULTS: Overall, the self-reported unintended pregnancy rate was 52 per 1,000 participants and 38.1% of pregnancies were unintended. The adjusted unintended pregnancy rate accounting for abortion underreporting was 68 per 1,000 participants. Unintended pregnancy rates were highest among individuals who were younger (aged 18-24) and in enlisted pay grades, compared to their counterparts. Six percent reported their unintended pregnancy resulted in abortion. Six respondents reported becoming pregnant while deployed; none of these pregnancies resulted in abortion. CONCLUSIONS: In this first study to report on abortion prevalence among US servicemembers, we found the proportion of unintended pregnancies resulting in abortion among a sample of US Navy members in 2016 was much lower than civilians, yet unintended pregnancy rates were higher.

Potential Impact of Telemedicine for Medication Abortion Policy and Programming Changes on Abortion Accessibility in the United States.

Objectives. To quantify the impact of telemedicine for medication abortion (TMAB) expansion or ban removal on abortion accessibility. Methods. We included 1091 facilities from the 2018 Advancing New Standards in Reproductive Health facility database and Planned Parenthood Web site, among which 241 did not offer abortion as sites for TMAB expansion. Accessibility was defined as the proportion of reproductive-aged women living within a 30-, 60-, or 90-minute drive time from an abortion-providing facility. We calculated accessibility differences between 3 scenarios: (1) facilities offering abortion in 2018 (reference), (2) the reference scenario in addition to all facilities in states without TMAB bans (TMAB expansion), and (3) all facilities (TMAB ban removal). We also stratified by state and urban-rural status. Results. In 2018, 65%, 81%, and 89% of women lived within a 30-, 60-, or 90-minute drive time from an abortion-providing facility, respectively. Expansion and ban removal expanded abortion accessibility relative to the current accessibility scenario (range: 1.25-5.66 percentage points). Women in rural blocks experienced greater increases in accessibility than those in urban blocks. Conclusions. TMAB program and policy changes could expand abortion accessibility to an additional 3.5 million reproductive-aged women. Public Health Implications. Our findings can inform where to invest resources to improve abortion accessibility. (Am J Public Health. 2022;112(8):1202-1211. https://doi.org/10.2105/AJPH.2022.306876).

Existential suffering in the day to day lives of those living with palliative care needs arising from chronic obstructive pulmonary disease (COPD): A systematic integrative literature review.

BACKGROUND: The impact of living with palliative care needs arising from COPD disrupts an individual's existential situation. However, no comprehensive synthesis of existing research has been published to determine the presentation and impact of existential suffering. AIM: To provide a synthesis of existing evidence on existential suffering for those living with palliative care needs arising from COPD. DESIGN: This is an integrative review paper, undertaken using the methodological approach developed by Soares and reported in accordance with PRISMA guidelines. Data analysis was undertaking using an integrated convergent synthesis approach. DATA SOURCES: Nine electronic databases were searched from April 2019 to December 2019. A second search was undertaken in January 2021 to identify recently published papers meeting the inclusion and exclusion criteria. No date restrictions were imposed. Only papers published in the English Language were considered for inclusion. Empirical research papers employing qualitative and/or quantitative methodologies and systematic literature reviews were included. Articles were accepted for inclusion if they discussed any component of existential suffering when living with COPD and palliative care needs. RESULTS: Thirty-five papers were included within this review comprising of seven systematic reviews, 10 quantitative studies and 18 qualitative studies. The following themes relating to existential suffering were found: Liminality, Lamented Life, Loss of Personal Liberty, Life meaning and Existential isolation. The absence of life meaning, and purpose was of most importance to participants. CONCLUSIONS: This review suggests existential suffering is present and of significant impact within the daily lives of those living with palliative care needs arising from COPD. The absence of life meaning has the most significant impact. Further research is required to understand the essential components of an intervention to address existential suffering for this patient group, to ensure holistic palliative care delivery.

How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial.

OBJECTIVE: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. METHODS: In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. RESULTS: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. CONCLUSION: Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice.

Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial.

BACKGROUND: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. METHODS AND FINDINGS: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals. CONCLUSIONS: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed. TRIAL REGISTRATION: ISRCTN registry ISRCTN63110516.

What are the psychological effects of mesothelioma on patients and their carers? A scoping review.

OBJECTIVE: Despite recent advances in research, malignant mesothelioma remains an incurable and devastating disease, typically bringing shock and emotional distress to patients and carers. Little research has addressed the psychological impact on either group. This scoping review examines the current state of evidence on the psychological effects of mesothelioma on patients and carers, and identifies areas for further research. METHODS: We searched PubMed, PsychINFO, CINAHL, the Cochrane Library and Web of Science for English-language peer-reviewed research articles published 1981 to 2019 reporting studies focussing on the psychological effects of mesothelioma on patients and carers. Following data extraction and quality appraisal, reflexive thematic analysis was used to identify themes. RESULTS: Seventeen articles met the inclusion criteria. Carers' experiences were generally amalgamated with patients'. Three themes were developed. The Passing of Time included the importance of timing of interventions; delays in the medical journey; awareness of different time-phases in mesothelioma; and uncertainty/certainty. Dealing with Difficult Feelings reflected ubiquitous negative emotions, feelings about identity and states of being and associated coping strategies. Craving Good Communication covered issues related to sharing of information and to positive/negative aspects of communication. CONCLUSIONS: Though limited, the evidence indicates that mesothelioma, with its high symptom-burden, incurability, rarity and asbestos-related causation, leads to complex and inter-relating psychological effects on patients and carers. These effects are both negative and positive. The sparse literature gives a partial picture and demonstrates an urgent need for more nuanced research. Studies exploring the experiences of specific groups are recommended, with particular attention required to carers.

Comparing the predictive ability of the Revised Minimum Dataset Mortality Risk Index (MMRI-R) with nurses' predictions of mortality among frail older people: a cohort study.

OBJECTIVES: to establish the accuracy of community nurses' predictions of mortality among older people with multiple long-term conditions, to compare these with a mortality rating index and to assess the incremental value of nurses' predictions to the prognostic tool. DESIGN: a prospective cohort study using questionnaires to gather clinical information about patients case managed by community nurses. Nurses estimated likelihood of mortality for each patient on a 5-point rating scale. The dataset was randomly split into derivation and validation cohorts. Cox proportional hazard models were used to estimate risk equations for the Revised Minimum Dataset Mortality Risk Index (MMRI-R) and nurses' predictions of mortality individually and combined. Measures of discrimination and calibration were calculated and compared within the validation cohort. SETTING: two NHS Trusts in England providing case-management services by nurses for frail older people with multiple long-term conditions. PARTICIPANTS: 867 patients on the caseload of 35 case-management nurses. 433 and 434 patients were assigned to the derivation and validation cohorts, respectively. Patients were followed up for 12 months. RESULTS: 249 patients died (28.72%). In the validation cohort, MMRI-R demonstrated good discrimination (Harrell's c-index 0.71) and nurses' predictions similar discrimination (Harrell's c-index 0.70). There was no evidence of superiority in performance of either method individually (P = 0.83) but the MMRI-R and nurses' predictions together were superior to nurses' predictions alone (P = 0.01). CONCLUSIONS: patient mortality is associated with higher MMRI-R scores and nurses' predictions of 12-month mortality. The MMRI-R enhanced nurses' predictions and may improve nurses' confidence in initiating anticipatory care interventions.

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review.

BACKGROUND: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. AIM: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base. DESIGN: Qualitative evidence synthesis using an integrative review approach and thematic analysis. DATA SOURCES: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken. RESULTS: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement. CONCLUSION: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.

Establishing key criteria to define and compare models of specialist palliative care: A mixed-methods study using qualitative interviews and Delphi survey.

BACKGROUND: Specialist palliative care services have various configurations of staff, processes and interventions, which determine how care is delivered. Currently, there is no consistent way to define and distinguish these different models of care. AIM: To identify the core components that characterise and differentiate existing models of specialist palliative care in the United Kingdom. DESIGN: Mixed-methods study: (1) semi-structured interviews to identify criteria, (2) two-round Delphi study to rank/refine criteria, and (3) structured interviews to test/refine criteria. SETTING/PARTICIPANTS: Specialist palliative care stakeholders from hospice inpatient, hospital advisory, and community settings. RESULTS: (1) Semi-structured interviews with 14 clinical leads, from eight UK organisations (five hospice inpatient units, two hospital advisory teams, five community teams), provided 34 preliminary criteria. (2) Delphi study: Round 1 (54 participants): thirty-four criteria presented, seven removed and seven added. Round 2 (30 participants): these 34 criteria were ranked with the 15 highest ranked criteria, including setting, type of care, size of service, diagnoses, disciplines, mode of care, types of interventions, 'out-of-hours' components (referrals, times, disciplines, mode of care, type of care), external education, use of measures, bereavement follow-up and complex grief provision. (3) Structured interviews with 21 UK service leads (six hospice inpatients, four hospital advisory and nine community teams) refined the criteria from (1) and (2), and provided four further contextual criteria (team purpose, funding, self-referral acceptance and discharge). CONCLUSION: In this innovative study, we derive 20 criteria to characterise and differentiate models of specialist palliative care - a major paradigm shift to enable accurate reporting and comparison in practice and research.

The Practice of Mutual Protection in the Care of Children with Palliative Care Needs: A Multiple Qualitative Case Study Approach from Jordan.

PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. DESIGN AND METHODS: This study employed a qualitative case study approach. It was conducted in three paediatric units in a Jordanian hospital. Each case comprised a child aged 1-12 years with a condition eligible for palliative care who received health care in one of these units, and their most involved carers (e.g. mother, physician and nurse). Two data collection methods were employed: participant observation and semi-structured interviews with three categories of participants: mothers, physicians, and nurses. Ethical approval was obtained from the hospital ethical review board. Written consent was obtained from all participants. RESULTS: Qualitative case studies were developed around 15 children (aged 1-12 years, nine were boys and six were girls, with varying diagnoses: renal disease, neurological conditions, and congenital heart defects). A total of 197 observational hours and 60 interviews were completed (15 mothers, 12 physicians and 21 nurses). The findings demonstrate that the practice of 'mutual protection' dominated communication between children, parents and clinical staff. Parents protected their children by disclosing only partial information about their disease, and by avoiding any information they thought would cause the child distress or loss of hope. Similarly, children avoided expression to their parents of their anxieties or fears, in order to protect them. In turn, nurses attempted to ensure observance of professional boundaries with children and mothers to avoid a sense of loss when a child died. CONCLUSION: The findings of the current study indicate that while open and honest communication between parents and children is generally recommended by literature, not all mothers agree with adopting open communication with their children concerning their illnesses. Therefore, any future intervention planned for them should respect parents' autonomy and decisions in addition to their cultural backgrounds. PRACTICAL IMPLICATIONS: The provision of ongoing education and specialised training for professionals to provide them with culturally sensitive skills in communication and provision of emotional support for children and parents is needed to improve clinical practice in healthcare settings with limited access to specialist palliative care such as Jordan.

Reappraising 'the good death' for populations in the age of ageing.

This is the second in an occasional series of paired commentaries in Age and Ageing, the Journal of the British Geriatrics Society and the Journal of the American Geriatrics Society (JAGS). The aim is to address issues of current significance and to foster dialogue and increased understanding between academics and clinicians working in comparative international settings. Both commentaries address the urgent need to improve palliative care for older people, with a critique of some stereotypes surrounding palliative care and the 'good death'. The companion commentary, published in JAGS, was written by Alexander Smith and Vyjeyanthi Periyakoil, and is grounded in their experience as academic clinicians (Smith AK, Periyakoil V. Should we bury 'The Good Death'? Journal of the American Geriatrics Society 2018; in press). In the present paper, we offer a perspective on the outcome and wider consequences of misalignment between current UK policy and aspirations for end of life care in relation to epidemiological trends and patient experience of death and dying.

The costs, resource use and cost-effectiveness of Clinical Nurse Specialist-led interventions for patients with palliative care needs: A systematic review of international evidence.

BACKGROUND: Patients with palliative care needs do not access specialist palliative care services according to their needs. Clinical Nurse Specialists working across a variety of fields are playing an increasingly important role in the care of such patients, but there is limited knowledge of the extent to which their interventions are cost-effective. OBJECTIVES: To present results from a systematic review of the international evidence on the costs, resource use and cost-effectiveness of Clinical Nurse Specialist-led interventions for patients with palliative care needs, defined as seriously ill patients and those with advanced disease or frailty who are unlikely to be cured, recover or stabilize. DESIGN: Systematic review following PRISMA methodology. DATA SOURCES: Medline, Embase, CINAHL and Cochrane Library up to 2015. Studies focusing on the outcomes of Clinical Nurse Specialist interventions for patients with palliative care needs, and including at least one economic outcome, were considered. The quality of studies was assessed using tools from the Joanna Briggs Institute. RESULTS: A total of 79 papers were included: 37 randomized controlled trials, 22 quasi-experimental studies, 7 service evaluations and other studies, and 13 economic analyses. The studies included a wide variety of interventions including clinical, support and education, as well as care coordination activities. The quality of the studies varied greatly. CONCLUSION: Clinical Nurse Specialist interventions may be effective in reducing specific resource use such as hospitalizations/re-hospitalizations/admissions, length of stay and health care costs. There is mixed evidence regarding their cost-effectiveness. Future studies should ensure that Clinical Nurse Specialists' roles and activities are clearly described and evaluated.

The involvement of cancer patients in the four stages of decision-making preceding continuous sedation until death: A qualitative study.

BACKGROUND: Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. AIM: To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. DESIGN: Qualitative case studies using interviews. SETTING/PARTICIPANTS: Interviews with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the United Kingdom and the Netherlands. RESULTS: We distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the United Kingdom), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and the Netherlands), the patient initiated the conversation and the physician's role was largely limited to evaluating if and when the medical criteria were met. CONCLUSION: Decision-making about continuous sedation until death goes through four stages and the involvement of the patient in the decision-making varies. Acknowledging the potential sensitivity of raising the issue of end-of-life sedation, we recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care.

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites.

BACKGROUND: The Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working; and flexible teamwork. Following a successful introduction, the model was implemented in six further sites across England. This article reports a mixed methods evaluation of the implementation across these 'Innovation Centres'. The evaluation aimed to assess the process and impact on staff, patients and carers of providing Macmillan Specialist Care at Home services across the six sites. METHODS: The study was set within a Realist Evaluation framework and used a longitudinal, mixed methods research design. Data collection over 15 months (2014-2016) included: Quantitative outcome measures - Palliative Performance Scale [PPS] and Palliative Prognostic Index [PPI] (n = 2711); Integrated Palliative Outcome Scales [IPOS] (n = 1157); Carers Support Needs Assessment Tool [CSNAT] (n = 241); Views of Informal Carers -Evaluation of Services [VOICES-SF] (n = 102); a custom-designed Service Data Tool [SDT] that gathered prospective data from each site (n = 88). Qualitative data methods included: focus groups with project team and staff (n = 32 groups with n = 190 participants), and, volunteers (n = 6 groups with n = 32 participants). Quantitative data were analysed using SPPS Vs. 21 and qualitative data was examined via thematic analysis. RESULTS: Comparison of findings across the six sites revealed the impact of their unique configurations on outcomes, compounded by variations in stage and mode of implementation. PPS, PPI and IPOS data revealed disparity in early referral criteria, complicated by contrasting interpretations of palliative care. The qualitative analysis, CSNAT and VOICES-SF data confirmed the value of the Macmillan model of care but uptake of specialist home-based clinical interventions was limited. The Macmillan brand engendered patient and carer confidence, bringing added value to existing services. Significant findings included better co-ordination of palliative care through project management and a single referral point and multi-disciplinary teamwork including leadership from consultants in palliative medicine, the role of health care assistants in rapid referral, and volunteer support. CONCLUSIONS: Macmillan Specialist Care at Home increases patient choice about place of death and enhances the quality of end of life experience. Clarification of key components is advocated to aid consistency of implementation across different sites and support future evaluative work.

Preregistration nursing students' experiences of a palliative care course in a resource-poor setting.

BACKGROUND: Palliative care education for non-specialist health professionals is an important strategy for widening access to palliative care. AIM: To describe Cameroonian nursing students' experiences and perceptions of the strengths and weaknesses of a palliative care course, with a view to refining the course. METHODS: Three focus groups were conducted with 23 students, and data were analysed thematically using the framework approach. RESULTS: The students reported connecting with their past personal and professional experiences in the care of patients with palliative care needs during the course. The main course strength reported was its use of a variety of interactive educational strategies, such as role plays, group discussions and case studies. The course's main reported weakness was the lack of supervised clinical practice in palliative care. CONCLUSION: The use of a variety of interactive educational strategies-including supervised clinical practice-is considered by nursing students as vital to enhancing learning in palliative care education. However, the lack of supervised palliative care clinical practice opportunities is a challenge in Cameroon.

Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care.

Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.

Lung cancer diagnosed following an emergency admission: exploring patient and carer perspectives on delay in seeking help.

PURPOSE: Compared to others, patients diagnosed with lung cancer following an emergency, unplanned admission to hospital (DFEA) have more advanced disease and poorer prognosis. Little is known about DFEA patients' beliefs about cancer and its symptoms or about their help-seeking behaviours prior to admission. METHODS: As part of a larger single-centre, prospective mixed-methods study conducted in one University hospital, we undertook qualitative interviews with patients DFEA and their carers to obtain their understanding of symptoms and experiences of trying to access healthcare services before admission to hospital. Interviews were recorded and transcribed. Framework analysis was employed. RESULTS: Thirteen patients and 10 carers plus 3 bereaved carers took part in interviews. Three patient/carer dyads were interviewed together. Participants spoke about their symptoms and why they did not seek help sooner. They described complex and nuanced experiences. Some (n = 12) had what they recalled as the wrong symptoms for lung cancer and attributed them either to a pre-existing condition or to ageing. In other cases (n = 9), patients or carers realised with hindsight that their symptoms were signs of lung cancer, but at the time had made other attributions to account for them. In some cases (n = 3), a sudden onset of symptoms was reported. Some GPs (n = 6) were also reported to have made incorrect attributions about cause. CONCLUSION: Late diagnosis meant that patients DFEA needed palliative support sooner after diagnosis than patients not DFEA. Professionals and lay people interpret health and illness experiences differently.

Communication practices that encourage and constrain shared decision making in health-care encounters: Systematic review of conversation analytic research.

BACKGROUND: Shared decision making (SDM) is generally treated as good practice in health-care interactions. Conversation analytic research has yielded detailed findings about decision making in health-care encounters. OBJECTIVE: To map decision making communication practices relevant to health-care outcomes in face-to-face interactions yielded by prior conversation analyses, and to examine their function in relation to SDM. SEARCH STRATEGY: We searched nine electronic databases (last search November 2016) and our own and other academics' collections. INCLUSION CRITERIA: Published conversation analyses (no restriction on publication dates) using recordings of health-care encounters in English where the patient (and/or companion) was present and where the data and analysis focused on health/illness-related decision making. DATA EXTRACTION AND SYNTHESIS: We extracted study characteristics, aims, findings relating to communication practices, how these functioned in relation to SDM, and internal/external validity issues. We synthesised findings aggregatively. RESULTS: Twenty-eight publications met the inclusion criteria. We sorted findings into 13 types of communication practices and organized these in relation to four elements of decision-making sequences: (i) broaching decision making; (ii) putting forward a course of action; (iii) committing or not (to the action put forward); and (iv) HCPs' responses to patients' resistance or withholding of commitment. Patients have limited opportunities to influence decision making. HCPs' practices may constrain or encourage this participation. CONCLUSIONS: Patients, companions and HCPs together treat and undertake decision making as shared, though to varying degrees. Even for non-negotiable treatment trajectories, the spirit of SDM can be invoked through practices that encourage participation (eg by bringing the patient towards shared understanding of the decision's rationale).