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Background: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. Aim: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives. Design: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025). Data sources: Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP). Results: A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes. Conclusion: Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes. [ABSTRACT FROM AUTHOR]

Background: The impact of assisted hydration on symptoms and survival at the end of life is unclear. Little is known about optimal strategies for communicating and decision-making about this ethically complex topic. Hydration near end of life is known to be an important topic for family members, but conversations about assisted hydration occur infrequently despite guidance suggesting these should occur with all dying people. Aim: To explore the views and experiences of doctors experienced in end-of-life care regarding communicating with patients and families and making decisions about assisted hydration at the end of life. Design: Qualitative study involving framework analysis of data from semi-structured interviews. Setting/participants: Sixteen UK-based Geriatrics and Palliative Medicine doctors were recruited from hospitals, hospices and community services from October 2019 to October 2020. Results: Participants reported clinical, practical and ethical challenges associated with this topic. The hospital setting provides barriers to high-quality communication with dying patients and their families about assisted hydration, which may contribute to the low incidence of documented assisted hydration-related conversations. Workplace culture in some hospices may make truly individualised decision-making about this topic more difficult. Lack of inclusion of patients in decision-making about assisted hydration appears to be common practice. Conclusions: Proactive, routine discussion with dying people about hydration-related issues is indicated in all cases. There is room for debate regarding the limits of shared decision-making and the benefits of routine discussion of assisted hydration with all dying people. Clinicians have to navigate multiple barriers as they strive to provide individualised care. [ABSTRACT FROM AUTHOR]

Background: Lesbian, gay, and bisexual (LGB) older women have unmet communication needs around palliative and end-of-life care. Past research has found communication differences for LGB women patients. Consequently, older LGB women may experience healthcare communication barriers around advance care planning. Aim: To explore experiences of bereaved LGB older women to understand perspectives regarding advance care planning communication between clinicians, patients, and dyads. Design: Guided by queer gerontology as a theoretical framework, this qualitative descriptive study employed individual interviews with purposively recruited participants. Interviews were conducted in person using a semi structured protocol and analyzed using inductive thematic analysis. Setting/participants: Sixteen LGB women, age 60 years or older from across the United States who had lost a spouse/partner within the past 5 years. Results: Four main themes emerged from the transcripts, LGB older women: (1) experience unclear advance care planning communication and end-of-life care support from clinicians, (2) often avoid advance care planning discussions with spouse or partners, (3) lack of knowledge about palliative or end-of-life care, and (4) have more positive experiences when there is consistent communication with spouse or partner and clinicians during a spouse/partner's illness and end-of-life. Discussion: While certain experiences and opinions may reflect those of non-LGB older adults, novel advance care planning barriers exist for LGB older women. Greater understanding among clinicians is needed regarding advance care planning conversations with LGB dyads. We recommend four improvements in training, recognition, acceptance, and dyad-based communication interventions. [ABSTRACT FROM AUTHOR]

Background: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based approach. Aim: To explore how doctors involve families in the decision-making process regarding life-sustaining treatment on the neonatal, pediatric, and adult intensive care. Design: Exploratory inductive thematic analysis of 101 audio-recorded conversations. Setting/participants: One hundred four family members (61% female, 39% male) and 71 doctors (60% female, 40% male) of 36 patients (53% female, 47% male) from the neonatal, pediatric, and adult intensive care of a large university medical center participated. Results: We identified eight relevant and distinct communicative behaviors. Doctors' sequential communicative behaviors either reflected consistent approaches—a shared approach or a physician-driven approach—or reflected vacillating between both approaches. Doctors more often displayed a physician-driven or a vacillating approach than a shared approach, especially in the adult intensive care. Doctors did not verify whether their chosen approach matched the families' decision-making preferences. Conclusions: Even though tailoring doctors' communication to families' preferences is advocated, it does not seem to be integrated into actual practice. To allow for true tailoring, doctors' awareness regarding the impact of their communicative behaviors is key. Educational initiatives should focus especially on improving doctors' skills in tactfully exploring families' decision-making preferences and in mutually sharing knowledge, values, and treatment preferences. [ABSTRACT FROM AUTHOR]

Background: In 2020, the COVID-19 pandemic caused an acute risk of deterioration and dying for many, and an urgent need to start advance care planning. Aim: To explore how general practitioners (GPs) experienced discussing values, goals and preferences with patients during COVID-19. Design and setting: Qualitative research in general practice. Methods: Semi-structured interviews for which Dutch GPs were recruited via purposive sampling. Content analysis was used. Results: Fifteen GPs were interviewed. Six themes were identified: (i) urge of advance care planning, (ii) the GP's perceived role in it, (iii) preparations for it, (iv) (proactively) discussing it, (v) essentials for good communication and (vi) advance care planning in the (near) future. Calls for proactively discussing advance care planning in the media and in COVID-guidelines caused awareness of it's importance. GPs envisaged an important role for themselves in initiating it, especially with patients at risk to deteriorate or die from COVID-19. Timing advance care planning appeared difficult but crucial. The recommended digital way of communication was considered problematic due to missing nonverbal communication and difficulties in involving relatives. It was noted that admission to the ICU, which was hardly discussed before the COVID-19 pandemic, should remain a topic during advance care planning. Conclusion: The COVID-19 pandemic brought advance care planning into a new light, GPs were more experienced with discussing it and patients were more aware of their frailty. Because of the nearing 'grey wave', advance care planning should remain top priority. Therefore, it should be central in GP and post-academic training. [ABSTRACT FROM AUTHOR]

Background: Chronic obstructive pulmonary disease is associated with an uncertain trajectory, which challenges prognostication and means that most patients are not involved in advance care planning and do not receive palliative and end-of-life care. Aim: To understand the preferences of patients with chronic obstructive pulmonary disease for discussions about palliative and advance care planning with clinicians. Design: Semi-structured interviews were conducted with patients with chronic obstructive pulmonary disease. Data analysis was guided by principles of interpretative phenomenological analysis, of which symbolic interactionism and interpretation principles were employed throughout. Setting/Participants: A total of 33 British patients with chronic obstructive pulmonary disease at different stages of their disease trajectory were recruited. Results: Patients preferred to discuss palliative care with clinicians they perceived had greater levels of competency and authority in care and with whom they had an established relationship, usually a specialist. Patients favoured large amounts of information about treatments and care, but reported a lack of illness-related information and problems accessing appointments with clinicians. Consequently, patients deferred discussions to the future, usually once their condition had deteriorated significantly or planned to wait for clinicians to initiate conversations. This was not rooted in patient preferences, but related to clinicians' lack of time, absence of an established relationship and belief that appointments were for managing current symptoms, exacerbations and disease factors rather than future care and preferences. Conclusion: Different perceptions, competing priorities and service rationing inhibit patients from initiating early discussions with clinicians, so palliative care conversations should be initiated by respiratory-expert clinicians who know the patient well. After a sudden deterioration in the patient's condition may be a suitable time. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this. Aim: To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals. Design: Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability. Setting/participants: Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated. Results: A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool's content and wording. Conclusion: The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care. [ABSTRACT FROM AUTHOR]

Background: As modern medicine extends the life expectancy of patients with life-limiting illnesses and health system resource pressures intensify, palliative care physicians increasingly need to transfer stable patients from specialist palliative care units to nursing homes. The experience of palliative care physicians in decision-making and communicating with patients and families about the need for this transition is underexplored in the literature. Aim: This study aimed to explore the experiences of and communication techniques used by palliative care physicians as they consider and discuss nursing home placements for their patients. Design: A qualitative approach using semi-structured interviews was used. Interviews were transcribed verbatim and analysed using thematic analysis. Setting/participants: Purposive sampling was used to recruit 18 Australian palliative care physicians known for their interest or strength in communication skills across a range of palliative care settings. Results: Themes emerged from domains of physician experience (abandonment, systemic pressures, prognostic uncertainty, exacerbation of loss, and restoring resilience) and communication strategies (forecasting, checking in, provide context, and acknowledging grief). Conclusion: This study highlights the tension Australian palliative care physicians experience when transferring palliative care patients to nursing home and the complexity involved in decision-making. Physicians identified several communication strategies to engage patients and families to ease the transition. [ABSTRACT FROM AUTHOR]

Background: Discharge from inpatient palliative care units to long-term care can be challenging. In the United Kingdom, hospice inpatients move to a care home if they no longer require specialist palliative care and cannot be discharged home. There is evidence to suggest that patients and families find the prospect of such a move distressing. Aim: To investigate the issues that arise when patients are transferred from hospice to care home at the end of life, from the perspective of the hospice multidisciplinary team. Design: A qualitative study, using thematic analysis to formulate themes from focus group discussions with hospice staff. Setting/participants: Five focus groups were conducted with staff at five UK hospices. Participants included multidisciplinary team members involved in discharge decisions. All groups had representation from a senior nurse and doctor at the hospice, with group size between three and eight participants. All but one group included physiotherapists, occupational therapists and family support workers. Results: A major focus of group discussions concerned dilemmas around discharge. These included (1) ethical concerns (dilemmas around the decision, lack of patient autonomy and allocation of resources); (2) communication challenges; and (3) discrepancies between the ideals and realities of hospice palliative care. Conclusion: Hospice palliative care unit staff find discharging patients to care homes necessary, but often unsatisfactory for themselves and distressing for patients and relatives. Further research is needed to understand patients' experiences concerning moving to care homes for end of life care, in order that interventions can be implemented to mitigate this distress. [ABSTRACT FROM AUTHOR]

Background: General practitioners have overall responsibility for community care, including towards end of life. Current policy places generalists at the centre of palliative care provision. However, little is known about how patients and carers understand the general practitioner's role. Aims: To explore patient and carer perspectives of (1) the role of the general practitioner in providing palliative care to adult patients and (2) the facilitators and barriers to the general practitioner's capacity to fulfil this perceived role. Design: Systematic literature review and narrative synthesis. Data sources: Seven electronic databases (MEDLINE, Embase, PsycINFO, BNI, CINAHL, Cochrane and HMIC) were searched from inception to May 2017. Two reviewers independently screened papers at title, abstract and full-text stages. Grey literature, guideline, hand searches of five journals and reference list/citation searches of included papers were undertaken. Data were extracted, tabulated and synthesised using narrative, thematic analysis. Results: A total of 25 studies were included: 14 employed qualitative methods, 8 quantitative survey methods and 3 mixed-methods. Five key themes were identified: continuity of care, communication between primary and secondary care, contact and accessibility, communication between general practitioner and patient, and knowledge and competence. Conclusion: Although the terminology and context of general practice vary internationally, themes relating to the perceived role of general practitioners were consistent. General practitioners are considered well placed to provide palliative care due to their breadth of clinical responsibility, ongoing relationships with patients and families, and duty to visit patients at home and coordinate healthcare resources. These factors, valued by service users, should influence future practice and policy development. [ABSTRACT FROM AUTHOR]

Background: In many countries, achieving a home death represents a successful outcome from both a patient welfare and commissioning viewpoint. Significant variation exists in the proportion of home deaths achieved internationally, with many countries unable to meet the wishes of a large number of patients. This review builds on previous literature investigating factors influencing home death, synthesising qualitative research to supplement evidence that quantitative research in this field may have been unable to reach. Aim: To identify and understand the barriers and facilitators influencing death at home. Design: Meta-ethnography. Data sources: The review adhered to the PRISMA guidelines. A systematic literature search was conducted using five databases: PubMed, EMBASE, Ovid, CINAHL and PsycINFO. Databases were searched from 2006 to 2016. Empirical, UK-based qualitative studies were included for analysis. Results: A total of 38 articles were included for analysis. Seven overarching barriers were identified: lack of knowledge, skills and support among informal carers and healthcare professionals; informal carer and family burden; recognising death; inadequacy of processes such as advance care planning and discharge; as well as inherent patient difficulties, either due to the condition or social circumstances. Four overarching facilitators were observed: support for patients and healthcare professionals, skilled staff, coordination and effective communication. Conclusion: Future policies and clinical practice should develop measures to empower informal carers as well as emphasise earlier commencement of advance care planning. Best practice discharge should be recommended in addition to addressing remaining inequity to enable non-cancer patients greater access to palliative care services. [ABSTRACT FROM AUTHOR]

Background: Particularly at the end of life, treatment decisions should be shared and incorporate patients’ preferences. This study examines elaboration and preference construction. Aim: To examine the values, appraisals and preferences that patients express, as well as the oncologists’ communicative behaviour that facilitates these expressions in consultations on palliative chemotherapy. Design: Verbatim transcripts of audio-recorded consultations (n = 60) were analysed in MAXqda10 software. Two independent coders identified and categorised patients’ preference-related utterances and oncologists’ utterances, preceding and following such expressions. Setting/participants: Cancer patients (n = 41) with a median life expectancy <1 year and oncologists (n = 13) meeting with them in either initial or evaluative follow-up consultations. Results: Most frequent were patients’ expressions of treatment preferences (65% of consultations), often the simple wish to have treatment. Expressions of underlying values (48%) and appraisals of treatment aspects (50%) were less common. Most preference-related utterances concerned single statements (59%); in 51% of the consultations, true dialogue was observed. Preference-related utterances were least common in follow-up consultations concerning stable disease or response. Preference-related fragments were patient-initiated (42%), oncologist-facilitated (28%) or oncologist-invited (30%). Oncologist responses likely to trigger more preference-related talk were showing empathy, checking and probe questioning. Likely to reduce space were providing information, personally agreeing and neutral responses. Conclusion: Elaboration and joint preference construction is not standard practice in consultations on palliative chemotherapy. Oncologists may benefit from realising this and training skills that support this key step of shared decision making. Also, repeated shared decision making throughout the course of palliative chemotherapy should be stimulated. [ABSTRACT FROM AUTHOR]

The article presents information on a study on the role of doctors in helping dying cancer patients to achieve peace. The study aimed at understanding the features of a peaceful patient and preferences of patients about the role of the doctor in facilitating peace. The study was conducted on 15 dying cancer patients. It is concluded that communication from doctors on prognosis can promote spiritual well-being in cancer patients.

The article presents a study which explores the barriers and facilitators of family physicians' early identification of palliative care needs. The researchers conducted interviews with patients with diseases including heart failure, dementia and cancer, and used thematic analysis to derive themes covering barriers and facilitators. Results found barriers and facilitators relate to perceived role of family physician, communication styles and continuity of care.

The article discusses development of a model for breaking bad news to people with intellectual disabilities(IDs). The findings based on survey feedback for preliminary model was collected from 60 out of 109 participants including people with IDs, family carers, ID professionals, general health professionals and other stakeholders recommends to consider aspects of capacity, people and support to derive robust outcome measures for developing new model for breaking bad news to people with ID.

Palliative care exists in a variety of settings and palliative care teams form many guises within this. A Palliative Medicine Outpatient Clinic (PMOC) exists to meet the flexible provision of the needs and preferences of individuals within whatever care setting they reside. This explorative study used a qualitative methodology, capturing patients’ actual experience of care in preference to their satisfaction, as this is a more accurate measure of how and what patients judge as important in their healthcare. The overall themes in this paper point to the ‘value’ that patients perceived from attending the PMOC and how important the clinics were to clinicians that provided the care. The clinic facilitates much more than symptom control and here lies the challenge in how we convert the very positive experience of individuals into a language of outcome measures that captures the ‘essence’ of our work in this fiscally driven health economy. [ABSTRACT FROM AUTHOR]