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Background: Patients receiving palliative care often face psychological distress, which can be challenging for clinicians to manage. Therefore, reflexive and visual journaling can be used as powerful techniques for clinician selfreflection and personal development. These journals are a form of practice wisdom, providing insights into psychological health in palliative care. Aim: This study aims to describe how patients receiving palliative care experience psychological health, explore the meaning of a palliative care clinician's work and contribute to the understanding of psychological health in palliative care through the reflexive and visual journals of clinicians. Design: Using Gibb's reflective cycle as a framework for journaling, this study employs reflexive and visual journaling through the lenses of a psychiatrist and an art therapist. Journal data were analysed using a thematic analysis approach. Setting/participants: The two first authors journaled 107 clinical encounters and created 36 pieces of response art detailing encounters with patients and their families, and clinical conversations in two palliative care centres. Results: Patient attributes and the clinical environment were observed to influence psychological health in palliative care. The patient's ability to navigate dying, maintain personhood, exert resilience and experience satisfying relationships contribute to psychological health. A clinical environment comprising clinicians with holistic competencies, systems promoting interdisciplinary collaborations and a values-based culture that promotes patient centricity strengthens the delivery of psychological care. Conclusions: Good psychological health in palliative care extends beyond psychopathology and is influenced by the cardinal elements of being human, value systems and systemic elements in the therapeutic environment. [ABSTRACT FROM AUTHOR]

Background: Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce. Aim: We aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program. Design: Grounded Theory study using theoretical sampling. Data was collected by semi-structured interviews and analyzed following the principles of grounded theory coding and situational analysis. Setting: A total of 18 professionals from 12 different services in Munich and surroundings participated in the study: 8 physicians, 3 midwives, 2 nurses, 1 each pregnancy counselor, grief counselor, chaplain, clinical psychologist, and undertaker. Results: Several organizations provide support for affected parents, but inter-institutional communication is scarce. Due to the lack of a dedicated perinatal palliative care program, professionals make immense and partly unpaid efforts to support concerned parents. Providers experience "collateral beauty" in their work despite all the suffering and grief. This includes the development of a humble attitude and feelings of gratitude toward life, the feeling of having a meaningful task and professional as well as personal growth. Requirements for a structured perinatal palliative care program include: fostering peer support, ensuring regular supervision, and enhancing interdisciplinary exchange. Conclusions: Perinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals. [ABSTRACT FROM AUTHOR]

Background: Palliative care has the potential to address significant unmet needs in people with Parkinson's disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. Aim: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease. Design: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding. Setting/Participants: Twenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinson's disease and related disorders conducted at nine sites. Results: Benefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team. Conclusions: Clinicians caring for people with Parkinson's disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams. [ABSTRACT FROM AUTHOR]

Background: Paramedic practice is diversifying to accommodate evolving global health trends, including community paramedicine models and growing expertise in palliative and end-of-life care. However, despite palliative care specific clinical practice guidelines and existing training, paramedics still lack the skills, confidence and clinical support to provide this type of care. Aim: To elicit paramedics', palliative care doctors and nurses', general practitioners', residential aged care nurses' and bereaved families and carers' experiences, perspectives, and attitudes on the role, barriers and enablers of paramedics delivering palliative and end-of-life care in community-based settings. Design: A qualitative study employing reflexive thematic analysis of data collected from semi-structured online interviews was utilised. Setting/participants: A purposive sample of 50 stakeholders from all Australian jurisdictions participated. Results: Five themes were identified: positioning the paramedic (a dichotomy between the life saver and community responder); creating an identity (the trusted clinician in a crisis), fear and threat (feeling afraid of caring for the dying), permission to care (seeking consent to take a palliative approach) and the harsh reality (navigating the role in a limiting and siloed environment). Conclusion: Paramedics were perceived to have a revered public identity, shaped by their ability to fix a crisis. However, paramedics and other health professionals also expressed fear and vulnerability when taking a palliative approach to care. Paramedics may require consent to move beyond a culture of curative care, yet all participant groups recognised their important adjunct role to support community-based palliative care. [ABSTRACT FROM AUTHOR]

Background: Placebo-controlled trials can provide evidence to inform end-of-life care, but it is contested whether asking dying patients to participate in such trials is morally justifiable. To investigate the experiences of these patients is even more complex. Therefore, proxy assessments by relatives can be a good alternative. Aim: To explore the experience of participating in a placebo-controlled trial at the end of life from the perspective of bereaved relatives. Design: Mixed-method study, including questionnaires and interviews. Setting/participants: The SILENCE study was a randomized, double-blind, placebo-controlled trial on the efficacy of scopolamine butylbromide to prevent death rattle. The study was performed in six inpatient hospice facilities. Patients were asked to participate at admission in the hospice. Three months after the death of the patient, bereaved relatives were invited to fill in a questionnaire and to participate in an interview. One hundred four questionnaires were completed and 17 relatives were interviewed. Results: Fourteen percent of the relatives participating in the questionnaire study considered the participation of their loved one in research a bit burdensome and 10% considered it a bit stressful. Seventeen percent thought that it was a bit burdensome for the patient. Eighty-three percent considered participation in this type of research (very) valuable. The in-depth interviews showed that patients and relatives jointly decided about participation in this double-blind placebo-controlled medication trial. Relatives generally respected and felt proud about patients' decision to participate. Conclusion: The large majority of bereaved relatives experienced the participation of their dying love one in this RCT as acceptable and valuable. [ABSTRACT FROM AUTHOR]

Background: Healthcare professionals report challenges in supporting dying patients who have dependent children. These parents are often uncertain how to meet the needs of their children and require appropriate support from professionals. There is limited evidence based guidance for professionals around this issue, which is informed by the views and experiences of children themselves. Aim: To develop an understanding of the perspective of children on living with parental life-limiting illness and inform recommendations for healthcare professionals. Design: Qualitative semi-structured interviews were conducted, with thematic analysis of the data. Setting/participants: A diverse sample of 32 children aged 6–17, whose parent was living with life-limiting illness, were recruited from across the United Kingdom. Results: Despite the challenges of living with a parent with a life-limiting illness, the children display agency in their response. The children: feel a responsibility to look after their family; negotiate a relationship with healthcare; employ strategies to maintain some normality; and ensure that the inevitable sadness does not become overwhelming. Conclusions: Five recommendations for healthcare professionals were developed from the findings. Clinicians should encourage dying parents to: (1) acknowledge the agency of children; (2) recognise children's caregiving roles; (3) engender children's trust in healthcare; (4) maintain some normality; and (5) discuss emotions with their children. Implementing these recommendations will assist parents with a life-limiting illness to provide evidence-based support to their dependent children. [ABSTRACT FROM AUTHOR]

Background: Palliative care educators should incorporate strategies that enhance application into practice by learners. Commitment-to-change is an approach to reinforce learning and encourage application into practice; immediately post-course learners commit to making changes in their practices as a result of participating in the course ("statements") and then several weeks or months later are prompted to reflect on their commitments ("reflections"). Aim: Explore if and how learners implemented into practice what they learned in a palliative care course, using commitment-to-change reflections. Design: Secondary analysis of post-course commitment statements and 4-months post-course commitment reflections submitted online by learners who participated in Pallium Canada's interprofessional, 2-day, Learning Essential Approaches to Palliative Care (LEAP) Core courses. Setting/participants: Primary care providers from across Canada and different profession who attended LEAP Core courses from 1 April 2015 to 31 March 2017. Results: About 1063 of 4636 learners (22.9%) who participated in the 244 courses delivered during the study period submitted a total of 4250 reflections 4 months post-course. Of these commitments, 3081 (72.5%) were implemented. The most common implemented commitments related to initiating palliative care early across diseases, pain and symptom management, use of clinical instruments, advance care planning, and interprofessional collaboration. Impact extended to patients, services, and colleagues. Barriers to implementation into practice included lack of time, and system-level factors such as lack of support by managers and untrained colleagues. Conclusions: Examples of benefits to patients, families, services, colleagues, and themselves were described as a result of participating in the courses. [ABSTRACT FROM AUTHOR]

Background: Palliative patients frequently express a desire to die. Health professionals report uncertainty regarding potential risks of addressing it. Aim: We aim to evaluate effects of desire to die-conversations on palliative patients. Design: Within a prospective mixed-methods cohort study, we trained health professionals in dealing with desire to die. Afterwards, they held conversations about it with patients. Effects on depressiveness, hopelessness, wish to hasten death, death anxiety, patient-health professional-relationship, and will to live were evaluated at baseline (t0), 1 (t1), and 6 weeks afterwards (t2). Results were analyzed descriptively. Setting/participants: From April 2018 to March 2020, 43 health professionals asked 173 patients from all stationary and ambulatory palliative care settings (within 80 km radius) for participation. Complete assessments were obtained from n = 85 (t0), n = 64 (t1), and n = 46 (t2). Results: At t1, patients scored significantly lower on depressiveness (med = 8, M = 8.1, SD = 5.4) than at t0 (med = 9.5, M = 10.5, SD = 5.8) with Z = −3.220, p = 0.001 and Cohen's d = 0.42. This was due to medium-severely depressed patients: At t1, their depressiveness scores decreased significantly (med = 9, M = 9.8; SD = 5.1) compared to t0 (med = 14, M = 15.2; SD = 3.9) with Z = −3.730, p ⩽ 0.000 and Cohen's d = 1.2, but others' did not. All other outcomes showed positive descriptive trends. Conclusions: Desire to die-conversations through trained health professionals do not harm palliative patients. Results cautiously suggest temporary improvement. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic has posed significant challenges for healthcare systems to meet patients' and families' complex care needs, including spiritual care needs. Little data are available about spiritual care delivery in light of the pandemic. Aim: This study examined the impact of COVID-19 on spiritual care by healthcare chaplains in the United States. Design: An online survey of 563 board-certified chaplains was conducted from March to July 2020. The survey, designed to identify chaplains' roles in facilitating conversations about goals of care, included an open-ended question asking how COVID-19 affected chaplaincy practices; 236 chaplains responded. Quantitative data and written qualitative responses were analyzed using descriptive analysis and content analysis, respectively. Setting/participants: Majority of participants were white (88%), female (59%), Protestant (53%), and employed full time (86%). Almost half were working in community hospitals (45%) and designated to one or more special units (48%) including ICU, palliative care, and oncology. Results: Three major themes emerged from chaplains' qualitative responses: (1) COVID-19—related risk mitigation and operational changes; (2) impact of social distancing guidelines; and (3) increased need for and provision of psychosocial and spiritual support. Conclusions: Chaplains reported that COVID-19 challenges contributed to greater social isolation, and mental health concerns for patients, families, and healthcare staff, and substantially changed the way healthcare chaplains provided spiritual care. With evolving healthcare contexts, developing safer, more creative modes of spiritual care delivery while offering systematic support for chaplains can help meet the increasing psychosocial and spiritual needs of patients, families, and healthcare team members. [ABSTRACT FROM AUTHOR]

Background: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. Aim: To explore the views and experiences of care home staff and palliative care specialists on end of life care in care homes and understand how care home settings affected palliative care provision in England and Australia. Design/participants: Eight focus groups in Australia and England with care home staff and palliative care specialists (n = 49). Reflexive thematic analysis was undertaken. Findings: Australian participants reported collaboration between care home staff, visiting professions and family members though case conferences. English participants discussed resident-focussed involvement from specialists that was less formally organised. Negotiating roles and responsibilities in end of life care; the importance of relationships to overcome deficiencies in formal processes; and the legitimacy and authority of advance care planning at times of crisis were recurring themes. The organisation and embedding of end of life care in processes and practices of care homes differed; this closely linked to care home procedures in Australia but was less apparent in England. Conclusion: In both countries, partnership working was recognised and valued as key to effective palliative care. Work that enables care home staff to identify challenges with visiting professionals, such as agreeing priorities for care and negotiating their shared responsibilities, may lead to context-sensitive, sustainable solutions. [ABSTRACT FROM AUTHOR]

Background: Specialised palliative home-care supports patients with life-limiting diseases in their familiar surroundings. The number of palliative care teams and patients being cared for is increasing worldwide. To assess and improve quality, it is needed to understand, how specialised palliative home-care can be provided successfully. For this purpose we examined the views of all involved stakeholders. Aim: To identify the issues that patients, their relatives and involved health professionals view as important in ensuring the success of specialised palliative home-care. Design: We used a qualitative design based on participant observations, interviews and focus groups following the principles of a Grounded Theory approach. Setting/participants: All specialised palliative home-care teams (n = 22) caring for adults in Hesse, Germany, participated. We conducted participant observations (n = 5), and interviewed patients (n = 14), relatives (n = 14) and health professionals working in or collaborating with specialised palliative home-care (n = 30). We also conducted focus groups (n = 4) with health professionals including a member check. Results: Successful specialised palliative home-care needs to treat complex symptoms, and provide comprehensive care including organisation of care, involving relatives and addressing issues of death and dying. Sense of security for patients and relatives is key to enable care at home. Care delivery preferences include a focus on the quality of relationships, respect for individuality and the facilitation of self-determination. Conclusions: Consideration of the identified key issues can help to ensure successful specialised palliative home-care. Knowledge of these should also be considered when researching and assessing quality of care. Trial registration: German Clinical Trials Register DRKS-ID: DRKS00012421; http://www.germanctr.de. [ABSTRACT FROM AUTHOR]