Caring for depression in the dying is complex and challenging – survey of palliative physicians

Background Depression is prevalent in people with very poor prognoses (days to weeks). Clinical practices and perceptions of palliative physicians towards depression care have not been characterised in this setting. The objective of this study was to characterise current palliative clinicians’ reported practices and perceptions in depression screening, assessment and management in the very poor prognosis setting. Methods In this cross-sectional cohort study, 72 palliative physicians and 32 psychiatrists were recruited from Australian and New Zealand Society of Palliative Medicine and Royal Australian and New Zealand College of Psychiatrists between February and July 2020 using a 23-item anonymous online survey. Results Only palliative physicians results were reported due to poor psychiatry representation. Palliative physicians perceived depression care in this setting to be complex and challenging. 40.0% reported screening for depression. All experienced uncertainty when assessing depression aetiology. Approaches to somatic symptom assessment varied. Physicians were generally less likely to intervene for depression than in the better prognosis setting. Most reported barriers to care included the perceived lack of rapidly effective therapeutic options (77.3%), concerns of patient burden and intolerance (71.2%), and the complexity in diagnostic differentiation (53.0%). 66.7% desired better collaboration between palliative care and psychiatry. Conclusions Palliative physicians perceived depression care in patients with very poor prognoses to be complex and challenging. The lack of screening, variations in assessment approaches, and the reduced likelihood of intervening in comparison to the better prognosis setting necessitate better collaboration between palliative care and psychiatry in service delivery, training and research.

National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany - study protocol of a mixed-methods project

Background In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Numbers of COVID-19 related deaths have recently increased demanding more palliative care input. Also, the pandemic impacts on palliative care for non-COVID-19 patients. Strategies on the care for seriously ill and dying people in pandemic times are lacking. Therefore, the program ‘Palliative care in Pandemics’ (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON). Methods Mixed-methods project including ten work packages conducting (online) surveys and qualitative interviews to explore and describe i) experiences and burden of patients (with/without SARS-CoV-2 infection) and their relatives, ii) experiences, challenges and potential solutions of health care professionals, stakeholders and decision makers during the SARS-CoV-2 pandemic. The work package results inform the development of a consensus-based guidance. In addition, best practice examples and relevant literature will be collected and variables for data collection identified. Discussion For a future “pandemic preparedness” national and international recommendations and concepts for the care of severely ill and dying people are necessary considering both generalist and specialist palliative care in the home care and inpatient setting.

Dignity therapy intervention fidelity: a cross-sectional descriptive study with older adult outpatients with cancer

Objectives Intervention fidelity is imperative to ensure confidence in study results and intervention replication in research and clinical settings. Like many brief protocol psychotherapies, Dignity Therapy lacks sufficient evidence of intervention fidelity. To overcome this gap, our study purpose was to examine intervention fidelity among therapists trained with a systematized training protocol. Methods For preliminary fidelity evaluation in a large multi-site stepped wedge randomized controlled trial, we analyzed 46 early transcripts of interviews from 10 therapists (7 female; 7 White, 3 Black). Each transcript was evaluated with the Revised Dignity Therapy Adherence Checklist for consistency with the Dignity Therapy protocol in terms of its Process (15 dichotomous items) and Core Principles (6 Likert-type items). A second rater independently coded 26% of the transcripts to assess interrater reliability. Results Each therapist conducted 2 to 10 interviews. For the 46 scored transcripts, the mean Process score was 12.4/15 (SD = 1.2), and the mean Core Principles score was 9.9/12 (SD = 1.8) with 70% of the transcripts at or above the 80% fidelity criterion. Interrater reliability (Cohen’s kappa and weighted kappa) for all Adherence Checklist items ranged between .75 and 1.0. For the Core Principles items, Cronbach’s alpha was .92. Conclusions Preliminary findings indicate that fidelity to Dignity Therapy delivery was acceptable for most transcripts and provide insights for improving consistency of intervention delivery. The systematized training protocol and ongoing monitoring with the fidelity audit tool will facilitate consistent intervention delivery and add to the literature about fidelity monitoring for brief protocol psychotherapeutic interventions.

Discussing patient preferences for levels of life-sustaining treatment: development and pilot testing of a Danish POLST form

Background Medically frail and/or chronically ill patients are often admitted to Danish hospitals without documentation of patient preferences. This may lead to inappropriate care. Modelled on the American Physician Orders for Life-Sustaining Treatment (POLST) form, the purpose of the study was to develop and pilot test a Danish POLST form to ensure that patients’ preferences for levels of life-sustaining treatment are known and documented. Methods The study was a mixed methods study. In the initial phase, a Danish POLST form was developed on the basis of literature and recommendations from the National POLST organisation in the US. A pilot test of the Danish POLST form was conducted in hospital wards, general practitioners’ clinics, and nursing homes. Patients were eligible for inclusion if death was assessed as likely within 12 months. The patient and his/her physician engaged in a conversation where patient values, beliefs, goals for care, diagnosis, prognosis, and treatment alternatives were discussed. The POLST form was completed based on the patient’s values and preferences. Family members and/or nursing staff could participate. Participants’ assessments of the POLST form were evaluated using questionnaires, and in-depth interviews were conducted to explore experiences with the POLST form and the conversation. Results In total, 25 patients participated, 45 questionnaires were completed and 14 interviews were conducted. Most participants found the POLST form readable and understandable, and 93% found the POLST form usable to a high or very high degree for discussing preferences regarding life-sustaining treatment. Three themes emerged from the interviews: (a) an understandable document is essential for the conversation, (b) handling and discussing wishes, and (c) significance for the future. Conclusion The Danish version of the POLST form is assessed by patients, families, physicians, and nurses as a useful model for obtaining and documenting Danish patients’ preferences for life-sustaining treatment. However, this needs to be confirmed in a larger-scale study.

Healthcare providers’ perception of advance care planning for patients with critical illnesses in acute-care hospitals: a cross-sectional study

Background In acute-care hospitals, patients treated in an ICU for surgical reasons or sudden deterioration are treated in an outpatient ward, ICU, and other multiple departments. It is unclear how healthcare providers are initiating advance care planning (ACP) for such patients and assisting them with it. The purpose of this study is to clarify healthcare providers’ perceptions of the ACP support provided to patients receiving critical care in acute-care hospitals. Methods A cross-sectional study was conducted using questionnaires. In this study, 400 acute-care hospitals with ICUs in Japan were randomly selected, and 1490 subjects, including intensivists, surgeons, ICU nurses, surgical floor nurses, and surgical outpatient nurses, participated. Survey items examined whether ICU patients received ACP support, the participants’ degree of confidence in providing ACP support, the patients’ treatment preferences, and the decision-making process, and whether any discussion was conducted on change of values. Results Responses were obtained from 598 participants from 157 hospitals, 41.4% of which reportedly supported ACP provision to ICU patients. The subjects with the highest level of ACP understanding were surgeons (45.8%), and differences in understanding were observed across specialties (P < 0.001). Among the respondents, physicians and nurses expressed high levels of confidence in providing ACP support to patients requiring critical care. However, 15.2% of all the subjects mentioned that they would not attempt to resuscitate the patients. In addition, 25.7% of the participants handed over patients’ values to other departments or hospitals, whereas 25.3% handed over the decision-making process. Conclusions Among the participating hospitals, 40% provided ACP support to patients receiving critical care. The low number is possibly because support providers lack understanding of the content of patients’ ACP or about how to support and use ACP. Second, it is sometimes too late to start providing ACP support after ICU admission. Third, healthcare providers differ in their perception of ACP, widely considered an ambiguous concept. Finally, in acute-care hospitals with different healthcare settings, it is necessary to confirm and integrate the changes in feelings and thoughts of patients.

Preference for initiation of end-of-life care discussion in Indonesia: a quantitative study

Background Initiating discussion about death and dying is often considered a difficult topic for healthcare providers, thus there is a need for further research to understand this area, particularly in developing countries. The aim of this study was to describe preferences for the initiation of end-of-life care discussions in Indonesia, comparing the general population and health care professionals. Methods This cross-sectional, descriptive study analysed quantitative data from 368 respondents to an online questionnaire (255 general population (69%); 113 healthcare professionals (31%)) utilizing consecutive sampling and snowball sampling methods. Results Overall, most respondents (80%) stated that they would like to discuss end-of-life issues with a healthcare professional in the case of terminal illness. This was more marked amongst healthcare professionals compared with the general population (94% vs. 75%, respectively, p < 0,001). The preferred time for discussion was at first diagnosis (68% general population, 52% healthcare professionals, p = 0.017) and the preferred person to start the discussion was the doctor (59% general population, 71% healthcare professionals, p = 0.036). Fewer respondents wanted to know about prognosis compared to diagnosis (overall 76% v 93% respectively). Conclusion Doctors have vital role in end-of-life care discussion, and attempts should be made to encourage physicians to initiate these conversations and respond to patient’s requests when needed. These findings contribute to the existing body of knowledge in this area of practice, with focus on a developing country. The role of socio-cultural influences on these conversations warrants further research, in order to develop practical resources to support clinicians to appropriately conduct end-of-life care discussions with their patients and to provide data for policymakers to develop services.

Verbalizing spiritual needs in palliative care: a qualitative interview study on verbal and non-verbal communication in two Danish hospices

Denmark is considered one of the World’s most secular societies, and spiritual matters are rarely verbalized in public. Patients report that their spiritual needs are not cared for sufficiently. For studying spiritual care and communication, twelve patients admitted to two Danish hospices were interviewed. Verbal and non-verbal communication between patients and healthcare professionals were identified and analysed. Methodically, the Interpretative Phenomenological Analysis was used, and the findings were discussed through the lenses of existential psychology as well as philosophy and theory of caring sciences. Three themes were identified: 1. When death becomes present, 2. Direction of the initiative, and 3. Bodily presence and non-verbal communication. The encounter between patient and healthcare professional is greatly influenced by sensing, decoding, and interpretation. A perceived connection between the patient and the healthcare professional is of great importance as to how the patient experiences the relationship with the healthcare professional.The patient’s perception and the patient’s bodily experience of the healthcare professional are crucial to whether the patient opens up to the healthcare professional about thoughts and needs of a spiritual nature and initiates a conversation hereabout. In this way we found three dynamically connected movements toward spiritual care: 1. From secular to spiritual aspects of care 2. From bodily, sensory to verbal aspects of spiritual care and 3. From biomedical to spiritual communication and care. Thus, the non-verbal dimension becomes a prerequisite for the verbal dimension of spiritual communication to develop and unfold. The behaviour of the healthcare professionals, characterised by the way they move physically and the way they touch the patient, was found to be just as important as verbal conversation when it comes to spiritual care. The healthcare professional can create a connection to the patient through bodily and relational presence. Furthermore, the healthcare professionals should let their sensing and impressions guide them when meeting the patient in dialog about matters of a spiritual nature. Their perception of the patient and non-verbal communication are a prerequisite for being able to meet patient’s spiritual needs with care and verbal communication.

Being a safe place: a qualitative study exploring perceptions as to how a rural community hospice could respond to enactment of voluntary assisted dying legislation

Background There is a lack of research to guide the implementation of voluntary assisted dying legislation within a hospice setting. Furthermore, there is limited published information related to the expectations of the community and staff to assist decision making regarding voluntary assisted dying in a community hospice. The aim of this study was to explore the expectations of staff, volunteers and members of the community as how a rural Australian community hospice could respond in relation to imminent enactment of Voluntary Assisted Dying legislation. Methods A total of 63 Hospice staff and volunteers and community members participated in 11 workshops. This qualitative study used the interpretive description method to analyse the workshop transcripts. Results While there was not a consensus view on community expectation, there was agreement among the participants for respect for a patient’s individuality and choices. Furthermore, care offered in hospice needs to remain non-judgemental and patient focused regardless of whether voluntary assisted dying policy was implemented or not. Both opportunities and risks associated with implementation were identified by the participants. Conclusion There was common ground around the respect for the dying person and the ideal of a “safe place” despite opposing views on what this may mean in practice. There is a need for clarity in organisational responses around policy, risk management, education, and staff support.

What to consider when implementing a tool for timely recognition of palliative care needs in heart failure: a context-based qualitative study

Background Needs assessment tools can facilitate healthcare professionals in timely recognition of palliative care needs. Despite the increased attention for implementation of such tools, most studies provide little or no attention to the context of implementation. The aim of this study was to explore factors that contribute positively and negatively to timely screening of palliative care needs in advanced chronic heart failure. Methods Qualitative study using individual interviews and focus groups with healthcare professionals. The data were analysed using a deductive approach. The Consolidated Framework for Implementation Research was used to conceptualise the contextual factors. Results Twenty nine healthcare professionals with different backgrounds and working in heart failure care in the Southern and Eastern parts of the Netherlands participated. Several factors were perceived to play a role, such as perception and knowledge about palliative care, awareness of palliative care needs in advanced chronic heart failure, perceived difficulty when and how to start palliative care, limited acceptance to treatment boundaries in cardiology, limited communication and collaboration between healthcare professionals, and need for education and increased attention for palliative care in advanced chronic heart failure guidelines. Conclusions This study clarified critical factors targeting patients, healthcare professionals, organisations to implement a needs assessment tool for timely recognition of palliative care needs in the context of advanced chronic heart failure. A multifaceted implementation strategy is needed which has attention for education, patient empowerment, interdisciplinary collaboration, identification of local champions, chronic heart failure specific guidelines and culture.

Effect of chocolate on older patients with cancer in palliative care: a randomised controlled study

Background Older advanced stage cancer patients, with changes in nutritional status, represent an important demand for palliative care. The aim was to determine the effects of 4 weeks of chocolate consumption on the nutritional status of older cancer patients in palliative care. Methods Older cancer patients in palliative care with ambulatory (n = 46) monitoring were randomized to control (CG, n = 15), intervention with 55% cocoa chocolate (IG1, n = 16) and intervention with white chocolate (IG2, n = 15) groups and evaluated before and after 4 weeks for nutritional status (primary outcome), evaluated by the Mini Nutritional Assessment tool (MNA). Food consumption, anthropometry, body composition, laboratory parameters and quality of life (QL) with the European Organization for the Research and Treatment of Cancer instrument were also evaluated. Results IG1 progressed with increased screening (estimated difference [95% CI]: − 1.3 [− 2.2;-0.4], p < 0.01), and nutritional (estimated difference [95% CI]: − 1.3 [− 2.5;-0.1], p = 0.04) scores on the MNA, with no change in anthropometry and body composition. Regarding antioxidant capacity, reduced glutathione levels increased (estimated difference [95% CI]: − 0.8 [− 1.6;-0.02], p = 0.04) and malondealdehyde levels decreased in IG2 (estimated difference [95% CI]:+ 4.9 [+ 0.7;+ 9.1], p = 0.02). Regarding QL, functionality improved in IG1, with higher score in the functional domain (estimated difference [95% CI]:-7.0 [− 13.3;-0.7], p = 0.03). Conclusions The consumption of chocolate with a greater cocoa content may contribute to the improvement of the nutritional status and functionality among older cancer patients in palliative care. The consumption of white chocolate was associated with improved oxidative stress. Trial registration A randomized clinical trial (ClinicalTrials.gov NCT04367493).