"Collateral beauty." Experiences and needs of professionals caring for parents continuing pregnancy after a life-limiting prenatal diagnosis: A grounded theory study.

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.

'Thank you for loving me': A qualitative study on perceptions of gratitude and their effects in palliative care patients and relatives.

BACKGROUND: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. AIM: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context. DESIGN: We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis. SETTINGS/PARTICIPANTS: Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland. RESULTS: Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation. CONCLUSION: Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care.

Patient altruism at the end of life: A scoping review.

OBJECTIVES: The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts. METHODS: In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist. The scoping review is reported using the PRISMA checklist for scoping reviews. We used a data charting form to deductively extract data from the selected articles and then mapped data into 4 themes related to our research questions: how authors describe and employ the concept of patient altruism; expressions of patient altruism; consequences of patients' altruistic acts; and possible interventions fostering patient altruism. RESULTS: Excluding duplicates, 2893 articles were retrieved; 33 were included in the final review. Altruism was generally considered as an act or intention oriented toward the benefit of a specific (known) or non-specific (generic) recipient. Patients expressed altruism through care and support, decisions to withhold treatment or actively hasten death, and engagement in advance care planning. Consequences of altruism were categorized in patient-centered (contribution to meaning in life and quality of life), non-patient-centered (leaving a positive impact and saving money), and negative consequences (generating feelings of guilt, exposing individuals with low self-esteem). Interventions to encourage altruism comprised specific interventions, providing opportunities to plan for future care, and recognizing and respecting the patients' altruistic motivations. SIGNIFICANCE OF RESULTS: We identified heterogeneous and limited research conceptualization of patient altruism and its operationalization in palliative care settings. A deeper conceptual, empirical, and theoretical exploration of patient altruism in EOL is necessary.

"More life and more days"-patient and care characteristics in a specialized acute pediatric palliative care inpatient unit.

Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing patient and care characteristics on our PPCU to learn about the complexity and relevance of inpatient PPC. A retrospective chart analysis was performed on the 8-bed PPCU of the Center for Pediatric Palliative Care of the Munich University Hospital, including demographic, clinical, and treatment characteristics (487 consecutive cases; 201 individual patients; 2016-2020). Data were analyzed descriptively; the chi-square test was used for comparisons. Patients' age (1-35.5 years, median: 4.8 years) and length of stay (1-186 days, median 11 days) varied widely. Thirty-eight percent of patients were admitted repeatedly (range 2-20 times). Most patients suffered from neurological diseases (38%) or congenital abnormalities (34%); oncological diseases were rare (7%). Patients' predominant acute symptoms were dyspnea (61%), pain (54%), and gastrointestinal symptoms (46%). Twenty percent of patients suffered from > 6 acute symptoms, 30% had respiratory support incl. invasive ventilation, 71% had a feeding tube, and 40% had full resuscitation code. In 78% of cases, patients were discharged home; 11% died on the unit. CONCLUSION: This study shows the heterogeneity, high symptom burden, and medical complexity of the patients on the PPCU. The high dependency on life-sustaining medical technology points to the parallelism of life-prolonging and palliative treatments that is typical for PPC. Specialized PPCUs need to offer care at the intermediate care level in order to respond to the needs of patients and families. WHAT IS KNOWN: • Pediatric patients in outpatient PPC or hospices present with a variety of clinical syndromes and different levels of complexity and care intensity. • There are many children with life-limiting conditions (LLC) in hospitals, but specialized PPC hospital units for these patients are rare and poorly described. WHAT IS NEW: • Patients on a specialized PPC hospital unit show a high symptom burden and a high level of medical complexity, including dependency on medical technology and frequent full resuscitation code. • The PPC unit is mainly a place for pain and symptom management as well as crisis intervention, and needs to be able to offer treatment at the intermediate care level.

Methods for informing people with amyotrophic lateral sclerosis/motor neuron disease of their diagnosis.

BACKGROUND: Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), causes increasing physical impairment and disability. People with ALS/MND face huge physical challenges, and the diagnosis can be a source of great psychological distress for both people with ALS/MND and their carers. In such a context, how news of the diagnosis is broken is important. At present, there are no systematic reviews of methods for informing people with ALS/MND of their diagnosis. OBJECTIVES: To examine the effects and effectiveness of different methods for informing people of a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND), including effects on the person's knowledge and understanding of their disease, its treatment, and care; and on coping and adjustment to the effects of ALS/MND, its treatment, and care. SEARCH METHODS: We searched the Neuromuscular Specialised Register, CENTRAL, MEDLINE, Embase, PsycINFO, and two trials registers (February 2022). We contacted individuals or organisations to locate studies. We contacted study authors to obtain additional unpublished data. SELECTION CRITERIA: We planned to include randomised controlled trials (RCTs) and quasi-RCTs of techniques for informing people with ALS/MND of their diagnosis. We planned to include adults (aged 17 years or over) with ALS/MND, according to the El Escorial criteria. DATA COLLECTION AND ANALYSIS: Three review authors independently reviewed the results of the search to identify RCTs, and three review authors identified non-randomised studies to include in the discussion section. We planned that two review authors would independently extract data, and three would assess the risk of bias in any included trials. MAIN RESULTS: We did not identify any RCTs that met our inclusion criteria. AUTHORS' CONCLUSIONS: There are no RCTs that evaluate different communication strategies for breaking the bad news for people diagnosed with ALS/MND. Focused research studies are needed to assess the effectiveness and efficacy of different communication methods.

Giving and receiving thanks: a mixed methods pilot study of a gratitude intervention for palliative patients and their carers.

BACKGROUND: Psychological research examining the nature and workings of gratitude has burgeoned over the past two decades. However, few studies have considered gratitude in the palliative care context. Based on an exploratory study which found that gratitude was correlated with better quality of life and less psychological distress in palliative patients, we designed and piloted a gratitude intervention where palliative patients and a carer of their choice wrote and shared a gratitude letter with each other. The aims of this study are to establish the feasibility and acceptability of our gratitude intervention and provide a preliminary assessment of its effects. METHODS: This pilot intervention study adopted a mixed-methods, concurrent nested, pre-post evaluation design. To assess the intervention's effects, we employed quantitative questionnaires on quality of life, quality of relationship, psychological distress, and subjective burden, as well as semi-structured interviews. To assess feasibility, we considered patients and carers' eligibility, participation and attrition rates, reasons for refusal to participate, appropriateness of intervention timeframe, modalities of participation, and barriers and facilitators. Acceptability was assessed through post-intervention satisfaction questionnaires. RESULTS: Thirty-nine participants completed the intervention and twenty-nine participated in interviews. We did not find any statistically significant pre/post intervention changes for patients, but found significant decrease in psychological distress for carers in terms of depression (median = 3 at T0, 1.5 at T1, p = .034) and total score (median = 13 at T0, 7.5 at T1, p = .041). Thematic analysis of interviews indicates that overall, the intervention had: (1) multiple positive outcomes for over a third of interviewees, in the form of positive emotional, cognitive, and relational effects; (2) single positive outcomes for nearly half of interviewees, who experienced emotional or cognitive effects; (3) no effect on two patients; and (4) negative emotional effects on two patients. Feasibility and acceptability indicators suggest that the intervention was well received by participants, and that it should adopt flexible modalities (e.g. writing or dictating a gratitude message) to ensure that it is feasible and adapted to individual needs and preferences. CONCLUSIONS: Larger scale deployment and evaluation of the gratitude intervention, including a control group, is warranted in order to have a more reliable evaluation of its effectiveness in palliative care.

"Life goes on": Perspectives on the will to live from residents of Swiss long-term care facilities.

OBJECTIVES: While there is a growing body of literature on the wish to die in older patients, there is little research about their will to live. Exploring the subjective will to live (WTL) offers valuable insights into the patients' resources and motivations, which could help improving geriatric palliative care. The aim of this study was to examine, in long-term care facilities (LTCF), residents' definitions of and factors influencing their WTL. METHODS: Twenty residents (mean age 85.8 ± 10.3 years, 70% women) of 3 Swiss LTCFs gave informed consent and participated in semi-structured interviews about their WTL. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was conducted to identify recurrent themes (40% double coded). RESULTS: The majority of residents reported that they had not thought about the WTL. Nevertheless, they had no difficulty in describing it as innate in their lives. They spontaneously mentioned factors that contributed to their WTL, classified into 5 themes: (1) relationships - primarily with family and health professionals, secondarily with other residents; (2) living situation - the LTCF as a necessary place providing care, constant professional presence, and security, yet necessitates inconveniences such as loss of independence; (3) personality factors - positive outlook on life or spirituality; (4) engagement in routines - organized activities and individual daily routines; and (5) health status - primarily related to functional health. SIGNIFICANCE OF RESULTS: Examining WTL provides important insights into elements that are essential to take into account in planning care and promoting well-being in LTCF residents. The themes identified provide important starting points for improving life in LTCFs.

Dimensions of end-of-life preferences in the Swiss general population aged 55+.

BACKGROUND: understanding end-of-life preferences in the general population and how they are structured in people's minds is essential to inform how to better shape healthcare services in accordance with population expectations for their end of life and optimise communication on end-of-life care issues. OBJECTIVE: explore key dimensions underlying end-of-life preferences in a nationally representative sample of adults aged 55 and over in Switzerland. METHODS: respondents (n = 2,514) to the Swiss version of the Survey of Health, Ageing and Retirement in Europe assessed the importance of 23 end-of-life items on a 4-point Likert scale. The factorial structure of the underlying end-of-life preferences was examined using exploratory structural equation modelling. RESULTS: four dimensions underlying end-of-life preferences were identified: a medical dimension including aspects related to pain management and the maintenance of physical and cognitive abilities; a psychosocial dimension encompassing aspects related to social and spiritual support; a control dimension addressing the need to achieve some control and to put things in order before death; and a burden dimension reflecting wishes not to be a burden to others and to feel useful to others. CONCLUSION: highlighting the multi-dimensionality of end-of-life preferences, our results reaffirm the importance of a holistic and comprehensive approach to the end of life. Our results also provide a general framework that may guide the development of information and awareness campaigns on end-of-life care issues in the general population, informational materials and guidelines to support healthy individuals in end-of-life thinking and planning, and advance directive templates appropriate for healthy individuals.

Posttraumatic growth in palliative care patients and its associations with psychological distress and quality of life.

OBJECTIVES: Posttraumatic growth (PTG) refers to positive psychological changes resulting from individuals' inner struggles with traumatic events such as life-threatening illness. Although palliative care patients are confronted with their own mortality, little is known about their PTG experience. This study investigates whether PTG is an empirically relevant concept for palliative patients by assessing the prevalence and areas of growth, and examining associations with psychological distress and quality of life. METHODS: Participants were recruited in Switzerland. Using validated questionnaires, we assessed PTG (Posttraumatic Growth Inventory, PTGI), psychological distress (Hospital Anxiety and Depression Scale), and quality of life (McGill-Quality of Life Questionnaire - Revised). We performed descriptive analyses, Spearman correlations, and linear regressions. RESULTS: Fifty-five patients completed the PTGI, 44% of whom experienced no/low growth, 47% moderate growth, and 9% high/very high growth. Participants experienced the greatest positive changes in terms of appreciating life and relating to others. We found significant negative bivariate correlations between PTG and psychological distress (r = -0.33) and between PTG and depression (r = -0.47). Linear regressions showed that PTG is associated with depression (ß = -0.468; p = 0.000), but not with anxiety or quality of life (adjusted R2 = 0.219). SIGNIFICANCE OF RESULTS: Over half of our patients experienced moderate to very high growth, indicating that PTG is an empirically relevant psychological process in palliative care. PTG is associated with lower levels of depression, possibly as those experiencing growth are more able to process past traumas and build a more positive outlook on one's life and self. By contrast, the relative independence of anxiety and PTG points to the likely coexistence of positive and negative psychological responses to trauma. The lack of association between PTG and quality of life points to the uniqueness of the PTG concept in capturing how people access deeper meaning and greater appreciation of life along the path toward posttraumatic self-reconstruction.

Views on a "Good Death": End-of-Life Preferences and Their Association With Socio-Demographic Characteristics in a Representative Sample of Older Adults in Switzerland.

The current study explores the end-of-life (EOL) preferences of a national representative sample of adults aged 55 and older in Switzerland and shows how these preferences vary by respondents' sociodemographic characteristics and the linguistic region in which they live. Many of the presented EOL attributes are considered as (very) important by a large majority of the older population in Switzerland with significant variations across sociodemographic groups. Specifically, gender is related to psychosocial aspects of EOL, age to the importance attached to avoiding being a burden on the society, and education levels to preferences regarding overtreatment and advance care planning. The results highlight the importance of a personalized, holistic and interdisciplinary approach to EOL and EOL care, since social, psychological, organizational and physical aspects of EOL are rated as (very) important with significant differences in EOL preferences across sociodemographic groups.

[Identifying patients in need of general or specialised palliative care with ID-PALL]. / Identifier les patients nécessitant des soins palliatifs généraux ou spécialisés grâce à ID-PALL.

Palliative care is frequently associated with end of life and cancer, both in the general population and among healthcare professionals. ID-PALL is a new, short, easy-to-use instrument to help professionals to identify general or specialized palliative care needs in adult inpatients in different care settings. ID-PALL has already been validated in internal medicine units. ID-PALL should help professionals to discuss a suitable palliative care project, in order to maintain the best quality of life for patients and their relatives, and to involve palliative care specialists at the appropriate time. Recommendations for clinical practice are also proposed to guide professionals after the identification phase.

Que ce soit dans la population ou chez les professionnels de la santé, les soins palliatifs sont fréquemment associés à la fin de vie et au cancer. ID-PALL est un nouvel instrument court, facile d'utilisation, pour aider les professionnels à identifier les besoins de soins palliatifs généraux ou spécialisés chez les patients adultes hospitalisés dans les différents milieux de soins et déjà validé en médecine interne. ID-PALL devrait aider les professionnels à se mettre en discussion autour d'un projet de soins palliatifs adapté, afin de maintenir la meilleure qualité de vie possible pour les patients et leurs proches et également permettre d'appeler les spécialistes de soins palliatifs au moment opportun. Des recommandations pour la pratique clinique sont également proposées pour orienter les professionnels après la phase d'identification.

Adapting to a New Normal After Severe Acute Brain Injury: An Observational Cohort Using a Sequential Explanatory Design.

OBJECTIVES: Treatment decisions following severe acute brain injury need to consider patients' goals-of-care and long-term outcomes. Using family members as respondents, we aimed to assess patients' goals-of-care in the ICU and explore the impact of adaptation on survivors who did not reach the level of recovery initially considered acceptable. DESIGN: Prospective, observational, mixed-methods cohort study. SETTING: Comprehensive stroke and level 1 trauma center in Pacific Northwest United States. PARTICIPANTS: Family members of patients with severe acute brain injury in an ICU for greater than 2 days and Glasgow Coma Scale score less than 12. MEASUREMENTS AND MAIN RESULTS: At enrollment, we asked what level of physical and cognitive recovery the patient would find acceptable. At 6 months, we assessed level of recovery through family surveys and chart review. Families of patients whose outcome was below that considered acceptable were invited for semistructured interviews, examined with content analysis. RESULTS: For 184 patients, most family members set patients' minimally acceptable cognitive recovery at "able to think and communicate" or better (82%) and physical recovery at independence or better (66%). Among 170 patients with known 6-month outcome, 40% had died in hospital. Of 102 survivors, 33% were able to think and communicate, 13% were independent, and 10% died after discharge. Among survivors whose family member had set minimally acceptable cognitive function at "able to think and communicate," 64% survived below that level; for those with minimally acceptable physical function at independence, 80% survived below that. Qualitative analysis revealed two key themes: families struggled to adapt to a new, yet uncertain, normal and asked for support and guidance with ongoing treatment decisions. CONCLUSIONS AND RELEVANCE: Six months after severe acute brain injury, most patients survived to a state their families initially thought would not be acceptable. Survivors and their families need more support and guidance as they adapt to a new normal and struggle with persistent uncertainty.

Visualizing social support in home pediatric palliative care using network maps.

BACKGROUND: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care. AIM: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual. DESIGN: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves. SETTING/PARTICIPANTS: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study. RESULTS: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time. CONCLUSION: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers' support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.

Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study.

BACKGROUND: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. AIM: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. DESIGN: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. SETTING/PARTICIPANTS: We included bereaved parents, health care providers and stakeholders of care networks. RESULTS: Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge. CONCLUSION: A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process.

IDentification of patients in need of general and specialised PALLiative care (ID-PALL©): item generation, content and face validity of a new interprofessional screening instrument.

BACKGROUND: Early identification of patients requiring palliative care is a major public health concern. A growing number of instruments exist to help professionals to identify these patients, however, thus far, none have been thoroughly assessed for criterion validity. In addition, no currently available instruments differentiate between patients in need of general vs. specialised palliative care, and most are primarily intended for use by physicians. This study aims to develop and rigorously validate a new interprofessional instrument allowing identification of patients in need of general vs specialised palliative care. METHODS: The instrument development involved four steps: i) literature review to determine the concept to measure; ii) generation of a set of items; iii) review of the initial set of items by experts to establish the content validity; iv) administration of the items to a sample of the target population to establish face validity. We conducted a Delphi process with experts in palliative care to accomplish step 3 and sent a questionnaire to nurses and physicians non-specialised in palliative care to complete step 4. The study was conducted in the French and Italian-speaking regions of Switzerland. An interdisciplinary committee of clinical experts supervised all steps. RESULTS: The literature review confirmed the necessity of distinguishing between general and specialised palliative care needs and of adapting clinical recommendations to these different needs. Thirty-six nurses and physicians participated in the Delphi process and 28 were involved in the face validity assessment. The Delphi process resulted in two lists: a 7-item list to identify patients in need of general PC and an 8-item list to identify specialised PC needs. The content and face validity were deemed to be acceptable by both the expert and target populations. CONCLUSION: This instrument makes a significant contribution to the identification of patients with palliative care needs as it has been designed to differentiate between general and specialised palliative care needs. Moreover, diagnostic data is not fundamental to the use of the instrument, thus facilitating its use by healthcare professionals other than physicians, in particular nurses. Internal and criterion validity assessments are ongoing and essential before wider dissemination of the instrument.

Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors.

BACKGROUND: A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%-85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease. AIM: We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived. DESIGN: This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña. SETTING/PARTICIPANTS: A total of 10 professionals from three different pregnancy counseling services participated in the study. RESULTS: The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved. CONCLUSION: A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.

[The Development of Palliative Care Hospital Support Teams (HPCTs) in Bavaria from 2011-2015: Tasks, Acceptance, Structure and Funding]. / Entwicklung der Palliativmedizinischen Dienste (PMD) in Bayern 2011­2015: Aufgaben, Akzeptanz, Struktur und Finanzierung.

INTRODUCTION: Palliative care hospital support teams (HPCTs) provide inpatients from all departments palliative medical support. Seriously ill as well as dying patients, who are being treated in facilities that do not have their own palliative care unit, can benefit from these multi-professional teams just as much as patients who do not (yet) need to be admitted to a palliative care unit. At the end of 2015, 53 HPCTs, which were in accordance with the requirements established in the "Program for HPCTs" by the Bavarian Ministry of Health in 2009, had been approved in Bavaria. METHODS: Using a questionnaire that was distributed by mail (2011) and an online survey (2015), we asked all Bavarian HPCTs, which had been approved up until then, to answer questions regarding their tasks, the level of acceptance within their hospital, the structure of their staff and funding. In addition to questions, which were rated on an applicability scale from 0 to 10, there was also room for written comments. RESULTS: The return rate in 2011 was 77% (17 questionnaires) and 53% (28) in 2015. In sum, HPCTs were widely regarded as a suitable instrument for improving in-house palliative care (2011: median 7.8 (0-10) ±1.9, 2015: 7.2 (0-10) ±2.3; n.s.). The level of acceptance among the other departments of the hospital was assessed as being significantly higher in 2015 (7.2±2.3) than it was 4 years earlier (5.7±2.2; p<0.05). HPCTs cover various tasks, most commonly including "supportive conversations," "accompaniment in the dying phase," "pain therapy" and "discharge management." However, a decline in multi-professionalism within the teams could be seen, especially in the fields of psychology/psycho-oncology and spiritual care (p<0.05). Both surveys showed that an essential aspect in funding the teams was the supplementary payment ZE 60 for "complex palliative medical treatments." However, funding in general was predominantly reported as being quite difficult: only 29% of the HPCTs of 2015 indicated that all of their costs were covered. CONCLUSION: HPCTs in Bavaria take over important tasks in caring for seriously ill and dying patients and their families. According to their own appraisal, the level of acceptance within hospitals is improving. The hope is that new regulations, such as the new OPS 8-98 h (specialized complex palliative treatments provided by a HPCT), which was introduced in 2017, will solidify funding without jeopardizing the multi-professionalism that characterizes HPCTs.

Voluntary stopping of eating and drinking: is medical support ethically justified?

BACKGROUND: Physician-assisted dying has been the subject of extensive discussion and legislative activity both in Europe and North America. In this context, dying by voluntary stopping of eating and drinking (VSED) is often proposed, and practiced, as an alternative method of self-determined dying, with medical support for VSED being regarded as ethically and legally justified. ARGUMENT: In our opinion, this view is flawed. First, we argue that VSED falls within the concept of suicide, albeit with certain unique features (non-invasiveness, initial reversibility, resemblance to the natural dying process). Second, we demonstrate, on the basis of paradigmatic clinical cases, that medically supported VSED is, at least in some instances, tantamount to assisted suicide. This is especially the case if a patient's choice of VSED depends on the physician's assurance to provide medical support. CONCLUSION: Thus, for many jurisdictions worldwide, medically supported VSED may fall within the legal prohibitions on suicide assistance. Physicians, lawmakers, and societies should discuss specific ways of regulating medical support for VSED in order to provide clear guidance for both patients and healthcare professionals. Please see related article: http://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-017-0951-0 .

"Hope for the best, prepare for the worst": A qualitative interview study on parents' needs and fears in pediatric advance care planning.

BACKGROUND: Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particularly difficult and charged with emotions, physicians are often afraid of addressing pediatric advance care planning. AIM: We aimed to investigate parents' views and needs regarding pediatric advance care planning. DESIGN: We performed a qualitative interview study with parents of children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña. SETTING/PARTICIPANTS: We conducted semi-structured interviews with 11 parents of 9 children. Maximum variation was sought regarding the child's illness, age at death, care setting, and parent gender. RESULTS: Parents find it difficult to engage in pediatric advance care planning but consider it important. They argue for a sensitive, individualized, and gradual approach. Hope and quality of life issues are primary. Parents have many non-medical concerns that they want to discuss. Written advance directives are considered less important, but medical emergency plans are viewed as necessary in particular cases. Continuity of care and information should be improved through regular pediatric advance care planning meetings with the various care providers. Parents emphasize the importance of a continuous contact person to facilitate pediatric advance care planning. CONCLUSION: Despite a need for pediatric advance care planning, it is perceived as challenging. Needs-adjusted content and process and continuity of communication should be a main focus in pediatric advance care planning. Future research should focus on strategies that facilitate parent engagement in pediatric advance care planning to increase the benefit for the families.