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.
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.
CONTEXT: The Integrated Palliative care Outcome Scale (IPOS) is a widely used tool for assessing patient needs in palliative care.
OBJECTIVES: The aim of this study is to provide a validated version of the patient and staff IPOS for French-speaking Switzerland (IPOS-Fr) and assess its psychometric properties.
METHODS: The validation took place in 12 palliative care units and mobile teams. At baseline (T1) and three days later (T2), patients' general health status, palliative care needs (IPOS-Fr) and quality of life (McGill Quality of Life scale Revised-MQOL-R) were assessed by patients and staff.
RESULTS: We included 173 patients (mean age: 68.8; 92 women; 85% oncologic disease). IPOS internal consistency was high for the total score (.69 and .71). Staff-patient inter-rater agreement was good to moderate for 13 items (intra-class correlations >.516). Results indicated strong correlations between IPOS-Fr and MQOL-R for the total score (-.623 at T1) and the psychological domain (item 11:-.601 at T1; item 13: -.633 at T2). Regarding sensitivity to change, there was a significant difference between T1 and T2 for patients with an improved health condition (z=-2.326; p=.020).
CONCLUSION: IPOS-Fr has fair to good validity, especially with regard to inter-rater agreement and construct validity, is sensitive to positive change, and has good interpretability and acceptability for patients and staff. IPOS-Fr is not optimal in terms of internal consistency and structure when using subscale scores, except for the emotional subscale.
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.
OBJECTIVE: This study aims (1) to assess physicians' attitudes toward different palliative end-of-life (EOL) practices in amyotrophic lateral sclerosis (ALS) care, including forgoing artificial nutrition and hydration (FANH), continuous sedation until death (CSD), and withdrawing invasive ventilation (WIV), and toward physician-assisted dying (PAD) including physician-assisted suicide and euthanasia and (2) to explore variables influencing these attitudes.
METHODS: We used two clinical vignettes depicting ALS patients in different stages of their disease progression to assess the influence of suffering (physical/psycho-existential) on attitudes toward WIV and the influence of suffering and prognosis (short-term/long-term) on attitudes toward FANH, CSD, and PAD.
RESULTS: 50 physicians from European ALS centers and neurological departments completed our survey. Short-term prognosis had a positive impact on attitudes toward offering FANH (p = 0.014) and CSD (p = 0.048) as well as on attitudes toward performing CSD (p = 0.036) and euthanasia (p = 0.023). Predominantly psycho-existential suffering was associated with a more favorable attitude toward WIV but influenced attitudes toward performing CSD negatively. Regression analysis showed that religiosity was associated with more reluctant attitudes toward palliative EOL practices and PAD, whereas training in palliative care was associated with more favorable attitudes toward palliative EOL practices only.
CONCLUSION: ALS physicians seem to acknowledge psycho-existential suffering as a highly acceptable motive for WIV but not CSD. Physicians appear to be comfortable with responding to the patient's requests, but more reluctant to assume a proactive role in the decision-making process. Palliative care training may support ALS physicians in these challenging situations.
BACKGROUND: Numerous studies, conducted largely with non-clinical populations, have shown a significant link between gratitude and psychological dimensions relevant for palliative care (e.g., psychological distress). However, the relevance of gratitude in the context of palliative care needs to be confirmed.
OBJECTIVES: We strived to evaluate the association between gratitude and quality of life (QoL), psychological distress, post-traumatic growth, and health status in palliative patients, and to develop an explanatory model for QoL. An ancillary purpose was to identify which life domains patients considered sources of gratitude.
DESIGN: We performed an exploratory and cross-sectional study with palliative patients of the Lausanne University Hospital.
MEASUREMENTS: We used the Gratitude Questionnaire, the McGill Quality of Life questionnaire revised, the Hospital Anxiety and Depression Scale, the Post-traumatic Growth Inventory, and the health status items of the Eastern Cooperative Oncology Group. Spearman correlations and multivariate analyses were performed.
RESULTS: Sixty-four patients participated (34 women, mean age = 67). The results showed significant positive correlations between gratitude and QoL (r = 0.376), and the appreciation of life dimension of the post-traumatic growth (r = 0.426). Significant negative correlations were found between gratitude and psychological distress (r = -0.324), and health status (r = -0.266). The best model for QoL explained 47.6% of the variance (F = 26.906) and included psychological distress and gratitude. The relational dimension was the most frequently cited source of gratitude (61%).
CONCLUSION: Gratitude may act positively on QoL and may protect against psychological distress in the palliative situation. The next step will be the adaptation and implementation of a gratitude-based intervention.
BACKGROUND: Advance directives enable people to describe their preferences for medical treatment (living will) and/or to appoint a healthcare proxy who may decide on their behalf should they lose decision-making capacity. Advance directives are potentially important in determining the course of end-of-life care, as deaths are frequently preceded by end-of-life treatment decisions, which often require someone to make decisions on the patient's behalf. Switzerland introduced legally binding advance directives through its new child and adult protection law of 2013. But there is still no comprehensive evidence on older persons' awareness, attitudes and behaviours with regard to advance directives in Switzerland.
AIM AND METHOD: Our study aimed to assess levels of awareness, approval and completion of advance directives, as well as their respective associations with sociodemographic characteristics in the Swiss population aged 55 and older. Our study was cross-sectional and used data from the Survey of Health, Ageing and Retirement in Europe (SHARE), which included a special module on end-of-life issues in wave 6 (2015) in Switzerland (n = 2085).
RESULTS: Two years after the introduction of advance directives in Switzerland, 78.7% of adults aged 55 years and older had heard of them prior to the survey and 24% reported that they had completed one. Awareness of advance directives was higher in the German-speaking part of Switzerland (91%) than in the Italian- (57.1%) and French-speaking (43.3%) regions (p <0.001). Advance directive completion also differed significantly between the German- (28.7%), French- (10.3%) and Italian-speaking (17.9%) regions of Switzerland (p <0.001). Overall, 76.7% of Swiss adults aged 55 and older generally approved of advance directives, i.e., they either reported having already completed one or were planning to do so in the future. Of those who had not yet completed an advance directive, 32.9% believed that it was still "too early" for them to do so and 30.1% believed that they would not need one. Levels of awareness, approval and completion of advance directives also varied significantly by sex, age, education level and household composition.
DISCUSSION: Our results show some potential for improvement in levels of advance directive awareness and, especially, completion among older adults, notably in the French- and Italian-speaking Switzerland. In view of the generally high levels of approval of advance directives, our findings point to important barriers to their completion by older persons that should be addressed by policy makers in order to ensure an effective translation of individual intentions to complete an advance directive sometime in the future into concrete and timely actions toward this end.
Background: Neurological expertise in palliative care may be required not only for patients with primary neurological disorders but also for patients with non-neurological diseases suffering from burdensome neurological symptoms. The aim of this study was to determine the prevalence of neurological diagnoses and symptoms in palliative care patients, as well as the related burden and impact on everyday life.
Methods: We analyzed retrospectively the medical records of 255 consecutive patients from a tertiary medical center, at the time point of referral to an inpatient palliative care consultation service. In addition, 100 patients prospectively answered a questionnaire which included the assessment of neurological symptoms, as well as numeric rating scales for quality of life, symptom-specific burden, and restrictions in everyday life.
Results: Forty-one patients (16%) suffered from a primary neurological disease. Most decisions regarding the termination of life-sustaining measures concerned this group (20/22, 91%). Neurological symptoms (excluding pain) were documented in 122 patients (48%) with an underlying non-neurological disease. In the questionnaire study, 98/100 patients reported at least one neurological or neuropsychiatric symptom, most frequently sleeping problems (N = 63), difficulty concentrating (N = 55), and sensory symptoms (N = 50). Vertigo/dizziness (N = 19) had the greatest impact on everyday life (7.57/10 ± 2.17) and the highest symptom-specific burden (7.14 ± 2.51). Difficulty concentrating (restrictions in everyday life/burden) and pain intensity were the only symptoms significantly correlated with quality of life (r = -0.36, p = 0.009/r = -0.32; p = 0.04; r = -0.327, p = 0.003).
Conclusion: Neurological diseases and symptoms are frequent among palliative care patients and are often associated with a high symptom burden, which may severely affect the patients' lives. It is thus of paramount importance to implement neurological expertise in palliative care.
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.
Dans une perspective de santé publique et dans le but d’améliorer la qualité des soins, le développement des soins palliatifs passe par l’identification précoce des patients nécessitant ce type d’accompagnement. Celle-ci reste pourtant encore suboptimale, avec comme conséquence une mise en œuvre trop tardive des soins palliatifs dans la trajectoire de maladie des personnes. Différents outils existent pour soutenir les professionnels dans cette pratique même si ceux-ci ont encore un niveau de validité incomplet et ne permettent pas de distinguer les patients nécessitant des soins palliatifs généraux versus spécialisés. Un outil qui répond mieux à ces critères est en phase de développement et de validation au CHUV.13
Le débat sur l'euthanasie est toujours passionné, et souvent simplificateur, voir idéologique. Il en va, dit-on, de ce bien inaliénable que représente l'autodétermination en fin de vie. Mais en réduisant le débat sur l'autonomie en fin de vie à la possibilité de pouvoir déterminer soi-même le moment de sa mort, ne passe-t-on pas à côté des véritables questions ? S'agit-il vraiment de savoir si l'on doit permettre qu'une personne puisse, dans des circonstances déterminées, mourir avec l'aide d'un tiers ? Ce livre montre que la question de l'euthanasie cache d'autres réalités, beaucoup plus importantes pour les personnes en fin de vie.
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.
OBJECTIVES: Assisted suicide in Switzerland is mainly performed by right-to-die societies. Medical involvement is limited to the prescription of the drug and certification of eligibility. Palliative care has traditionally been perceived as generally opposed to assisted suicide, but little is known about palliative care physicians' involvement in assisted suicide practices. This paper aims to describe their perspectives and involvement in assisted suicide practices.
METHODS: A qualitative interview study was conducted with 23 palliative care physicians across Switzerland. Thematic analysis was used to interpret data.
RESULTS: Swiss palliative care physicians regularly receive assisted suicide requests while none reported having received specific training in managing these requests. Participants reported being involved in assisted suicide decision making most were not willing to prescribe the lethal drug. After advising patients of the limits on their involvement in assisted suicide, the majority explored the origins of the patient's request and offered alternatives. Many participants struggled to reconcile their understanding of palliative care principles with patients' wishes to exercise their autonomy. The majority of participants had no direct contact with right-to-die societies, many desired better collaboration. A desire was voiced for a more structured debate on assisted suicide availability in hospitals and clearer legal and institutional frameworks.
CONCLUSIONS: The Swiss model of assisted suicide gives palliative care physicians opportunities to develop roles which are compatible with each practitioner's values, but may not correspond to patients' expectations. Specific education for all palliative care professionals and more structured ways to manage communication about assisted suicide are warranted.
CONTEXT: Spiritual, existential, and psychological issues represent central components of quality of life (QOL) in palliative care. A better understanding of the dynamic underlying these components is essential for the development of interventions tailored to the palliative context. OBJECTIVES: The aims were to explore (i) the relationship between spirituality, meaning in life, wishes for hastened death and psychological distress in palliative patients, and (ii) the extent to which these non-physical determinants influence QOL.
METHODS: A cross-sectional study involving face-to-face interviews with Swiss palliative patients was performed, including the Schedule for Meaning in Life Evaluation (SMILE), the Spiritual Subscale of the Functional Assessment of Chronic Illness Therapy (FACIT-Sp), the Idler Index of Religiosity (IIR), the Hospital Anxiety and Depression Scale (HADS) and the Schedule of Attitudes toward Hastened Death (SAHD). QOL was measured with a single item visual analogue scale (0-10). RESULTS: 206 patients completed the protocol (51.5% female; mean age=67.5 yrs). The results indicated a significant negative relationship between FACIT-Sp/SMILE and HADS total scores (p=.000). The best model for QOL explained 32.8 % of the variance (p=.000) and included the FACIT-Sp, SMILE, and SAHD total scores, the IIR "private religiosity" subscale, as well as the HADS "depression" score. CONCLUSION: Both spiritual well-being and meaning in life appear to be potential protective factors against psychological distress at the end of life. Since non-physical determinants play a major role in shaping QOL at the end of life, there is a need for the development of meaning-oriented and spiritual care interventions tailored to the fragility of palliative patients.
La taskforce de l'Association européenne pour les soins palliatifs a travaillé avec l'Académie européenne de neurologie pour produire une revue de consensus sur les soins palliatifs dans le cas de troubles neurologiques. Les auteurs en soulignent les principales recommandations.
Les auteurs proposent un éclairage réaliste sur la prise en charge de la fin de vie en France. Critiques avec une "médecine techniciste" qui parfois s'acharne à prolonger artificiellement la vie, refusant la banalisation de l'assistance au suicide, ils défendent la vie tracée par la médecine palliative, qui combine l'apaisement des souffrances physiques et l'accompagnement social et spirituel du mourant et de ses proches. Ce livre s'adresse aussi bien aux malades eux-mêmes qu'à leurs proches ainsi qu'aux soignants.
[Adapté résumé éditeur]