Experiencing and enduring patient distress: the distress of palliative care patients and its emotional impact on physicians in training.

BACKGROUND: The extreme vulnerability experienced by patients in palliative care may result in significant distress. These patients require appropriate care while not pathologizing their natural distress. Given the challenges of caring for people experiencing significant distress, it is important to understand what professionals in training may feel when caring for patients in palliative care. Therefore, the aim of this study was to explore how professionals in training feel when confronted with the distress of patients undergoing palliative care. METHODS: A qualitative study employing interpretative phenomenological analysis was conducted. In 2022, 11 physicians in training were interviewed about their experiences with distressed patients due to palliative care. The interviews were conducted via video conference. The students participated in the national palliative care cross-training and were in their final year of residency training. RESULTS: The interviews revealed the following five themes: feelings of powerlessness, duty to act, difficulty in building a relationship, feeling insecure about oneself, and creating a space for listening and relating. All participants felt powerless in front of their patient's distress. Numerous defense mechanisms were identified that made the relationship with the patient difficult. Four participants described being able to create a space for listening and relating to their patients. CONCLUSIONS: A minority of students could establish a quality relationship with their distressed patients. Two concepts, interprofessional education and the patient-centered approach, were identified and could be developed in training.

Description and evaluation of a French grief workshop for children and adolescents bereaved of a sibling or parent.

BACKGROUND: Childhood bereavement is common, and is associated with elevated symptoms of grief with distress and impairment. However, few developmentally appropriate interventions to support grieving children are available to date. In Toulouse, France we developed an innovative four-session group intervention to support grieving families and evaluated its feasibility and acceptability. METHODS: The workshop consists of four sessions over 4 months, open to children bereaved of a sibling or parent, and co-facilitated by two mental health professionals. After an intake assessment, children were placed into closed groups according to age and relation to the deceased. The session content was balanced between creative activities and grief-related discussions. Overall satisfaction was evaluated in March-April of 2020 by an 8-question online survey of children and parents having participated between 2011 and 2019. Freeform commentaries were analysed using the thematic synthesis process. RESULTS: Of the 230 emails sent in March 2020, 46 children and 81 parents agreed to participate (55% response rate). The families reported an overall high level of satisfaction regarding the intervention that was rated as good to excellent. A majority of respondents considered their participation in the workshop helpful and in accordance with their expectations. Most would recommend the workshop to a friend, and would participate again in the group if needed. The group intervention helped reduce social isolation, facilitated grief expression, and supported the creation of a sense of community among bereaved families. CONCLUSIONS: Encouraging community and mutual support among grieving families is fundamental in bereavement care. Our four-session workshop held over 4 months and led by mental health professionals aimed to help reduce social isolation and foster coping skills through artistic creation and group discussion. Our results highlight the potential need for family bereavement support over a longer period and a provision of a variety of services. Our intervention model is feasible for families, and further studies examining its efficacy are warranted.

Bereavement care interventions for children under the age of 18 following the death of a sibling: a systematic review.

BACKGROUND: Childhood bereavement after sibling death is common, but often unrecognized. The psychosomatic and socioeconomic outcomes of bereaved children can be compromised if appropriate care is unavailable during the formative years leading into adulthood. AIM: This review aims to describe the methods, structures and procedures of bereavement care for children and adolescents after the loss of a sibling, and the impact on the families benefiting from these interventions. DESIGN: A systematic review without restriction on study design was conducted. DATA SOURCES: Four databases (MEDLINE, PsycINFO, EMBASE, Cochrane Library) were searched for articles published from 2000 to 2019. The search was conducted according to PRISMA guidelines and the protocol is registered on PROSPERO under number CRD42019124675. Articles were assessed against eligibility criteria by both authors, and quality was appraised using CASP checklists and NHMRC grading guidelines. RESULTS: Twenty-three studies met inclusion criteria. Bereavement care was most often accessed by children ages 6-18 who lost a sibling to cancer 6-12 months prior. The interventions were typically group sessions or weekend camps, run predominantly by unpaid staff from a variety of backgrounds. Some staff members received priori specific training. Grief education is taught through mediated discussion and bereavement-centered activities balanced with playful and relaxed activities. Several services have effectuated evaluations of their interventions, and preliminary results show a positive effect for families. CONCLUSION: Existing literature most likely gives an incomplete picture of appropriate childhood bereavement care, and many interventions possibly remain unpublished or published in other non-scientific sources. An effective response to childhood grief would involve collaboration between medical resources and community services, reinforced through the development of outreach and training programs.

The Effectiveness and Safety of Pharmaceutical-Grade Cannabidiol in the Treatment of Mastocytosis-Associated Pain: A Pilot Study.

Mastocytosis patients often experience a number of symptoms, including mastocytosis-associated pain that is difficult to manage due to resistance to usual antalgic treatments and/or the patient's poor tolerance. Mastocytosis patients display significantly higher levels of indoleamine-2,3-dioxygenase-1 (IDO1) activity, leading to hyperactivation of the N-methyl-D-aspartate receptor. As cannabidiol (CBD) is known to inhibit IDO1's enzymatic activity, we hypothesized that pharmaceutical-grade CBD is an effective treatment for mastocytosis-associated pain. Patients with non-advanced mastocytosis and refractory pain were eligible for inclusion in this observational pilot study. CBD was initiated at 50 mg/day and increased to a maximum of 900 mg/day. Pain was scored on a 0-to-10 numerical rating scale (NRS). A total of 44 patients were included over a 2-year period. The median dose of CBD prescribed was 300 mg/day (range: 50-900 mg/day). Elevated liver enzymes were observed in one patient. The mean ± standard deviation NRS pain score decreased significantly from 7.27 ± 1.35 before treatment to 3.78 ± 1.99 after 3 months of treatment (p < 0.0001). Fifteen patients (34%) were able to discontinue all their previous antalgic medications. CBD treatment might be a safe, effective treatment for mastocytosis-associated pain and its use requires confirmation in a randomized, controlled trial.

Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams.

CONTEXT: Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently encountered and can pose several clinical and ethical challenges for health care teams and families. OBJECTIVES: Our study aimed to describe CDS requests and practices of patients receiving specialized pediatric palliative care in France since its legalization in 2016. METHODS: We conducted a nationwide multicentric, descriptive, retrospective study using a self-report questionnaire completed by all Pediatric Palliative Care (PPC) Teams that were involved in a CDS case between January 2017 and December 2019. RESULTS: Six PPC teams had cared for six patients that had requested CDS, predominantly male adolescents/young adults diagnosed with a solid tumour. The refractory symptoms were diverse (pain, bleeding, and sensory loss) and always coupled with psycho-existential suffering. Each request was analyzed in multidisciplinary collegial meetings. Parental consent was always obtained regardless of age. Sedation typically required the use of multiple drugs including Midazolam (n = 5 cases), Chlorpromazine (n = 3), Ketamine (n = 2), and Propofol (n = 2). Despite close monitoring, achieving a satisfactory level of deep sedation was challenging and most patients unexpectedly awoke during CDS. Death occurred between 27 and 96 hours after induction. CONCLUSION: Managing patient-requested CDS in pediatrics is challenging due to its rarity, multi-factorial refractory symptoms and drug tolerance despite polytherapy. Few recommendations exist to guide CDS practice for pediatricians. Further studies investigating pediatric CDS practices across various cultural and legal settings, refractory symptom management and specific pharmacology are warranted.

Understanding why patients request euthanasia when it is illegal: a qualitative study in palliative care units on the personal and practical impact of euthanasia requests.

CONTEXT: Some patients in palliative care units request euthanasia regardless of legislation. Although studies have explored the reasons for these requests, little is known about the subjective, relational, and contextual repercussions for the patient. OBJECTIVES: The aim of this study is to understand the purpose of euthanasia requests from the patient's viewpoint and their personal and practical impact. METHODS: We conducted in-depth interviews with patients requesting euthanasia, their family members, and health care providers in 11 French palliative care units. A thematic analysis of the data was performed. RESULTS: In total, 18 patients were interviewed within 48 h of the request being made; 1 week later, 9 patients were interviewed again. Five main themes emerged: assuming the possibility of transgressing the forbidden, a call for unbearable suffering to be recognized, encouragement to change clinical practice, reclaiming a sense of freedom over medical constraints, and imagining a desirable future for oneself. CONCLUSIONS: A request for euthanasia appears to be a willful means to remove oneself from the impasse of an existence paralyzed by suffering. It creates a space for discussion, which promotes negotiation with patients on care practices and therapeutics, and strengthens patients' sense of autonomy. Investigating the relationship between the evolution of euthanasia requests within the palliative care setting could be beneficial. It is important to encourage health care professionals to adopt a readiness to listen by interacting with patients in a way that is not momentarily action-oriented but rather focused on proactive discussion.

Impact of pharmacist medication review for paediatric patients: an observational study.

BACKGROUND: Paediatric patients are at high risk of medication errors and adverse drug events due to complex medical care. OBJECTIVE: To assess the impact of pharmacist medication review for paediatric patients. SETTING: A single-centre prospective observational study was performed over 33 months, from February 2018 to October 2020 in a French Hospital. METHOD: Clinical pharmacists provided medication counselling at a hospital and conducted telephone follow-ups between 3 and 7 days after discharge of paediatric patients with chronic diseases for whom treatment was introduced or modified during hospitalisation or hospital consultations. MAIN OUTCOME MEASURES: The incidence of drug-related problems (DRPs), the number and type of pharmacist intervention and paediatrician acceptance rates were assessed. Parents' understanding and drug-related needs were compared before and after medication review. Time to outpatient treatment and patient satisfaction were determined. Statistical analyses were performed in Excel. RESULTS: In total, 195 paediatric patients were included. Pharmacists identified 65 interventions, 95% of which were accepted. The most frequent DRPs included inappropriate drug administration (32.3%), herb-drug interactions (24.6%) and dose selection (17%). Parents' knowledge increased by 28% from baseline after pharmacist's medication counselling. Parents' drug-related needs concerning administration and side effects decreased by 67% and 49%, respectively, following the pharmacist's medication counselling. Most (75%) of the patients were able to get their treatment immediately after discharge. CONCLUSION: Clinical pharmacists can improve medication safety for children during the discharge process or consultations, by reducing prescription errors, optimising administration, counselling patients or parents and helping to ensure care continuity.

Dual intestinal anomalies in dizygotic twins.

We report on the case of two digestive malformations in dizygotic/dichorionic/diamniotic twins born at 31 weeks of gestation. The mother (gravida 1 para 0) was treated by hydroxychloroquine for systemic lupus erythematosus during pregnancy. Twin A presented an arch-like dilatation on antenatal ultrasounds, characteristic of segmental volvulus. After birth, twin B presented repeated vomiting on feeding, leading us to diagnose ileal atresia despite normal antenatal ultrasounds. Both twins underwent surgery and the postoperative period was uneventful. After 1 year of follow-up, the twins are in excellent health without digestive sequelae. Genetic testing for cystic fibrosis was negative. The placenta showed diffuse signs of hypoxia and ischaemia, indicating that the root cause was vascular. The pathophysiology of intestinal atresia is hypothesised to derive from a vascular incident during fetal development. We are therefore led to believe that an intrauterine vascular event is the most likely cause of the dual malformation.