Delivering mental healthcare to patients with a depressive disorder alongside a life-limiting illness

The concurrent assessment and treatment of mental health disorders and palliative illnesses is complex. Affective disorders are more prevalent in people who need palliative care. Identifying the most suitable place of care and multi-professional multidisciplinary teams to provide support can be challenging and bewildering for professionals and patients. Mental health clinicians may be left with a sense of therapeutic nihilism, while palliative care teams can feel limited by the mental health resources available for treating those living with significant physical and mental health needs. We discuss the fictional case of a gentleman with metastatic bowel cancer who has developed symptoms of depressive disorder and identify how taking a pragmatic patient-centred approach can offer a route through potential dilemmas when seeking to provide individualised care based on needs. We used lay person experience alongside our own experiences of novel mechanisms for cross-specialty working in order to direct psychiatric trainees’ approaches to such cases.

Existential Dimension and Spiritual Assistance in the “A. Gemelli” University Hospital in Rome: A Cross-Disciplinary and Sacramental Enhanced Dynamical Approach in Palliative Care

In the A. Gemelli university hospital in Rome, the presence of highly specialized inter-professional palliative care teams and spiritual assistants who are dedicated to their role in the service of inpatients is valuable to person-centered healthcare. Spiritual needs are commonly experienced by patients with sudden illness, chronic conditions, and life-limiting conditions, and, consequently, spiritual care is an intrinsic and essential component of palliative care. This paper focuses on the sacrament of the Anointing of the Sick to demonstrate the importance of spiritual care as an integral part of palliative care and highlights the need for all interdisciplinary team members to address spiritual issues in order to improve the holistic assistance to the patient. Over a 3-year period (October 2018–September 2021), data about the sacrament of the Anointing of the Sick administered by the hospitaller chaplaincy were collected. A total of 1541 anointings were administered, with an average of 514 anointings per year, excluding reductions related to the COVID-19 pandemic. In 98% of cases, the sacrament was requested by health personnel, and in 96% of cases, the same health personnel participated in the sacrament. These results demonstrate that, at the A. Gemelli polyclinic in Rome, the level of training that the care team has received in collaboration with the chaplains has generated a good generalized awareness of the importance of integrating the spiritual needs of patients and their families into their care, considering salvation as well as health, in a model of dynamic interprofessional integration.

A National Survey of Palliative Care Team Compositions

Purpose: It is unclear how well palliative care teams are staffed at US cancer centers. Our primary objective was to compare the composition of palliative care teams between National Cancer Institute (NCI)-designated cancer centers and non-NCI-designated cancer centers in 2018. We also assessed changes in team composition between 2009 and 2018. Methods: This national survey examined the team composition in palliative care programs at all 61 NCI-designated cancer centers and in a random sample of 60 of 1252 non-NCI-designated cancer centers in 2018. Responses were compared to those from our 2009 survey. The primary outcome was the presence of an interprofessional team defined as a palliative care physician, nurse, and psychosocial member. Secondary outcomes were the size and number of individual disciplines. Results: In 2018, 52/61 (85%) of NCI-designated and 27/38 (71%) non-NCI-designated cancer centers in the primary outcome comparison responded to the survey. NCI-designated cancer centers were more likely to have interprofessional teams than non-NCI-designated cancer centers (92% vs 67%; P = .009). Non-NCI-designated cancer centers were more likely to have nurse-led teams (14.8% vs 0.0%; P = .01). The median number of disciplines did not differ between groups (NCI, 6.0; non-NCI, 5.0; P = .08). Between 2009 and 2018, NCI-designated and non-NCI-designated cancer centers saw increased proportions of centers with interprofessional teams (NCI, 64.9% vs 92.0%, P < .001; non-NCI, 40.0% vs 66.7%; P = .047). Conclusion: NCI-designated cancer centers were more likely to report having an interprofessional palliative care team than non-NCI-designated cancer centers. Growth has been limited over the past decade, particularly at non-NCI-designated cancer centers.

Care practices of specialized outpatient pediatric palliative care teams in collaboration with parents: Results of participatory observations

Background: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary interaction partners for palliative care providers. International standards for pediatric palliative care in Europe state that parents should be supported, acknowledged as the primary carers and involved as partners in all care and decisions. Aim: To find out through which care practices pediatric palliative care teams shape collaboration with parents in everyday care. Design: Ethnographic method of participatory observations. Field notes were analyzed using thematic analysis. Setting/participants: Researchers accompanied three pediatric palliative care teams on home visits to eight different families caring for a child with life-limiting conditions. Results: Care practices of palliative care teams were characterized by familiarity, a resource-oriented attitude, empowerment of parents, shared decision-making and support for parents. Palliative care teams not only provided palliative medical treatment for the children, but also developed a trusting care partnership with parents. The teams employed a sensitive and multifaceted communication style in their collaboration with parents. Conclusions: Care practices in pediatric palliative care require time, communication skills, and a high level of psychosocial competence, to develop a trusting, collaborative relationship with parents. This should be taken into consideration when establishing pediatric palliative care structures, preparing guidelines, training staff, and deciding upon appropriate remuneration.

Hospital-Based Palliative and End-of-Life Care in the COVID-19 Pandemic: A Scoping Review

Aim: To identify the nature of the evidence reporting hospital-based palliative and end-of-life care during the COVID-19 pandemic. Background: The COVID-19 pandemic has seen an increase in the numbers of seriously ill people being cared for across all health services worldwide. Due to the rapid progression of severe symptoms, the majority of staff working in hospitals and other healthcare centres were providing end-of-life care. Little is known about the level of hospital-based palliative care service provided during the COVID-19 pandemic, particularly during surges in admission rates with an increased number of deaths accruing. Methods: A scoping review was conducted to search and select potential studies. The scoping review was guided by the framework of Arskey and O’Malley and advanced by the use of the methodology of the Joanna Briggs Institute. Results: Eighteen studies published between March 2020 and July 2021 were identified. Three broad categories included overall management strategy and logistics, symptom prevalence and management of patients with COVID-19 and end-of-life care needs within the current pandemic. Conclusions: This review highlights increased awareness and knowledge of palliative and end-of-life care provided in hospitals. The review also highlights the response of hospital-based palliative care teams to an evolving crisis, within the context of developed health systems under sustained and overwhelming pressure. Implications: Newly established clinical links and referral pathways developed during the initial COVID-19 surge between hospital-based palliative care and other healthcare teams, be continued and further enhanced. Understanding of the role of specialist palliative care providers in supporting palliative and end-of-life care within the hospital setting needs further investigation.

Trisomy 18 – When the Diagnosis Is Compatible With Life

Trisomy 18 is an autosomal chromosomal disorder characterized by the presence of an extra 18 chromosome. In the last decades, and as the therapeutic options have become more relevant, the medical community witnessed a paradigm shift on the offer of treatment to these children.This is a retrospective, cohort study that strives to characterize the clinical path and survival of the children with the diagnosis of trisomy 18, accompanied in a tertiary pediatric hospital between 1995 and 2020.Six children were identified with trisomy 18, two of them mosaic (33,3%) and four were females (66,7%). All had cardiovascular, cognitive and physical development anomalies or minor congenital anomalies (n=6, 100%) and most presented musculoskeletal anomalies (n=5, 83,3%) and feeding difficulties (n=4, 66,7%). Four children (66,7%) were reliant on devices or equipment and all needed chronic medication (n=6, 100%). Two children (33,3%) were submitted to surgical interventions. Four children (66,7%) were hospitalized in the last year of life. A decision of limitation of therapeutic effort was present in three cases (50%) with one child being referenced to pediatric palliative care (16,7%). One-month, one-year and ten-year survival were 66,7% (n=4), 33,3% (n=2, both mosaic), and 16,7% (n=1, mosaic) respectively.Conclusions: Knowledge on the clinical picture is of great importance regarding the neonatal care and the decisions about invasive treatments, which can involve ethical issues, highlighting, concurrently, the need for attempted referral of these children to pediatric palliative care teams.

Assessing the quality of deliberative stakeholder consultations involving allied health professionals in pediatric palliative care and hematology/oncology in Canada

Background In this paper we assess the quality of six deliberative stakeholder consultations regarding the implementation of a precision diagnostic for life-threatening pediatric brain tumors. Decision makers who base policy recommendations on the outputs of consultative exercises can presuppose that all deliberants are well informed of the policy issue, that participation in the deliberative process was fair, and that overcoming implementation barriers will necessarily result in practice change. Additional evidence is therefore needed to substantiate the informational quality of the deliberation, measure the equality of participation and study the effects on stakeholder reasoning to appropriately guide uptake of proposed recommendation(s). Methods Using the DeVries framework for assessing the deliberative quality, we analyzed data from 44 post-consultation evaluation surveys completed by pediatric oncology and palliative care teams at two tertiary pediatric healthcare centers in Canada. We also conducted turn-taking and word-contribution analyses from the text transcriptions of each deliberation to assess equality of participation using descriptive statistics. Results Deliberants agreed the quality of the deliberative process was fair (median ratings ranging from 9–10 out of 10) and the opportunities to receive expert information and discuss with others about the implementation of a new LDT were helpful (9.5 out of 10). While the session improved understanding of the implementation barriers and opportunities, it had marginal effects on deliberants’ reasoning about whether LDTs would change their own clinical practice (3–10 out of 10). Participation was proportionate in at least four of the six deliberations, where no deliberant took more than 20% of total turns and contributed equal to, or less than 20% of total words. Conclusion The quality assessment we performed demonstrates high informational value and perceived fairness of two deliberative stakeholder consultations involving pediatric palliative care and oncology teams in Canada. Quality assessments can reveal how the process of deliberation unfolds, whether deliberative outputs are the result of equitable participation among deliberants and what, if any, stakeholder voices may be missing. Such assessments should be routinely reported as a condition of methodological rigor and trustworthiness of deliberative stakeholder engagement research.

A Goal-Directed Model of Collaborative Decision Making in Hospice and Palliative Care

Hospice and palliative care teams face numerous barriers to the meaningful involvement of patients and families in medical decision making, which limits opportunities for exploration of the very values, preferences, and goals that ideally inform serious illness care. Researchers who develop and test interventions to address these barriers have noted the complementary utility of two existing models in supporting collaborative relationships between hospice and palliative care teams and the patients and families they serve: (1) the social problem-solving model, and (2) the integrative model of shared decision making in medical encounters. This paper describes the integration and extension of these two highly synergistic models, resulting in a goal-directed model of collaborative decision making in hospice and palliative care. Directions for practice innovation and research informed by the model are discussed at length.

Specialist palliative care teams and characteristics related to referral rate: a national cross-sectional survey among hospitals in the Netherlands

Background Specialist palliative care teams (SPCTs) in hospitals improve quality of life and satisfaction with care for patients with advanced disease. However, referrals to SPCTs are often limited. To identify areas for improvement of SPCTs’ service penetration, we explored the characteristics and level of integration of palliative care programmes and SPCTs in Dutch hospitals and we assessed the relation between these characteristics and specialist palliative care referral rates. Methods We performed a secondary analysis of a national cross-sectional survey conducted among hospitals in the Netherlands from March through May 2018. For this survey, a previously developed online questionnaire, containing 6 consensus-based integration indicators, was sent to palliative care programme leaders in all 78 hospitals. For referral rate we calculated the number of annual inpatient referrals to the SPCT as a percentage of the number of total annual hospital admissions. Referral rate was dichotomized into high (≥ third quartile) and low (< third quartile). Characteristics of SPCTs with high and low referral rate were compared using univariate analyses. P-values < 0.05 were considered significant. Results In total, 63 hospitals (81%) participated in the survey, of which 62 had an operational SPCT. The palliative care programmes of these hospitals consisted of inpatient consultation services (94%), interdisciplinary staffing (61%), outpatient clinics (45%), dedicated acute care beds (21%) and community-based palliative care (27%). The median referral rate was 0.56% (IQR 0.23–1.0%), ranging from 0 to 3.7%. Comparing SPCTs with high referral rate (≥1%, n = 17) and low referral rate (< 1%, n = 45) showed significant differences for SPCTs’ years of existence, staffing, their level of education, participation in other departments’ team meetings, provision of education and conducting research. With regard to integration, significant differences were found for the presence of outpatient clinics and timing of referrals. Conclusion In the Netherlands, palliative care programmes and specialist palliative care teams in hospitals vary in their level of integration and development, with more mature teams showing higher referral rates. Appropriate staffing, dedicated outpatient clinics, education and research appear means to improve service penetration and timing of referral for patients with advanced diseases.