Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC).

The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs.

A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic.

The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.

Anxiety is common in older adults with cancer (OACs) and their caregivers and is associated with poor outcomes including worse physical symptoms, poor treatment adherence and response, and longer hospitalizations. This study examined the feasibility, acceptability, adherence, and preliminary efficacy of a cognitive-behavioral therapy (CBT) intervention for OACs and their caregivers.

Patients with active cancer age 65 years and older and their caregivers were randomized to Managing Anxiety from Cancer (MAC), a seven-session CBT-based psychotherapy intervention delivered over the telephone or usual care. Patients and caregivers completed the intervention separately with licensed social workers. Self-report measures of anxiety, depression, and quality of life were administered after randomization and following intervention completion. Analyses were conducted separately for patients and caregivers and at the dyad level. Hierarchical Linear Modeling accounted for the within-dyad intraclass correlation coefficients (ICCs) by random intercepts associated with the dyads.

Twenty-nine dyads were randomized; 28 (96.6%) patients and 26 (89.7%) caregivers completed all study procedures. Of dyads randomized to MAC, 85.7% (n = 12) of patients and caregivers completed all seven sessions. Most patients (≥50%) and over 80% of caregivers rated the overall intervention and intervention components as “moderately” to “very” helpful. MAC was associated with a greater reduction in anxiety among dyads than usual care, the effect of MAC was greater in caregivers than in patients, and improvement in patient anxiety was associated with the reduction in caregiver anxiety. However, these results did not reach statistical significance.

This pilot study demonstrates the feasibility of MAC and suggests strategies for improving acceptability, with a focus on adherence. Furthermore, these results indicate that MAC is promising for the reduction of anxiety in OAC–caregiver dyads and may be particularly beneficial for OAC caregivers. Larger randomized controlled trials are needed to evaluate the efficacy of MAC.

Family caregivers (FCs) of cancer patients often experience high distress. This randomized clinical trial assessed the feasibility and preliminary effects of an intervention to improve FC supportive care.

A pragmatic and minimal intervention to improve FC supportive care was developed and pretested with FCs, oncology team, and family physicians to assess its relevance and acceptability. Then, FCs of lung cancer patients were randomized to the intervention or the control group. The intervention included (1) systematic FC distress screening and problem assessment in the first months after their relative cancer diagnosis, and every 2 months after; (2) privileged contact with an oncology nurse to address FC problems, provide emotional support and skills to play their caregiving role; (3) liaison with the family physician of FCs reporting high distress (distress thermometer score ≥4/10) to involve them in the provision of supportive care. Distress, the primary outcome, was measured every 3 months, for 9 months. Secondary outcomes included quality of life, caregiving preparedness, and perceived burden. At the end of their participation, a purposive sample of FC from the experimental group was individually interviewed to assess the intervention usefulness. Content analysis was performed.

A total of 109 FCs participated in the trial. FC distress decreased over time, but this reduction was observed in both groups. Similar results were found for secondary outcomes. However, FCs who received the intervention felt better prepared in caregiving than controls (p = 0.05). All 10 interviewed FCs valued the intervention, even though they clearly underused it. Knowing they could contact the oncology nurse served as a security net.

Although the intervention was not found effective, some of its aspects were positively perceived by FCs. As many of them experience high distress, an improved intervention should be developed to better support them.

One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.

A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.

FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families’ needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.

According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

The prevalence rates and adversities of delirium have not yet been systematically evaluated and are based on selected populations, limited sample sizes, and pooled studies. Therefore, this study assesses the prevalence rates and outcome of and odds ratios for managing services for delirium.

In this prospective cohort study, based on the Diagnostic and Statistical Manual (DSM) 5, the Delirium Observation Screening (DOS) scale, and the Intensive Care Delirium Screening Checklist (ICDSC) construct, 28,118 patients from 35 managing services were included, and the prevalence rates and adverse outcomes were determined by simple logistic regressions and their corresponding odds ratios (ORs).

Delirious patients were older, admitted from institutions (OR 3.44–5.2), admitted as emergencies (OR 1.87), hospitalized twice longer, and discharged, transferred to institutions (OR 5.47–6.6) rather than home (OR 0.1), or deceased (OR 43.88). The rate of undiagnosed delirium was 84.2%. The highest prevalence rates were recorded in the intensive care units (47.1–84.2%, pooled 67.9%); in the majority of medical services, rates ranged from 20% to 40% (pooled 26.2%), except, at both ends, palliative care (55.9%), endocrinology (8%), and rheumatology (4.4%). Conversely, in surgery and its related services, prevalence rates were lower (pooled 13.1%), except for cardio- and neurosurgical services (53.3% and 46.4%); the lowest prevalence rate was recorded in obstetrics (2%).

Delirium remains underdiagnosed, and novel screening approaches are required. Furthermore, this study identified the impact of delirium on patients, determined the prevalence rates for 32 services, and elucidated the association between individual services and delirium.

This study sought to compare the Hospital Anxiety and Depression Subscale (HADS-D) and Brief Edinburgh Depression Scale (BEDS) as case-finding tools of major depressive disorder in patients with advanced cancer in a palliative care service.

An observational study was performed which included patients with advanced cancer who attended the palliative care service at the National Institute of Cancer in Mexico. Patients were asked to fill out the Hospital Anxiety and Depression Scale (HADS) and BEDS and were then assessed by a psychiatrist to evaluate major depressive disorder (MDD) as per the DSM-5 criteria. The case-finding capability of each scale was determined using receiver operating characteristic curves, assessing the area under the curve (AUC) in comparison to the clinical diagnosis.

Eighty-nine patients were included; median age was 57 years, and 71% were female. Among these, 19 patients were diagnosed with MDD during the interview. When comparing the self-reported scales, BEDS had a better performance compared with HADS-D (AUC 0.8541 vs. 0.7665). Limitations include a heterogeneous population and a limited sample size.

The BEDS outperformed the HADS-D tool in discriminating patients with and without depression. A BEDS cutoff value of ≥5 is suggested as a case-finding score for depression in this population.

We sought to characterize patients’ preferences for the role of religious and spiritual (R&S) beliefs and practices during cancer treatment and describe the R&S resources desired by patients during the perioperative period.

A cross-sectional survey was administered to individuals who underwent cancer-directed surgery. Data on demographics and R&S beliefs/preferences were collected and analyzed.

Among 236 participants, average age was 58.8 (SD = 12.10) years; the majority were female (76.2%), white (94.1%), had a significant other or spouse (60.2%), and were breast cancer survivors (43.6%). Overall, more than one-half (55.9%) of individuals identified themselves as being religious, while others identified as only spiritual (27.9%) or neither (16.2%). Patients who identified as religious wanted R&S integrated into their care more often than patients who were only spiritual or neither (p < 0.001). Nearly half of participants (49.6%) wanted R&S resources when admitted to the hospital including the opportunity to speak with an R&S leader (e.g., rabbi; 72.1%), R&S texts (64.0%), and journaling materials (54.1%). Irrespective of R&S identification, 68.0% of patients did not want their physician to engage with them about R&S topics.

Access to R&S resources is important during cancer treatment, and incorporating R&S into cancer care may be especially important to patients that identify as religious. R&S needs should be addressed as part of the cancer care plan.

On October 10, 2020, the Memorial Sloan Kettering Cancer Center Supportive Care Service hosted their first-ever United States (US) World Hospice and Palliative Care Day (WHPCD) Celebration. The purpose of this article is to describe the US inaugural event in alignment with the broader goals of WHPCD and provide lessons learned in anticipation of the second annual conference to be held on October 5–6, 2021.

Description of the inaugural event in the context of COVID-19 and WHPCD, co-planning conference team reflection, and attendee survey responses.

The Worldwide Hospice Palliative Care Alliance initially launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The US-based innovative virtual conference featured 23 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across nine diverse sessions addressing priorities at the intersection of COVID-19, social injustice, and the global burden of serious health-related suffering. Two primary aims guided the event: community building and wisdom sharing. Nearly 270 registrants from at least 16 countries and one dozen states across the US joined the free program focused on both personal and professional development.

Unlike many other academic conferences and professional gatherings that were relegated to online forums due to pandemic-related restrictions, the US WHPCD Celebration was intentionally established to create a virtual coming together for collective reflection on the barriers and facilitators of palliative care delivery amid vast societal change. The goal to ensure a globally relevant and culturally inclusive agenda will continue to draw increased participation at an international level during future annual events. Finally, the transparent and respectful sharing of palliative care team experiences in the year preceding the conference established a safe environment for both individual expression and scholarly discussion.

With over two million deaths and almost 100 million confirmed cases, the COVID-19 pandemic has caused a “tsunami of suffering.” Health care workers, including palliative care workers, have been severely impacted. This study explores how the COVID-19 pandemic has impacted palliative care workers around the world and describes the coping strategies they have adopted to face their specific situation.

We conducted a qualitative analysis of written, unstructured comments provided by respondents to a survey of IAHPC members between May and June 2020. Free text was exported to MAX QDA, and a thematic analysis was performed by reading the comments and developing a coding frame.

Seventy-seven palliative care workers from 41 countries submitted at least one written comment, resulting in a data corpus of 10,694 words and a total of 374 coded comments. Eight main themes are emerged from the analysis: palliative care development, workforce impact, work reorganization, palliative care reconceptualization, economic and financial impacts, increased risk, emotional impact, and coping strategies.

The pandemic has had a huge impact on palliative care workers including their ability to work and their financial status. It has generated increased workloads and placed them in vulnerable positions that affect their emotional well-being, resulting in distress and burnout. Counseling and support networks provide important resilience-building buffers. Coping strategies such as team and family support are important factors in workers’ capacity to adapt and respond. The pandemic is changing the concept and praxis of palliative care. Government officials, academia, providers, and affected populations need to work together to develop, and implement steps to ensure palliative care integration into response preparedness plans so as not to leave anyone behind, including health workers.

Hispanics often have disparities at the end of life. They are more likely to die full code and less likely to have discussions regarding prognosis and do not resuscitate (DNR)/do not intubate (DNI), despite studies showing Hispanic values comfort over the extension of life. Barriers to patient-centered care include language,socioeconomic status and health literacy.

We evaluated the impact of palliative care (PC) consults on the change of code status and hospice referrals, comparing seriously ill Hispanic and non-Hispanic white patients.

A retrospective cohort study of all white and Hispanic patients referred to the PC service of a county hospital from 2006 to 2012. We evaluated ethnicity, language, code status at admission and after PC consult, and hospice discharge. Chi-squared tests were used to analyze characteristics among three groups: non-Hispanic white, English-speaking Hispanic, and Spanish-speaking Hispanic patients.

Of 925 patients, 511 (55%) were non-Hispanic white, 208 (23%) were English-speaking Hispanic, and 206 (22%) were Spanish-speaking Hispanic patients. On admission, there was no statistically significant difference in code status among the three groups (57%, 64%, and 59% were full code, respectively, p = 0.5). After PC consults, Spanish-speaking Hispanic patients were more likely to change their code status to DNR/DNI when compared with non-Hispanic white and English-speaking Hispanic patients (44% vs. 32% vs. 28%, p = 0.05). Spanish-speaking Hispanic patients were more likely to be discharged to hospice when compared with English-speaking Hispanics and non-Hispanic whites (33%, 29%, and 23%, respectively, p = 0.04).

Spanish-speaking Hispanic patients were more likely to change from full code to DNR/DNI compared with non-Hispanic white and English-speaking Hispanic patients, despite similar code status preferences on admission. They were also more likely to be discharged to hospice. PC consults may play an important role in helping patients to align their care with their values and may prevent unwanted aggressive interventions at the end of life.

This study aimed to develop an assessment tool measuring comprehensive interdisciplinary competence in end-of-life care (EoLC) and investigate its content, construct validity, reliability, and their correlates.

Items of the Comprehensive End-of-Life Care Competence Scale (CECCS) were developed according to a comprehensive core competence framework in EoLC and refined by a multi-disciplinary panel of experts. The psychometric properties were further tested through region-wide surveys of self-administered questionnaires completed by health and social care professionals in Hong Kong.

Participants comprised social workers, nurses, physicians, and allied health care professionals (445 participants in 2016, 410 in 2017, and 523 in 2018). Factor analysis validated the construct of the questionnaire which encompassed 26 items describing EoLC core competences in seven domains with satisfactory internal reliability (confirmatory factor analysis: χ2/df = 3.12, GFI = 0.85, TLI = 0.93, CFI = 0.94, RMSEA = 0.07; Cronbach's alphas ranged from 0.89 to 0.97): overarching value & knowledge, communication skills, symptom management, psychosocial and community care, end-of-life decision-making, bereavement care, and self-care. Higher perceived levels in these competences were correlated with a higher level of job meaningfulness and satisfaction (r ranged from 0.17 to 0.39, p < 0.01) and correlated with lower perceived stress (r ranged from –0.11 to –0.28, p < 0.05). Regression analysis found that age and work involvement in EoLC were positively associated with the perceived competences in all domains; professionals working in hospices reported higher levels of competence than workers in other settings; social workers showed lower perceived competences in symptom management, but higher levels in bereavement care than other health care professionals.

The validity and internal reliability of CECCS were demonstrated. The levels of perceived competences working in EoLC were significantly associated with professionals’ job-related well-being. Practically, there is still room for improvement in comprehensive competences among health and social care workers in Hong Kong.

Family carers (FCs) of nursing home (NH) residents are best placed to notice deteriorations that signal impending death in their relative, which can open a conversation with healthcare professionals (HCPs) about adjusting the care plan. We explored contributors to bereaved FCs’ decision to transition towards palliative-oriented care for their relatives in NHs.

This qualitative descriptive study used a phenomenological design. Thirty-two bereaved FCs across 13 Italian NHs completed semi-structured interviews. Additional data were collected on NH referrals to palliative care services (PCS) in the 6 months before study start and treatments provided in the last week of life. Content analysis with a combined inductive and deductive approach was applied to identify codes and fit them into an a priori framework. When codes did not fit, they were grouped into new categories, which were finally gathered into themes.

FCs reported four types of “trigger events” that made them doubt that their relative would recover: (1) physical deterioration (e.g., stopping eating/walking or swallowing problems); (2) social confirmation (e.g., confirming their relative's condition with friends); (3) multiple hospitalizations; and (4) external indicators (e.g., medical examinations by external consultants). A “resident-centered environment” helped FCs recognize trigger events and “raise awareness of the possibility of death”; however, the “need for reassurance” was pivotal to a “gradual transition towards palliative-oriented care”. When participants did not recognize the trigger event, their relative continued to receive curative-oriented care. NHs that referred residents to PCS discussed palliative-oriented care more frequently with FCs, had a lower nurse-to-resident and nurse aide-to-resident ratio, and administered more palliative-oriented care.

Trigger events represent an opportunity to discuss residents’ prognosis and are the starting point for a gradual transition towards palliative-oriented care. Adequate staffing, teamwork, and communication between FCs and healthcare professionals contribute to a sensitive, timely shift in care goals.

Palliative care providers may face questions from patients and relatives regarding the heritability of cancers. Implications of such discussions for providers have been little explored. This study aimed to gather palliative care providers’ views on their main needs, roles, and ethical concerns regarding cancer family history discussions.

The palliative care providers who participated in the 2015 and 2017 annual meetings of the Quebec Palliative Care Association were approached to complete a web-based questionnaire. Study participants answered the questionnaire between November 2016 and July 2017. They were asked to identify the most facilitating factor for cancer family history discussions, as well as their most important knowledge needs, potential role, and ethical concerns. Descriptive analyses were conducted.

Ninety-four palliative care providers answered the questionnaire. Access to specialized resources to obtain information and protocols or guidelines were considered the most facilitating factors for cancer family history discussions by 32% and 20% of providers, respectively. Knowledge of hereditary cancers was the most relevant educational need for 53%. Thirty-eight per cent considered essential to be informed about their rights and duties regarding cancer family history discussions. Being attentive to patients’ concerns and referring families to appropriate resources were identified as the most relevant roles for palliative care providers by 47% and 34% of respondents, respectively. Fifty-eight per cent agreed that cancer family history discussions should be initiated only if beneficial to family members.

Education on hereditary cancers made consensus among palliative care providers as the most important knowledge need regarding discussing cancer family history at the end of life. Nonetheless, other less commonly expressed needs, including access to genetics specialists, protocols, or guidelines, and awareness of provider rights and duties concerning such discussions, deserve attention. Answering providers’ needs might help optimize cancer predisposition management in palliative care.

Few studies have examined burnout in psychosocial oncology clinicians. The aim of this systematic review was to summarize what is known about the prevalence and severity of burnout in psychosocial clinicians who work in oncology settings and the factors that are believed to contribute or protect against it.

Articles on burnout (including compassion fatigue and secondary trauma) in psychosocial oncology clinicians were identified by searching PubMed/MEDLINE, EMBASE, PsycINFO, the Cumulative Index to Nursing and Allied Health Literature, and the Web of Science Core Collection.

Thirty-eight articles were reviewed at the full-text level, and of those, nine met study inclusion criteria. All were published between 2004 and 2018 and included data from 678 psychosocial clinicians. Quality assessment revealed relatively low risk of bias and high methodological quality. Study composition and sample size varied greatly, and the majority of clinicians were aged between 40 and 59 years. Across studies, 10 different measures were used to assess burnout, secondary traumatic stress, and compassion fatigue, in addition to factors that might impact burnout, including work engagement, meaning, and moral distress. When compared with other medical professionals, psychosocial oncology clinicians endorsed lower levels of burnout.

This systematic review suggests that psychosocial clinicians are not at increased risk of burnout compared with other health care professionals working in oncology or in mental health. Although the data are quite limited, several factors appear to be associated with less burnout in psychosocial clinicians, including exposure to patient recovery, discussing traumas, less moral distress, and finding meaning in their work. More research using standardized measures of burnout with larger samples of clinicians is needed to examine both prevalence rates and how the experience of burnout changes over time. By virtue of their training, psychosocial clinicians are well placed to support each other and their nursing and medical colleagues.

China is home to one-fifth of the world's population. In the setting of a growing and aging population as well as the designation of palliative care access as a human right in 2013, the implementation of palliative care in China gains special importance. Palliative care education is an important precondition to ensure a nationwide access to palliative care. This systematic review details the status of under- and postgraduate palliative care education in China, examining both the students’ and physicians’ perception, knowledge, and skills in palliative care, and the available educational interventions and programs.

Four databases were searched in September 2018, using considered search terms. Titles, abstracts, and, if necessary, full texts were scanned to identify publications matching the inclusion criteria.

Nine publications were included. They revealed six findings: palliative care education is lacking in both under- and postgraduate medical education, only a few programs exist. Palliative care as a concept is well known, detailed knowledge, and practical skills are less developed. Chinese physicians consider palliative care an important field to be developed in cancer care, yet the majority of healthcare professionals are not willing to work in palliative care services. Communication should be a main emphasis in palliative care education, especially in undergraduate training. Finally, there is no highly qualified research on under- or postgraduate palliative care education in Mainland China.

These findings suggest that palliative care education in China is in demand and should be systematically integrated into medical education. Further research on the topic is urgently needed.

Expectant parents who live through perinatal loss experience intense grief, which is not always acknowledged or accepted. A screening tool to detect bereaved parents’ grief reactions can guide professionals, including perinatal palliative care teams, to provide follow-up for those in need. This review's goal is to identify and synthesize the international published literature on existent instruments specifically measuring the grieving process after any perinatal loss and to identify factors that could moderate grief reactions.

Systematic review (PROSPERO # CRD42018092555) with critical synthesis. PUBMED, Cochrane, and PsycINFO databases were searched in English language articles using the keywords “perinatal” AND (“grief” OR “bereavement” OR mourning) AND (“scale” OR “questionnaire” OR “measure” OR “assessment”) up to May 2018. Eligibility criteria included every study using a measure to assess perinatal grief after all kinds of perinatal losses, including validations and translations to other languages and interventions designed to alleviate grief symptoms.

A total of 67 papers met inclusion criteria. Seven instruments measuring perinatal grief published between 1984 and 2002 are described. The Perinatal Grief Scale (PGS) was used in 53 of the selected studies. Of those, 39 analyzed factors associated with grief reactions. Six articles used PGS scores to evaluate pre- and post-bereavement interventions. Studies in English language only might have limited the number of articles.

The PGS is the most used standardized measures to assess grief after perinatal loss. All parents living through any kind of perinatal loss should be screened.

Traditionally, the psychological well-being of healthcare workers has been taken for granted — it has even been considered a part of the requirements that were demanded of them. When these professionals have experienced suffering and psychological depletion, they have been held accountable for this suffering, adopting an individualistic and reductionist viewpoint focused only on the professional. This approach has become obsolete due to its proven ineffectiveness, especially from an ethics of responsibility and organization viewpoint.

The psychological well-being of the healthcare worker (and its opposites: suffering, exhaustion, and disenchantment) is advantageous to the professional's commitment to the institution, to their work performance, and to their personal life.

The objective of this paper is to reflect on the psychological suffering of the palliative care professional.

We will reflect on the three levels of responsibility that influence such suffering (micro-meso-macro-ethical; worker-environment-institution).

We will propose a global strategy for the care of psychological well-being supported by scientific evidence and key references.

We conclude with some contributions on what we have learned and still have to learn on this topic.