Palliative care training at basic, intermediate, and specialist levels, recommended by the World Health Organization (WHO), is challenging to access in resource-poor countries and regions. Providing support in this regard would seem a moral imperative for all countries with established palliative care education systems and a strong resource base. In collaboration with WHO European Office and European Association for Palliative Care, this paper looks into the educational requirements in palliative care at postgraduate level within Europe.

A survey was specifically designed to gather opinions and comments on elements of palliative care education from European experts. Participants were invited to assess the European Association for Palliative Care core competencies on a five-item scale and to define essential learning goals. Survey data were statistically analyzed using IBM SPSS Statistics Software. Qualitative data were thematically analyzed.

A total of 195 data sets were recorded; 82 were completed fully. The statistical analysis revealed a high agreement regarding the key elements of palliative care education. The thematic analysis indicated that at postgraduate level all healthcare providers need to (1) comprehend the palliative care philosophy, (2) be able to demonstrate the complex symptom assessment and management competencies, (3) be able to design care plans based on patients and families wishes integrating multiprofessional and interdisciplinary approaches, and (4) be able to listen and self-reflect.

According to the WHO, inadequate skills and capacities of healthcare workers are one of the four barriers hindering the access to palliative care. This paper contains a new and comprehensive list of learning goals essential for multidisciplinary postgraduate palliative care education. Besides highlighting the relevant competencies, the article provides best-practice toolboxes with teaching and assessment methods. The article comments on the WHO's palliative care definition and underpins the importance of the role of the education in knowledge development and skills acquisition.

The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated.

The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers.

A cohort of primary family caregivers of patients admitted to one of three palliative care services in Melbourne, Australia, participated in the study (n = 301). Sociodemographic, mental health, and bereavement-related data were collected from the caregiver upon the patient's admission to palliative care (T1). Further data addressing circumstances around the death and psychological health were collected at six (T2, n = 167), 13 (T3, n = 143), and 37 months (T4, n = 85) after bereavement.

At T4, 5% and 14% of bereaved caregivers met criteria for PGD and subthreshold PGD, respectively. Applying the total PGD score at T4, linear regression analysis found preloss anticipatory grief measured at T1 and self-reported coping measured at T2 were highly statistically significant predictors (both p < 0.0001) of PGD in the longer term.

For almost 20% of caregivers, the symptoms of PGD appear to persist at least three years post bereavement. These findings support the importance of screening caregivers upon the patient's admission to palliative care and at six months after bereavement to ascertain their current mental health. Ideally, caregivers at risk of developing PGD can be identified and treated before PGD becomes entrenched.

Family caregivers (FCs) in China provide hospice care to terminally ill cancer patients; however, few studies have been conducted in China on caregiver burden and bereavement experiences as a process that continues over time. The purpose of this study was to identify the main elements of caring and bereavement experiences for FCs caring for patients diagnosed with terminal cancer.

Twenty in-depth qualitative semistructured interviews were conducted with FCs providing care in a hospice unit in Shenzhen, Southern China. Interview transcripts were analyzed via thematic content analysis.

A framework based on the following eight principal themes was developed through content analysis of our FC interviews: symptoms of the illness, the truth-telling process, attitudes toward death, the “color” of death, social and professional support, the moment of death, and grief and loss.

The analysis showed that caregiving may positively or negatively influence the bereavement process.

Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life.

A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits.

Nineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance.

Our findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.

In seriously ill cardiac patients, several psychotherapy efficacy studies demonstrate little to no reduction in depression or improvement in quality of life, and little is known about how to improve psychotherapies to best address the range of patient needs. An interpersonal and behavioral activation psychotherapy was a key component of the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) multisite randomized clinical trial. Although depressive symptoms did improve in the CASA trial, questions remain about how best to tailor psychotherapies to the needs of seriously ill patient populations. The study objective was to describe psychosocial needs emerging during a clinical trial of a palliative care and interpersonal and behavioral activation psychotherapy intervention that were not specifically addressed by the psychotherapy.

During the CASA trial, patient needs were prospectively tracked by the psychotherapist in each visit note using an a priori code list. Preplanned analysis of study data using directed content analysis was conducted analyzing the a priori code list, which were collapsed by team consensus into larger themes. The frequency of each code and theme were calculated into a percentage of visits.

A total of 150 patients received one or more visits from the therapist and were included in the analysis. Participants screened positive for depressive disorder (47%), had poor heart failure-specific health status (mean Kansas City Cardiomyopathy Questionnaire score = 48.6; SD = 17.4), and multiple comorbidities (median 4.3). Common needs that emerged during the therapy included difficulty coping with fatigue (48%), pain (28%), and satisfaction issues with medical care (43%). The following broader themes emerged: social support (77% of sessions), unmet symptom needs (67%), healthcare navigation (48%), housing, legal, safety, and transportation (32%), and end of life (12%).

Coping with chronic symptoms and case management needs commonly emerged during psychotherapy visits. Future psychotherapy interventions in seriously ill populations should consider the importance of coping with chronic symptoms and case management.

Palliative social workers have taken steps to increase the numbers of social workers trained and competent to deliver effective psychosocial palliative care. Despite these developments, masters of social work (MSW) programs have only begun to develop curricula preparing students for entry-level practice. This study sought to determine the type and extent of content areas included in MSW courses dedicated to palliative care or with content related to palliative care practice.

A cross-sectional study using an online questionnaire was conducted. All 248 accredited MSW programs in the United States and 32 programs in Canada were invited to participate. Participants were asked to name the courses in their MSW program that were dedicated to, or included content on, palliative care, and submit the syllabi for these courses. Data comprised course content for each class session and required readings. A grounded theory approach was used to identify the topics covered.

Of the 105 participating programs that responded to the survey, 42 submitted 70 syllabi for courses with at least some palliative care content. There were 29 topics identified. The most common topic was grief, loss, and bereavement, followed closely by behavioral and mental health issues, and supporting family and friends; cultural perspectives and advance care planning were also common topics. For the 10 syllabi from courses dedicated to palliative care, supporting family was the most common topical area, followed closely by interprofessional practice and advance care planning.

Although there are many challenges to introducing palliative care content into MSW programs, including unqualified faculty and competing course material and electives of equally compelling content, there are model curricula for dedicated palliative care courses. With the large growth of palliative care programs, the time is ripe to add specialty palliative care courses and to add palliative care content into existing courses.

The prevalence of burnout and distress among palliative care professionals has received much attention since research suggests it negatively impacts the quality of care. Although limited, research suggests low levels of burnout or distress among healthcare chaplains; however, there has been no research among chaplains working in specific clinical contexts, including palliative care.

This study explored the distress, self-care, and debriefing practices of chaplains working in palliative care.

Exploratory, cross-sectional survey of professional chaplains. Electronic surveys were sent to members of four professional chaplaincy organizations between February and April 2015. Primary measures of interest included Professional Distress, Distress from Theodicy, Informal Self-care, Formal Self-care, and debriefing practices.

More than 60% of chaplains working in palliative care reported feeling worn out in the past 3 months because of their work as a helper; at least 33% practice Informal Self-care weekly. Bivariate analysis suggested significant associations between Informal Self-care and both Professional Distress and Distress from Theodicy. Multivariate analysis also identified that distress decreased as Informal and Formal Self-care increased.

Chaplains working in palliative care appear moderately distressed, possibly more so than chaplains working in other clinical areas. These chaplains also use debriefing, with non-chaplain palliative colleagues, to process clinical experiences. Further research is needed about the role of religious or spiritual beliefs and practices in protecting against stress associated with care for people at the end of life.

Understanding factors that are associated with more adaptive death attitudes and competencies can inspire future health-promoting palliative care strategies and inform approaches to training and development for health professionals. The potential importance of meaning, purpose, quality, and values in life for promoting adaptive death attitudes has been highlighted, but there is limited research in this area, particularly in relation to death competence. The purpose of this cross-sectional study was to develop an understanding of demographic and life-related factors associated with perceived death competence, such as meaning in life and quality of life.

During the course enrollment period of a Massive-Online-Open-Course about death and dying, 277 participants completed questionnaires on death competence, meaning in life, quality of life, and sociodemographic background.

Findings indicated that greater presence of meaning in life, quality of life, age, death experience, and carer experience were each statistically significant unique predictors of death competence scores. Life-related variables were more strongly associated with death competence than demographic variables. Bereavement experience and experience caring for the dying was associated with greater death competence, but there were no differences on death competence between health professionals and the general community. Above all other factors, the presence of meaning in life was the strongest predictor of higher perceived competence in coping with death.

The findings demonstrate important interconnections between our attitudes about life and death. Knowledge of factors associated with poorer death competence may help identify those at risk of greater distress when facing death, and might prove useful additions to bereavement risk assessments. Understanding factors associated with greater death competence in health professionals and volunteers may help predict or prevent burnout and compassion fatigue, and help identify who would benefit from additional training and support. Future longitudinal studies including both health professionals and the general community are needed to determine the effect adaptive attitudes toward meaning in life can potentially have on bolstering subsequent adaptive coping and competence regarding death and dying.

Implementation of patient-reported outcome measures for patients with palliative care needs is characterized by both enablers and barriers. The ways in which healthcare professionals experience the use of assessment tools is important. Our aims were to explore factors contributing to or hindering patients with palliative care needs in assessing their symptoms with the Integrated Palliative Care Outcome Scale (IPOS) and to explore healthcare professionals’ experiences of the use of IPOS in acute care settings.

Data were collected as a part of the evaluation of the feasibility of an implementation strategy for introducing IPOS. Data from three participating acute care units were included. We used descriptive and analytical statistics; a qualitative content analysis was also performed.

A total of 309 patients were eligible to be offered assessment of symptoms with IPOS. Of these 69 (22%) had completed IPOS. A significant positive association was found between healthcare professionals’ participation in training sessions and completed IPOS. The experiences of IPOS were split into two categories: “IPOS acting as a facilitator” and “barriers to the use of IPOS.” The use of IPOS was described as contributing to person-centered care of patients with palliative care needs and inspiration to improved routines. Healthcare professionals’ feelings of uncertainty about how to approach severely ill patients and their family members appear to have hindered their use of IPOS.

We found an association between healthcare professionals’ participation in training sessions and patients who completed IPOS, indicating the need for a high degree of attendance at the training to achieve successful implementation. The healthcare professionals expressed feelings of insecurity concerning the use of IPOS indicating a need for further education and clinical support in its use of IPOS. Nevertheless, use of IPOS was considered to contribute to improved care of patients with palliative care needs.

Many patients with advanced serious illness or at the end of life experience delirium, a potentially reversible form of acute brain dysfunction, which may impair ability to participate in medical decision-making and to engage with their loved ones. Screening for delirium provides an opportunity to address modifiable causes. Unfortunately, delirium remains underrecognized. The main objective of this pilot was to validate the brief Confusion Assessment Method (bCAM), a two-minute delirium-screening tool, in a veteran palliative care sample.

This was a pilot prospective, observational study that included hospitalized patients evaluated by the palliative care service at a single Veterans’ Administration Medical Center. The bCAM was compared against the reference standard, the Diagnostic and Statistical Manual of Mental Disorders, fifth edition. Both assessments were blinded and conducted within 30 minutes of each other.

We enrolled 36 patients who were a median of 67 years (interquartile range 63–73). The primary reasons for admission to the hospital were sepsis or severe infection (33%), severe cardiac disease (including heart failure, cardiogenic shock, and myocardial infarction) (17%), or gastrointestinal/liver disease (17%). The bCAM performed well against the Diagnostic and Statistical Manual of Mental Disorders, fifth edition, for detecting delirium, with a sensitivity (95% confidence interval) of 0.80 (0.4, 0.96) and specificity of 0.87 (0.67, 0.96).

Delirium was present in 27% of patients enrolled and never recognized by the palliative care service in routine clinical care. The bCAM provided good sensitivity and specificity in a pilot of palliative care patients, providing a method for nonpsychiatrically trained personnel to detect delirium.

Wearable devices such as a wrist actigraph may have a potential to objectively estimate patients’ functioning and may supplement performance status (PS). This proof-of-concept study aimed to evaluate whether actigraphy data are significantly associated with patients’ functioning and are predictive of their survival in patients with metastatic non-small cell lung cancer.

We collected actigraphy data for a three-day period in ambulatory patients with stage IV non-small cell lung cancer. We computed correlations between actigraphy data (specifically, proportion of time spent immobile while awake) and clinician-rated PS, subjective report of physical activities, quality of life (the Functional Assessment of Cancer Therapy – Trial Outcome Index), and survival.

Actigraphy data (the proportion of time awake spent immobile) were significantly correlated with Functional Assessment of Cancer Therapy – Trial Outcome Index (r = −0.53, p < 0.001) and with the Eastern Cooperative Oncology Group PS (ECOG PS) (r = 0.37, p < 0.001). The proportion of time awake spent immobile was significantly associated with worse survival. For each 10% increase in this measure, the hazard ratio (HR) was 1.48 (95% confidence interval [CI95%] = 1.06, 2.06) for overall mortality, and odds ratio was 2.99 (CI95% = 1.27, 7.05) for six-month mortality. ECOG PS was also associated with worse survival (HR = 2.80, CI95% = 1.34, 5.86). Among patients with ECOG PS 0-1, the percentage of time awake spent immobile was significantly associated with worse survival, HR = 1.93 (CI95% = 1.10, 3.42), whereas ECOG PS did not predict survival.

Actigraphy may have potential to predict important clinical outcomes, such as quality of life and survival, and may serve to supplement PS. Further validation study is warranted.

Hospice nurses frequently encounter patients and families under tremendous emotional distress, yet the communication techniques they use in emotionally charged situations have rarely been investigated. In this study, researchers sought to examine hospice nurses’ use of validation communication techniques, which have been shown in prior research to be effective in supporting individuals experiencing emotional distress.

Researchers performed a directed content analysis of audiorecordings of 65 hospice nurses’ home visits by identifying instances when nurses used validation communication techniques and rating the level of complexity of those techniques.

All nurses used validation communication techniques at least once during their home visits. Use of lower level (i.e., more basic) techniques was more common than use of higher level (i.e., more complex) techniques.

Although hospice nurses appear to use basic validation techniques naturally, benefit may be found in the use of higher level techniques, which have been shown to result in improved clinical outcomes in other settings.

In the United States, approximately 20% patients die annually during a hospitalization with an intensive care unit (ICU) stay. Each year, critical care costs exceed $82 billion, accounting for 13% of all inpatient hospital costs. Treatment of sepsis is listed as the most expensive condition in US hospitals, costing more than $20 billion annually. Electronic Medical Orders for Life-Sustaining Treatment (eMOLST) is a standardized documentation process used in New York State to convey patients’ wishes regarding cardiopulmonary resuscitation and other life-sustaining treatments. No study to date has looked at the effect of eMOLST as an advance care planning tool on ICU and hospital costs using estimates of direct costs. The objective of our study was to investigate whether signing of eMOLST results in any reduction in length of stay and direct costs for a community-based hospital in New York State.

A retrospective chart review was conducted between July 2016 and July 2017. Primary outcome measures included length of hospital stay, ICU length of stay, total direct costs, and ICU costs. Inclusion criteria were patients ≥65 years of age and admitted into the ICU with a diagnosis of sepsis. An independent samples t test was used to test for significant differences between those who had or had not completed the eMOLST form.

There were no statistical differences for patients who completed or did not complete the eMOLST form on hospital's total direct cost, ICU cost, total length of hospital stay, and total hours spent in the ICU.

Completing an eMOLST form did not have any effect on reducing total direct cost, ICU cost, total length of hospital stay, and total hours spent in the ICU.

The road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective.

This multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives.

Improvement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources.

To our knowledge, this is the first time that family caregivers’ perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.

Demoralization is an existential distress syndrome that consists of an incapacity of coping, helplessness, hopelessness, loss of meaning and purpose, and impaired self-esteem. It can affect cancer patients, and the Demoralization Scale is a valid instrument to assess it. The present study aimed to investigate the prevalence of demoralization in end-of-life cancer patients and its associations with the medical and psychosocial variables. In addition, the latent dimensions of demoralization emerging in this distinctive population were explored.

The study is cross-sectional. The sample consisted of 235 end-of-life cancer patients with a Karnofsky performance status (KPS) lower than 50 and a life expectancy of a few weeks. For each patient, personal and medical data was gathered by a palliative physician and a set of validated rating scales, assessing demoralization, anxiety, depression, physical symptoms, pain, spiritual well-being, and dignity, was administered by a psychologist during the first consultation.

Sixty-four participants (27.2%) had low demoralization, 50.2% (n = 118) had medium demoralization, and 22.6% (n = 53) had high demoralization. Factor analysis evidenced a five-factor solution that identified the following demoralization factors: Emotional Distress and Inability to Cope, Loss of Purpose and Meaning, Worthlessness, Sense of Failure, and Dysphoria. All the considered variables were associated with demoralization, except for pain, nausea, breathing problems, and sociodemographic and clinical variables.

End-of-life cancer patients showed higher levels of demoralization than has been reported in other studies with advanced cancer. These data could suggest that demoralization could increase in proximity to death and with impaired clinical condition. In particular, the five demoralization dimensions that emerged could represent the typical concerns around which the syndrome evolves in end-of-life cancer patients. Finally, spiritual well-being could play a protective role with respect to demoralization.

Although thiamine deficiency (TD) and Wernicke encephalopathy (WE) are not rare in cancer patients, the cases reported to date developed TD and/or WE after treatment had started.

From a series of cancer patients, we report a patient diagnosed with TD without the typical clinical symptoms of WE at the preoperative psychiatric examination.

A 43-year-old woman with ovarian cancer was referred by her oncologist to the psycho-oncology outpatient clinic for preoperative psychiatric evaluation. Her tumor had been growing rapidly before the referral. Although she did not develop delirium, cerebellar signs, or eye symptoms, we suspected she might have developed TD because of her 2-month loss of appetite as the storage capacity of thiamine in the body is approximately 18 days. The diagnosis of TD was supported by abnormally low serum thiamine levels.

Cancer therapists need to be aware that thiamine deficiency may occur even before the start of cancer treatment. In cases with a loss of appetite of more than 2 weeks’ duration, in particular, thiamine deficiency should be considered if the tumor is rapidly increasing, regardless of the presence or absence of delirium.

Thiamine deficiency (TD) is recognized in various kinds of disease with associated loss of appetite including cancer; however, TD has not been recognized in the family caregivers of cancer patients to date.

From a series of cancer patient caregivers, we reported an aged family caregiver who developed TD while caring for the cancer patient.

The caregiver was a 90-year-old male. He had been accompanying his wife, who was diagnosed with colon cancer 4 years previously, on hospital visits as the primary caregiver, but because of psychological issues, he was recommended to visit the psycho-oncology department's “caregiver's clinic” for a consultation. Detailed examination revealed that his appetite had been only about 50% of usual from about one year before, and he had lost 12 kg in weight in one year. The diagnosis of TD was supported by his abnormally low serum thiamine level.

This report demonstrates that there is a possibility that care providers could develop TD from the burdens associated with caregiving. TD should be considered whenever there is a loss of appetite lasting for more than 2 weeks, and medical staff should pay careful attention to the physical condition of care providers to prevent complications resulting from TD.