In 2018, a study was conducted in the Eastern and South-eastern Europe and Central Asia. National leaders of palliative care were asked to describe developments in postgraduate education in their region. They were asked whether the introduction of a European curriculum would be useful in their country. The aim was to explore the structures of postgraduate education at country level in order to define the barriers and opportunities.

This is an ethnographic study based on semi-structured field interviews. A thematic analysis was chosen for data extraction and a narrative synthesis for the systematic presentation and critical discussion of the results.

Thirty-two interviews were recorded in 23 countries. The analysis revealed 4 main themes: (1) general barriers to access, (2) necessary to improve palliative care education, (3) palliative care core curriculum – the theoretical framework, and (4) challenges in implementation. These main themes were complemented by 19 subthemes.

Palliative care is understood as a universal idea, which in practice means accepting social pluralism and learning to respect unique individual needs. This makes teaching palliative care a very special task because there are no golden standards for dealing with each individual as they are. In theory, a European curriculum recommendation is useful to convince governments and other key stakeholders of the importance of postgraduate education. In practice, such a curriculum needs to be adapted to the constraints of health services and human resources. Validated quality assessment criteria for palliative care education are crucial to advance postgraduate education.

Up to 10% of bereaved individuals can develop prolonged grief disorder. Several risk factors for prolonged grief symptom severity in family members have been identified, but there is a lack of knowledge regarding the multivariable effects between family members coping with loss and patient-related factors for prolonged grief symptom severity during bereavement. The aim was to identify risk factors for prolonged grief symptom severity in family members 1 year after patient death in relation to (1) the family member and the patient during ongoing palliative care and (2) the family member during bereavement.

The participants consisted of family members (n = 99) of patients admitted to palliative home care in Sweden. The participants completed a survey during ongoing palliative care and at a follow-up 1 year after the patient’s death.

The model selection chose 4 demographic and 4 preloss variables: family member’s nervousness and stress, the patient’s sense of security during palliative care, family members’ sense of security during palliative care, and a family member attachment security anxiety dimension. Two postloss variables were positively associated with prolonged grief symptom severity: family members’ continuing bond – internalized and continuing bond – externalized.

How family members coped depended on (i) variables linked to the family members themselves, (ii) the relationship to the patient, and (iii) some patient-specific variables. There was also a link between preloss variables and postloss prolonged grief symptom severity. Hence, it should be possible to identify family members with a heightened risk for longer-term prolonged grief symptoms.

This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage.

Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5–19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital. Interviews were completed at enrollment and asked how families share information and emotions about the child’s cancer as a family.

Saturation was reached at 20 interviews for mothers, fathers, and youth. Analyses revealed 4 major themes: (A) parents managing cancer-related information based on child age/developmental stage and processing styles of family members; (B) parents withholding poor prognosis information and emotions to maintain positivity; (C) lack of personal and familial emotion sharing; and (D) emotion sharing among their family and externally. Both parents and youth endorsed themes A, C, and D, but only parents endorsed theme B. Adolescents endorsed more themes than children. Parents of children (as opposed to adolescents) endorsed theme A more.

Although both parents and youth with advanced cancer were generally willing to talk about treatment, emotions were not consistently shared. Perspectives varied depending on the child’s developmental stage. Clinicians should assess parent and child information and emotion-sharing needs and provide individualized support to families regarding communication about advanced cancer.

As the US tests models of care for the seriously ill, patient perceptions of the quality of care are important. Proxies are often needed for this group. We sought to understand the potential impact of proxy reports for the assessment of care quality and experience in cancer.

Secondary data analysis of a deidentified prospective study that included surveys of perceived care quality, including symptom management, from patients with advanced cancer receiving chemotherapy and their caregivers. Surveys were administered at diagnosis (time 1) and treatment (time 2), with top-box scoring used for analysis. Overall concordance was assessed using metrics including Gwet’s AC1. The proportion of the highest scores by respondent type within 2 subgroups were examined: (1) symptom burden and (2) practice setting.

Data from 83 dyads were analyzed. Proxies and patients frequently reported the highest scores for quality (time 1: proxies: 77% and patients: 80%). At time 1, 14% of proxies and 10% of patients reported an unmet need for symptom palliation. Most patients reporting an unmet need gave the top score for quality (75%), but fewer proxies did so (45%). Proxy and patient reports were similar within practice settings. Concordance was at least moderate (nearly all outcomes >0.5 and some >0.8) by Gwet’s AC1.

Findings of at least moderate concordance and similar experience outcomes within subgroups suggest the use of proxies may not change estimates substantially. However, consideration should be taken when evaluating symptom management, particularly if such evaluations inform assessment of provider performance.

Receiving bad news about one’s health can be devastating, yet little is known about how the therapeutic nature of the environment where bad news is delivered affects the experience. The current study aimed to explore how patients and their families were affected by the language and the built, natural, social, and symbolic environments when receiving bad news, through the Therapeutic Landscapes theoretical framework.

Patients diagnosed with a life-limiting illness living in regional Victoria who had a hospital admission within 24 months and a diagnostic/prognostic conversation were invited to participate, as well as a family member who witnessed the conversation. Participants were recruited through social media and snowballing, resulting in 14 online semi-structured interviews being conducted between November 2021 and March 2022, audio-recorded, and transcribed verbatim. Reflexive thematic analysis was used to develop the themes.

Fourteen semi-structured interviews were conducted with women aged between 30 and 77 years. Interviews lasted between 45 and 120 minutes, with an average of 69 minutes, and were conducted online or via mobile phone. Four central themes were developed: “Hearing bad news for the first time,” “Preferences for having hard conversations,” “Creating a sense of safety for ongoing care,” and “The therapeutic nature of the ward.”

This body of work will help inform practice and future policy regarding bad news delivery and the design and aesthetics of environments where bad news is delivered. It is essential that bad news is delivered within a quiet, calm, and emotionally safe environment within a supportive therapeutic relationship.

Family caregivers’ (FCs) caregiving in nursing home (NH) moves across 3 main phases: transitioning relatives to long-term care, worsening of a relative’s conditions, and end of life; each phase brings specific challenges that FCs must confront. Moreover, during the COVID-19 pandemic, strict mandatory visitor restrictions affected communication modalities. This study explored FCs’ experience of communication with NH staff during the COVID-19 pandemic from admission to end of life.

A descriptive qualitative study with inductive content analysis was performed in 7 Italian NHs from May to June 2021. NH managers purposively identified 25 FCs at different phases of their caregiving trajectory: transitional (i.e., admission in the previous 8 weeks, n = 8), deterioration-in-condition (i.e., acknowledged changes in care needs of their relative after trigger events, n = 10), and end-of-life phase (i.e., death expected in the next weeks or a few months, n = 7), who were interviewed.

Regardless the phase of caregiving trajectory, what mattered most to FCs was the opportunity to have regular and sensitive discussions with health-care professionals. The need of in-person communication increased nearing death. The COVID-19 pandemic enhanced FCs’ need to interact with health-care professionals they trusted. Knowledge of residents’ preferences mitigated FCs’ turbulent emotions throughout the overall caregiving trajectory.

Findings suggest that in-person contacts should be prioritized and facilitated when possible, particularly at the end of life; nonetheless, meaningful communication can occur also through remote modalities. Investments in training health-care professionals about effective long-distance communication and supportive skills can help trusting relationships to be established. Open discussions about residents’ care preferences should be encouraged.

While there is a growing body of literature on the wish to die in older patients, there is little research about their will to live. Exploring the subjective will to live (WTL) offers valuable insights into the patients’ resources and motivations, which could help improving geriatric palliative care. The aim of this study was to examine, in long-term care facilities (LTCF), residents’ definitions of and factors influencing their WTL.

Twenty residents (mean age 85.8 ± 10.3 years, 70% women) of 3 Swiss LTCFs gave informed consent and participated in semi-structured interviews about their WTL. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was conducted to identify recurrent themes (40% double coded).

The majority of residents reported that they had not thought about the WTL. Nevertheless, they had no difficulty in describing it as innate in their lives. They spontaneously mentioned factors that contributed to their WTL, classified into 5 themes: (1) relationships – primarily with family and health professionals, secondarily with other residents; (2) living situation – the LTCF as a necessary place providing care, constant professional presence, and security, yet necessitates inconveniences such as loss of independence; (3) personality factors – positive outlook on life or spirituality; (4) engagement in routines – organized activities and individual daily routines; and (5) health status – primarily related to functional health.

Examining WTL provides important insights into elements that are essential to take into account in planning care and promoting well-being in LTCF residents. The themes identified provide important starting points for improving life in LTCFs.

The early introduction of palliative care can have a positive impact on the quality of life of patients suffering from life-limiting diseases. However, the palliative care needs of older, frail, housebound patients are still mostly unknown, as is the impact of frailty on the importance of these needs.

To identify the palliative care needs of frail, older, housebound patients in the community.

We conducted a cross-sectional observational study. This study took place in a single primary care center and included patients who were ≥65 years old, housebound, followed by the Geriatric Community Unit of the Geneva University Hospitals.

Seventy-one patients completed the study. Most patients were female (56.9%), and mean age (SD) was 81.1 (±7.9). The Edmonton Symptom Assessment Scale mean (SD) score was higher in frail patients as opposed to vulnerable patients for tiredness (p = 0.016), drowsiness (p = 0.0196), loss of appetite (p = 0.0124), and impaired feeling of well-being (p = 0.0132). There was no difference in spiritual well-being, measured by the spiritual scale subgroup of the Functional Assessment of the Chronic Illness Therapy–Spiritual Well-Being scale (FACIT-sp) between frail and vulnerable participants, although scores in both groups were low. Caregivers were mainly spouses (45%) and daughters (27.5%) with a mean (SD) age of 70.7 (±13.6). The overall carer–burden measured by the Mini-Zarit was low.

Older, frail, housebound patients have specific needs that differ from non-frail patients and should guide future palliative care provision. How and when palliative care should be provided to this population remains to be determined.

Older adults with severe dementia experience multiple symptoms at the end of life. This study aimed to delineate distinct symptom profiles of older adults with severe dementia and to assess their association with older adults’ and caregiver characteristics and 1-year mortality among older adults.

We used baseline data from a cohort of 215 primary informal caregivers of older adults with severe dementia in Singapore. We identified 10 indicators representing physical, emotional, and functional symptoms, and responsive behaviors, and conducted latent class analysis. We assessed the association between delineated older adults’ symptom profiles and their use of potentially burdensome health-care interventions in the past 4 months; older adults’ 1-year mortality; and caregiver outcomes.

We delineated 3 profiles of older adults – primarily responsive behaviors (Class 1; 33%); physical and emotional symptoms with responsive behaviors (Class 2; 20%); and high functional deficits with loss of speech and eye contact (Class 3; 47%). Classes 2 and 3 older adults were more likely to have received a potentially burdensome intervention for symptoms in the past 4 months and have a greater hazard for 1-year mortality. Compared to Class 1, caregivers of Class 2 older adults were more likely to experience adverse caregiver outcomes, that is, higher distress, impact on schedule and health, anticipatory grief, and coping and lower satisfaction with care received (p<0.01 for all).

The 3 delineated profiles of older adults can be used to plan or optimize care plans to effectively manage symptoms of older adults and improve their caregivers’ outcomes.

Complicated grief can affect a large number of individuals who have lost a relative due to cancer.

To assess the efficacy of a cognitive–behavioral grief therapy (CBGT) group for complicated grief (CG) in those who have lost a relative due to cancer in comparison with a psychoeducational and emotional expression intervention group (PSDEEI).

A randomized clinical trial was used, in which 249 relatives of deceased cancer patients with CG were randomly assigned to CBGT or PSDEEI. Complicated grief (Inventory of Complicated Grief [ICG]), depression (Beck Depression Inventory [BDI-II]), hopelessness (Beck Hopelessness Scale [BHS]), anxiety (Beck Anxiety Inventory [BAI]) symptoms, and general health (Goldberg’s General Health Questionnaire [GHQ28]) were assessed at pretreatment, posttreatment, and follow-up at 6 and 12 months.

The CBGT group improved significantly (p < 0.001), with the scores in ICG, BDI-II, BAI, BHS, and GHQ28 (p < 0.001) being higher than those for the PSDEEI group in each of the assessed moments, with high effect sizes: ICG (η2 = 0.16), BDI (η2 = 0.10), BAI (η2 = 0.06), BHS (η2 = 0.21), and GHQ28 (η2 = 0.21). At the 12-month follow-up, the number of cases of CG decreased by 81.1% for the CBGT group vs. 31.7% in the PSDEEI group.

The CBGT treatment was effective for CG, depression, anxiety, and hopelessness symptoms and for mental health and was superior to the PSDEEI treatment.

Psychological consequences of grief among relatives are insufficiently known. We reported incidence of prolonged grief among relatives of deceased patients with cancer.

Prospective cohort study of 611 relatives of 531 patients with cancer hospitalized for more than 72 hours and who died in 26 palliative care units was conducted. The primary outcome was prolonged grief in relatives 6 months after patient death, measured with the Inventory Complicated Grief (ICG > 25, range 0–76, a higher score indicates more severe symptoms) score. Secondary outcomes in relatives 6 months after patient death were anxiety and depression symptoms based on Hospital Anxiety and Depression Scale (HADS) score (range 0 [best]–42 [worst]), higher scores indicate more severe symptoms, minimally important difference 2.5. Post-traumatic stress disorder symptoms were defined by an Impact Event Scale-Revised score >22 (range 0–88, a higher score indicates more severe symptoms).

Among 611 included relatives, 608 (99.5%) completed the trial. At 6 months, significant ICG scores were reported by 32.7% relatives (199/608, 95% CI, 29.0–36.4). The median (interquartile range ICG score) was 20.0 (11.5–29.0). The incidence of HADS symptoms was 87.5% (95% CI, 84.8–90.2%) at Days 3–5 and 68.7% (95% CI, 65.0–72.4) 6 months after patient’s death, with a median (interquartile range) difference of −4 (–10 to 0) between these 2 time points. Improvement in HADS anxiety and depression scores were reported by 62.5% (362/579) relatives.

These findings support the importance of screening relatives having risk factors of developing prolonged grief in the palliative unit and 6 months after patient’s death.

Given the rising burden of palliative care and the limited human resources for its facilitation in China, volunteers are becoming increasingly indispensable. In particular, there is a high demand for volunteers who can serve as spiritual caregivers. However, a volunteer’s ability to provide good spiritual care in a palliative setting may be influenced by their attitude toward palliative care. To uncover the current state of spiritual caregiving in palliative settings in China and insights into best practices for its improvement, this study measured spiritual care competence and identified its influencing factors and explored its relationship with attitudes toward palliative care among volunteers. Notably, this study is the first to consider spiritual care competence alongside attitudes toward palliative care.

A descriptive cross-sectional study using online survey methods was conducted with 385 volunteers in Shanghai, China. Data were collected using a structured questionnaire.

Volunteers demonstrated relatively low levels of spiritual care competence (58.50 ± 10.92). Statistically significant correlations were found between spiritual care competence and the following variables: age, educational background, marital status, religious beliefs, occupational status, and relevant training and practical experience. Attitude toward palliative care significantly correlated with spiritual care competence (r = 0.49, p < 0.001).

To continually improve volunteers’ spiritual care competence, diversified education and training programs about spiritual care should be designed for different kinds of volunteers; moreover, because attitude toward palliative care significantly impacted spiritual care competence, such programs should encourage positive attitudes toward palliative care.

To assess the barriers that health-care professionals (HCPs) face in having advance care planning (ACP) conversations with patients suffering from advanced serious illnesses and to provide care consistent with patients’ documented preferences.

We conducted a national survey of HCPs trained in facilitating ACP conversations in Singapore between June and July 2021. HCPs responded to hypothetical vignettes about a patient with an advanced serious illness and rated the importance of barriers (HCP-, patient-, and caregiver-related) in (i) conducting and documenting ACP conversations and (ii) providing care consistent with documented preferences.

Nine hundred eleven HCPs trained in facilitating ACP conversations responded to the survey; 57% of them had not facilitated any in the last 1 year. HCP factors were reported as the topmost barriers to facilitating ACP. These included lack of allocated time to have ACP conversations and ACP facilitation being time-consuming. Patient’s refusal to engage in ACP conversations and family experiencing difficulty in accepting patient’s poor prognosis were the topmost patient- and caregiver-related factors. Non-physician HCPs were more likely than physicians to report being fearful of upsetting the patient/family and lack of confidence in facilitating ACP conversations. About 70% of the physicians perceived caregiver factors (surrogate wanting a different course of treatment and family caregivers being conflicted about patients’ care) as barriers to providing care consistent with preferences.

Study findings suggest that ACP conversations be simplified, ACP training framework be improved, awareness regarding ACP among patients, caregivers, and general public be increased, and ACP be made widely accessible.

This study aims to explore seriously ill patients’ experiences during goals-of-care discussions and perspectives of end-of-life (EOL) decision-making in the Middle Eastern country of Jordan.

This is a qualitative descriptive study with semi-structured, one-on-one interviews. Settings were 2 large hospitals in Jordan. Patients were a purposeful sample of 14 Arabic-speaking adults who were seriously ill and hospitalized with palliative care needs.

Conventional content analysis identified 4 main themes: perceived suffering during serious illness, attitudes toward discussing EOL decision-making, goals of care and preferences for EOL, and actions to enhance EOL decision-making. Disease and treatment burdens and concerns about life, family, and death were sources of suffering during serious illness. What matters most to patients at EOL were alleviating suffering and getting support from family, friends, and care providers. Although patients expressed reluctance and inaction toward EOL decision-making due to uncertainties, lacking awareness, and assumptions of fear, their potential goals of care were to live longer, be with their families, and die with dignity.

Jordanians and culturally similar Arabs could benefit from goals-of-care discussions. The proper, culturally sensitive implementation of goals-of-care discussions in Arab populations with similar cultural norms requires raising public awareness and clarifying the legitimacy of goals-of-care discussions, preparing patients and their families for the discussions, and considering individual variations in handling the discussions.

To describe nurses’ experiences of caring for individuals who have attempted suicide in specialized palliative care and to describe if the care of these individuals changed after the suicide attempt.

A qualitative, descriptive study was conducted. Nine nurses working in specialized palliative care units were interviewed following a semi-structured interview guide. Conventional content analysis was used in the analysis process.

The results are presented in 3 categories: “A suicide attempt evokes strong emotions,” “Health-care efforts changed after the suicide attempt,” and “Experiences for the rest of working life.” Suicide attempts aroused emotions in nurses such as frustration, compassion, and feelings of being manipulated. The relationship between the nurse and the individual was strengthened after the suicide attempt, and their conversations became deeper and changed in nature. Health-care efforts relating to the individual increased after the suicide attempt.

The results of the study can create an awareness that the palliative process also includes the risk of suicide and can be used to create conditions for nurses to be able to handle questions about suicide without fear. The results of the study can be used as an “eye opener” to the fact that suicidality occurs in palliative care. In summary, there is a critical need for nursing education in suicide risk assessment and continued follow-up care for patients at risk of suicide within palliative care.

Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care.

In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0–10 visual analog scale. For each child, a health professional also rates the child’s emotional status using the same scale.

The average child’s emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children’s emotional well-being significantly higher than professionals (t-test = 4.6, p-value < .001). Health professionals rated the children’s emotional well-being significantly lower when the disease status was progressive than when the disease was not (t-test = 2.2, p-value = .037).

Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation.

Body image adjustment is a crucial issue for patients with facial cancer, but body image–specific interventions are scarce. We report results of a novel psychotherapeutic intervention to address body image concerns during acute postoperative recovery following facial reconstructive surgery. Our primary aims were to evaluate the intervention’s feasibility, acceptability, and efficacy on body image concerns, psychological distress, and quality of life (QOL).

Adults with facial cancers who endorsed body image concerns were recruited to participate in a randomized controlled trial. The intervention group participated in 4 in-person counseling sessions. The control group received an educational booklet and a brief phone call. Participants completed measures of body image, distress, and QOL at baseline and at the 4-week follow-up to assess the impact of the intervention. Intervention outcomes were assessed with 2 sample t-tests or Mann–Whitney U tests as appropriate.

Twenty-nine participants completed both the baseline and follow-up assessments. The intervention demonstrated good feasibility with a high retention rate (79%), visit completion rate (81%), and high satisfaction scores (75% reported mean satisfaction score of >3). Intervention did not result in an observed statistically significant difference in reduction in body image dissatisfaction and disturbance, psychological distress, or improvement in QOL compared with the control group. However, intervention resulted in statistically significant difference in perceived social impact (−1 vs. −8.3, p = 0.033) compared to control group.

Our study highlights the potential clinical benefits of a novel psychotherapeutic intervention that targets body image concerns and suggests the need for further evaluation.

This study aims to explore the place of the relative in these triadic consultations and how this influences communication.

A mixed-methods research strategy was used. Triadic consultations for the announcement of cancer progression were recorded and following the 3 participants completed questionnaires comprising mirror-items. Recordings and answers were further investigated in a few semi-structured interviews. Comparison of quantitative responses (questionnaires) used Wilcoxon’s test for matched series. Qualitative analyses (consultations, interviews) used grounded theory. Patients were over 18, followed for cancer in palliative phase, excluding brain tumors and malignant hemopathies, and presented renewed disease progression. Relatives were over 18 and authorized by the patient to participate.

47 consultations (audio-recordings, answers to questionnaires) and 12 interviews conducted separately with 4 triads were collected. Half the relatives, while remaining in the background, nevertheless contributed to the discussion. For patients, the presence of a relative was considered beneficial and for oncologists it facilitated the announcement. However, symptoms perceived as intimate or private appeared difficult to express for some patients, and for relatives, prognosis was a difficult subject to broach. Although their relationship with time and their expectations may differ, patients and relatives found consultations positive. Oncologists appeared to underestimate the patient’s level of understanding (P<0.001) and perceptions of the seriousness of the disease (P=0.009) but not those of relatives. They did not evaluate the relative’s state of health and check what the dyad had retained.

Training via simulation sessions should be adapted to communication involving relatives.

Palliative care can improve the quality of life of adolescents and young adults (AYA) with cancer. However, little is known about the utilization of palliative care among AYA cancer patients. Identifying factors associated with the utilization of palliative care could inform efforts to improve palliative care access among AYA patients living with cancer.

Using data from the National Inpatient Sample 2016–2019, a representative sample of US hospitalizations, we examined palliative care encounters and associated characteristics among hospitalizations of AYA with cancer and high inpatient mortality risk. Survey design–adjusted bivariate and multivariable logistic regression models were used to examine associations of patient- and hospital-level characteristics with palliative care.

Of 10,979 hospitalizations by AYA cancer patients with high mortality risk, 19.9% received palliative care services between 2016 and 2019. After adjusting for all characteristics, independent predictors of palliative care use were as follows: older age (25–39 years old vs. 25–39 years; odds ratio [OR] 1.31, 95% confidence interval [CI] 1.15–1.49), Hispanic/Latinx (vs. non-Hispanic White; OR 1.16, 95% CI 1.01–1.34), female (vs. male; OR 1.27, 95% CI 1.14–1.41), public insurance (vs. private insurance; OR 1.23, 95% CI 1.10–1.38), hospital location in the US South (vs. Northeast; OR 0.78, 95% CI 0.66–0.94), and a large hospital (vs. small; OR 0.83, 95% CI 0.72–0.96).

Less than 20% of AYAs with cancer and high risk of mortality received inpatient palliative care services. Further research is needed to explore the reasons for lower palliative care utilization in the younger age groups.