We aimed to explore multiple perspectives regarding barriers to and facilitators of advance care planning (ACP) among African Americans to identify similarities or differences that might have clinical implications.

Qualitative study with health disparities experts (n = 5), community members (n = 9), and seriously ill African American patients and caregivers (n = 11). Using template analysis, interviews were coded to identify intrapersonal, interpersonal, and systems-level themes in accordance with a social ecological framework.

Participants identified seven primary factors that influence ACP for African Americans: religion and spirituality; trust and mistrust; family relationships and experiences; patient-clinician relationships; prognostic communication, care preferences, and preparation and control. These influences echo those described in the existing literature; however, our data highlight consistent differences by group in the degree to which these factors positively or negatively affect ACP. Expert participants reinforced common themes from the literature, for example, that African Americans were not interested in prognostic information because of mistrust and religion. Seriously ill patients were more likely to express trust in their clinicians and to desire prognostic communication; they and community members expressed a desire to prepare for and control the end of life. Religious belief did not appear to negate these desires.

The literature on ACP in African Americans may not accurately reflect the experience of seriously ill African Americans. What are commonly understood as barriers to ACP may in fact not be. We propose reframing stereotypical barriers to ACP, such as religion and spirituality, or family, as cultural assets that should be engaged to enhance ACP. Although further research can inform best practices for engaging African American patients in ACP, findings suggest that respectful, rapport-building communication may facilitate ACP. Clinicians are encouraged to engage in early ACP using respectful and rapport building communication practices, including open-ended questions.

In many studies, everyday life has been shown to be of great significance in the context of life-threatening cancer. The aim of this study was to investigate how people with cancer who are receiving palliative care engage in and undertake activities in their everyday lives.

This is a qualitative interview study adopting a grounded theory approach. The sample was composed of participants receiving services from palliative hospital-based home care and day care services. A total of 47 individuals were interviewed.

Despite experiencing the threat of progressive loss of functioning, the participants were striving to remain involved in and to be active in everyday life. Continued involvement in everyday life with lowered expectations concerning performance gave the participants the possibility to continue doing daily activities as well as to perform new and engaging activities that were a source of pleasure and enabled the patients to feel a sense of competence.

This study has demonstrated the power of being involved in everyday life activities. The proposed model, explaining individuals' desire to continue to live an active life despite a progressive loss of functioning, can provide a model to help the reasoning of professionals when supporting patients in their everyday life.

The objective of this study was to explore health care staff's opinions about what existential issues are important to patients with cancer and staff's responsibility when existential issues are raised by patients.

Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff's opinions about patients' important existential questions and, second, about health care staff's responsibility when existential issues are raised by the patient. The interviews were taperecorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories.

Four categories and 11 subcategories emerged from the first question. The first category, “life and death,” was based on joy of living and thoughts of dying. The second category “meaning,” consisted of acceptance, reevaluation, hope, and faith. The third category, “freedom of choice,” consisted of responsibility and integrity, and the fourth and last category, “relationships and solitude,” consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff's responsibility, “to achieve an encounter,” which was based on the subcategories time and space, attitudes, and invitation and confirmation.

One strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.

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.

Art therapy has been shown to be helpful to cancer patients at different stages in the course of their illness, especially during isolation for bone marrow transplantation, during radiotherapy treatment, and after treatment. The aim of this study is twofold: (1) to assess whether patients during chemotherapy sessions perceive art therapy as helpful and (2) to outline in which way art therapy is perceived as helpful.

157 cancer patients attending an Oncology Day Hospital (Siena, Italy) met the art therapist during their chemotherapy sessions. The art therapist used the same art therapy technique with each patient during the first encounter (“free collage”); afterward the relationship would evolve in different ways according to the patients' needs. A psychologist interviewed a randomized group of 54 patients after the chemotherapy treatment using a semistructured questionnaire.

Out of the 54 patients, 3 found art therapy “not helpful” (“childish,” “just a chat,” “not interesting”). The other 51 patients described their art therapy experience as “helpful.” From patients' statements, three main groups emerged: (1) art therapy was perceived as generally helpful (e.g., “relaxing,” “creative”; 37.3%), (2) art therapy was perceived as helpful because of the dyadic relationship (e.g., “talking about oneself and feeling listened to”; 33.3%), and (3) art therapy was perceived as helpful because of the triadic relationship, patient–image–art therapist (e.g., “expressing emotions and searching for meanings”; 29.4%).

These data have clinical implications, as they show that art therapy may be useful to support patients during the stressful time of chemotherapy treatment. Different patients use it to fulfil their own different needs, whether it is a need to relax (improved mood) or to talk (self-narrative) or to visually express and elaborate emotions (discovering new meanings). Some illustrations of patients using the art therapy process to fulfill these three different needs are provided.

This study was conducted for the purpose of adapting the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale (FACIT–Sp) for the Turkish context and determining its validity and reliability.

In 2016, a convenience sample of 137 cancer patients from Malatya State Hospital completed a structured questionnaire, which provided demographic characteristics, and the FACIT–Sp–12 for patients with cancer. The obtained data were assessed using Cronbach's alpha reliability coefficient (α), Pearson's product-moment correlation coefficient (r), factor analysis, Bartlett's test of sphericity, and the Kaiser–Meyer–Olkin (KMO) measure of sampling adequacy.

The result of the KMO test was determined to be 0.827 and that of Bartlett's test 988.692, and both were observed to be significant at a level of p < 0.001. The value of Cronbach's α for the Spiritual Well-Being Scale (SWBS) was determined to be 0.87, and the α values for the SWBS subgroups ranged from 0.78 to 0.93. Our analysis determined that the factors had initial eigenvalues above 1, and that they accounted for 61.61% of the total variance.

Our study determined that the Turkish version of the FACIT–Sp has validity and reliability and can be used in Turkish society. We believe that the scale can be used safely in determining convenient care and in planning individual educational programs to enhance patients' spiritual well-being.

The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.

Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.

The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.

Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.

The current literature on caregiving and bereavement indicates that the relationship between these two common life events is complex and needs to be further studied in order to gain a more comprehensive understanding of their interaction.

In the current project, 50 spouses of hospice patients with end-stage lung cancer or dementia were assessed while caregiving and at an average of 4 months after the death on a variety of measures, including caregiving stressors, appraisals, social resources, and well-being. A stress process model was utilized in order to examine which preloss factors were associated with postloss depression, life satisfaction, and grief.

Our results indicated that patient diagnosis (cancer or dementia) and caregiver appraisals (stressfulness of functional impairment and positive aspects of caregiving) were not predictors on any of our well-being outcomes. However, fewer months caregiving was a significant predictor of both higher depression and grief postloss. Additionally, lower levels of social activities, smaller social networks, and lower satisfaction with social support were significantly associated with higher postloss depression.

Results support both the resource depletion and anticipatory grief hypotheses and suggest that short-term bereavement outcomes are different than factors that predict well-being while caregiving. Future studies should address whether long-term bereavement outcomes differ by baseline caregiving characteristics to guide intervention research.

Although race and ethnic background are known to be important factors in the completion of advance directives, there is a dearth of literature specifically investigating the effect of race and ethnicity on advance directive completion rate after palliative care consultation (PCC).

A chart review of all patients seen by the PCC service in an academic hospital over a 9-month period was performed. Data were compiled using gender, race, ethnicity, religion, and primary diagnosis. For this study, advance directives were defined as: “Do Not Resuscitate” (DNR) and/or “Do Not Intubate” (DNI).

Of the 400 medical records reviewed, 57% of patients were female and 71.3% documented their religion as Christian. The most common documented diagnosis was cancer (39.5%). Forty-seven percent reported their race as white. White patients completed more advance directives than did nonwhite patients both before (25.67% vs. 12.68%) and after (59.36% vs. 40.84%) PCC. There was a significantly higher proportion of whites who signed an advance directive after a PCC than of nonwhites (p = 0.021); of the 139 whites who did not have an advance directive at admission, 63 signed an advance directive after a PCC compared with 186/60 nonwhites (45% vs. 32%, respectively, p = 0.021). Further analysis revealed that African Americans differed from whites in the likelihood of advance directive execution rates pre-PCC, but not post-PCC.

This study demonstrates the impact of a PCC on the completion of advance directives, on both whites and nonwhites. The PCC Intervention significantly reduced differences between whites and African Americans in completing advance directives, which have been consistently documented in the end-of-life literature.

Familial caregivers are providing increasing amounts of care to advanced cancer patients. Increased understanding of caregivers’ needs is vital in providing necessary support to lessen caregiver burden and morbidity. Current literature has identified caregiver and patient needs at broad stages of the cancer trajectory; however, such broad stages may be too general to inform a practice of targeting specific interventions when they have the greatest utility. This study examines a variety of particular needs across a number of more discrete illness-related transition experiences specifically in the advanced cancer disease trajectory.

One hundred fifty-nine female informal caregivers of people with advanced cancer completed a needs assessment survey.

Analyses of these cross-sectional retrospective-report data reveal that cancer caregiver needs vary across specific key experiences occurring within the broader stages of illness identified by current literature. Furthermore, caregivers have unique needs during bereavement.

Although the sample characteristics are demographically limited, this study provides preliminary evidence that the broad stages are not specific enough increments for effectively examining caregiver needs and supports the need for more precise distribution of cancer-related information at more discrete times in the illness course.

This study examines predictors of caregiver distress among community-based palliative care clients. Analyses are based upon interRAI Palliative Care (interRAI PC) assessment data from palliative home care programs in three regions in Ontario, Canada.

The study sample involved all community-based palliative care clients in Ontario who were assessed with the interRAI PC as part of normal clinical practice during pilot implementation of the instrument between 2007 and 2009 (N = 3,929). The assessments were performed by trained case managers and were used as the basis for determining service needs to be addressed through services contracted from provider agencies. The main study outcome of interest was the presence of one or more indicators of caregiver distress: helper(s) unable to continue caring activities; primary informal helper expresses feelings of distress, anger, or depression; family or close friends report feeling overwhelmed by person's illness.

Caregiver distress was evident among about 22% of palliative home care clients. Multivariate analyses identified included clinical instability (Changes in Health, End Stage disease, Signs and Symptoms [CHESS] scale), depressive symptoms, cognitive impairment, and positive outlook as significant client-level predictors. Significant caregiver characteristics included hours of informal care. Three service use/provider variables were significant predictors of caregiver distress: the specific home care agency, hospitalizations in the last 90 days, and nursing visits.

Caregiver distress affects approximately one in five palliative care clients in the community. This may lead to a number of adverse outcomes for the caregiver and client. The experience of distress is affected by client, caregiver, and agency characteristics that are readily identified by the interRAI PC assessment instrument. The present results point to the need for a care planning protocol that may be used on a targeted basis for clients experiencing or at elevated risk of caregiver distress.

Most palliative care efforts focus on assessing and improving the quality of life and quality of care for patients. Palliative care views the family as the unit of care; therefore, excellent comprehensive palliative care should also address the needs of the family and the caregiver(s). While the recent literature has offered detailed descriptions of caregiving needs in the home setting, it is crucial to describe the needs of family members who provide care for patients with advanced illness in an inpatient setting, where family members serve as the key intermediaries and decision makers. Therefore, we sought to define the relevant aspects of quality of experience for families of hospitalized patients.

We convened a series of focus groups to identify the domains important for the quality of experience of dying patients' family members. Participants included bereaved family members of patients who had died at a Veterans Administration (VA) or private academic medical center. We conducted four in-depth follow-up interviews to probe for additional details and validate our interpretation of the focus group findings.

Participants (n = 14) ranged in age from 46 to 83, with a mean of 62. All were female; 64% were Caucasian, 21% African American, and 14% did not report their ethnicity. Content analysis yielded 64 attributes of quality of family experience constituting eight domains: completion, symptom impact, decision making, preparation, relationship with healthcare providers, affirmation of the whole person, post-death care, and supportive services.

Our data have implications for clinical guidance in assisting family members in the inpatient palliative setting, which often includes patient incapacity for communication and decision making. They suggest the importance of developing corresponding methods to assist families with the tasks involved with life completion, being prepared for a crisis and imminent death, and post-death care. Provider communications and relationships are central to the processes of meeting the clinical needs of family members. Our findings should inform the development of measures to assess family experience.