Serious illness conversations (SICs) can improve the experience and well-being of patients with advanced cancer. A structured Serious Illness Conversation Guide (SICG) has been shown to improve oncology patient outcomes but was developed and tested in a predominantly White population. To help address disparities in advanced cancer care, we aimed to assess the acceptability of the SICG among African Americans with advanced cancer and their clinicians.

A two-phase study conducted in Charleston, SC, included focus groups to gather perspectives on the SICG in Black Americans and a single-arm pilot study of a revised SICG with surveys and qualitative exit interviews to evaluate patient and clinician perspectives. We used descriptive analysis of survey results and thematic analysis of qualitative data.

Community-based and patient focus group participants (N = 20) reported that a simulated conversation using an adapted SICG built connection, promoted control, and fostered consideration of religious faith and family. Black patients with advanced cancer (N = 23) reported that SICG-guided conversations were acceptable, helpful, and promoted conversations with loved ones. Oncologists found conversations feasible to implement and skill-building, and also identified opportunities for training and implementation that could support meeting the needs of their patients with low health literacy. An adapted SICG includes language to assess the strength and affirm the clinician–patient relationship.

An adapted structured communication tool to facilitate SIC, the SICG, appears acceptable to Black Americans with advanced cancer and seems feasible for use by oncology clinicians working with this population. Further testing in other marginalized populations may address disparities in advanced cancer care.

Insomnia is underrecognized and inadequately managed, with close to 60% of cancer survivors experiencing insomnia at some point in the treatment trajectory. The objective of this study was to further understand predisposing, precipitating, and perpetuating factors in the development and maintenance of insomnia in cancer survivors.

A heterogeneous sample of 63 patients who had completed active treatment was recruited. Participants were required to have a score >7 on the Insomnia Severity Index and meet the diagnostic criteria for insomnia disorder. Open-ended, semistructured interviews were conducted to elicit participants’ experiences with sleep problems. An a priori set of codes and a set of codes that emerged from the data were used to analyze the data.

The mean age of the sample was 60.5 years, with 30% identifying as non-white and 59% reporting their sex as female. The cancer types represented were heterogeneous with the two most common being breast (30%) and prostate (21%). Participants described an inherited risk for insomnia, anxious temperament, and insufficient ability to relax as predisposing factors. Respondents were split as to whether they classified their cancer diagnosis as the precipitating factor for their insomnia. Participants reported several behaviors that are known to perpetuate problems with sleep including napping, using back-lit electronics before bed, and poor sleep hygiene. One of the most prominent themes identified was the use of sleeping medications. Participants reported that they were reluctant to take medication but felt that it was the only option to treat their insomnia and that it was encouraged by their doctors.

Insomnia is a prevalent, but highly treatable, disorder in cancer survivors. Patients and provider education is needed to change individual and organizational behaviors that contribute to the development and maintenance of insomnia and increase access to evidence-based nonpharmacological interventions.

Women with gynecological cancer have been reported as very high users of complementary medicine. The goal of our study was to explore the perceptions of patients with an advanced gynecological cancer who use naturopathy as complementary medicine. We were looking more specifically at patients' opinions on the effect of naturopathy on their quality of life and its relation to conventional oncological treatments.

This pilot qualitative study used semistructured interviews, and data were analyzed using grounded theory and qualitative methods. The main criterion for inclusion in the study was the use of naturopathy as a treatment complementary to conventional cancer treatment for gynecological metastatic cancer on the oncology day care unit.

Six patients were included until data saturation. They express the physical and psychological impact of treatments and disease. Usually, chemotherapy is perceived as something that may be curative or may at least lead to remission. Unlike conventional treatments, naturopathy is not perceived as drugs, and it is seen as a way to relieve symptoms, improve well-being, and as a way of enabling them to take an active decision-making role in their care journey. Patients want to have more information about naturopathy.

This study suggests that patients are aware of the benefits of a specific cancer treatment as chemotherapy, but they resort to naturopathy for symptom control, and also to take a more active role during treatment.

The diagnosis and treatment of depression are complicated by the presence of a serious medical illness, such as cancer. The role of inflammation in the pathophysiology of depression remains unknown; however, the symptom cluster of sickness behavior is more clearly related to inflammation. Symptom clusters may provide the specificity needed to improve treatment outcomes. The purpose of this study is to use confirmatory factor analysis to examine the construct of sickness behavior in patients with advanced cancer using the Beck Depression Inventory–II (BDI–II).

Patients (N = 167) were recruited from chemotherapy clinics and the Department of Psychiatry at Memorial Sloan Kettering Cancer Center. Symptoms were a priori delineated using the factor labels sickness behavior and negative affectivity (two-factor model), and affective, cognitive, and sickness behavior (three-factor model). These data were also fit for a more traditional model using affective, cognitive, and somatic factors.

The mean total BDI–II score was 14.74 (SD = 8.52; range = 1–46). Fit statistics for all models were good, but the novel three-factor model with sickness behavior provided the best fit: χ2(186) = 273.624; p < 0.001; root-mean-square error of approximation = 0.053; comparative fit index = 0.949.

Both the two- and three-factor models provide support for the unique construct of sickness behavior in patients with advanced cancer. High factor correlations with the BDI–II and other measures of distress were observed, which raises questions about theoretically distinct, but related, constructs.

This study examined general and cancer-related stressors of depression that are unique to African-American cancer patients.

The study used cohort design and mixed methods. Seventy-four breast and prostate cancer survivors including 34 depressed and 23 non-depressed African-Americans and 17 depressed whites were interviewed. Qualitative data analysis identified themes. The thematic codes were converted to a SPSS data set numerically. The Fisher's exact test was performed to examine group differences in the experience of stress.

Significantly more depressed African-Americans experienced a dramatic reaction to a cancer diagnosis (p = 0.03) or had concerns about functional decline (p = 0.01), arguments with relatives or friends (p = 0.02), and unemployment status (p = 0.03) than did non-depressed African-Americans, who reacted to the cancer diagnosis as a matter of reality (p = 0.02). Significantly more depressed African-Americans talked about feeling shocked by a cancer diagnosis (p = 0.04) and being unable to do things that they used to do (p = 0.02) than did depressed whites. Qualitative analysis shed light on the extent of such group differences.

Distress from the initial cancer diagnosis and functional decline were likely to have triggered or worsened depression in African-American cancer patients. This study highlighted racial differences in this aspect. It is critical to screen African-American cancer patients for depression at two critical junctures: immediately after the disclosure of a cancer diagnosis and at the onset of functional decline. This will enhance the chance of prompt diagnosis and treatment of depression in this underserved population.

Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC).

Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes.

Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs.

The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.

Goal concordant or congruent care involves having expressed wishes upheld. Yet, the preferred location for end-of-life care may be unaddressed. Caregiver–patient congruence between preferred and actual locations of care may influence the quality of life in bereavement. The study aimed to explore how the congruence between caregiver–patient preferred and actual locations of death influenced well-being in bereavement.

Mixed methods were employed. In-depth in-person interviews were conducted with 108 bereaved caregivers of a hospice patient about 4 months after the death. An interview guide was used to collect quantitative and qualitative data: demographics, decision-making, Core Bereavement Items (CBI), Health Related Quality of Life, and perspectives on the end-of-life experiences. Data were analyzed with a convergent mixed methods one-phase process.

Patient preference–actual location congruence occurred for 53%; caregiver preference–actual location congruence occurred for 74%; caregiver–patient preference and location of death occurred for 48%. Participants who reported some type of incongruence demonstrated higher levels of distress, including more days of being physically and emotionally unwell and more intense bereavement symptoms. The Acute Separation subscale and CBI total scores demonstrated significant differences for participants who experienced incongruence compared with those who did not. Preference location congruence themes emerged: (1) caregiver–patient location congruence, (2) caregiver–patient location incongruence, and (3) location informed bereavement.

Congruence between a dying person's preferred and actual locations at death has been considered good care. There has been little focus on the reciprocity between caregiver–patient wishes. Discussing preferences about the place of end-stage care may not make location congruence possible, but it can foster shared understanding and support for caregivers’ sense of coherence and well-being in bereavement.

To explore patients' understanding of decision making in the treatment of advanced cancer and to determine the factors they believe important to these processes in their care.

Surveys were distributed to consecutive outpatients with advanced malignancy attending a comprehensive cancer treatment center.

Patients believed that the medical condition (94%), their doctors' experience (81%), and the medical literature (73%) are the most important factors for decisions made in their care. They also value their relationship with the doctor (63%) and their own (the patients') values (63%), and just over a third considered their family's values and the doctors' personality important. Most did not believe the doctors' values should influence decisions made. They were mindful of the uncertainty involved in decisions in the setting of advanced cancer.

Overall, patients were satisfied with the decision-making processes and they understood and highly regarded the incorporation of factors, other than their medical condition, in their care.

Although demoralization is common among palliative care patients, it has not yet been examined empirically in the Hong Kong Chinese context. This study aims to examine (1) the prevalence of demoralization among community-dwelling palliative care patients in Hong Kong; (2) the percentage of palliative care patients who are demoralized but not depressed and vice versa; and (3) the association of socio-demographic factors, particularly family support, with demoralization.

A cross-sectional study targeting community-living palliative care patients in Hong Kong was conducted. A total of 54 patients were recruited by a local hospice and interviewed for completing a questionnaire which included measures of demoralization, depression, perceived family support, and demographic information.

The prevalence of demoralization was 64.8%. Although there was overlap between demoralization and depression (52.8% meeting the criteria of both), 7.5% of depressed patients were not demoralized, and 13.2% of demoralized patients were not depressed. Participants who were not single and had more depressive symptoms and less family support had a significantly higher demoralization level.

This is the first study which reports the prevalence of demoralization in Hong Kong. Demoralization was found common in community-living palliative care patients receiving medical social work services in Hong Kong. This study provides evidence of the importance of differentiating the constructs between demoralization and depression. It also provides an implication that those who are married, more depressed, and have the least family support could be the most vulnerable group at risk of demoralization. We recommend that early assessment of demoralization among palliative care patients be considered.

The present study aims were (1) to identify the proportion of terminally ill cancer patients with desire for hastened death (DHD) receiving specialized palliative care, (2) to identify the reasons for DHD, and (3) to classify patients with DHD into some interpretable subgroups.

Advanced cancer patients admitted to 23 inpatients hospices/palliative care units in 2017 were enrolled. Data were prospectively obtained by the primarily responsible physicians. The presence/absence of DHD and reasons for DHD were recorded. A cluster analysis was performed to identify patterns of subgroups in patients with DHD.

Data from 971 patients, whose Richmond Agitation–Sedation Scale score at admission was zero and who died in palliative care units, were analyzed. The average age was 72 years, common primary cancer sites were the gastrointestinal tract (31%) and the liver/biliary ducts/pancreas (19%). A total of 174 patients (18%: 95% confidence interval, 16–20) expressed DHD. Common reasons for DHD were dependency (45%), burden to others (28%), meaninglessness (24%), and inability to engage in pleasant activities (24%). We identified five clusters of patients with DHD: cluster 1 (35%, 61/173): “physical distress,” cluster 2 (21%, 37/173): “dependent and burdensome,” cluster 3 (19%, 33/173): “hopelessness,” cluster 4 (17%, 30/173): “profound fatigue,” and cluster 5 (7%, 12/173): “extensive existential suffering.”

A considerable number of patients expressed DHD and could be categorized into five subgroups. These findings may contribute to the development of therapeutic strategies.

There is no widely used prognostic model for delirium in patients with advanced cancer. The present study aimed to develop a decision tree prediction model for a short-term outcome.

This is a secondary analysis of a multicenter and prospective observational study conducted at 9 psycho-oncology consultation services and 14 inpatient palliative care units in Japan. We used records of patients with advanced cancer receiving pharmacological interventions with a baseline Delirium Rating Scale Revised-98 (DRS-R98) severity score of ≥10. A DRS-R98 severity score of <10 on day 3 was defined as the study outcome. The dataset was randomly split into the training and test dataset. A decision tree model was developed using the training dataset and potential predictors. The area under the curve (AUC) of the receiver operating characteristic curve was measured both in 5-fold cross-validation and in the independent test dataset. Finally, the model was visualized using the whole dataset.

Altogether, 668 records were included, of which 141 had a DRS-R98 severity score of <10 on day 3. The model achieved an average AUC of 0.698 in 5-fold cross-validation and 0.718 (95% confidence interval, 0.627–0.810) in the test dataset. The baseline DRS-R98 severity score (cutoff of 15), hypoxia, and dehydration were the important predictors, in this order.

We developed an easy-to-use prediction model for the short-term outcome of delirium in patients with advanced cancer receiving pharmacological interventions. The baseline severity of delirium and precipitating factors of delirium were important for prediction.

Children and young adults with severe disabilities and their families are faced with enormous challenges throughout the lifespan, including admitting the child to a long-term care facility (LTCF) and making end-of-life (EOL) care decisions. While children are residents of these specialized LTCF, the majority of their daily care, even up until death, is provided by nursing aides or habilitation aides (HAs) with limited training and educational backgrounds compared with other licensed healthcare providers. The purpose of this study was to determine the impact of a resident's EOL experience on the primary HAs and parents/guardians.

Thirty-five resident deaths occurred at Hattie Larlham Center for Children with Disabilities (HLCCD) between January 1, 2006 and February 28, 2009. The HAs and parents/legal guardians were identified for each death and invited to complete three surveys per resident (FAMCARE, Impact of Events Scale (IES)-revised, and Perspective on End-of-Life Care) to assess their experience. There were 112 surveys mailed to 62 HAs and 47 surveys mailed to 47 parents.

Forty-two surveys were returned from 18/62 HAs (response rate 29%) and 11/47 parents/legal guardians completed the surveys (response rate 23%). The FAMCARE survey found that parents were more satisfied with the EOL care than were the HAs. The IES-revised found no difference in traumatic responses from either group. Comments from the Perspective on End-of-Life Care survey were analyzed qualitatively for common themes including pain control, respect, decision making, environmental needs, resources, and support.

Because of a low response rate, it was difficult to draw significant conclusions; however, several interesting trends were noted regarding the number of deaths HAs experienced, satisfaction with care, and distress. The special needs of this population and their caregivers can provide crucial insights into interventions (e.g. chaplaincy support, debriefings, anticipatory counseling, environmental changes) that might be of benefit for any caregiver or parent of a child with a long-term, chronic condition, particularly involving developmental disability.

The aim of this qualitative study was to gain a deeper understanding about couples' relationship changes over time (the first six months) after one partner is diagnosed with an incurable advanced melanoma (stage III or IV).

In semistructured interviews, eight patients and their partners were asked separately about potential changes in their relationship since diagnosis. The same questions were asked again six months later, but focusing on relationship changes over the preceding six months. Some 32 audiotaped interviews were analyzed applying qualitative content analysis.

At baseline (t1), relationship changes were mostly reported in terms of caring, closeness/distance regulation, and communication patterns. While changes in caregiving and distance/closeness regulation remained main issues at six months follow-up (t2), greater appreciation of the relationship and limitations in terms of planning spare time also emerged as major issues. Unexpectedly, 50% of patients and partners reported actively hiding their negative emotions and sorrows from their counterparts to spare them worry. Furthermore, qualitative content analysis revealed relationship changes even in those patients and partners who primarily reported no changes over the course of the disease.

Our findings revealed a differentiated and complex picture about relationship changes over time, which also might aid in the development of support programs for couples dealing with advanced cancer, focusing on the aspects of caring, closeness/distance regulation, and communication patterns.

This study aimed to evaluate whether using the interRAI Palliative Care instrument (the interRAI PC) in nursing homes is associated with reduced needs and symptoms in residents nearing the end of their lives.

A quasi-experimental pretest–posttest study using the Palliative care Outcome Scale (POS) was conducted to compare the needs and symptoms of residents nearing the end of their lives in the control and intervention nursing homes. Care professionals at the intervention nursing homes filled out the interRAI PC over the course of a year for all residents aged 65 years and older who were nearing the end of their lives. This intervention was not implemented in the control nursing homes.

At baseline, POS scores in the intervention nursing homes were lower (more favorable) than in the control nursing homes on the items “pain”, “other symptoms”, “family anxiety”, and the total POS score. Posttest POS scores for “wasted time” were higher (less favorable) than pretest scores in the intervention nursing homes. In the intervention nursing homes where care professionals did not have prior experience with the interRAI Long-Term Care Facilities (LTCF) assessment instrument (n = 8/15), total POS scores were lower (more favorable) at posttest.

One year after introducing the interRAI PC, no reduction in residents' needs and symptoms were detected in the intervention nursing homes. However, reductions in needs and symptoms were found in the subgroup of intervention nursing homes without prior experience with the interRAI LTCF instrument. This may suggest that the use of an interRAI instrument other than the interRAI PC specifically can improve care. Future research should aim at replicating this research with a long-term design in order to evaluate the effect of integrating the use of the interRAI PC in the day-to-day practices at nursing homes.

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 objective of this study was to develop a clinically relevant tool to assess parental engagement in decision making and planning for seriously ill children during palliative care consultations. Although little is known about the structure and process of planning meetings between parents and providers, less is known about the nature of parental engagement as it relates to decision making ability in pediatric end-of-life care. Using attachment and caregiving as a framework, this study clarified important dimensions of parental engagement.

Using a multi-phase, template-matching technique, both literature and pediatric palliative care consultation data were analyzed, iteratively reviewed, matched, and categorized to create a measure of parental engagement. The attachment paradigm serves as the theoretical framework for the study, which focuses on parental engagement in decision making as a caregiving system function. Attachment and related literatures as well as coping and pediatric palliative care literatures were used in the initial conceptual sampling phase.

The study yielded two groups of findings. The first set of findings centered on the findings of the literature and consultation template-matching phases of the work. These two phases yielded a conceptual model of parental engagement as a psychobehavioral complex consisting of three dimensions: information-centered dialogue, insightful participation, and achievement of a collaboratively agreed-upon plan. The final phases consisted of creation of a 9 point Parental Engagement Scale, scoring of the consultations, and establishment of initial inter- rater reliability at .80. Psychometric testing continues.

Parental engagement in decision making is a critical area for study and intervention. If we can support parents in their caregiving executive functions while understanding the psychological and emotional underpinnings of the caregiving system and parental engagement itself, we can move inquiry forward in understanding parental needs for intervention during this most profoundly challenging time.

Family caregivers play an important role in end-of-life (EoL) decision making when the patient is unable to make his/her own decisions. While communication about EoL care between patients and family is perhaps a first step toward advance care planning (ACP)/EoL decisions, not every culture puts great value on open communication about this topic. The aims of the present study were to explore EoL communication and the aspects of communication among caregivers of Latino patients in the rural United States (U.S.)–Mexico border region.

This study analyzed data from a hospice needs assessment collected from 189 family caregivers of Latino patients at a home health agency in a rural U.S.–Mexico border region. Bivariate tests and logistic regression were used to address our aims.

About half of the family caregivers (n = 96, 50.8%) reported to have ever engaged in EoL discussion with patients. Significant predictors of EoL discussion included life-sustaining treatment preference (odds ratio [OR] = 0.44, p < 0.05); knowledge of an advance directive (AD) (OR = 5.50, p < 0.01); and distrust of physicians (OR = 0.29, p < 0.01). Caregivers who preferred extending the life of their loved one even if he/she had to rely on life supports were less likely to engage in EoL communication. Also, caregivers who worried that physicians might want to stop treatments (i.e., “pull the plug”) too soon were less likely to do so. Conversely, caregivers who had knowledge about ADs were more likely to engage in EoL communication.

EoL communication is a complex process influenced by individual, social, and cultural values and the beliefs of both the patient and his/her family. Inclusion of family caregivers in the ACP process and facilitating culturally tailored EoL communication between patients and family caregivers is important.