Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement.

The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework.

Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care.

Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer patients in Africa could be more comprehensive if they were based on the domains of the supportive care framework.

Limited research exists examining the biopsychosocial experience of patients diagnosed with metastatic renal cell carcinoma (mRCC), a disease commonly associated with a poor prognosis. The purpose of this study was to describe rates and types of distress in mRCC patients and explore the relationship between distress and overall survival.

A cohort of 102 patients with mRCC treated at a single institution was assessed by a touch screen–based instrument comprising 22 core items spanning physical, practical, functional, and emotional domains. Association between biopsychosocial distress and clinicopathologic criteria was interrogated. Overall survival was compared between patients with low distress versus high distress.

High rates of distress (20.7%) were found among patients newly diagnosed with mRCC. Among those domains contributing to distress, pain, fatigue, and financial comorbidity were the most commonly reported by patients with mRCC. A trend toward poorer overall survival in those patients with high distress versus low distress was observed among mRCC patients.

Based on data from a relatively large sample of patients, this study provides the first specific insights into the potential impact of biopsychosocial distress and outcomes among patients with mRCC.

A steady increase in the number of patients requiring end-of-life care has been observed during the last decades. The assessment of healthcare students' attitudes toward end-of-life care is an important step in their curriculum, as it provides information about their disposition to practice palliative medicine. The Frommelt Attitude Toward Care of the Dying Scale (FATCOD–B) was developed to detect such a disposition, but its psychometric properties are yet to be clearly defined.

A convenience sample of 608 second-year medical students participated in our study in the 2012/2013 and 2013/2014 academic years. All participants completed the FATCOD–B. The sample was randomly divided in two subsamples. In the item analysis, reliability (Cronbach's α), internal consistency (item–total correlations), and an exploratory factor analysis (EFA) were conducted using the first subsample (n = 300). Using the second subsample (n = 308), confirmatory factor analysis (CFA) was performed using the robust ML method in the Lisrel program.

Reliability for all items was 0.699. Item–total correlations, ranging from 0.03 to 0.39, were weak. EFA identified a two-dimensional orthogonal solution, explaining 20% of total variance. CFA upheld the two-dimensional model, but the loadings on the dimensions and their respective indicators were weak and equal to zero for certain items.

The findings of the present study suggest that the FATCOD–B measures a two-dimensional construct and that several items seem in need of revision. Future research oriented toward building a revised version of the scale should pay attention to item ambiguity and take particular care to distinguish among items that concern emotions and beliefs related to end-of-life care, as well as their subjects (e.g., the healthcare provider, the patient, his family).

Advanced care planning (ACP) is central to patients' dignity and autonomy; however, in many countries it is underutilized. Studies that tested the effects of palliative care (PC) often included the rate of documented ACP as a secondary end point. We aimed to assess the contribution of PC to the rate of ACP among terminally ill patients by systematically reviewing relevant clinical trials.

PUBMED and “Cochrane trials” databases were screened for clinical trials published until October 2017 that compared the addition of PC to standard treatment and that had ACP as a primary or a secondary end point. Studies were assessed for validity by three investigators using the Cochrane Collaboration tool and the ROBINS-I tool for randomized controlled trials (RCTs) and for cohort studies, respectively.

Twenty-six trials with 37,924 patients were included. Four were RCTs, nine were cohort studies, and 12 were cross-sectional studies. Randomized trials had the lowest risk of bias. There was a positive correlation between the addition of PC and ACP in 25 studies, among them four randomized trials.

In this systematic review, PC was associated with improvement in the rate of ACP. Understanding the significant effect of PC on the completion of ACP is an additional emphasis on the importance of this treatment among terminally ill patients.

To assess the feasibility of an 8-week bereavement support group in a general hospital setting.

We assessed grief and mood before and after an 8-week bereavement support group and compared dropouts to completers. Forty-seven participants filled out mood and grief questionnaires. Scores were compared with norms, then baseline and follow-up scores were analyzed by paired t tests. Fifteen dropouts' scores were compared with completers' baseline scores.

Participants' grief improved, as did depression in women but not men. Women dropouts scored significantly higher on Anger, Tension/Anxiety.

Findings suggest men and women respond differently to bereavement groups. Bereaved individuals with high anger and tension may require interventions addressing their particular needs, with a focus on acceptance of negative emotions.

To understand the clinical and psychosocial journey of culturally and linguistically diverse (CALD) palliative care patients.

This study was conducted at a subacute hospital with a specialist palliative care unit and a community palliative care service in a metropolitan region of New South Wales, Australia. Medical records of 100 deceased patients from CALD backgrounds over a 12-month period from 2014 to 2015 were recorded on a data mining tool. The cohort had transitioned to either community or inpatient palliative care services with a life-limiting illness. We used descriptive statistical analyses to identify the patients’ end-of-life journeys in the physical, psychological, spiritual, and social palliative care domains. Staff case notes were used to enrich the quantitative data.

The most common symptoms burdening the patients were decreased mobility (82%), pain (76%), and poor appetite (60%). The majority of patients (87%) were diagnosed with cancer. Language was a major barrier to the assessment and management of symptoms. The vast majority of patients were born in Europe and Asia. Twenty-nine percent of the patients preferred to use English. However, among patients who required an interpreter on admission, only 9% used professional interpreters. Family distress around patients’ lack of food consumption was prominent, along with provider concern when this led to families “force feeding” patients. Only 5% of files documented patients’, and 21% of files documented families’, cultural wishes or needs. Care of the body after death was only documented in 20% of files.

The increasing cohort of older people from CALD backgrounds will have significant implications for the planning and delivery of palliative care services. There is an emerging need to address the physical, psychological, spiritual, and social palliative care domains in the end-of-life journeys of patients from CALD backgrounds to ensure the provision of quality care.

Qualitative analyses suggest that requests for physician-assisted death (PAD) may often be the culmination of a person's lifelong pattern of concern with issues such as control, autonomy, self-sufficiency, distrust of others, and avoidance of intimacy. Such characteristics may be measured by attachment style. We compared family members’ reports of attachment style in Oregonians who did and did not request PAD.

Eighty-four family members of terminally ill patients who requested PAD before death and 63 members of a comparison group that included family members of terminally ill Oregonians who died without requesting PAD rated their loved ones' attachment style in a one-time survey.

Individuals who requested PAD were most often described as having dismissive personality styles (56%) compared to 41% of comparison individuals, and on continuous measures of relational style, the highest mean score among PAD requesters was for dismissive style. There were marginally significant differences in the proportions of each attachment style when comparing the two groups (p = 0.08).

Patients’ attachment styles may be an important factor in requests for PAD. Recognition of a patient's attachment style may improve the ability of the physician to maintain a constructive relationship with the patient throughout the dying process.

The potential influence of patient religious and spiritual beliefs on the approach to end-of-life care and resuscitation status preferences is not well understood. The aim of this study was to assess the association between religiosity and resuscitation preferences in advanced-cancer patients.

We performed a secondary analysis of a randomized controlled trial that evaluated the influence of physician communication style on patient resuscitation preferences. All patients completed the Santa Clara Strength of Religious Faith Questionnaire–Short Form (SCSRFQ–SF) and expressed their resuscitation preferences. We determined the frequency of resuscitation preferences and its association with intensity of religiosity.

A total of 78 patients completed the study. The median age was 54 years, with a range of 18–78. Some 46 (59%) were women; 57 patients (73%) were Caucasian, 15 (19%) African American, and 5 (7%) Hispanic. A total of 46 patients (56%) were Protestant and 13 (17%) Catholic. Some 53 of 60 patients who chose Do Not Resuscitate status (DNR) (88%) and 16 of 18 patients who refused DNR (89%) for a video-simulated patient were highly religious (p = 0.64). When asked about a DNR for themselves after watching the videos, 43 of 48 who refused DNR (90%) and 26 of 30 patients who chose DNR (87%) were highly religious (p = 0.08). The Spearman correlation coefficient for patients choosing DNR for themselves and intensity of religiosity was r = –0.16 (p = 0.16). Some 30 patients (38%) who chose DNR for the video patient refused DNR for themselves, and 42 who chose DNR for both the video patient and themselves (54%) were highly religious (p = NS).

There was no significant association between intensity of patient religiosity and DNR preference for either the video patient or the patients themselves. Other beliefs and demographic factors likely impact end-of-life discussions and resuscitation status preferences.

Because palliative care in sub-Saharan Africa may not fit the style of delivery of palliative care in the global north, exploring the evidence can serve to reduce existing barriers and help streamline national policies that determine the optimal setting to implement formal palliative and end-of-life services.

A search was conducted in Ovid MEDLINE®, PubMed, and Google Scholar databases using the search terms nursing care, terminal care, end of life care, palliative care, dying, death, hospice, opioids, morphine, Africa, sub-Saharan Africa, caregivers, and place of death. Eighty-seven relevant articles were found using the search terms. Of these, 22 matched inclusion criteria and were reviewed.

Opioid availability and distribution is best accessed at the inpatient level, and hence, pain and end-of-life symptoms are best managed at the inpatient level. Despite the great need, nurses’ lack of prescription power in the home-based setting is a shortcoming. Home deaths have not been adequately studied, but research suggests that palliative care generally causes economic strain, psychosocial distress on family members, and increased risk of transmission of communicable disease. Hospice is understudied but shows favorable outcomes.

Funding and research need to focus on development of inpatient palliative and hospice care units in urban areas. In rural areas, the priority should be a home-based care model that involves nurses who are privileged to prescribe opioids and adjunctive medication therapies.

Our aim was to explore preparation for the end of life (EoL) and life closure among persons with advanced metastatic lung cancer. Understanding quality of life through the lens of preparation and completion is important since the trajectory of lung cancer can be relatively short, often leading to application of cancer-directed therapies near death without the opportunity for advance planning or palliative care. Clinical research is needed to understand the kinds of distress specific to older adults with advanced lung cancer that are amendable to palliative care interventions.

We employed an exploratory cross-sectional design to examine psychosocial and existential concerns among a purposive sample (N = 30) of advanced lung cancer patients using the “end-of-life preparation” and “life completion” subscales of the Quality of Life at the End of Life (QUAL–E) questionnaire. Nonparametric methods were employed to analyze preparation, completion, global quality of life (QoL), and the associations among depressive symptoms, preparation, completion, and global QoL.

Higher scores on life completion were associated with better global QoL, and with items related to transcendence, communicative acts, and interpersonal relationships demonstrating important contributions. The perception of being a future burden on family members was the greatest concern within the preparation domain. Depressive symptoms were not associated with preparation, completion, or global QoL.

Psychosocial and existential issues contribute to QoL at the EoL among older adults with late-stage lung cancer during cancer-directed therapy, concurrent care, and hospice. The role of preparation, especially self-perceived burden, merits further research early on in the oncological setting. The preparation and life completion subscales of the QUAL–E are feasible clinical tools for facilitating dyadic communication about sensitive topics in the palliative care setting.

Retinoblastoma is the most common primary intraocular tumor of childhood with >95% survival rates in the US. Traditional therapy for retinoblastoma often included enucleation (removal of the eye). While much is known about the visual, physical, and cognitive ramifications of enucleation, data are lacking about survivors' perception of how this treatment impacts overall quality of life.

Qualitative analysis of an open-ended response describing how much the removal of an eye had affected retinoblastoma survivors' lives and in what ways in free text, narrative form.

Four hundred and four retinoblastoma survivors who had undergone enucleation (bilateral disease = 214; 52% female; mean age = 44, SD = 11) completed the survey. Survivors reported physical problems (n = 205, 50.7%), intrapersonal problems (n = 77, 19.1%), social and relational problems (n = 98, 24.3%), and affective problems (n = 34, 8.4%) at a mean of 42 years after diagnosis. Three key themes emerged from survivors' responses; specifically, they (1) continue to report physical and intrapersonal struggles with appearance and related self-consciousness due to appearance; (2) have multiple social and relational problems, with teasing and bullying being prominent problems; and (3) reported utilization of active coping strategies, including developing more acceptance and learning compensatory skills around activities of daily living.

This study suggests that adult retinoblastoma survivors treated with enucleation continue to struggle with a unique set of psychosocial problems. Future interventions can be designed to teach survivors more active coping skills (e.g., for appearance-related issues, vision-related issues, and teasing/bullying) to optimize survivors' long-term quality of life.

Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.

Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.

Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE–2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire.

Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81).

While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

Disclosing the truth when breaking bad news continues to be difficult for health professionals, yet it is essential for patients when making informed decisions about their treatment and end-of-life care. This literature review aimed to explore and examine how health professionals, patients, and families experience truth disclosure during the delivery of bad news in the inpatient/outpatient palliative care setting.

A systemized search for peer-reviewed, published papers between 2013 and 2020 was undertaken in September 2020 using the CINAHL, Medline, and PsycInfo databases. The keywords and MeSH terms (“truth disclosure”) AND (“palliative care or end-of-life care or terminal care or dying”) were used. The search was repeated using (“bad news”) AND (“palliative care or end-of-life care or terminal care or dying”) terms. A meta-synthesis was undertaken to synthesize the findings from the eight papers.

Eight papers were included in the meta-synthesis and were represented by five Western countries. Following the synthesis process, two concepts were identified: “Enablers in breaking bad news” and “Truth avoidance/disclosure.” Several elements formed the concept of Enablers for breaking bad news, such as the therapeutic relationship, reading cues, acknowledgment, language/delivery, time/place, and qualities. A conceptual model was developed to illustrate the findings of the synthesis.

The conceptual model demonstrates a unique way to look at communication dynamics around truth disclosure and avoidance when breaking bad news. Informed decision-making requires an understanding of the whole truth, and therefore truth disclosure is an essential part of breaking bad news.

Our aim was to examine the prevalence, correlates, and association of depressive and anxiety disorders with quality of life (QoL) and such other outcomes as the need for psychosocial services in cancer patients.

A total of 400 patients participated in a multicenter survey involving five cancer centers located throughout Korea. The Short-Form Health Survey, the MD Anderson Symptom Inventory, the Mini-Mental Adjustment to Cancer (MINI-MAC), and Mini-International Neuropsychiatric Interview were administered.

The prevalence rates for depressive and anxiety disorders were 16 and 17.1%, respectively. Younger age and poor Eastern Cooperative Oncology Group performance status, and all physical symptoms, as well as helplessness/hopelessness, anxious preoccupation (AP), and cognitive avoidance (CA) on the MINI-MAC were found to be significantly related to depressive disorder (DD) in a univariate logistic regression analysis. Metastases, the symptoms of disturbed sleep, dry mouth, and numbness or tingling, as well as AP and CA were significantly correlated with anxiety disorder (AD) in the univariate analysis. In the multivariate analyses, only AP was significant for AD (odds ratio = 2.94, p < 0.001), while none reached statistical significance for DD. Psychiatric comorbidity status had a detrimental effect on various dimensions of QoL. Patients with DD or AD reported a significantly higher need for professional psychosocial services.

Given the substantial prevalence and pervasive impact of DD and AD on various aspects of QoL, its assessment and care should be integrated as a regular part of oncological care throughout the cancer continuum.