This is a pilot study with a primary goal to develop an effective, targeted educational intervention that can serve as a teaching tool to educate African American (AA) population, especially the elderly, on options of end of life (EOL) prior to critical care.

We first assessed the level of preparation for EOL in the AA community through a survey instrument. The survey was used to determine the deficits in knowledge in AA population in Mid-Michigan regarding EOL choices before and after the educational intervention. Paired-sample t-test was used to assess changes in understanding about EOL planning options. Regressions analysis was used to assess these changes while including several demographic covariates. P < 0.05 was considered statistically significant.

Our pilot data indicated that the educational intervention could be used as an effective teaching tool in educating AA population on EOL choices.

AA patients are more likely to choose life-sustaining measures at the end of their lives compared to other ethnic groups despite terminal illness. This decision is partly based on lack of knowledge of the available options of care at the EOL. Due to multiple life-sustaining measures, the AA patients are not receiving the care to help them peacefully die. This study provides evidence that physicians will need to increase their educational efforts with the AA population to help them better understand EOL options. An educational tool like the one developed in this study may be helpful and lessen the time of education so that the physician can answer any questions at the end of the session and also empower individuals and communities to take an active role in creating a culture of wellness at the EOL and decreasing morbidity.

Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation.

The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018–January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question “Are you depressed?” (SQD), (3) the question “Do you feel anxious?” (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL).

Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%).

Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively).

There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.

Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer.

Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis.

Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support.

Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.

To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions.

Eight online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, Airiti, GARUDA Garba Rujukan Digital, and OpenGrey) from 2010 to February 5, 2020 were searched for studies investigating EoL care and the PoD for pediatric patients receiving and not receiving PC.

Of the 6,468 citations identified, 14 cohort studies and one case series were included. An evidence base of mainly adequate- and strong-quality studies shows that inpatient hospital PC, either with or without the provision of home and community PC, was found to be associated with a decrease in intensive care use and high-intensity EoL care. Conflicting evidence was found for the association between PC and hospital admissions, length of stay in hospital, resuscitation at the time of death, and the proportion of hospital and home deaths.

Current evidence suggests that specialist, multidisciplinary involvement, and continuity of PC are required to reduce the intensity of EoL care. Careful attention should be paid to the need for a longer length of stay in a medical setting late in life, and earlier EoL care discussion should take place with patients/caregivers, especially in regard to attempting resuscitation in toddlers, adolescents, and the young adult population. A lack of robust evidence has identified a gap in rigorous multisite prospective studies utilizing data collection.

This study aimed to examine family carers’ willingness, perceived difficulties and confidence in providing home end-of-life care to family members in future and their needs for support for doing so. Specific focus was on whether significant differences were found between carers of low and high levels of psychological distress.

Family carers who had been providing care to family members living in the community were recruited via a local elderly agency in Hong Kong. A survey was conducted. Carers were asked to complete a questionnaire which included self-developed items, the Hospital Anxiety and Depression Scale, and the Carers’ Support Need Assessment Tool.

Of the 89 participants, 63.8% reported willingness to provide end-of-life care in future (increased to 78.5% if support needs were met), but most perceived it as difficult, and over half were not confident about doing so. The three greatest needs for support in end-of-life care are understanding the relative's illness, knowing what to expect in future, and knowing who to contact if concerned. Participants of the high psychological distress group experienced a significantly greater need for support in “dealing with your feelings and worries” and “looking after your own health.”

Current family carers may not be ready for future provision of home end-of-life care. Meeting their support needs in providing end-of-life care is crucial to ensure the continuity of care provision. Psychologically distressed carers may often ignore self-care and may need helping professionals’ additional support.

Hispanics often have disparities at the end of life. They are more likely to die full code and less likely to have discussions regarding prognosis and do not resuscitate (DNR)/do not intubate (DNI), despite studies showing Hispanic values comfort over the extension of life. Barriers to patient-centered care include language,socioeconomic status and health literacy.

We evaluated the impact of palliative care (PC) consults on the change of code status and hospice referrals, comparing seriously ill Hispanic and non-Hispanic white patients.

A retrospective cohort study of all white and Hispanic patients referred to the PC service of a county hospital from 2006 to 2012. We evaluated ethnicity, language, code status at admission and after PC consult, and hospice discharge. Chi-squared tests were used to analyze characteristics among three groups: non-Hispanic white, English-speaking Hispanic, and Spanish-speaking Hispanic patients.

Of 925 patients, 511 (55%) were non-Hispanic white, 208 (23%) were English-speaking Hispanic, and 206 (22%) were Spanish-speaking Hispanic patients. On admission, there was no statistically significant difference in code status among the three groups (57%, 64%, and 59% were full code, respectively, p = 0.5). After PC consults, Spanish-speaking Hispanic patients were more likely to change their code status to DNR/DNI when compared with non-Hispanic white and English-speaking Hispanic patients (44% vs. 32% vs. 28%, p = 0.05). Spanish-speaking Hispanic patients were more likely to be discharged to hospice when compared with English-speaking Hispanics and non-Hispanic whites (33%, 29%, and 23%, respectively, p = 0.04).

Spanish-speaking Hispanic patients were more likely to change from full code to DNR/DNI compared with non-Hispanic white and English-speaking Hispanic patients, despite similar code status preferences on admission. They were also more likely to be discharged to hospice. PC consults may play an important role in helping patients to align their care with their values and may prevent unwanted aggressive interventions at the end of life.

Hemato-oncologists are highly exposed to patients’ death and suffering during their daily work. The current exploratory and cross-sectional study examined death acceptance attitudes, in order to explore whether death acceptance attitudes are associated with fear of death.

A convenience sample of 50 Israeli hemato-oncologists currently working in a clinical setting participated in the study. They completed the Death Attitudes Profile revised questionnaire (DAP-R), which examines levels of fear of death, death avoidance, approach acceptance, neutral acceptance, and escape acceptance. In addition, the hemato-oncologists reported on levels of exposure to patients’ death and suffering.

A repeated measures MANOVA revealed significantly lower levels of neutral acceptance, compared with approach and escape acceptance. Path analysis for predicting fear of death by the other study variables revealed that death avoidance fully mediated the relationship between approach acceptance and fear of death as well as revealing a negative correlation between neutral acceptance and fear of death (higher neutral acceptance was related to lower fear of death). No associations were found between exposure to death and suffering and attitudes toward death.

In contrast to previous conceptualizations, the ability to adaptively cope with fear of death differed in accordance with death acceptance attitudes. Whereas neutral acceptance adaptively defended from fear of death, approach acceptance was associated with increased fear of death through death avoidance. As hemato-oncologists are highly exposed to patients’ death and suffering, and are required to make critical medical decisions on daily basis, these findings may have substantial implications for end-of-life care and the process of medical decision-making regarding the choice of treatment goals: cure, quality of life, and life prolongment. Further research is needed to investigate the role of death acceptance attitudes among hemato-oncologists.

The study was conducted in order to determine the relationship between spiritual well-being and self-transcendence and to identify the spiritual practices utilized by Filipino patients who are recovering from breast cancer.

A descriptive correlational study was used, and a purposive sampling technique was utilized to select the participants in the study. Data were collected using self-administered questionnaires and were analyzed using frequency, percentage, mean, standard deviation, and Pearson's r correlation.

The study revealed that the overall mean score of the spiritual index of well-being among the participants was 4.41 (±0.54), while the mean score of self-transcendence was 3.64 (±0.50). The results showed that there was a significant relationship between spirituality and self-transcendence among Filipino women with breast cancer.

Filipino women with breast cancer rely on their spirituality, which enables them to find meaning in their illness. Hence, assessing spirituality among this population group will enable nurses to provide holistic nursing care, as this can help them cope with the challenges associated with their illness.

The importance of supporting advance care planning (ACP) by healthcare professionals is recognized worldwide, and assessing the outcomes, such as people's understanding and readiness for ACP, using an appropriate instrument is essential. We, therefore, developed a Japanese version of the Advance Care Planning Engagement Survey (ACP Engagement Survey; 15 items, 9 items, and 4 items), an international scale for assessing the progress of the ACP, and examined its validity and reliability.

The ACP Engagement Survey was translated into Japanese, back-translated, and culturally adapted, and the final version was reviewed by the author of the original version. Data on basic demographic information and ACP-related experiences were simultaneously collected as external criteria in an online survey of older adults with chronic diseases. The Cronbach's alpha was calculated to assess its internal consistency, and a retest was performed three days later to calculate the intra-class correlation coefficients (ICCs).

A total of 200 respondents (mean age 70; 9.5% female) were included in the analysis. None of the items showed a ceiling effect, but several items did exhibit a floor effect. The factor structure was the same 2-factor structure as the original version, and both factors exhibited a high cumulative contribution rate. The Cronbach's alphas were 0.94 (15-item version), 0.91 (9-item version), and 0.95 (4-item version), and ICCs were of 0.88 (15-item version), 0.9 (9-item version), and 0.84 (4-item version).

The Japanese version of the ACP Engagement Survey was confirmed to have very good reliability regarding both internal consistency and test-retest reliability. Together with the result of the item analysis, we can conclude that the Japanese version of the ACP Engagement Survey is sufficiently reliable to be utilized in interventional studies, and it has acceptable content validity, construct validity, and criterion-related validity.

This study aimed to develop an assessment tool measuring comprehensive interdisciplinary competence in end-of-life care (EoLC) and investigate its content, construct validity, reliability, and their correlates.

Items of the Comprehensive End-of-Life Care Competence Scale (CECCS) were developed according to a comprehensive core competence framework in EoLC and refined by a multi-disciplinary panel of experts. The psychometric properties were further tested through region-wide surveys of self-administered questionnaires completed by health and social care professionals in Hong Kong.

Participants comprised social workers, nurses, physicians, and allied health care professionals (445 participants in 2016, 410 in 2017, and 523 in 2018). Factor analysis validated the construct of the questionnaire which encompassed 26 items describing EoLC core competences in seven domains with satisfactory internal reliability (confirmatory factor analysis: χ2/df = 3.12, GFI = 0.85, TLI = 0.93, CFI = 0.94, RMSEA = 0.07; Cronbach's alphas ranged from 0.89 to 0.97): overarching value & knowledge, communication skills, symptom management, psychosocial and community care, end-of-life decision-making, bereavement care, and self-care. Higher perceived levels in these competences were correlated with a higher level of job meaningfulness and satisfaction (r ranged from 0.17 to 0.39, p < 0.01) and correlated with lower perceived stress (r ranged from –0.11 to –0.28, p < 0.05). Regression analysis found that age and work involvement in EoLC were positively associated with the perceived competences in all domains; professionals working in hospices reported higher levels of competence than workers in other settings; social workers showed lower perceived competences in symptom management, but higher levels in bereavement care than other health care professionals.

The validity and internal reliability of CECCS were demonstrated. The levels of perceived competences working in EoLC were significantly associated with professionals’ job-related well-being. Practically, there is still room for improvement in comprehensive competences among health and social care workers in Hong Kong.

Cancer patients often want to spend their final days at home, and it is essential that general practitioners have knowledge of and technical skills related to cancer medicine and symptom relief. Recent clinical studies have revealed that Wernicke encephalopathy (WE) is quite common in cancer patients. However, there have been no reports to date on WE in cancer patients undergoing home medical care.

From a series of cancer patient undergoing home medical care, we reported a patient with lung cancer who developed WE.

An 84-year-old female with lung cancer undergoing home medical care developed an impaired mental state and an attention deficit. Her symptoms fulfilled the diagnostic criteria for delirium. WE was suspected as the patient's food intake had fallen from normal a month previously to somewhere between 50% or just a few mouthfuls. This diagnosis was supported by abnormal serum thiamine and the disappearance of delirium after thiamine administration.

When delirium occurs in cancer patients undergoing home treatment, it is necessary to suspect thiamine deficiency as a potential cause, as appropriate diagnosis and treatment can prevent irreversible brain-related sequelae.

The stigma associated with cancer has negative impacts on cancer patients as well as the general public, who have a potential risk of cancer. To the best of our knowledge, a validated measure to assess cancer stigma among the general Japanese population does not exist.

We translated the Cancer Stigma Scale (CASS) — a 25-item self-administered scale to evaluate stigma related to cancer — into Japanese and examined its psychometric properties. The Japanese version of CASS (J-CASS) was validated among a sample of the general Japanese population through an online survey to validate its test–retest reliability, internal consistency, and concurrent validity.

A total of 319 responses were included in the analysis. An exploratory factor analysis eliminated two original items but showed a six-factor model (Awkwardness, Severity, Avoidance, Policy Opposition, Personal Responsibility, and Financial Discrimination), which was similar to the original scale. Cronbach's alpha for each factor was satisfactory, ranging from 0.81 to 0.91. The internal correlation coefficients were above 0.70, except for Policy Opposition. The total and subtotal scores of each factor of the J-CASS were significantly associated with respondents’ age, gender, familiarity with cancer patients, and social desirability, demonstrating the scales’ good concurrent validity. A substantial proportion of the participants selected “unsure” for some items of the scale, suggesting a further need for refining the scale.

This study demonstrated that J-CASS is a reliable and valid measure for evaluating misconceptions and stigma toward cancer in the general Japanese population.

The objective of this training project is to develop and host Interprofessional Communication courses to improve interdisciplinary communication in oncology care. The initial national course was held in a virtual format and included pre- and post-course participant data. The curriculum was developed with support from the National Cancer Institute.

A virtual two-day course was held to equip nurses, social workers, and chaplains with vital communication skills in oncology practice, so that they could return to their home institutions and teach communication skills to other healthcare professionals, with the intention of making improved communication a quality improvement goal. Fifty-two participants were selected through an application process to attend the virtual course in two-person interprofessional teams (e.g., nurse and chaplain, or social worker and nurse). The Interprofessional Communication Curriculum was based on the National Consensus Project for Quality Palliative Care's eight domains of quality palliative care. The six online modules developed by the investigators were presented in lectures, supplemented by discussion groups, role plays, and other methods of experiential learning.

Pre- and post-course results identified areas of communication, which are a priority for improvement by oncology clinicians. Participant goals identified specific strategies to be implemented by participants in their settings.

The need for communication training was clearly demonstrated across professions in this national training course. Participants were able to apply course content to their goals for quality improvement in cancer settings.

The objectives of this study are to describe patients’ experiences of family members’ reactions to diagnosis of breast cancer and investigate the role of family support in the management of breast cancer.

The study used the descriptive qualitative method in data collection and analysis. Fifteen participants, who were undergoing either radiotherapy or chemotherapy treatment at a private hospital, consented and participated in the study. Data were content analyzed under two specific themes on family members’ reactions and family support received.

The findings show that some participants reported negative reactions of some family members, and this affected them negatively. While some participants received support from their families, others did not.

The findings of our study show the critical role of family support in the management of breast cancer; therefore, family members should be encouraged to give breast cancer patient the necessary support to help them manage their sick role behavior since their illness has no cure.

Family carers (FCs) of nursing home (NH) residents are best placed to notice deteriorations that signal impending death in their relative, which can open a conversation with healthcare professionals (HCPs) about adjusting the care plan. We explored contributors to bereaved FCs’ decision to transition towards palliative-oriented care for their relatives in NHs.

This qualitative descriptive study used a phenomenological design. Thirty-two bereaved FCs across 13 Italian NHs completed semi-structured interviews. Additional data were collected on NH referrals to palliative care services (PCS) in the 6 months before study start and treatments provided in the last week of life. Content analysis with a combined inductive and deductive approach was applied to identify codes and fit them into an a priori framework. When codes did not fit, they were grouped into new categories, which were finally gathered into themes.

FCs reported four types of “trigger events” that made them doubt that their relative would recover: (1) physical deterioration (e.g., stopping eating/walking or swallowing problems); (2) social confirmation (e.g., confirming their relative's condition with friends); (3) multiple hospitalizations; and (4) external indicators (e.g., medical examinations by external consultants). A “resident-centered environment” helped FCs recognize trigger events and “raise awareness of the possibility of death”; however, the “need for reassurance” was pivotal to a “gradual transition towards palliative-oriented care”. When participants did not recognize the trigger event, their relative continued to receive curative-oriented care. NHs that referred residents to PCS discussed palliative-oriented care more frequently with FCs, had a lower nurse-to-resident and nurse aide-to-resident ratio, and administered more palliative-oriented care.

Trigger events represent an opportunity to discuss residents’ prognosis and are the starting point for a gradual transition towards palliative-oriented care. Adequate staffing, teamwork, and communication between FCs and healthcare professionals contribute to a sensitive, timely shift in care goals.

Although the literature recognizes the participation of patients in medical decisions as an important indicator of quality, there is a lack of consensus regarding the influence of advance directives (ADs) on reducing aggressive measures during end-of-life care involving cancer patients.

A systematic review was conducted to analyze the influence of ADs on reducing aggressive end-of-life care measures for cancer patients.

We searched the Medline, Embase, Web of Science, and Lilacs databases for studies published until March 2018 using the following keywords, without language restrictions: “advance directives,” “living wills,” “terminal care,” “palliative care,” “hospice care,” and “neoplasms.” Article quality was assessed using study quality assessment tools from the Department of Health and Human Services (NHLBI).

A total of 1,489 studies were identified; 7 met the inclusion criteria. The studies were recently published (after 2014, 71.4%). Patients with ADs were more likely to die at the site of choice (n = 3) and received less chemotherapy in the last 30 days (n = 1). ADs had no impact on intensive care unit admission (n = 1) or hospitalization (n = 1). One study found an association between ADs and referral to palliative care, but other did not find the same result.

Of the seven articles found, four demonstrated effects of ADs on the reduction in aggressive measures at the end of life of cancer patients. Heterogeneity regarding study design and results and poor methodological quality are challenges when drawing conclusions.

A qualitative interpretive-systemic focus group study was conducted to examine the developmental and implementational underpinnings of Asia's first national Advance Care Planning (ACP) programme constituted in Singapore.

63 physicians, nurses, medical social workers, and allied health workers who actively rendered ACP were purposively recruited across seven major public hospitals and specialist centers.

Framework analysis revealed 19 themes, organized into 5 categories including Life and Death Culture, ACP Coordination, ACP Administration, ACP Outcomes, and Sustainability Shift. These categories and themes formed an Interpretive-Systemic Framework of Sustainable ACP, which reflects the socio-cultural, socio-political, and socio-spiritual contexts that influence ACP provision, highlighting the need to adopt a public health strategy for enhancing societal readiness for end-of-life conversations.

The Interpretive-Systemic Framework of Sustainable ACP underscores the importance of health policy, organizational structure, social discourse, and shared meaning in ACP planning and delivery so as to support and empower care decision-making among terminally ill Asian patients and their families facing mortality.

Islamic population constitute more than 20% of the world population and is growing rapidly. Nevertheless, data concerning informal caregiving to older Muslim patients diagnosed with cancer are scarce. Improving the well-being of caregivers is a vital step to optimal care for the patients themselves throughout the Muslim community and the world. This study focuses on a sample of Palestinian caregivers of older Muslim patients diagnosed with cancer living in East Jerusalem, the West Bank, and Gaza. The study aims to describe the socio-demographic characteristics of the caregivers and to understand their social support, and identify predictors of caregivers’ depression.

A cross-sectional study of a convenience sample of 99 dyads of Palestinian patients (age ≥65) and their informal caregivers. Depression and social support were measured using the five items of the Geriatric Depression Scale and the Cancer Perceived Agents of Social Support questionnaire.

Caregivers were most frequently adult children (52%) or spouses (32%), with male patients cared for by spouses (47.5%) or sons (32%), and female patients by daughters (50%). Clinical levels of depression were reported by 76% of the caregivers and 85% of patients. The significant predictors of caregiver depression were female gender, lower education, lower perceived social support from spouse and family, and higher perceived support from faith.

Healthcare providers serving the study population should determine the position and role of the caregiver within the social and family structure surrounding the patients’ families. This understanding may facilitate overcoming barriers to effective and meaningful social support.

Advanced cancer in young parents (PWAC) can increase dying concerns, the fluctuating thoughts, or feelings, conscious, or unconscious, about an approaching death by a person facing a terminal illness or a family member coping with the impending death of a loved one. However, limited research has been conducted to identify dying concerns in an ill parent as the research has focused on older adults.

Our goal was to identify dying concerns that PWAC are expressing and to understand how these concerns affect measurable outcomes.

CINHAL, MEDLINE, PsychARTICLES, PsycINFO, Social Work Abstracts, Health Source: Nursing/Academic Edition, and Psychology and Behavioral Sciences Collection were searched. Articles included were samples of PWAC, peer-reviewed, and published within the last 10 years. Elderly or pediatric populations, PWAC with adult children, and early-stage cancer were excluded. The initial search resulted in 1,526 articles, 18 were identified as potentially relevant. Fourteen articles were identified and reviewed.

PWAC expressed concerns for their children (n = 11), concerns for their co-parent (n = 4), and personal concerns (n = 11). Additionally, PWAC have decreased quality of life, have significant emotional and psychological distress, and have increased family dysfunction in relation to their concerns. Samples limit the generalizability of the findings. Majority of the articles consisted of White, upper, middle-class (n = 8) women (n = 7) diagnosed with breast cancer (n = 11) within nuclear families (n = 11).

Dying concerns are described in the literature from a fairly narrow sample of PWAC. Future research should focus on recruiting participants from diverse backgrounds, genders, diagnosis types, and non-nuclear families. Identifying concerns for the co-parent would also add to the understanding of dying concerns.