Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers.

This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process.

Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want.

Our findings suggest the necessity for greater awareness of patients’ and their relatives’ needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care.

Theoretical and conceptual frameworks are often underutilized in research, which may diminish understanding of the phenomena and contribute to the under-development of interventions. The topic of low/disparate rates of Advance Care Planning (ACP) among African Americans has been researched extensively; however, the use of theoretical and/or conceptual frameworks has not been reported. The purpose of this review is to describe theoretical and/or conceptual frameworks utilized in studies that investigated factors affecting perceptions of ACP or ACP rates among African Americans.

Utilizing a narrative, literature review process, themes were generated, applied, and described with frequencies across broad categories of study characteristics, framework categories and key constructs, mode of framework application, and quality of framework reporting.

Four main types of frameworks were found with behavioral frameworks dominating the collection of studies. Complex, systems theoretical frameworks were less common. Framework use and reporting quality findings are described.

The problem of disparate rates of ACP among African Americans is nuanced and varied, stemming from both internal (e.g., personal, behavioral) and external factors (e.g., living conditions). While important and necessary to focus on internal, psychological factors, it is also vital to incorporate systems’ theories such as the Cumulative Disadvantage Theory to better understand and demonstrate inherent complexities. Recommendations for framework use are discussed for research and clinical application. Incorporating complexity science approaches and multi-systems theories may support multi-level modeling needed to understand this problem and reduce ACP disparities in this population.

This study aims to identify factors associated with divorce following breast cancer diagnosis and measures the impact of divorce on the quality of life (QoL) of patients.

We used cross-sectional survey data collected at breast cancer outpatient clinics in South Korea from November 2018 to April 2019. Adult breast cancer survivors who completed active treatment without any cancer recurrence at the time of the survey (N = 4,366) were included. The participants were classified into two groups: “maintaining marriage” and “being divorced,” between at the survey and at the cancer diagnosis. We performed logistic regression and linear regression to identify the factors associated with divorce after cancer diagnosis and to compare the QoL of divorced and nondivorced survivors.

Approximately 11.1/1,000 of married breast cancer survivors experienced divorce after cancer diagnosis. Younger age, lower education, and being employed at diagnosis were associated with divorce. Being divorced survivors had significantly lower QoL (Coefficient [Coef] = −7.50; 95% CI = −13.63, −1.36), social functioning (Coef = −9.47; 95% CI = −16.36, −2.57), and body image (Coef = −8.34; 95% CI = −6.29, −0.39) than survivors who remained married. They also experienced more symptoms including pain, insomnia, financial difficulties, and distress due to hair loss.

Identifying risk factors of divorce will ultimately help ascertain the resources necessary for early intervention.

The objective of our study was to determine the satisfaction levels of family members of patients with advanced-stage cancer.

This descriptive study was conducted in the palliative care and medical oncology clinics of a university hospital in the province of Izmir between April of 2011 and January of 2012. The study sample consisted of a total of 145 family members, who were selected from among the family members of patients with advanced-stage cancer receiving palliative treatment. The study data were obtained using the Patient Description Form and Family Satisfaction Scale during face-to-face interviews with patients.

Some 67% of patients were female and 33% male, 70% were married, 35% were high school graduates, and 34.5% were housewives. The average total family satisfaction score was 76.87 ± 1.14, and the average scores for the component variables were as follows: information giving 74.37 ± 1.28, availability of care 78.40 ± 1.17, physical care 78.99 ± 1.09, and psychosocial care 74.52 ± 1.30. We found a relationship between the level of satisfaction of family members and (1) gender, (2) occupation, (3) presence of someone supporting the care, and (4) possession of sufficient information about the patient (p < 0.05).

Satisfaction levels of participants were determined to be high. We found that family member satisfaction levels were affected by gender and occupation, the existence of someone supporting the care, and possession of sufficient information about the patient.

Controlling hyperactive and mixed delirium is extremely important for the continuation of cancer treatment in palliative care. In general, oral antipsychotics are the first-line drug therapy for delirium; however, oral administration is problematic in patients presenting dysphagia. In this case report, we describe an end-stage cancer patient with aphagia who developed delirium and responded to sublingual antipsychotic asenapine for treating delirium. We also discuss the effectiveness of asenapine in hyperactive delirium as well as its usefulness for treating delirium in palliative care.

A cancer patient with delirium was treated with several oral antipsychotics commonly used to treat delirium but did not respond to any of them. The patient subsequently developed aphagia with progression of the disease. Sublingual asenapine was therefore given to treat delirium.

Asenapine was effective in treating delirium without causing any obvious side effects.

In the present case, asenapine was effective in treating hyperactive delirium that did not respond to commonly used antipsychotics. Because asenapine is a sublingual tablet, it can be used in patients with dysphagia and aphagia. In addition, this drug is anticipated to diminish the burden of end-stage patients from taking oral medications. Furthermore, its management is easier compared with injections, and can therefore also be easily used in homecare patients. Based on these perspectives, asenapine may become an important option for treating delirium in palliative care.

In the United States, approximately 20% patients die annually during a hospitalization with an intensive care unit (ICU) stay. Each year, critical care costs exceed $82 billion, accounting for 13% of all inpatient hospital costs. Treatment of sepsis is listed as the most expensive condition in US hospitals, costing more than $20 billion annually. Electronic Medical Orders for Life-Sustaining Treatment (eMOLST) is a standardized documentation process used in New York State to convey patients’ wishes regarding cardiopulmonary resuscitation and other life-sustaining treatments. No study to date has looked at the effect of eMOLST as an advance care planning tool on ICU and hospital costs using estimates of direct costs. The objective of our study was to investigate whether signing of eMOLST results in any reduction in length of stay and direct costs for a community-based hospital in New York State.

A retrospective chart review was conducted between July 2016 and July 2017. Primary outcome measures included length of hospital stay, ICU length of stay, total direct costs, and ICU costs. Inclusion criteria were patients ≥65 years of age and admitted into the ICU with a diagnosis of sepsis. An independent samples t test was used to test for significant differences between those who had or had not completed the eMOLST form.

There were no statistical differences for patients who completed or did not complete the eMOLST form on hospital's total direct cost, ICU cost, total length of hospital stay, and total hours spent in the ICU.

Completing an eMOLST form did not have any effect on reducing total direct cost, ICU cost, total length of hospital stay, and total hours spent in the ICU.

Meaning-centered psychotherapy (MCP) is a structured psychotherapeutic intervention that aims to improve existential and spiritual well-being in patients with advanced cancer. To validate it, several efficacy studies with predominantly non-Hispanic white patients have been done. Puerto Ricans residing on the island are a largely overlooked segment of the US Latinx population. They have a strong national identity and are embedded in a collectivist culture which shares the Spanish language, cultural traditions, and an emphasis on familism, a cultural factor that values the role of the family in ensuring the well-being of its members.

The purpose of this study is to present a case study focused on a Puerto Rican advanced cancer patient who underwent MCP to assess the comprehension and acceptance of the MCP intervention.

We used a mixed-methods study design that included the taking of ethnographic notes, and pre- and post-test assessments of the scores the patient received on all the measures (using validated scales). The ethnographic notes were analyzed to determine the participant's comprehension and acceptance of the MCP intervention. Content analysis was performed on the ethnographic notes by three independent coders using a deductive coding approach. Pre- and post-interview assessments were conducted to explore changes in distress, spiritual well-being, and self-perceived quality of life.

A Latino patient with stage III cancer, low income, and low literacy skills showed low comprehension of the concepts of meaning, the finite, legacy, and moderate comprehension and acceptance of the concepts of the search for hope, purpose in life, connecting with life, courage, life's limitations, and sources of meaning. However, the patient showed high comprehension of death and dying (i.e., meaningful death). The patient showed low acceptance of death and dying concepts and high acceptance of the integration of family members into the therapy.

Additional studies are needed to address cultural themes and to improve the comprehensibility and acceptance of the manual's content and the central MCP concepts. The findings suggest that MCP has the potential of being a feasible form of psychotherapy for Latinx patients suffering from distress, low spiritual well-being, and low self-perceived QOL.

This study aimed to determine the depression and nutritional statuses of advanced stage cancer patients and investigate the relationship between depression and malnutrition.

The descriptive, cross-sectional, and correlational study was conducted with 245 patients with advanced cancer. The data were collected by using an Information Form, the Visual Analog Scale, the NRS-2002-Nutritional Risk Score, and the Beck Depression Inventory.

The mean NRS-2002 score of the patients was 2.22, and when the cutoff value was accepted as 3, it was determined that 39.2% of the patients had malnutrition. The mean Beck Depression Inventory score of the patients was 35.06, and they were found to experience severe depression. There was a positive and significant relationship between the NRS-2002 scores and the Beck Depression Inventory scores (r = 0.409; p < 0.001).

These results showed that there was a strong relationship between the depression and malnutrition levels of advanced stage cancer patients. Deterioration in the nutritional status of the advanced stage cancer patients was associated with a significant worsening effect in terms of depression and pain.

This project evaluated the psychometric properties of a translated version of the Head and Neck Cancer Inventory (HNCI) for use with Japanese patients. The HNCI is a measure for assessing the quality of life (QoL) of head and neck cancer patients and survivors. The present study was aimed at investigating the reliability and validity of this translated instrument.

Some 165 patients with head and neck cancer (HNC) were enrolled at the Tokyo Medical and Dental University Hospital. The instrument's internal consistency and test–retest reliability were evaluated. Criterion-related validity was assessed by correlations between the HNCI and the Functional Assessment of Cancer Therapy–Head and Neck (FACT–H&N) scales.

Some 29 of the 30 items in the original version were selected to comprise the Japanese version of the HNCI (Japanese HNCI). Investigation of criterion-related validity using the FACT–H&N demonstrated significant correlations (Spearman's ρ = 0.47–0.63). The value of Cronbach's α for each subscale ranged from 0.84 to 0.87. Test–retest reliability showed an intraclass correlation coefficient (ICC) of 0.62–0.79.

The reliability and validity of the Japanese HNCI were evaluated. Although its classification is different from the original U.S. version, the Japanese HNCI is a self-administered questionnaire that can assess quality of life (QoL) in patients with head and neck cancer.

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

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

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

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

This study aimed to examine the impact of COVID-19 on hospice Interdisciplinary team (IDT) members’ self-reported stress and identify possible sources of moral distress.

A cross-sectional survey was conducted using Qualtrics to understand the impact of COVID-19 on quality improvement initiative implementation and hospice IDT members’ general and dementia-specific care provision. Directed qualitative content analysis was used to analyze hospice IDT members’ responses from five open-ended survey questions that were indicative of stress and possible moral distress.

The final sample consisted of 101 unique respondents and 175 comments analyzed. Three categories related to sources of moral distress based on hospice IDT member survey responses were identified: (1) impact of telehealth, personal protective equipment (PPE), and visit restrictions on relationships; (2) lack of COVID-19-specific skills; and (3) organizational climate. Sources of moral distress were categorized in 40% of all responses analyzed.

This study is one of the first to document and confirm evidence of potential stress and moral distress amongst hospice IDT members during COVID-19. It is imperative given the possible negative impact on patient care and clinician well-being, that future research and interventions incorporate mechanisms to support clinicians’ emotional and ethical attunement and support organizations to actively engage in practices that address clinician moral distress resulting from restrictive environments, such as the one necessitated by COVID-19.

Our aims were to report an analysis of the concept of cultural competency and to explore how the cultural competency of the palliative care workforce impacts the holistic care of young people with palliative care needs from South Asian cultures.

Using keywords, we searched the online databases MEDLINE, CINAHL, ScienceDirect, and PubMed from January of 1990 through to December of 2016. Some 1543 articles were retrieved, and inclusion and exclusion criteria were applied. A total of 38 papers were included in the concept analysis. The data were analyzed using Coad's (2002) adapted framework based on Rodgers's (1989) evolutionary concept analysis, focusing on the attributes, antecedents, consequences, and related terms in relation to culturally competent care. A model case of culturally competent care was also constructed.

The literature provides evidence that the concept of culturally competent care is a complex one, which is often expressed ambiguously. In addition, there is a paucity of research that involves service users as experts in defining their own needs and assessing their experiences related to cultural care.

Cultural care should be integral to holistic patient care, irrespective of a person's race or ethnicity. There is an urgent need to involve young BAME patients with palliative care needs and their families in the development of a robust tool to assess cultural competency in clinical practice.

To date, nearly 10,000 World Trade Center (WTC) responders have been diagnosed with at least one type of WTC-related cancer, and over 70 types of cancer have been related to WTC occupational exposure. Due to the observed latency period for malignancies, the WTC Health Program anticipates increases in rates of new cancer diagnoses. Given the growing number of cancer diagnoses in this population, there is an urgent need to develop a novel intervention to address the psychosocial needs of WTC responders with cancer. Meaning-centered psychotherapy (MCP) is a structured psychotherapeutic intervention originally developed to help patients with advanced cancer find and sustain meaning in life despite illness-related limitations. Existential distress and loss of meaning are critical and understudied elements of psychological health that have been widely overlooked among WTC responders with cancer.

We have adapted MCP for WTC responders (MCP-WTC) for the treatment of WTC responders who have been diagnosed with WTC-certified cancers. MCP-WTC aims to target the complex crisis in meaning faced by those responders who responded to the 9/11 attacks and subsequently were diagnosed with cancer as a result of their service.

We describe the adaptation of MCP-WTC and the application of this intervention to meet the unique needs of those exposed to the terrorist attacks of September 11, 2001 (9/11), participated in the rescue, recovery, and clean-up effort at Ground Zero, and were diagnosed with WTC-related cancer. We highlight the novel aspects of this intervention which have been designed to facilitate meaning-making in the context of the patient's response to 9/11 and subsequent diagnosis of cancer.

This work provides a rationale for MCP-WTC and the potential for this intervention to improve the quality of life of WTC responders and help these patients navigate life after 9/11 and cancer.

This study is aimed to perform the translation and cultural adaptation of the Neonatal Palliative Care Attitude Scale (NiPCAS) and evaluation of its psychometric properties with Portuguese neonatal nurses.

The research started with a scoping review that allowed the identification of the NiPCAS. It was a methodological study with a quantitative approach. The semantic equivalence of the items was adjusted with the participation of 20 neonatal nurse experts. They performed facial and quantitative content validation. Psychometric validation of the NiPCAS was performed on a nonprobability nurses sample (n = 283) in 13 level 3 neonatal units between July 2021 and February 2022. Confirmatory factor analysis using the polychoric correlation matrix was performed to estimate factor validity using the “lavaan” package for R statistical software. Internal consistency was estimated using Cronbach's alpha coefficient, and item sensitivity was assessed using the asymmetry and kurtosis coefficients. Empirical indices were considered: chi-square over degrees of freedom; comparative fit index; normed fit index; Tucker–Lewis index, and root mean square error of approximation; average extracted variance and composite reliability were used to assess convergent validity.

Asymmetry and kurtosis were <|3| and <|7|, respectively, suggesting psychometric sensitivity. The convergent validity of the factors was: F1, FCF1 = 0.90 and for F2, FCF2 = 0.80, and a lower value for F3, FCF3 = 0.40. According to the squared correlation criterion average variance extracted (AVE) between the factors, there was no discriminant validity for F1 and F2, but there was discriminant validity for F1, F3, F2, and F3.

This instrument has implications for providing end-of-life care to newborns and their families. The use of this instrument reveals several barriers and facilitating elements inherent in the organization and culture of the facility and nursing education.