The unique needs of caregivers of those with advanced heart failure (HF) are not effectively being met, and reports of physical and mental health challenges are common. The objective is to identify the current state of the literature related to family caregivers of persons with advanced HF, ascertain gaps that require further exploration, and provide preliminary practice recommendations based on the results.

Systematic review of quantitative and qualitative literature. A search of CINAHL, Medline, EMBASE, and PubMed identified 24 articles that met inclusion criteria. Data were analyzed using the constant comparison method and coded. Thematic analysis was used to develop themes.

Sixteen qualitative and seven quantitative studies met inclusion criteria. Analysis of these studies identified six key areas: (1) undertaking a journey in a state of flux, (2) gaining strength, (3) forgetting oneself along the way, (4) seeking out sources of support, (5) preparing for end of life, and (6) finding closure.

The healthcare system currently struggles to meet the care demands of patients with chronic conditions such as advanced HF; as such, informal caregivers are undertaking key roles in the management of symptoms and promotion of the health of those with advanced HF. When caregivers are not adequately prepared for their role, both patient and caregiver well-being is compromised; therefore, a deeper understanding of the caregiving experience could assist in identifying the cause of caregiver anxiety and result in the development of strategies to minimize its effects. Overall, this review will also contribute to improving the current practice when working with caregivers of persons with advanced HF and serve as a basis for development of evidence informed interventions in the future.

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.

Grief is intertwined with cultural and religious rituals that are highly appreciated in the quality standards of palliative care. Here, we aimed to investigate whether a cultural mourning ritual, the “First Feast,” can be used by palliative care teams to ease the grief response of the deceased patient's relatives.

A questionnaire with 23 questions about the prevalence of the First Feast tradition, the content, the pros and cons, and whether it would be useful for the grieving relatives of deceased patients was prepared and given to the palliative care patients’ relatives. The data were evaluated using the chi-square test.

A total of 427 participants were enrolled in the study; 60.7% were female and the mean age was 36 (±13.4). A total of 76.8% of the participants were from the Tokat region and 77.8% (n = 332) performed the First Feast tradition. A significant difference was observed among participants with Tokat origins and non-Tokat origins in terms of awareness of the tradition (84.8% and 69.7%, respectively; p = 0.001). Ninety-one percent of the participants acknowledged that the tradition helped to ease the grief response of the relatives.

The First Feast, a mourning tradition performed in Tokat and other parts of Turkey, might be a useful auxiliary method for palliative care teams to help grieving families.

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.

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.

The aims of this systematic review were to examine the effects of the overall and the different types of the interventions on the do-not-resuscitate (DNR) designation and the time between DNR and death among cancer patients.

Data were searched from the databases of PubMed, CINAHL, EMbase, Medline, and Cochrane Library through 2 November 2017. Studies were eligible for inclusion if they were (1) randomized control trails, quasi-experimental study, and retrospective observational studies and (2) used outcome indicators of DNR designation rates. The Effective Public Health Practice Project tool was used to assess the overall quality of the included studies.

The 14 studies with a total of 7,180 participants were included in this review. There were 78.6% (11 of 14) studies that indicated that the interventions could improve the DNR designation rates. Three types of DNR interventions were identified in this review: palliative care unit service, palliative consultation services, and patient-physician communication program. The significant increases of the time between DNR designation and death only occurred in a patient-physician communication program.

The palliative care unit service provided a continuing care model to reduce unnecessary utilization of healthcare service. The palliative consultation service is a new care model to meet the needs of cancer patients in non-palliative care unit. The share decision-making communication program and physician's compassion attitudes facilitate to make DNR decision early. The individualized DNR program needs to be developed according to the needs of cancer patients.

Cancer-related drowsiness (CRD) is a distressing symptom in advanced cancer patients (ACP). The aim of this study was to determine the frequency and factors associated with severity of CRD. We also evaluated the screening performance of Edmonton Symptom Assessment Scale-drowsiness (ESAS-D) item against the Epworth Sedation Scale (ESS).

We prospectively assessed 180 consecutive ACP at a tertiary cancer hospital. Patients were surveyed using ESAS, ESS, Pittsburgh Sleep Quality Index, Insomnia Severity Index, and Hospital Anxiety Depression Scale.

Ninety of 150 evaluable patients had clinically significant CRD (ESS); median (interquartile ratio): ESS. 11 (7–14); ESAS-D. 5 (2–6); Pittsburgh Sleep Quality Index. 8 (5–11); Insomnia Severity Index. 13 (5–19); Stop Bang Scoring 3 (2–4), and Hospital Anxiety Depression Scale-D 6 (3–10). ESAS-D was associated with ESAS (r, p) sleep (0.38, <0.0001); pain (0.3, <0.0001); fatigue (0.51, <0.0001); depression (0.39, <0.0001); anxiety (0.44, <0.0001); shortness of breath (0.32, <0.0001); anorexia (0.36, <0.0001), feeling of well-being [(0.41, <0.0001), ESS (0.24, 0.001), and opioid daily dose (0.19, 0.01). Multivariate-analysis showed ESAS-D was associated with fatigue (odds ratio [OR] = 9.08, p < 0.0001), anxiety (3.0, p = 0.009); feeling of well-being (OR = 2.27, p = 0.04), and insomnia (OR = 2.35; p = 0.036). Insomnia (OR = 2.35; p = 0.036) cutoff score ≥3 (of 10) resulted in a sensitivity of 81% and 32% and specificity of 70% and 44% in the training and validation samples, respectively.

Clinically significant CRD is frequent and seen in 50% of ACP. CRD was associated with severity of insomnia, fatigue, anxiety, and worse feeling of well-being. An ESAS-D score of ≥3 is likely to identify most of the ACP with significant CRD.

When patients feel spiritually supported by staff, we find increased use of hospice and reduced use of aggressive treatments at end of life, yet substantial barriers to staff spiritual care provision still exist. We aimed to study these barriers in a new cultural context and analyzed a new subgroup with “unrealized potential” for improved spiritual care provision: those who are positively inclined toward spiritual care yet do not themselves provide it.

We distributed the Religion and Spirituality in Cancer Care Study via the Middle East Cancer Consortium to physicians and nurses caring for advanced cancer patients. Survey items included how often spiritual care should be provided, how often respondents themselves provide it, and perceived barriers to spiritual care provision.

We had 770 respondents (40% physicians, 60% nurses) from 14 Middle Eastern countries. The results showed that 82% of respondents think staff should provide spiritual care at least occasionally, but 44% provide spiritual care less often than they think they should. In multivariable analysis of respondents who valued spiritual care yet did not themselves provide it to their most recent patients, predictors included low personal sense of being spiritual (p < 0.001) and not having received training (p = 0.02; only 22% received training). How “developed” a country is negatively predicted spiritual care provision (p < 0.001). Self-perceived barriers were quite similar across cultures.

Despite relatively high levels of spiritual care provision, we see a gap between desirability and actual provision. Seeing oneself as not spiritual or only slightly spiritual is a key factor demonstrably associated with not providing spiritual care. Efforts to increase spiritual care provision should target those in favor of spiritual care provision, promoting training that helps participants consider their own spirituality and the role that it plays in their personal and professional lives.

The road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective.

This multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives.

Improvement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources.

To our knowledge, this is the first time that family caregivers’ perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.

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.

Qualitative research is pivotal in gaining understanding of individuals’ experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children.

A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.

We retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, “living beyond pain,” the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.

This meta-summary presents the “state of the art” of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.

Thiamine deficiency (TD) is recognized in various kinds of disease with associated loss of appetite including cancer. However, it has not been recognized to date in bereaved partners after spousal loss from cancer.

From a series of bereaved partners who lost a spouse to cancer, we report on those who developed TD after bereavement.

Case 1 was a 57-year-old woman who sought consultation at our “bereavement clinic.” Her husband had been diagnosed with pancreatic cancer one year earlier and had died one month previously. At the first visit, she was observed to suffer depression, anxiety, and decreased appetite. Neurological, blood, and biochemical examinations did not reveal any noteworthy findings. She was diagnosed with uncomplicated bereavement. Detailed examination revealed that her appetite had been markedly decreased for approximately five weeks. The diagnosis of TD was supported by her abnormally low serum thiamine level. Case 2 was a bereaved 73-year-old male who had lost his wife to hypopharyngeal cancer one month previously after a five-year illness. He had shown a lack of energy for the month preceding his wife's death, but because there was no improvement after her death, his family recommended he seek consultation at our “bereavement clinic.” He was suffering from major depressive disorder. Detailed examination revealed that his appetite had been decreased for more than two weeks. Again, the diagnosis of TD was supported by his abnormally low serum thiamine level.

These reports demonstrate that there is a possibility that bereaved could develop TD after the loss of a loved one. TD should be considered whenever there is a loss of appetite lasting for more than 2 weeks, and medical staff should pay careful attention to the physical condition of the bereaved to prevent complications because of TD.

Demoralization is an existential distress syndrome that consists of an incapacity of coping, helplessness, hopelessness, loss of meaning and purpose, and impaired self-esteem. It can affect cancer patients, and the Demoralization Scale is a valid instrument to assess it. The present study aimed to investigate the prevalence of demoralization in end-of-life cancer patients and its associations with the medical and psychosocial variables. In addition, the latent dimensions of demoralization emerging in this distinctive population were explored.

The study is cross-sectional. The sample consisted of 235 end-of-life cancer patients with a Karnofsky performance status (KPS) lower than 50 and a life expectancy of a few weeks. For each patient, personal and medical data was gathered by a palliative physician and a set of validated rating scales, assessing demoralization, anxiety, depression, physical symptoms, pain, spiritual well-being, and dignity, was administered by a psychologist during the first consultation.

Sixty-four participants (27.2%) had low demoralization, 50.2% (n = 118) had medium demoralization, and 22.6% (n = 53) had high demoralization. Factor analysis evidenced a five-factor solution that identified the following demoralization factors: Emotional Distress and Inability to Cope, Loss of Purpose and Meaning, Worthlessness, Sense of Failure, and Dysphoria. All the considered variables were associated with demoralization, except for pain, nausea, breathing problems, and sociodemographic and clinical variables.

End-of-life cancer patients showed higher levels of demoralization than has been reported in other studies with advanced cancer. These data could suggest that demoralization could increase in proximity to death and with impaired clinical condition. In particular, the five demoralization dimensions that emerged could represent the typical concerns around which the syndrome evolves in end-of-life cancer patients. Finally, spiritual well-being could play a protective role with respect to demoralization.

The purpose of this study is to explore symptoms and the effectiveness of their management in older adult palliative care candidates in Lebanon. The aims of this study were to: (1) determine symptom prevalence in Lebanese older adults who qualify for palliative care; (2) identify the severity and distress of symptoms; (3) identify the prevalence of symptom management and its efficacy; and (4) explore the relationship between overall symptom burden and its correlates.

This study uses an observational cross-sectional design using convenience sampling (N = 203) to recruit older adults qualifying for palliative care from three major medical centers in Lebanon.

The mean age of the sample was 78.61 years. The most prevalent symptoms were lack of energy (93.5%), worrying (83.2%), and pain (71.4%). Psychological symptoms had the highest mean scores, preceded only by the physical symptoms and lack of energy. The most treated symptoms were physical with pain having the highest treatment prevalence (91%). Although psychological symptoms were the most burdensome, they were poorly treated. Multiple regression analysis showed that symptom scores had significant positive associations with financial status, social functioning, and comorbidities; there was a negative association with age.

Lack of energy and psychological symptoms were the most prevalent, with the latter having the highest mean total symptom scores. Treatment was poor for psychological symptoms and effective for physical ones. Associations were found between age, comorbidity, financial problems, social functioning, and total physical and psychological mean symptom burden scores. More attention needs to be given to psychological symptoms and their management among older adults receiving palliative care.

To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and to identify gaps to improve ACP receptivity, utilization, implementation, and outcomes.

Cochrane methodology for conducting overviews of systematic reviews. Study quality was assessed using a modified version of the Assessing the Methodological Quality of Systematic Reviews tool. The following databases were searched from inception to April 2017: MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE. Searches were supplemented with gray literature and manual searches.

Eighty systematic reviews, covering 1,662 single articles, show that ACP-related research focuses on nine main topics: (1) ACP as part of end-of-life or palliative care interventions, (2) care decision-making; (3) communication strategies; (4) factors influencing ACP implementation; (5) ACP for specific patient groups, (6) ACP effectiveness; (7) ACP experiences; (8) ACP cost; and (9) ACP outcome measures. The majority of this research was published since 2014, its quality ranges from moderate to low, and reports on documentation, concordance, preferences, and resource utilization outcomes.

Despite the surge of ACP research, there are major knowledge gaps about ACP initiation, timeliness, optimal content, and impact because of the low quality and fragmentation of the available evidence. Research has mostly focused on discrete aspects within ACP instead of using a holistic evaluative approach that takes into account its intricate working mechanisms, the effects of systems and contexts, and the impacts on multilevel stakeholders. Higher quality studies and innovative interventions are needed to develop effective ACP programs and address research gaps.

Wernicke encephalopathy (WE) is a neuropsychiatric disorder caused by thiamine deficiency. It is recognized in various stages of the cancer trajectory but has not previously been recognized during nivolumab treatment.

From a series of WE patients with cancer, we report a lung cancer patient who developed WE during treatment with nivolumab.

A 78-year-old woman with lung cancer was referred to our psycho-oncology clinic because of depressed mood. Psychiatric examination revealed disorientation to time, date, and place, which had not been recognized 1 month previously. Her symptoms fulfilled the diagnostic criteria for delirium. No laboratory findings or drugs explaining her delirium were identified. WE was suspected as she experienced a loss of appetite lasting 4 weeks. This diagnosis was supported by abnormal serum thiamine and the disappearance of delirium after intravenous thiamine administration.

We found WE in an advanced lung cancer patient receiving treatment with nivolumab. Further study revealed the association between nivolumab and thiamine deficiency. Oncologists should consider thiamine deficiency when a patient experiences a loss of appetite of more than 2 weeks regardless of the presence or absence of delirium.

Medical decisions in the context of advanced cancer are more based on patient values and preferences than during the early stages of the disease. The implementation of shared decision-making is particularly important with an oncology palliative care population. However, few decision support tools focus on this population. This literature review aims to identify decision support tools related to palliative care for an oncological population and to assess their quality using International Patient Decision Aids Standards criteria.

The tools were identified through PsycINFO, EMBASE, MEDLINE, and CINAHL databases; the inventory of tools to assist the decisions of the Ottawa Hospital Research Institute; and through the register of Cochrane trials. They were then evaluated using the third version of the International Patient Decision Aids Standards instrument.

Sixteen tools were identified, which targeted five types of cancer and addressed a particular decision or the use of chemotherapy in addition to palliative care. The quality of the reviewed tools varies.

Clinicians can use four decision support tools related to palliative care with an oncology population that meet a certain quality standard. Further studies are needed to develop new decision support tools targeting more types of cancer and decisions.