The purpose of this study was to understand oncology clinicians' perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model.

This was a qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT.

Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: (1) treating the whole patient, (2) focusing on quality versus quantity of life, (3) “some patients just want to fight,” and (4) helping with transitions; timing is everything. Five themes comprised oncologists' views on the complementary role of palliative care: (1) “refer early and often,” (2) referral challenges: “Palliative” equals “hospice”; “Heme patients are different,” (3) palliative care as consultants or co-managers, (4) palliative care “shares the load,” and (5) ENABLE II facilitated palliative care integration.

Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care.

The aim of our study was to explore the impact of gender and hematological cancer grade on distress, anxiety, and depression in patients receiving chemotherapy.

A prospective study was done in a cohort of 104 patients with hematological cancer. We employed the (1) Distress Thermometer (DT) and the Problem List (PL) and (2) the Hospital Anxiety and Depression Scale (HADS) for assessments at baseline (T1), the halfway timepoint (T2), and completion of chemotherapy (T3).

The proportion of patients experiencing significant distress (DT ≥ 4) decreased from the first to the last timepoint; the proportion experiencing anxiety and depression (as assessed by HADS) also decreased. Specifically, 50% of participants reported significant distress levels, 47.1% anxiety, and 26% depression at T1. At T2, the proportion of patients experiencing distress was reduced by 60.8%, by 76% for anxiety, and by 48.5% for depression; at T3, the reduction was close to 80% for all assessments compared with T1. Emotional and physical problems were most commonly reported. Significant reductions were discovered for distress and problem-related distress levels over time, and a significant interaction was found between gender and practical and physical problems (p < 0.05).

Our findings suggest that female patients reported more distress, anxiety, and depression than male patients. Gender differences were related to problem-related distress but not to grade of neoplasm. We observed that, over the course of chemotherapy, the distress levels of patients with hematological cancer decrease over time.

Sleep disturbances are a common issue for those who provide informal care to someone with a life-limiting condition. The negative consequences of poor sleep are well documented. The purpose of the present study was to determine the sleep patterns of caregivers of patients with advanced cancer.

An extensive systematic review of studies reporting empirical sleep data was undertaken in 2015 in accordance with the PRISMA Statement. A total of eight electronic databases were searched, with no date restrictions imposed. Additionally, a search of the bibliographies of the studies identified during the electronic search was conducted. Search terms included: “sleep,” “insomnia,” “sleep disturbance,” “circadian rhythm,” “caregiver,” “carer,” “advanced cancer,” “palliative cancer,” and MESH suggestions. The inclusion criteria required studies to be in English and to report primary qualitative and/or quantitative research that examined sleep in caregivers of patients with advanced cancer. Unpublished studies, conference papers, and dissertations were excluded.

Overall, 10 studies met the inclusion criteria and were included in the review. Two major findings emerged from the data synthesis. First, at least 72% of caregivers reported moderate to severe sleep disturbance as measured by the Pittsburgh Sleep Quality Index. Second, objective measurement of caregivers' sleep identified that some caregivers experienced up to a 44% reduction in their total sleep time compared to the recommended eight hours.

Reduction in total sleep time appears to be the biggest issue facing caregivers' sleep. Future studies need to explore the specific factors that cause these sleep disturbances and thus help to identify interventions to optimize sleep.

A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.

A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.

Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.

Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

Family members who take on the role of caregiving for someone who is dying begin bereavement after being emotionally and physically taxed by the caregiving experience. The course of bereavement is influenced by a number of factors, including health problems, financial concerns, social support, and family relationships. This paper reports on findings from a secondary analysis of qualitative data from a study examining family caregiver coping in end-of-life cancer care, to describe, from the perspectives of bereaved family caregivers, their perspectives on what made their grief difficult.

Qualitative data from three focus groups with family caregivers (n = 19) and two focus groups with health professionals (n = 14) were subjected to interpretive thematic analysis.

Our finding suggest three broad areas that make family caregivers' grief difficult: (1) dealing with occurrences in everyday life; (2) dealing with challenges specific to the caregiving situation; and (3) dealing with the healthcare system.

The findings provide an important beginning point in understanding the types of issues that seem to make grief difficult for family caregivers of cancer patients at the end of life and can help professional groups to understand what is needed by family caregivers in terms of support and delivery of services.

Although palliative care is critical to managing symptoms, pain, and transitions to end-of-life care among those facing serious or chronic illness, it is often underused, which may be due to stigma associated with palliative care representing giving up fighting one's illness. The goal of the present studies was to test the theoretical framework of stigma within the context of palliative care to inform future work on intervention development that addresses potential barriers to palliative care utilization.

In study 1, participants (n = 152) had an oncologist describe two treatment options to a terminally ill cancer patient: (1) palliative care and (2) chemotherapy. Participants were then randomly assigned to read that the patient chose palliative care or chemotherapy. In study 2, these stereotypes about those receiving palliative care were examined as a potential mediator between perceived palliative care stigma and prospective palliative care use. Participants (n = 199) completed self-report measures of palliative care stigma, negative stereotypes about palliative care users, and prospective use of palliative care. Mediation analysis tested the mediational effects of stereotypes on the relationship between palliative care stigma and prospective usage of palliative care.

In study 1, those in the palliative care condition endorsed significantly higher levels of negative stereotypes about the patient, viewed the decision more negatively, and saw the patient as less afraid of death. In study 2, palliative care stigma was associated with less prospective usage of palliative care for self and for one's family member. This relationship was mediated by negative stereotypes about individuals receiving palliative care.

Results suggest that palliative care stigma exists (study 1) and that this stigma may be a barrier to the utilization of palliative care (study 2). Future research should examine stigma reduction as a potential intervention target to improve palliative care utilization.

This study aimed to describe knowledge of an advance directive (AD) and preferences regarding end-of-life (EoL) care communication, decision making, and designation of surrogates in Chinese-American elders and to examine the role of acculturation variables in AD awareness.

Survey data were collected through face-to-face interviews on a sample of 385 Chinese-American elders aged 55 or above living in the Phoenix metropolitan area. The choice of language (Mandarin, Cantonese, or English) and place of interview (senior apartments, Chinese senior centers, or homes) was at the respondent's preference. Hierarchical logistic regression analysis was employed to examine the influence of acculturation variables on AD awareness.

Some 21% of participants had heard about ADs, and only 10% had completed one. Elders with higher acculturation levels (OR = 1.04, p < 0.10) and those residing more than 20 years in the United States (OR = 6.87, p < 0.01) were more likely to be aware of ADs after controlling for the effects of demographics, health, and experiences of EoL care. The majority preferred physicians to initiate AD discussions (84.9%) and identified burdens on families as the most important factor in making EoL decisions (89.3%). About 55.1 % considered daughters as the preferred healthcare surrogate.

Acculturation levels influence awareness of an AD, and family values are crucial in EoL care decision making. Cultural factors should be considered in designing and delivering appropriate programs to promote knowledge of EoL care among Chinese-American elders and their families.

Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes.

Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics.

The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place.

There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.

When providing care for a loved one with a terminal illness, family members often look to health care providers for guidance and expertise. The objective of this study is to explore family caregiver accounts of their experiences within the health care system and with individual providers.

A thematic analysis of secondary qualitative data was performed. Data are from a subsample of bereaved and current family caregivers (N = 31) in a prior study of coping in end-of-life cancer situations. Data from these participants referring to experiences with health care providers was thematically coded and the concept of “security” was used as an analytic lens to facilitate conceptual development and exploration.

Considered together, the findings can be viewed as manifestations of a need and desire for security in palliative family caregiving. Specifically, family caregivers' accounts illustrate the importance of feeling secure that health care services will be provided by competent professionals; feeling secure in their timely access to needed care, services, and information; and feeling secure in their own identity and self-worth as a caregiver and individual. In addition, the findings suggest a conceptualization of security that extends beyond trust in individuals to include a generalized sense of institutional trust in the health care system.

The concept of security moves beyond description of individual satisfaction or dissatisfaction with health care to identify a common, foundational need underlying such evaluations. Further empirical research is needed that explicitly focuses on caregivers' experiences of security and insecurity in the domains identified in this article. This will contribute to theory building as well as assist in identifying the causes and consequences of security.

The burden experienced by informal caregivers (ICs) of patients with advanced cancer is well documented. ICs are at risk for anxiety and depression, as well as existential concerns that arise when a loved one is facing a terminal illness. Few psychosocial interventions focus on existential concerns of ICs. However, a growing body of literature indicates that finding meaning in the experience of being an IC for a person with cancer has the potential to buffer against burden. The purpose of this study was to collect preliminary descriptive data regarding caregiver burden, meaning, and psychosocial service use to inform the adaptation of a meaning-centered intervention for ICs.

Twenty-five caregivers and 32 patients completed brief, anonymous questionnaires that asked about their role as a caregiver or their perception of their loved one as a caregiver, caregiver burden, and psychosocial service use.

Caregivers and patients identified anxiety and depression as top correlates of burden experienced by caregivers, whereas guilt, issues with role/sense of identity, and self-care were additional areas of concern. The majority of caregivers were not receiving psychosocial services, although they almost unanimously reported desiring services. A greater proportion of patients than caregivers believed that an intervention designed to enhance meaning would ameliorate burden, but, nevertheless, close to three quarters of caregivers reported interest in participating in such an intervention.

These study findings provide further support for, at a minimum, engaging ICs of persons with advanced cancer in interventions that address existential issues, mental health, self-care, and service use. Such interventions are likely to improve the quality of life of both patients with cancer and their ICs.

The purpose of this study was to examine the efficacy and safety of aripiprazole in the treatment of delirium in hospitalized cancer patients, and to examine differential responses based on delirium subtypes.

We conducted an analysis of 21 hospitalized cancer patients at Memorial Sloan-Kettering Cancer Center (MSKCC) who had been evaluated and treated for delirium with aripiprazole, using an MSKCC Institutional Review Board (IRB) approved Clinical Delirium Database. Measures used were the Memorial Delirium Assessment Scale (MDAS), the Karnofsky Scale of Performance Status (KPS), and side effect rating at baseline (T1), 2–3 days (T2), and 4–7 days (T3). All measurements were integrated into the routine clinical care of patients. Doses of aripiprazole were adjusted based on clinical response.

Patients treated for delirium with aripiprazole experienced significant improvement and resolution of delirium, with MDAS scores declining from a mean of 18.0 at baseline (T1) to mean of 10.8 at T2 and a mean of 8.3 at T3. KPS scores improved from 28.1 at baseline (T1) to 35.2 at T2 and 41 at T3. Delirium resolved (based on MDAS < 10) in 52.4% of cases at T2 and in 76.2% at T3. The mean dosage of aripiprazole required was 18.3 mg (range of 5–30) daily at T3. In our cohort of patients with hypoactive delirium, we observed a delirium resolution rate of 100% compared to the cohort of patients with hyperactive delirium (58.3% rate of delirium resolution). MDAS scores improved from 15.6 at T1 to 5.7 at T3 in hypoactive delirium and from 19.9 at T1 to 10.2 at T3 in hyperactive delirium. In patients with pre-morbid cognitive deficits and the hyperactive subtype of delirium, we observed a more limited treatment response to aripiprazole treatment for delirium. There were no clinically significant side effects noted.

Aripiprazole is effective and safe in the treatment of delirium in hospitalized cancer patients. These preliminary finding suggest that aripiprazole may be most effective in resolving delirium of the hypoactive subtype.

An important goal of cancer medicine is relief of patients' suffering. In view of the clinical challenges of identifying suffering patients, we sought to identify valid instruments for assessing the spiritual suffering of people diagnosed with cancer.

A systematic review of the literature was conducted in the Medline, Embase, the Cochrane Library, and PsycINFO databases seeking assessment instruments that measure either suffering or one of its synonyms or symptoms. The psychometric properties of the identified measures were compared.

A total of 90 articles were identified that supplied information about 58 measures. The constructs examined were: suffering, hopelessness/demoralization, hope, meaning, spiritual well-being, quality of life where a spiritual/existential dimension was included, distress in the palliative care setting and pain, distress or struggle of a spiritual nature. The Pictorial Representation of Illness and Self Measure (PRISM) (patient completed) was the most promising measure identified for measuring the burden of suffering caused by illness due to its ease of use and the inclusion of a subjective component.

Although the appropriateness of any measure for the assessment of spiritual suffering in cancer patients will depend on the context in which it is intended to be utilized, the PRISM is promising for measuring the burden of suffering due to illness.

Research on the experiences, coping mechanisms, and impact of death and dying on the lives of palliative medicine specialists is limited. Most research focuses on the multidisciplinary team or on nurses who work with the dying. Fewer studies consider medical professionals trained in palliative medicine. This study aimed to explore the experiences, coping mechanisms, and impact of death and dying on palliative medicine specialists when dealing with their patients at the end of life.

A qualitative research approach guided the study, one-on-one interview data were analyzed thematically. A purposeful sampling technique was employed for participant recruitment. Seven palliative medicine specialists practicing in one city participated in open-ended, in-depth interviews.

The analysis of participants' accounts identified three distinct themes. These were Being with the dying, Being affected by death, and dying and Adjusting to the impact of death and dying.

This study further contributes to the understanding of the impact of death and dying on professionals who care for dying patients and their families. Despite the stressors and the potential for burnout and compassion fatigue, these participants employed strategies that enhanced meaning-making and emphasized the rewards of their work. However, the consequences of work stressors cannot be underestimated in the practice of palliative care.

This study was conducted for the purpose of adapting the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale (FACIT–Sp) for the Turkish context and determining its validity and reliability.

In 2016, a convenience sample of 137 cancer patients from Malatya State Hospital completed a structured questionnaire, which provided demographic characteristics, and the FACIT–Sp–12 for patients with cancer. The obtained data were assessed using Cronbach's alpha reliability coefficient (α), Pearson's product-moment correlation coefficient (r), factor analysis, Bartlett's test of sphericity, and the Kaiser–Meyer–Olkin (KMO) measure of sampling adequacy.

The result of the KMO test was determined to be 0.827 and that of Bartlett's test 988.692, and both were observed to be significant at a level of p < 0.001. The value of Cronbach's α for the Spiritual Well-Being Scale (SWBS) was determined to be 0.87, and the α values for the SWBS subgroups ranged from 0.78 to 0.93. Our analysis determined that the factors had initial eigenvalues above 1, and that they accounted for 61.61% of the total variance.

Our study determined that the Turkish version of the FACIT–Sp has validity and reliability and can be used in Turkish society. We believe that the scale can be used safely in determining convenient care and in planning individual educational programs to enhance patients' spiritual well-being.

We aimed to explore multiple perspectives regarding barriers to and facilitators of advance care planning (ACP) among African Americans to identify similarities or differences that might have clinical implications.

Qualitative study with health disparities experts (n = 5), community members (n = 9), and seriously ill African American patients and caregivers (n = 11). Using template analysis, interviews were coded to identify intrapersonal, interpersonal, and systems-level themes in accordance with a social ecological framework.

Participants identified seven primary factors that influence ACP for African Americans: religion and spirituality; trust and mistrust; family relationships and experiences; patient-clinician relationships; prognostic communication, care preferences, and preparation and control. These influences echo those described in the existing literature; however, our data highlight consistent differences by group in the degree to which these factors positively or negatively affect ACP. Expert participants reinforced common themes from the literature, for example, that African Americans were not interested in prognostic information because of mistrust and religion. Seriously ill patients were more likely to express trust in their clinicians and to desire prognostic communication; they and community members expressed a desire to prepare for and control the end of life. Religious belief did not appear to negate these desires.

The literature on ACP in African Americans may not accurately reflect the experience of seriously ill African Americans. What are commonly understood as barriers to ACP may in fact not be. We propose reframing stereotypical barriers to ACP, such as religion and spirituality, or family, as cultural assets that should be engaged to enhance ACP. Although further research can inform best practices for engaging African American patients in ACP, findings suggest that respectful, rapport-building communication may facilitate ACP. Clinicians are encouraged to engage in early ACP using respectful and rapport building communication practices, including open-ended questions.

Research into parental loss has led to an understanding of the types of reactions and responses that children, and to a lesser extent adolescents and young adults, have when a parent dies. Only limited studies, however, have directly investigated the psychosocial needs of young people during this period. The aim of the current study was to identify and better understand the needs of adolescents and young adults who have lost a parent to cancer, and to ascertain the extent to which these needs had been met.

As the study is exploratory in nature, a qualitative questionnaire was used to explore the needs and unmet needs of adolescents and young adults who have had a parent die of cancer. Sixty-two parentally bereaved young people aged 12–23 participated.

The data were thematically analyzed and seven conceptually distinct need themes emerged, namely: support and understanding; help coping with feelings; to talk to people who have had a similar experience; information; have a break/have fun; space and time to grieve; and help with household responsibilities.

The research findings will assist health professionals in developing services and interventions which are more responsive to the needs of parentally bereaved young people.

The purpose of this study was to develop a reliable and valid scale that broadly measures knowledge about palliative care among non-healthcare professionals.

An initial item pool of 38 true/false questions was developed based on extensive qualitative and quantitative pilot research. The preliminary items were tested with a community sample of 614 adults aged 18–89 years as well as 30 palliative care professionals. The factor structure, reliability, stability, internal consistency, and validity of the 13-item Palliative Care Knowledge Scale (PaCKS) were assessed.

The results of our study indicate that the PaCKS meets or exceeds the standards for psychometric scale development.

Prior to this study, there were no psychometrically evaluated scales with which to assess knowledge of palliative care. Our study developed the PaCKS, which is valid for assessing knowledge about palliative services in the general population. With the successful development of this instrument, new research exploring how knowledge about palliative care influences access and utilization of the service is possible. Prior research in palliative care access and utilization has not assessed knowledge of palliative care, though many studies have suggested that knowledge deficits contribute to underutilization of these services. Creating a scale that measures knowledge about palliative care is a critical first step toward understanding and combating potential barriers to access and utilization of this life-improving service.

Age-based screening tools and assessment measures are crucial to the provision of best practice care for adolescent and young adult (AYA) cancer patients. Unfortunately, there are limited psychosocial tools developed for this age group and pediatric or adult measures are often distributed with the assumption that they are “close enough.” We describe a collaborative Australian project that strives to improve what currently exists for the psychosocial assessment of and planning for the 15–25-year-old age group.

Using the National Comprehensive Cancer Network's Distress Thermometer and the HEADSS Assessment as a foundation, the tools were developed in consultation with Australia's leading AYA clinicians, AYAs currently undergoing medical treatment, and a group of AYA survivors through a process of discussion groups and clinical interviews.

The result is the first available AYA-specific screening tool, care plan pro forma, and psychosocial assessment measure developed for use within the oncology sector. These new tools will assist clinicians working with this population group to support psychosocial coping during active treatment and promote healthy post-treatment survivorship.

Over time, further validation procedures will add to the veracity of the measures. Until then, these measures represent the best available in Australia. They highlight a clinically recognized minimum standard of care that all young cancer patients, regardless of treatment location, have the right to receive.