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.

Culture helps us grapple with, understand, and navigate the dying process. Although often overlooked, cultural values play a critical and influential role in palliative care. The purpose of the present study was two-fold: one, to review whether Latino/a cultural values have been integrated into the palliative care literature for Latinos/as; two, identify publications that provide recommendations on how palliative care providers can integrate Latino/a cultural values into the end-of-life care.

A comprehensive systematic review on the area of Latino/a cultural values in palliative care was conducted via an electronic literature search of publications between 1930–2013. Five articles were identified for reviewing, discussing, or mentioning Latino/a cultural values and palliative care.

Only one article specifically addressed Latino/a cultural values in palliative care. The four remaining articles discuss or mention cultural values; however, the cultural values were not the main focus of each article's thesis.

The results of the current study highlight the lack of literature specifically addressing the importance of integrating Latino/a cultural values into the delivery of palliative care. As a result, this article introduces the Culture-Centered Palliative Care Model (CCPC). The article defines five key traditional Latino/a cultural values (i.e., familismo, personalismo, respeto, confianza, and dignidad), discusses the influence of each value on palliative health care, and ends with practical recommendations for service providers. Special attention is given to the stages of acculturation and ethnic identity.

Little is known about the effectiveness of advance care planning in the United Kingdom, although policy documents recommend that it should be available to all those with life-limiting illness.

An exploratory patient preference randomized controlled trial of advance care planning discussions with an independent mediator (maximum three sessions) was conducted in London outpatient oncology clinics and a nearby hospice. Seventy-seven patients (mean age 62 years, 39 male) with various forms of recurrent progressive cancer participated, and 68 (88%) completed follow-up at 8 weeks. Patients completed visual analogue scales assessing perceived ability to discuss end-of-life planning with healthcare professionals or family and friends (primary outcome), happiness with the level of communication, and satisfaction with care, as well as a standardized measure of anxiety and depression.

Thirty-eight patients (51%) showed preference for the intervention. Discussions with professionals or family and friends about the future increased in the intervention arms, whether randomized or preference, but happiness with communication was unchanged or worse, and satisfaction with services decreased. Trial participation did not cause significant anxiety or depression and attrition was low.

A randomized trial of advance care planning is possible. This study provides new evidence on its acceptability and effectiveness for patients with advanced cancer.

Palliative care training at basic, intermediate, and specialist levels, recommended by the World Health Organization (WHO), is challenging to access in resource-poor countries and regions. Providing support in this regard would seem a moral imperative for all countries with established palliative care education systems and a strong resource base. In collaboration with WHO European Office and European Association for Palliative Care, this paper looks into the educational requirements in palliative care at postgraduate level within Europe.

A survey was specifically designed to gather opinions and comments on elements of palliative care education from European experts. Participants were invited to assess the European Association for Palliative Care core competencies on a five-item scale and to define essential learning goals. Survey data were statistically analyzed using IBM SPSS Statistics Software. Qualitative data were thematically analyzed.

A total of 195 data sets were recorded; 82 were completed fully. The statistical analysis revealed a high agreement regarding the key elements of palliative care education. The thematic analysis indicated that at postgraduate level all healthcare providers need to (1) comprehend the palliative care philosophy, (2) be able to demonstrate the complex symptom assessment and management competencies, (3) be able to design care plans based on patients and families wishes integrating multiprofessional and interdisciplinary approaches, and (4) be able to listen and self-reflect.

According to the WHO, inadequate skills and capacities of healthcare workers are one of the four barriers hindering the access to palliative care. This paper contains a new and comprehensive list of learning goals essential for multidisciplinary postgraduate palliative care education. Besides highlighting the relevant competencies, the article provides best-practice toolboxes with teaching and assessment methods. The article comments on the WHO's palliative care definition and underpins the importance of the role of the education in knowledge development and skills acquisition.

In many studies, everyday life has been shown to be of great significance in the context of life-threatening cancer. The aim of this study was to investigate how people with cancer who are receiving palliative care engage in and undertake activities in their everyday lives.

This is a qualitative interview study adopting a grounded theory approach. The sample was composed of participants receiving services from palliative hospital-based home care and day care services. A total of 47 individuals were interviewed.

Despite experiencing the threat of progressive loss of functioning, the participants were striving to remain involved in and to be active in everyday life. Continued involvement in everyday life with lowered expectations concerning performance gave the participants the possibility to continue doing daily activities as well as to perform new and engaging activities that were a source of pleasure and enabled the patients to feel a sense of competence.

This study has demonstrated the power of being involved in everyday life activities. The proposed model, explaining individuals' desire to continue to live an active life despite a progressive loss of functioning, can provide a model to help the reasoning of professionals when supporting patients in their everyday life.

The objective of this study was to explore health care staff's opinions about what existential issues are important to patients with cancer and staff's responsibility when existential issues are raised by patients.

Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff's opinions about patients' important existential questions and, second, about health care staff's responsibility when existential issues are raised by the patient. The interviews were taperecorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories.

Four categories and 11 subcategories emerged from the first question. The first category, “life and death,” was based on joy of living and thoughts of dying. The second category “meaning,” consisted of acceptance, reevaluation, hope, and faith. The third category, “freedom of choice,” consisted of responsibility and integrity, and the fourth and last category, “relationships and solitude,” consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff's responsibility, “to achieve an encounter,” which was based on the subcategories time and space, attitudes, and invitation and confirmation.

One strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.

Art therapy has been shown to be helpful to cancer patients at different stages in the course of their illness, especially during isolation for bone marrow transplantation, during radiotherapy treatment, and after treatment. The aim of this study is twofold: (1) to assess whether patients during chemotherapy sessions perceive art therapy as helpful and (2) to outline in which way art therapy is perceived as helpful.

157 cancer patients attending an Oncology Day Hospital (Siena, Italy) met the art therapist during their chemotherapy sessions. The art therapist used the same art therapy technique with each patient during the first encounter (“free collage”); afterward the relationship would evolve in different ways according to the patients' needs. A psychologist interviewed a randomized group of 54 patients after the chemotherapy treatment using a semistructured questionnaire.

Out of the 54 patients, 3 found art therapy “not helpful” (“childish,” “just a chat,” “not interesting”). The other 51 patients described their art therapy experience as “helpful.” From patients' statements, three main groups emerged: (1) art therapy was perceived as generally helpful (e.g., “relaxing,” “creative”; 37.3%), (2) art therapy was perceived as helpful because of the dyadic relationship (e.g., “talking about oneself and feeling listened to”; 33.3%), and (3) art therapy was perceived as helpful because of the triadic relationship, patient–image–art therapist (e.g., “expressing emotions and searching for meanings”; 29.4%).

These data have clinical implications, as they show that art therapy may be useful to support patients during the stressful time of chemotherapy treatment. Different patients use it to fulfil their own different needs, whether it is a need to relax (improved mood) or to talk (self-narrative) or to visually express and elaborate emotions (discovering new meanings). Some illustrations of patients using the art therapy process to fulfill these three different needs are provided.

The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.

Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.

The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.

Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.

The current literature on caregiving and bereavement indicates that the relationship between these two common life events is complex and needs to be further studied in order to gain a more comprehensive understanding of their interaction.

In the current project, 50 spouses of hospice patients with end-stage lung cancer or dementia were assessed while caregiving and at an average of 4 months after the death on a variety of measures, including caregiving stressors, appraisals, social resources, and well-being. A stress process model was utilized in order to examine which preloss factors were associated with postloss depression, life satisfaction, and grief.

Our results indicated that patient diagnosis (cancer or dementia) and caregiver appraisals (stressfulness of functional impairment and positive aspects of caregiving) were not predictors on any of our well-being outcomes. However, fewer months caregiving was a significant predictor of both higher depression and grief postloss. Additionally, lower levels of social activities, smaller social networks, and lower satisfaction with social support were significantly associated with higher postloss depression.

Results support both the resource depletion and anticipatory grief hypotheses and suggest that short-term bereavement outcomes are different than factors that predict well-being while caregiving. Future studies should address whether long-term bereavement outcomes differ by baseline caregiving characteristics to guide intervention research.

Providing care to a loved one with cancer places demands on caregivers that result in changes to their daily routines and disruptions to their social relationships that then contribute to loneliness. Though caregivers’ psychosocial challenges have been well studied, loneliness — a determinant of health — has not been well studied in this population. This narrative review sought to describe the current evidence on loneliness among caregivers of cancer patients. We aimed to (1) define loneliness, (2) describe its prevalence, (3) describe the association between loneliness and health outcomes, (4) describe risks and consequences of loneliness among cancer caregivers, (5) identify ways to assess loneliness, and (6) recommend strategies to mitigate loneliness in this unique population.

We used evidence from articles listed in PubMed, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases, book chapters, and reports. Articles were reviewed for the following inclusion criteria: (1) published in English, (2) caregivers of cancer patients, (3) loneliness as a study variable, and (4) peer-reviewed with no restriction on the timeframe of publication. Caregivers were defined as relatives, friends, or partners who provide most of the care and support for someone with cancer.

Eighteen studies met inclusion criteria and were included in the analysis. Caregivers’ experiences of loneliness can contribute to negative effects on one's social, emotional, and physical well-being. Social support interventions may not be sufficient to address this problem. Existing recommendations to mitigate loneliness include cognitive and psychological reframing, one-on-one and group therapy, befriending, resilience training, and technology-based interventions.

Limited attention to loneliness in cancer caregivers poses a twofold problem that impacts patient and caregiver outcomes. Interventions are critically needed to address loneliness as a determinant of health in caregivers, given their pivotal role in providing care and impacting health outcomes for people with cancer.

People with severe persistent mental illness (SPMI) experience a greater burden and severity of chronic disease, late diagnosis, and premature death compared with the general population. Those with SPMI also receive fewer medical treatments, poor quality of care, and are less likely to receive palliative care. A systematic scoping review was undertaken to determine the extent, range, and nature of research activity about people with SPMI requiring palliative care, and to identify gaps and opportunities for future research.

A systematic scoping review was undertaken in September 2017 and updated in May 2018 to map literature on this topic, determine the extent and range of what has been published, and report the findings. This five-stage framework was conducted by (1) identifying the research question; (2) identifying relevant studies; (3) determining study selection; (4) charting the data; and 5) collating, summarizing, and reporting the results. A narrative approach to analysis was used to synthesize and interpret findings. A search of multidisciplinary healthcare databases resulted in 46 included articles.

Four major themes were identified from the included studies: complexity of care; limited access to care (both through systems and healthcare providers); competence and autonomy; and the potential for relationships between mental health and palliative care.

This review reveals a highly vulnerable population with complex needs that are not reliably being met by the healthcare system and providers. Research in this area must continue to develop using rigorous qualitative and quantitative study designs, and interventions should be developed and tested based on existing knowledge to inform care. The voices of people with SPMI in need of palliative care must be represented in future studies to address gaps. To expand a body of literature addressing mainly individuals, system perspectives and sociocultural analysis can bring much to contextualizing the experience of living with SPMI in the palliative phase of care. Adoption of a palliative approach, which promotes the principles of palliative care across nonspecialized care settings provided by nonspecialist palliative providers, has the potential to increase access to high-quality palliative treatment for people with SPMI.

Self-reported health-related quality of life (HRQoL) is an important predictor of survival alongside clinical variables and physicians' prediction. This study assessed whether better prediction is achieved using generic (SF-36) HRQoL measures or cancer-specific (EORTC QLQ-C30) measures that include symptoms.

Fifty-four lung and 46 colorectal patients comprised the sample. Ninety-four died before study conclusion. EORTC QLQ-C30 and SF-36 scores and demographic and clinical information were collected at baseline. Follow-up was 5 years. Deaths were flagged by the Office of National Statistics. Cox regression survival analyses were conducted. Surviving cases were censored in the analysis.

Univariate analyses showed that survival was significantly associated with better EORTC QLQ-C30 physical functioning, role functioning, and global health and less dyspnea and appetite loss. For the SF-36, survival was significantly associated with better emotional role functioning, general health, energy/vitality, and social functioning. The SF-36 summary score for mental health was significantly related to better survival, whereas the SF-36 summary score for physical health was not. In the multivariate analysis, only the SF-36 mental health summary score remained an independent, significant predictor, mainly due to considerable intercorrelations between HRQoL scales. However, models combining the SF-36 mental health summary score with diagnosis explained a similar amount of variance (12%–13%) as models combining diagnosis with single scale SF-36 Energy/Vitality or EORTC QLQ-C30 Appetite Loss.

HRQoL contributes significantly to prediction of survival. Generic measures are at least as useful as disease-specific measures including symptoms. Intercorrelations between HRQoL variables and between HRQoL and clinical variables makes it difficult to identify prime predictors. We need to identify variables that are as independent of each other as possible to maximize predictive power and produce more consistent results.

Most palliative care efforts focus on assessing and improving the quality of life and quality of care for patients. Palliative care views the family as the unit of care; therefore, excellent comprehensive palliative care should also address the needs of the family and the caregiver(s). While the recent literature has offered detailed descriptions of caregiving needs in the home setting, it is crucial to describe the needs of family members who provide care for patients with advanced illness in an inpatient setting, where family members serve as the key intermediaries and decision makers. Therefore, we sought to define the relevant aspects of quality of experience for families of hospitalized patients.

We convened a series of focus groups to identify the domains important for the quality of experience of dying patients' family members. Participants included bereaved family members of patients who had died at a Veterans Administration (VA) or private academic medical center. We conducted four in-depth follow-up interviews to probe for additional details and validate our interpretation of the focus group findings.

Participants (n = 14) ranged in age from 46 to 83, with a mean of 62. All were female; 64% were Caucasian, 21% African American, and 14% did not report their ethnicity. Content analysis yielded 64 attributes of quality of family experience constituting eight domains: completion, symptom impact, decision making, preparation, relationship with healthcare providers, affirmation of the whole person, post-death care, and supportive services.

Our data have implications for clinical guidance in assisting family members in the inpatient palliative setting, which often includes patient incapacity for communication and decision making. They suggest the importance of developing corresponding methods to assist families with the tasks involved with life completion, being prepared for a crisis and imminent death, and post-death care. Provider communications and relationships are central to the processes of meeting the clinical needs of family members. Our findings should inform the development of measures to assess family experience.