The aim of the present pilot study was to investigate insomnia, sleep quality, and daytime sleepiness in relatives of dying patients cared for at home.

The study has a descriptive, comparative, and cross-sectional design. The sample consisted of relatives of patients cared for through palliative home care in Uppsala County on 3 specific days. Relatives completed a questionnaire consisting of demographic questions, and items from the Insomnia Severity Index (ISI), the Epworth Sleepiness Scale (ESS), and the Richard Campell Sleep Questionnaire (RCSQ).

Seventy-five relatives answered the questionnaire. The average total ISI score was 9.6, with 23% reporting moderate or severe clinical insomnia. The mean sleep duration was 6.5 hours, the mean assessed need of sleep was 8 hours, and the mean discrepancy was 1 hour. The total mean ESS score was 5.6 and only 15% of respondents reported excessive daytime sleepiness. Four percent scored very poor sleep quality, whereas 39% scored very good sleep quality (RCSQ). Two general age- and gender-related patterns were observed. Negative correlations were found between age and sleep problems, with younger relatives reporting more insomnia problems and more daytime sleepiness than did older relatives. The other general pattern was that womens' sleep quality was significantly inferior to that of men. A significant positive correlation was found between ISI and ESS, but not between RCSQ and ESS.

The picture of the relatives' sleep condition is fairly complex. A minority reported clinical insomnia problems or excessive daytime sleepiness, and 73% reported getting less sleep than they wanted.

A scoping research literature review on “bad death” was undertaken to assess the overall state of the science on this topic and to determine what evidence exists on how often bad deaths occur, what contributes to or causes a bad death, and what the outcomes and consequences of bad deaths are.

A search for English-language research articles was conducted in late 2016, with 25 articles identified and all retained for examination, as is expected with scoping reviews.

Only 3 of the 25 articles provided incidence information, specifying that 7.8 to 23% of deaths were bad and that bad deaths were more likely to occur in hospitals than in community-care settings. Many different factors were associated with bad deaths, with unrelieved pain being the most commonly identified. Half of the studies provided information on the possible consequences or outcomes of bad deaths, such as palliative care not being initiated, interpersonal and team conflict, and long-lasting negative community effects.

This review identified a relatively small number of research articles that focused in whole or in part on bad deaths. Although the reasons why people consider a death to be bad may be highly individualized and yet also socioculturally based, unrelieved pain is a commonly held reason for bad deaths. Although bad and good deaths may have some opposing causative factors, this literature review revealed some salient bad death attributes, ones that could be avoided to prevent bad deaths from occurring. A routine assessment to allow planning so as to avoid bad deaths and enhance the probability of good deaths is suggested.

Cancer affects both patients and their caregivers. Caregiver burden may change during different stages of the patients' cancer trajectory. Limited research has focused on the impact of being a caregiver, assessed by the caregiver's mental health and quality of life (QOL) during the curative and the palliative phases of the patient's disease. The aim of this study is to compare caregivers of cancer patients during the curative and a palliative phases with respect to their mental health and health-related QOL.

This descriptive, cross-sectional study combines data from two studies. The first group consists of caregivers of patients with cancer in the late palliative phase and the second group consists of caregivers of outpatients with cancer who suffer from pain and/or use analgesics. Data were collected by means of standardized measures and analyzed with descriptive statistics.

Based on this material, no significant differences in mental health and health- related QOL were revealed for caregivers of cancer patients in the palliative and the curative phases, respectively. Neither education level in the caregivers, nor the patients' functional status influenced caregivers' mental health or QOL. Younger caregivers seem to have better physical QOL.

Being caregivers of cancer patients seems to have a similar pattern of impact on caregivers' mental health and quality of life regardless of the patient's disease stage. We share some reflections about the way in which the cancer stage is divided and the appropriateness of such selection for measuring caregivers' mental health and QOL. Additionally, we discuss the use of generic instruments for measuring specific contexts and particular samples.

Effective communication regarding death and dying in pediatrics is a vital component of any quality palliative care service. The goal of the current study is to understand communication among health care professionals regarding death and dying in children. The three hypotheses tested were: (1) hospital staff (physicians of all disciplines, nurses, and psychosocial clinicians) that utilize consultation services are more comfortable communicating about death and dying than those who do not use such services, (2) different disciplines of health care providers demonstrate varying levels of comfort communicating about a range of areas pertaining to death and dying, and (3) health care staff that have had some type of formal training in death and dying are more comfortable communicating about these issues.

A primary analysis of a survey conducted in a tertiary care teaching children's hospital.

Health care professionals who felt comfortable discussing options for end of life care with colleagues also felt more comfortable: initiating a discussion regarding a child's impending death with his/her family (r = 0.42), discussing options for terminal care with a family (r = 0.58), discussing death with families from a variety of ethnic/cultural backgrounds (r = 0.51), guiding parents in developmentally age-appropriate discussions of death with their children (r = 0.43), identifying and seeking advice from a professional role model regarding management concerns (r = 0.40), or interacting with a family following the death of a child (r = 0.51). Among all three disciplines, physicians were more likely to initiate discussions with regards to a child's impending death (F = 13.07; p = 0.007). Health care professionals that received formal grief and bereavement training were more comfortable discussing death.

The results demonstrated that consultation practices are associated with a higher level of comfort in discussing death and dying in pediatrics.

To document the current clinical practice in 2017 for assessment of supportive care needs and provision of supportive care to women with gynecological cancer and their caregivers in Australia, and to identify the main enablers and barriers to care provision.

A total of 64 health professionals who care for Australian women with gynecological cancer responded to an electronic survey which explored their use of needs assessment, service-level processes and protocols for support service provision, and identified enablers and barriers to provision of care to both patients and caregivers. Eight respondents underwent an additional in-depth interview to elaborate on enablers, barriers, and gaps in the provision of supportive care.

Mostly, needs assessment for women and caregivers was part of current practice but done without validated tools or a checklist. Only 30% of respondents reported having documented referral pathways. Most respondents simply recorded a plan for meeting needs within the patients’ medical record (63% for patients; 46% for caregivers) rather than using a formalized care plan (15% for patients; 6% for caregivers). The interviewees’ comments supported survey results that having sufficient time to discuss issues was both the most important enabling factor and the greatest barrier to successful supportive care provision. The interviewees further discussed variations in needs based on age, cultural background, and phases within the cancer care continuum, and that best practice supportive care should involve a multidisciplinary team and customizable protocols.

There is much room for improvement in the assessment of needs and provision of supportive care to women with gynecological cancer and their caregivers. Approaches to optimize use of consultation time (e.g., needs assessment tools and referral protocols) are necessary. Flexibility in the form and mode of delivery of support may be required to meet diverse personal preferences and incorporate caregivers.

Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients’ and families’ emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement.

The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.

Four salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease.

The MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.

There is no standardized and universally accepted pain classification system for the assessment and management of cancer pain in both clinical practice and research studies. The Edmonton Classification System for Cancer Pain (ECS–CP) is an assessment tool that has demonstrated value in assessing pain characteristics and response. The purpose of our study was to determine the relationship between negative ECS–CP features and some pain-related variables like pain intensity and opioid use. We also explored whether the number of negative ECS–CP features was associated with higher pain intensity.

The electronic charts of 100 patients at an outpatient supportive care clinic in a comprehensive cancer center were reviewed for variables like patient characteristics, initial ECS–CP assessment, morphine equivalent daily dose (MEDD), opioid rotation, Edmonton Symptom Assessment Score (ESAS), and use of adjuvant analgesics.

Some 91 of the 100 charts were eligible for analysis. The most common primary cancer type was gastrointestinal (22.1%). The median pain intensity was 6, and the median MEDD was 45 mg. Neuropathic pain was associated with higher median pain intensity (7 vs. 5, p = 0.007) and median MEDD requirement (83 vs. 30, p = 0.013). Psychological distress was associated with higher median pain intensity (7 vs. 5, p = 0.042). Incident pain was also associated with a trend toward higher pain intensity (6 vs. 5, p = 0.06). A higher number of negative ECS–CP features was associated with higher pain intensity (p = 0.01).

The ECS–CP was successfully completed in the majority of patients, demonstrating its utility in routine clinical practice. Neuropathic pain and psychological distress were associated with higher pain intensity. Also, neuropathic pain was associated with a higher MEDD. A higher sum of negative ECS–CP features was associated with higher pain intensity. Further studies will be needed to verify and explore these observations.

The working ages (25–65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families.

A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children.

Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease.

Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.

Employing a cross-sectional design, the current study examined the relationships between various agents and types of support and posttraumatic growth (PTG) among women with breast cancer.

Eighty married women who were coping with breast cancer completed social support and PTG questionnaires.

All agents of social support (family, friends, belief-based), excluding spousal support, and all types of social support were found to be related to the various PTG dimensions and its total score. Regression analyses revealed that, among the agents of support, only support provided from friends and belief-based support uniquely contribute to prediction of total PTG score. While examining the contribution of various types of support, only cognitive support had a unique contribution to prediction of total PTG score.

Various agents and types of support play different roles in the PTG process following breast cancer. Accordingly, friends as an agent of support and information as a type of support seem to be most important in enhancing PTG among women with breast cancer.

Palliative care services are becoming more commonplace in hospitals and have the potential to reduce hospital costs through length of stay reduction and remediation of symptoms. However, there has been little systematic attempt to identify when a palliative care consultation should be triggered in a hospital, and there is some evidence that these services are under-utilized and not fully understood.

In an initial attempt to address when a consultation might be appropriate, we attempted to pilot test a novel palliative care screening tool to help guide clinician judgment in this regard. A one-page, face-valid instrument was developed using expert opinion.

The sample comprised 33 men (44.6%) and 41 women (55.4%) with an average age of 63.4 years (SD = 13.8) and an average length of stay of 22.7 days (SD = 10.1). The most significant symptom was pain, indicated as moderate-to-severe in 23 patients (31%). This was followed by fatigue (n = 10, 13.5%) and nausea (n = 6, 8.1%). At unit entry, 20 patients (33%) had moderate or severe pain. Upon discharge, this number had been reduced to 12/60 (20%). Chi-Square analysis showed a significant decrease in pain rankings overall (χ2 = 36.3, p < 0.0001). The average total tool score was 7.5 (SD = 3.1). Using an initial threshold of 12 to trigger a palliative care referral, 64 patients (86.5%) would not have received a referral and 10 (13.5%) would have. Of these 10 patients, 2 (20%) did not receive a palliative care consultation while they were hospitalized.

The tool we developed increased consultations over the time period in which it was used, compared with the same time period 1 year prior. Although the threshold developed for triggering referrals seemed artificially high, the implementation of the screening tool did increase referrals.

The purpose of this study was to explore and describe decisions that faced newly enrolled hospice patients and their caregivers after hospice enrollment.

An exploratory, descriptive, cross-sectional design was employed using qualitative methods. In-depth in-person interviews were conducted with current hospice patients (n = 35) and caregivers (n = 45) from 53 families.

The decision to enroll in hospice was a critical juncture on the trajectory of a terminal illness that allowed patients and their families an opportunity to consider subsequent tasks that were important for life closure. A typology of five decisions is presented: (1) operationalized advance care planning (ACP): a renewed focus on decisions about care at life's end; (2) surrogate decision-making: caregivers begin making both informal and formal decisions for the dying person; (3) meaning-making: the foreshortened time brings into focus decisions about seeing special people, attending events, and creating memories; (4) Location of death: decisions about whether the person wants to and can remain at home to die; and (5) final acts: decisions about funeral arrangements, wills, and leaving a legacy become central. ACP was found to exist on a continuum that ranged from absent ACP, dormant ACP, simplified ACP to activated ACP. Hospice enrollment became a catalyst for reactivating discussion of end-of-life choices.

Hospice enrollment prompts the need to consider subsequent important choices that contribute to meaningful life closure, are central to the completion of a family relationship, and may influence adaptation in bereaved caregivers. It is important for clinicians to recognize that well-timed encouragement to consider and explore the use of hospice services, although it may indeed diminish hope for cure or recovery, simultaneously offers an opportunity to engage with important and time-sensitive developmental tasks.

Hope promotes oncology patients’ adaptability to their illness, regardless of the stage of cancer. This study aimed to determine the prevalence of hope in a sample of end-of-life patients and to investigate the possible relationships between hope and a set of clinical and psychosocial measures.

Three hundred and fifty end-of-life oncology patients, with a presumed life expectancy of 4 months or less and a Karnofsky Performance Status (KPS) of 50 or lower, were administered the Italian validated versions of a set of rating scales during their first consultation with a psychologist. This included the Herth Hope Index (HHI), Patient Dignity Inventory (PDI), Demoralization Scale (DS), Hospital Anxiety and Depression Scale (HADS), Functional Assessment of Chronic Illness Therapy (FACIT-Sp), and the Visual Analogue Scale for pain (VAS).

On average, the sample scored between moderate and high on the HHI and the average level of spirituality was high. However, most patients had clinically relevant anxious and depressive symptomatology and high levels of demoralization. Other than the pain scale, the total HHI score significantly correlated with the total scores of all rating scales and their subscales, as well as with the measure of personal religious practice. The “Meaning” FACIT-Sp subscale was found to be the main predictor of hope.

Since hope represents a core need and a tool for patients dealing with their illness, it is essential to implement stage-specific and realistic hope-facilitating interventions and support patients in their search for meaning, which promotes spiritual well-being and appears relevant in fostering hope.

This article examines the views and opinions of staff from a larger study exploring the palliative and end-of-life care needs of patients with progressive long-term neurological conditions (PLTNC).

Eighty staff, in a range of professions from three types of care services provided to people with PLTNC in England, took part in 14 focus groups and 3 individual interviews. Sites included six long-term residential neurological care centers, an inpatient service at an urban hospice, and a multi-disciplinary outpatient service for people with Huntington's disease.

Findings show a concordance between the views of staff from across the three types of participating services. Staff placed particular emphasis on teamwork, support from community-based resources, and developing rapport with patients in order to provide high quality palliative and end-of-life care. All staff perceived that identifying the dying phase was a particular challenge, sometimes resulting in patients being admitted to hospital at the end of life in contravention of their expressed advance wishes for place of death.

This article adds to a small body of literature that seeks staff views and opinions about the rewards and challenges of providing palliative and end-of-life care to people with complex needs arising from long-term conditions. Although this article focuses primarily on the challenges of caring for people with neurological conditions, many issues reported are of wider relevance for the delivery of palliative and end-of-life care in other conditions.

Although support programs for children whose parents have cancer have been described and evaluated, formal research has not been conducted to document outcomes. We adapted a group intervention called CLIMB®, originally developed in the United States, and implemented it in Tokyo, Japan, for school-aged children and their parents with cancer. The purpose of this exploratory pilot study was to examine the feasibility, acceptability, and impact of the Japanese version of the CLIMB® Program on children's stress and parents' quality of life and psychosocial distress.

We enrolled children and parents in six waves of replicate sets for the six-week group intervention. A total of 24 parents (23 mothers and 1 father) diagnosed with cancer and 38 school-aged children (27 girls and 11 boys) participated in our study. Intervention fidelity, including parent and child satisfaction with the program, was examined. The impact of the program was analyzed using a quasiexperimental within-subject design comparing pre- and posttest assessments of children and parents in separate analyses.

Both children and parents experienced high levels of satisfaction with the program. Children's posttraumatic stress symptoms related to a parent's illness decreased after the intervention as measured by the Posttraumatic Stress Disorder–Reaction Index. No difference was found in children's psychosocial stress. The Functional Assessment of Chronic Illness Therapy scores indicated that parents' quality of life improved after the intervention in all domains except for physical well-being. However, no differences were found in parents' psychological distress and posttraumatic stress symptoms.

Our results suggest that the group intervention using the CLIMB® Program relieved children's posttraumatic stress symptoms and improved parents' quality of life. The intervention proved the feasibility of delivering the program using manuals and training. Further research is needed to provide more substantiation for the benefits of the program.

Mindfulness is a concept of growing impact on psychotherapy and has been shown to be effective for stress reduction and to improve psychological well-being. Existential Behavioural Therapy (EBT) was developed to support relatives of palliative care (PC) patients to cope with their situation during caregiving and bereavement. Mindfulness training was a core element of the intervention.

We investigated the relationship between mindfulness, mental distress, and psychological well-being in informal caregivers, and evaluated if the effects of the intervention were mediated by mindfulness.

Relatives of PC inpatients took part in a randomized-controlled EBT trial and completed the Cognitive and Affective Mindfulness Scale-Revised, items from the Five Facets of Mindfulness as well as the Brief Symptom Inventory, the Satisfaction with Life Scale, the WHOQOL-BREF, a numerical rating scale on quality of life (range 0–10), and the Schedule for Meaning in Life Evaluation at pre- and post-intervention, and a 3- and 12-months follow-up.

One-hundred-and-thirty carers were included, most of them (71.6%) recently being bereaved at the beginning of the intervention. High correlations between mindfulness and mental distress (r = −0.51, p < 0.001) as well as life satisfaction (r = 0.52, p < 0.001) were found. Mindfulness was a significant predictor of improvement in psychological distress, meaning in life and quality of life three months after the intervention. The EBT effects were partly mediated by mindfulness.

Mindfulness seems to be a promising concept in supporting informal caregivers of PC patients. Further research is needed to identify the required format and intensity of mindfulness practice necessary for improvement.

Spiritual care is an essential component of quality palliative care. Recognizing the importance, the Department of Veterans Affairs (VA) mandates the inclusion of chaplains in a palliative care consult team (PCCT). The purpose of this study is to explain the process and content of spiritual care provided in a VA Medical Center from chaplains' perspectives.

Five Christian chaplains who provide care to patients at end of life were interviewed. Each interview was recorded and transcribed. Analysis based on the grounded theory was used to identify themes from each interview question.

The PCCT in this study appeared to have a strong referral and communication system in which every palliative care patient was seen by a chaplain and the care plan was discussed with an interdisciplinary team. Chaplains reported providing a range of services, which addressed religious, spiritual, emotional, family, and illness concerns. Chaplains were aware of the unique spiritual needs of veterans, including working through guilt for killing in war and requiring forgiveness. Chaplains' ideas for improvement of spiritual care services included increasing time to provide care, providing bereavement care and support to families, and adding chaplains with different religious backgrounds. Chaplains reported how their own spirituality influenced the care they provided.

Spiritual care in the VA can include a range of services and should consider the unique needs of the veteran population. Future studies can build upon our findings from chaplains to learn about the perspectives of patients, family, and other healthcare providers of spiritual care. This information would allow identification of strengths of current spiritual care practices and areas for care improvement, and ultimately could improve the well-being of patients at the end of life.

The death of a child from cancer is an intense and life-changing loss for a parent. Guided by the principles of patient- and family-centered care, hospital-based caregivers developed a program to provide bereavement support for parents through phone calls and mailings. The aim of the present qualitative phenomenological study was to understand how parents experienced participating in this bereavement program.

A total of eight parents from six families participated in a focus-group evaluation of the two-year hospital-based bereavement program. Two social work clinicians/researchers independently analyzed the transcript of the focus group to define themes.

Four themes were identified: (1) lived experience of grief, (2) importance of relationships with the hospital-based team, (3) bereavement support from hospital-based providers, and (4) extending bereavement care.

Participants indicated the value of ongoing communication and connection with members of the healthcare team, who were often central to a family's life for years during their child's cancer treatment. Parents also provided suggestions for extending bereavement support through continued contact with providers and informal annual gatherings, as well as through a peer (parent-to-parent) support program.