With spirituality being one of the most important components of end-of-life (EOL) care, this study explored the oral responses of 44 dying persons who expressed spirituality.

Four identified spiritual themes: religious systems of beliefs and values, life meaning, purpose and connections with others, nonreligious systems of beliefs and values, and metaphysical or transcendental phenomena served as a framework for a content analysis of 91 spiritual references.

From the content analysis, eight interrelated and separate themes emerged. Although the highest number of responses centered on religious beliefs and values, nonreligious beliefs and values that included reason, dignity, mental discipline, and communion were expressed. The themes of life meaning, purpose, and connections with others also surfaced as important aspects of EOL spirituality.

The findings support the need for hospice/palliative care professionals to approach spirituality from other than a Judeo-Christian viewpoint, help dying persons create meaning and purpose within the context of their lives, and assist them in their desire for connectedness to faith communities and other significant individuals in their lives.

The present study investigated what types of transformation terminally ill cancer patients experienced from diagnosis until the terminal stage, what meanings terminally ill cancer patients attributed to their illness, and whether or not those who attributed positive meaning to their illness achieved high levels of spiritual well-being as a preliminary study.

Ten terminally ill cancer patients in the hospice wards of two general hospitals participated. A clinical psychologist conducted a semistructured interview with the patients individually for about 60 min. Patients completed the FACIT-Sp and HADS before the interview and talked about the meanings of cancer experience. The contents of the interviews were analyzed qualitatively. Patients were separated into high and low levels of spiritual-well being by the median of FACIT-Sp scores.

Three types of transformation were extracted: “group with peaceful mind,” “group with both positive attitude and uneasy feeling,” and “groups with uneasy feeling.” As attributed meanings to the illness, five categories were extracted: “positive meaning,” “natural acceptance,” “negative acceptance,” “search for meaning,” and “regret and sorrow.” Patients in the high level spiritual well-being group attributed the meaning of illness to “positive meaning” and “natural acceptance,” and those in the low level spiritual well-being group attributed it to “regret and sorrow” and “search for meaning.”

Some Japanese terminally ill cancer patients experienced positive transformation, and patients who attributed “positive meaning” and “natural acceptance” to their illness experience achieved high levels of spiritual well-being.

An increasing number of older people in Western countries are living with incurable cancer, receiving palliative care from specialized healthcare contexts. The aim of our article was to understand how they experience the existential meaning-making function in daily living from a life-span perspective.

Some 21 participants (12 men and 9 women), aged 70–88, were interviewed in a semistructured framework. They were recruited from somatic hospitals in southeastern Norway. We applied the model of selective optimization with compensation (SOC) from life-span developmental psychology in a deductive manner to explore the participants' life-oriented adaptive strategies. A meaning component was added to the SOC model.

The participants experienced the existential meaning-making function on two levels. On a superordinate level, it was an important component for interpreting and coordinating the adaptive strategies of SOC for reaching the most important goals in daily living. The existential meaning-making framework provided for a comprehensive understanding of resilience, allowing for both restoration and growth components to be identified. The second level was related to strategy, in that the existential meaning-making function was involved in a complex interaction with behavioral resources and resilience, leading to continuation of goals and more realistic goal adjustments. A few experienced existential meaning-making dysfunction.

The modified SOC model was seen as applicable for palliative care in specialized healthcare contexts. Employing the existential meaning-making framework with its complementary understanding of resilience as growth potential to the SOC model's restoration potential can help older people to identify how they make meaning and how this influences their adaptation process to being incurably sick.

While improvements in healthcare have resulted in children with complex and life-threatening conditions living longer, a proportion of them still die. The death of a child puts parents at increased risk for anxiety, depression, and complicated grief. Increasing our understanding of the coping strategies that parents use under such extreme circumstances will enable us to best provide support to families, before and after a child's death. Our aim herein was to develop a theoretical framework of parental coping.

Evidence from the literature was employed to develop a theoretical framework to describe parental coping in the context of having a child with a life-limiting illness who is declining and facing eventual death.

The reasoning and argument consists of three guiding elements: (1) the importance of approach as well as avoidance (as coping strategies) in the context of managing the extreme emotions; (2) the importance of the social aspect of coping within a family, whereby parents cope for others as well as for themselves; and (3) the importance of a flexible and balanced coping profile, with parents using different coping strategies simultaneously. Central to the proposed framework is that effective coping, in terms of adjustment, is achieved by balancing coping strategies: accessing different coping strategies simultaneously or in parallel with a specific focus on (1) approach and avoidance and (2) coping aimed at self and others.

Understanding of parental coping strategies is essential for health professionals in order to support parents effectively.

Dementia is a progressive illness with a complex biopsychosocial constellation of symptoms faced by millions of individuals and families worldwide. Palliative care teams have specialized in symptom management and end-of-life care for decades; however, the role of palliative care in dementia management is not yet well elucidated. The aim of this systematic review was to understand the impact of palliative care in dementia management.

This systematic review was conducted using a prospective study protocol. Medline and PubMed were searched from January 1, 1998 to October 2017. Eligible studies included single-blind cluster, two-arm parallel cluster, or unblinded randomized controlled trials (RCTs), observational studies, retrospective cohort studies, cross-sectional studies, concurrent mixed methods study, qualitative study, and Delphi studies.

Four key themes were identified in this review: goals of care and end-of-life conversations, symptom management, emergency room visits, and prescribing behavior. In each domain, palliative care consultation either showed benefit or was postulated to have benefit if implemented.

Although the literature to support or refute thematic conclusions is not large, there was a trend toward patient care benefit across several domains. Large RCTs with longer follow-up across different settings should be undertaken to solidify the themes and trends outlined in this review. Understanding the views of healthcare providers including referral sources (i.e., general practitioners and specialists) through qualitative research could optimize palliative care referrals, implement palliative care recommendations, and improve a targeted palliative care education curriculum.

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.

This research examined the psychometric properties of previously published short forms of the Geriatric Depression Scale (GDS) in patients receiving palliative care. It also uses the full form of the GDS to examine the prevalence of nonsomatic symptoms of depression in palliative patients.

Participants were 84 patients with advanced cancer attending palliative care outpatient clinics. Scores for short forms of the GDS were derived from administering the original 30-item scale. Patients also completed the single item numerical analogue scale for depression from the Edmonton Symptom Assessment System and parallel numerical analogue scales for will-to-live and hope. A subset of the sample completed the measures twice. Short forms were judged on the extent to which they captured information gained from the full scale and their internal consistency, test–retest reliability, convergent and concurrent validity, and their distribution of scores.

Overall, five short forms showed good psychometric properties at both visits. Two of these forms were very brief. Some nonsomatic symptoms assessed on the full GDS were reported with high frequency. However, few individuals reported a large number of symptoms. At both visits, patients identified as likely to have severe depression gave different responses from other patients on most items on the GDS-30.

Several short forms of the GDS may be appropriate for use in palliative care. Patients identified as likely to have severe depression showed many of the same symptoms that characterise depression in other geriatric populations.

To examine (1) advanced congestive heart failure (CHF) patients' estimates of their longevity and changes in these estimates over time; (2) clinical, functional, and psychological adjustment correlates of these longevity estimates; and (3) correspondence of changes in longevity and changes in multiple dimensions of spirituality over time.

Longitudinal questionnaire-based study of 111 patients diagnosed with severe CHF assessed at two time points separated by 6 months.

Nearly half of the participants estimated their longevity as at least 5–10 years, and there was very little change in estimates across the assessment periods. Longevity estimates were minimally related to clinical or functional indicators, but longer estimates were related to fewer depressive symptoms and higher levels of life satisfaction. Multivariate regression analyses indicated that shifting longevity estimates toward less time or toward uncertainty was related to increases in religious life meaning and forgiveness and to decreased spiritual struggle over the 6-month interval. No effects were observed for daily spiritual experiences.

Because very little is known about how individuals estimate their remaining life span, these results establish information regarding their basis (i.e., not clinical or functional) and stability, at least in the context of advanced heart failure. In addition, the notion that individuals become more spiritual as they perceive the approach of death was borne out in terms of multiple aspects of spirituality.

Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable.

This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data.

The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits.

The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

Improving the care provided for people dying in acute healthcare facilities has been identified as a priority for Australian healthcare. Previous observations support the idea that quality care improves outcomes for the dying person as well as for their relatives. To improve care it is essential that there be a clear understanding of which issues require attention. The aim of our project was to improve the understanding of the experiences of family members whose relatives had died on an acute medical ward.

A mixed-methods approach was adopted for our study. With the approval of the human ethics committee, relatives were approached within three months of the death of their family member and invited to participate in an interview based on a quality-of-dying-and-death (QoDD) tool.

Of the 50 families approached, 10 agreed to be interviewed. When they were asked to reflect on the experiences of the dying person, the issues that they articulated most strongly related to the need to have time before death to address issues and spend time with important others. With regards to the needs of the dying person's relatives, people articulated strongly that they needed information, support, and evidence of good symptom control. The provision of support post-death was also poignantly highlighted.

This study supports observations made in other clinical areas that have identified that timely communication, good symptom control, and ongoing support for both the dying person and their family has important ramifications. Articulating such details is an important part of understanding which aspects of care require attention.

Survivors of hematopoietic stem cell transplant (HSCT) have experienced a life threatening and potentially traumatic illness and treatment that make them vulnerable to long lasting negative psychological outcomes, including anxiety and depression. Nevertheless, studies show that overcoming cancer and its treatment can present an opportunity for personal growth and psychological health (reduced symptoms of anxiety and depression and high levels of emotional well-being) through resilience. However, research has not yet clarified what differentiates HSCT survivors who experience psychological growth from those who do not. By analyzing recovery narratives, we examined whether HSCT survivors’ interpretation of their experiences helps explain differences in their post-treatment psychological health.

Guided by narrative psychology theory, we analyzed the narratives of 23 HSCT survivors writing about their experience of cancer treatment. Psychological health was measured by: (1) emotional well-being subscale part of the Functional Assessment of Cancer Therapy Bone Marrow Transplant (FACT-BMT), (2) depression, and (3) anxiety subscales of the Brief Symptom Inventory.

Findings revealed a positive relation between psychological health and a greater number of redemption episodes (going from an emotionally negative life event to an emotionally positive one) as well as fewer negative emotional expressions.

Theoretical and practical implications of these findings are discussed, showing how narratives can inform interventions to assist cancer survivors with their psychological recovery.

Many patients approaching death experience hopelessness, helplessness, and a depressed mood, and these factors can contribute to a difficult end-of-life (EoL) period. Biography services may assist patients in finding meaning and purpose at this time. The aim of our study was to investigate the lived experience of volunteers involved in a biography service in Melbourne, Australia, using a qualitative methodology.

The participants were 10 volunteers who had participated in a biography service within a private palliative care service. Each volunteer was interviewed separately using a study-specific semistructured interview guide. The transcripts of these interviews were then subjected to thematic analysis.

Analysis yielded the following themes: motivations for volunteering; dealing with death, dying, and existential issues; psychosocial benefits of volunteering; and benefits and challenges of working with patients and their families. Our results indicated that volunteering gave the volunteers a deeper appreciation of existential issues, and helped them to be more appreciative of their own lives and gain a deeper awareness of the struggles other people experience. They also suggested that volunteers felt that their involvement contributed to their own personal development, and was personally rewarding. Furthermore, the results highlighted that volunteers found that encounters with family members were sometimes challenging. While some were appreciative, others imposed time limits, became overly reliant on the volunteers, and were sometimes offended, hurt, and angered by what was included in the final biography.

It is hoped that the findings of the current study will provide direction for improvements in the biography services that will benefit patients, family members, and volunteers. In particular, our findings highlight the need to provide ongoing support for volunteers to assist them in handling the challenges of volunteering in a palliative care setting.

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.

Evidenced-based psychotherapies are not well researched for palliative care patients experiencing unrelenting anxiety about dying, even less research is focused on young adult palliative care patients with death anxiety. The aim of this study is to provide preliminary data regarding potential clients' perceptions of using evidenced based treatments with dying populations who are experiencing death anxiety.

104 college students were used as potential clients and randomly assigned to watch either a short video of a cognitive therapy (CT) session or of an acceptance and commitment therapy (ACT) session focused on treating a young adult diagnosed with an acute lymphoid leukemia expressing death anxiety. After watching the video, potential clients rated the session impact of the therapy approach using the Session Evaluation Questionnaire.

No differences in ratings of session impact were found between potential clients who viewed the CT session and the ACT session. In regards to potential clients' views of session impact variables, their view of session smoothness was positively related to their post-session positivity, but inversely related to their view of session depth. Additionally, a positive correlation was found between potential clients' views of the therapist and session depth.

This preliminary study suggests that palliative care patients expressing death anxiety may benefit from either ACT or CT for death anxiety, however, future research is needed to explore the usefulness of each approach. Findings of this study support the theory that ACT and CT are viewed to have a similar session impact in the palliative care population.

The terminal phase of cancer represents a major crisis for the family system. Regardless of the caregiving role they undertake, family members are forced to address multiple impacts when facing the approaching death of their terminally ill loved one. International guidelines recognize the importance of integrating the family into a care plan. However, more needs to be known about how to deliver optimal family support. The purpose of this study is to review the current state of the art in family/caregiver-focused interventions of people with terminal cancer in palliative care.

For this purpose, an overview of the literature's systematic reviews on the topic was conducted to select Randomized Controlled Trials (RCTs) on family/caregiver-focused interventions.

Nine interventions were found in the systematic reviews of literature and meta-analysis. These family/caregiver-focused interventions were then thoroughly and critically analyzed. Despite the heterogeneity with regard to their characteristics, the interventions commonly focused on caregiving matters, were brief in duration, and delivered by non-mental health experts. The efficacy of such interventions was seen as modest.

Family/caregiver-focused interventions in palliative care remain a matter of concern and more research is needed to identify adequate and effective ways of helping families that face the crisis of terminal illness in the system.

This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services, if any, demonstrate clear evidence of effectiveness.

Our methods included: (1) a literature search for published English-language research articles from 2005–2015; (2) critical appraisal of articles to identify findings; (3) compilation of findings; and (4) determination of the relevance of our findings.

Some 38 papers were found, and all were retained to identify the outcomes researched and research findings. Many different outcomes were studied in the 18 quantitative, 11 qualitative, and 9 mixed-methods investigations undertaken worldwide. Ten studies focused on level of grief, six on stress/distress level, six on grief knowledge, six on level of depression, and five on somatization or physical symptoms. Most commonly, a group of bereavement services was evaluated as a whole, followed by group therapy, individual counseling, written information, and other less common services. No group of services or individual service was determined to yield clear and convincing evidence of effectiveness. Regardless, all but one service were shown to have value—most often related to gaining grief information and/or emotional support. Until high-quality research studies have repeatedly revealed evidence of effectiveness, it is possible that the positive outcomes of bereavement services will be largely based on bereaved people receiving helpful educational information and emotional support from organizations and people prepared to help them.

This project outlines existing bereavement service types and the state of science in relation to determination of outcomes. It offers suggestions to advance the state of science to validate or refine bereavement services. It brings to light the issue that bereavement service outcomes need to be carefully researched so that evidence can drive service refinement and expansion. It also highlights the importance of effective bereavement services.

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.

The present study sought to explore the role of meaning making and high-level construal in the relationship between meaning discrepancy and posttraumatic growth among Chinese cancer patients.

The participants were 193 individuals diagnosed with cancer. Meaning discrepancy, meaning making, high-level construal in meaning making, and posttraumatic growth were measured. Bootstrapping and structural equation modeling were performed to test the mediation effects of high-level construal on the meaning-making process.

Mediation analysis revealed that perceived discrepancies were associated with individuals' meaning-making efforts. Meaning-making efforts prompted participants to adopt a high-level construal orientation, which in turn enhanced posttraumatic growth.

Our study empirically tested construal level theory in a population suffering from severe chronic trauma. The results demonstrate the important role of high-level construal in the meaning-making process of cancer patients, suggesting a specific effective strategy to foster posttraumatic growth. It seems encouraging to indicate that adopting such high-level construal may be included as part of psychological interventions for cancer patients.

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.