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

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

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

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

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.

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.

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.

Prevalence rates of sleep difficulties in advanced cancer patients have varied widely across studies (12 to 96%), and none of these employed a diagnostic interview to distinguish different types of sleep–wake disorders. Moreover, very limited information is available on subjective and objective sleep parameters in this population. Our study was conducted in palliative cancer patients and aimed to assess rates of sleep–wake disorders and subsyndromal symptoms and to document subjective and objective sleep–wake parameters across various types of sleep–wake difficulties.

The sample was composed of 51 community-dwelling cancer patients receiving palliative care and having an Eastern Cooperative Oncology Group score of 2 or 3. Relevant sections of the Duke Interview for Sleep Disorders were administered over the phone. An actigraphic recording and a daily sleep diary were completed for 7 consecutive days.

Overall, 68.6% of the sample had at least one type of sleep–wake difficulty (disorder or symptoms): 31.4% had insomnia and 29.4% had hypersomnolence as their main sleep–wake problem. Participants with insomnia as their main sleep difficulty had greater disruptions of subjective sleep parameters, while objectively-assessed sleep was more disrupted in patients with hypersomnolence comorbid with another sleep–wake difficulty.

The high rates of sleep–wake difficulties found in this study indicate a need to screen more systematically for sleep–wake disorders, including insomnia and hypersomnolence, in both palliative care research and clinical practice, and to develop effective nonpharmacological interventions specifically adapted to this population.

The aim of the study was to explore how teenagers reason about a parent's recent death and about their life without that parent.

A total of 10 teenagers (aged 14–19 years, 7 boys and 3 girls) were interviewed twice, 3–12 months after their parent's death. The interviews were carried out individually and as free-ranging conversations. A content analysis with a descriptive and interpretive design was conducted.

Importantly, all teenagers appreciated participating in the interviews. Some had not previously talked in such depth about this with anyone, while others had more open communications within their families and with others. Their parent's death was the worst thing that could happen, but they still expressed the feeling that it had been a relief for both the ill parent and themselves. The death had relieved the parent from suffering and a life with severe illness. Many of the teenagers empathized with the surviving parent's grief and worried about him or her as well as the entire home situation. As a consequence, the teenagers did not show their grief, as they did not want to burden the grieving parent. Seeing the parent grieving could lead to feelings of loneliness and hopelessness and that the support they needed was not there for them. Nevertheless, some teenagers could grieve together with the surviving parent in common understanding and with openness.

A tentative conclusion is that the teenagers who were more likely to talk and grieve together with their surviving parent coped better with their situation than teenagers who did not. Parentally bereaved teenagers tend to take on a responsibility to support the grieving parent, when it is they themselves who need and should receive support.

Symptom assessment is important in palliative care. Computerized technology (CT) is now available for use in such assessments. Barriers against implementation of CT in health care in general are well known, but less is known about how such technology is perceived by palliative health care personnel. The aim of the present study was to investigate the experience with implementation of CT among personnel in symptom assessment at a palliative care unit.

Seventeen respondents from a hospital ward unit and an outpatient clinic unit participated in an in-depth interview. A qualitative approach was used in collecting and analyzing the data.

Respondents at the hospital ward unit were better motivated than respondents at an outpatient clinic unit. It was stated that the health condition of the patient is important in their perception of the tool as useful or not. Conflicts between “high tech” and “high touch” were reported in both units.

When the implementation process is conducted in such a manner that the health care personnel are involved, benefits of the tool can be realized. Thus, effective implementation and use of high tech can lead to more time released for high touch.

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.

As medical education evolves, emphasis on chronic care management within the medical curriculum becomes essential. Because of the consistent lack of appropriate end-of-life care training, far too many patients die without the benefits of hospice care. This study explores the association between physician knowledge, training status, and level of comfort with hospice care referral of terminally ill patients.

In 2011, anonymous surveys were distributed to physicians in postgraduate years 1, 2, and 3; fellows; hospital attending physicians; specialists; and other healthcare professionals in five hospitals of a large health system in New York. Demographic comparisons were performed using χ2 and Fisher's exact tests. Spearman correlations were calculated to determine if professional status and experience were associated with comfort and knowledge discussing end-of-life topics with terminal patients.

The sample consisted of 280 participants (46.7% response rate). Almost a quarter (22%) did not know key hospice referral criteria. Although 88% of respondents felt that knowledge of hospice care is an important competence, 53.2% still relinquished advance directives discussion to emergency room (ER) physicians. Fear of patient/family anger was the most frequently reported hospice referral barrier, although 96% of physicians rarely experienced reprisals. Physician comfort level discussing end-of-life issues and hospice referral was significantly associated with the number of years practicing medicine and professional status.

Physicians continue to relinquish end-of-life care to ER staff and palliative care consultants. Exploring unfounded and preconceived fears associated with hospice referral needs to be integrated into the curriculum, to prepare future generations of physicians. Medical education should focus on delivering the right amount of end-of-life care training, at the right time, within the medical school and residency curriculum.

Communication based on patient preferences can alleviate their psychological distress and is an important part of patient-centered care for physicians who have the task of conveying bad news to cancer patients. The present study aimed to explore the demographic, medical, and psychological factors associated with patient preferences with regard to communication of bad news.

Outpatients with a variety of cancers were consecutively invited to participate in our study after their follow-up medical visit. A questionnaire assessed their preferences regarding the communication of bad news, covering four factors—(1) how bad news is delivered, (2) reassurance and emotional support, (3) additional information, and (4) setting—as well as on demographic, medical, and psychosocial factors.

A total of 529 outpatients with a variety of cancers completed the questionnaire. Multiple regression analyses indicated that patients who were younger, female, had greater faith in their physician, and were more highly educated placed more importance on “how bad news is delivered” than patients who were older, male, had less faith in their physician, and a lower level of education. Female patients and patients without an occupation placed more importance on “reassurance and emotional support.” Younger, female, and more highly educated patients placed more importance on “additional information.” Younger, female, and more highly educated patients, along with patients who weren't undergoing active treatment placed more importance on “setting.”

Patient preferences with regard to communication of bad news are associated with factors related to patient background. Physicians should consider these characteristics when delivering bad news and use an appropriate communication style tailored to each patient.

Although thiamine deficiency (TD) and Wernicke encephalopathy (WE) are not rare in cancer patients, the cases reported to date developed TD and/or WE after treatment had started.

From a series of cancer patients, we report a patient diagnosed with TD without the typical clinical symptoms of WE at the preoperative psychiatric examination.

A 43-year-old woman with ovarian cancer was referred by her oncologist to the psycho-oncology outpatient clinic for preoperative psychiatric evaluation. Her tumor had been growing rapidly before the referral. Although she did not develop delirium, cerebellar signs, or eye symptoms, we suspected she might have developed TD because of her 2-month loss of appetite as the storage capacity of thiamine in the body is approximately 18 days. The diagnosis of TD was supported by abnormally low serum thiamine levels.

Cancer therapists need to be aware that thiamine deficiency may occur even before the start of cancer treatment. In cases with a loss of appetite of more than 2 weeks’ duration, in particular, thiamine deficiency should be considered if the tumor is rapidly increasing, regardless of the presence or absence of delirium.

Akathisia is a neuropsychiatric syndrome characterized by subjective and objective restlessness. It is a common side effect in patients taking antipsychotics and other psychotropics. Patients with delirium are frequently treated with antipsychotic medications that are well known to induce akathisia as a side effect. However, the prevalence, phenomenology, and management of akathisia in patients with delirium remain largely unknown. The purpose of this review was to examine the medical literature in order to establish the current state of knowledge regarding the prevalence of antipsychotic-induced akathisia in patients with delirium.

A systematic review of the literature was conducted using the EMBASE, MEDLINE, PsycINFO, and CINAHL databases. Ten studies addressing the incidence of akathisia in patients taking antipsychotic medication for delirium were identified and included in our review.

The included studies reported a variable prevalence of antipsychotic-induced akathisia. A higher prevalence was found in patients taking haloperidol. Among atypical antipsychotics, paliperidone and ziprasidone were associated with a higher risk of akathisia. The risk for akathisia appeared to be a dose-related phenomenon.

Studies using specific scales for evaluation of akathisia in delirium are lacking. Some populations, such as patients with cancer or terminally ill patients in palliative care settings taking antipsychotics for the treatment of delirium, could be at higher risk for development of akathisia as a side effect.

Much of the cancer rehabilitation research that has been conducted has consisted of relatively early recovery-of-function rehabilitation, and little attention has been paid to the psychosocial aspects of palliative rehabilitation. The aim of the present preliminary study was to examine the “narratives” of elderly cancer patients that emerged as a result of a life review performed in association with collage activity and to assess the effectiveness of this intervention.

We conducted a collage activity based on a life review in two sessions. Some 11 cancer patients who were 65 years of age or older and receiving palliative care participated. Evaluations using the Functional Assessment of Chronic Illness Therapy–Spiritual (FACIT–Sp) Scale, the Hospital Anxiety and Depression Scale (HADS), and the Self-Efficacy Scale for Terminal Cancer (SESTC) were administered before and immediately after the intervention.

The mean scores for the FACIT–Sp and affect regulation efficacy on the SESTC significantly increased, while the mean HADS score significantly decreased. Regarding the impressions after completion of the intervention, generally favorable evaluations were heard from families and medical staff members as well as from the subjects.

A collage activity based on a life review may be effective for improving spiritual well-being, mitigating anxiety and depression, and improving self-efficacy. The collage itself was also useful in facilitating interactions with others, including family members, and the activity provided psychological support for families.

Disclosing the truth when breaking bad news continues to be difficult for health professionals, yet it is essential for patients when making informed decisions about their treatment and end-of-life care. This literature review aimed to explore and examine how health professionals, patients, and families experience truth disclosure during the delivery of bad news in the inpatient/outpatient palliative care setting.

A systemized search for peer-reviewed, published papers between 2013 and 2020 was undertaken in September 2020 using the CINAHL, Medline, and PsycInfo databases. The keywords and MeSH terms (“truth disclosure”) AND (“palliative care or end-of-life care or terminal care or dying”) were used. The search was repeated using (“bad news”) AND (“palliative care or end-of-life care or terminal care or dying”) terms. A meta-synthesis was undertaken to synthesize the findings from the eight papers.

Eight papers were included in the meta-synthesis and were represented by five Western countries. Following the synthesis process, two concepts were identified: “Enablers in breaking bad news” and “Truth avoidance/disclosure.” Several elements formed the concept of Enablers for breaking bad news, such as the therapeutic relationship, reading cues, acknowledgment, language/delivery, time/place, and qualities. A conceptual model was developed to illustrate the findings of the synthesis.

The conceptual model demonstrates a unique way to look at communication dynamics around truth disclosure and avoidance when breaking bad news. Informed decision-making requires an understanding of the whole truth, and therefore truth disclosure is an essential part of breaking bad news.

There is an emerging body of research aimed at understanding the determinants of place of death, as where people die may influence the quality of their death. However, little is known about place of death for people of Southern Africa. This study describes place of death (home or hospital) and potential influencing factors (cause of death, age, gender, occupation, and district of residence).

We collected the death records for years 2005 and 2006 for all adult non-traumatic deaths that occurred in Botswana, described them, and looked for associations using bivariate and multivariate analyses.

The evaluable sample consisted of 18,869 death records. Home deaths accounted for 36% of all deaths, and were predominantly listed with “unknown” cause (82.3%). Causes of death for hospital deaths were HIV/AIDS (49.7%), cardiovascular disease (13.8%), and cancer (6.6%). The mean age at the time of all deaths was 53.2 years (SD = 20.9); with 61 years (SD = 22.5) for home deaths and 48.8 years (SD = 18.6) for hospital deaths (p < .001). Logistic regression analysis revealed the following independent predictors of dying at home: unknown cause of death; female gender; >80 years of age; and residing in a city or rural area (p < .05).

A major limitation of this study was documentation of cause of death; the majority of people who died at home were listed with an unknown cause of death. This finding impeded the ability of the study to determine whether cause of death influenced dying at home. Future study is needed to determine whether verbal autopsies would increase death-certificate listings of causes of home deaths. These data would help direct end-of-life care for patients in the home.

A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns' self-assessed comfort levels regarding caring for children with life-threatening conditions.

A newly created assessment tool was administered to interns in order to rate their comfort regarding pediatric palliative care at the beginning and conclusion of their intern year.

Twenty-two of the 29 interns completed this survey. Baseline data indicated 55% of the interns had some experience with taking care of a dying pediatric patient during their medical school training, and 79% indicated that they had taken care of a dying adult. Only 7% of the interns felt adequately prepared to deal with death and dying, but all interns indicated interest in further learning about pediatric palliative care. Comparison of the overall comfort levels of the 22 responding residents before and after the first year of training in 20 different related tasks demonstrated a significant self-assessed improvement of comfort in seven areas. There was no increase in self-reported comfort in communication related to palliative care.

Residents indicated increased comfort in some areas of pediatric palliative care after the first year of their training. The underlying cause of this increased comfort is unclear at this time. The overall effect of longitudinal palliative care curriculums on residents' level of comfort in caring for this population deserves further assessment.

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.

Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated—particularly around ethical and legal issues—and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community.

We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized.

We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered.

Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide.