To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions.

Eight online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, Airiti, GARUDA Garba Rujukan Digital, and OpenGrey) from 2010 to February 5, 2020 were searched for studies investigating EoL care and the PoD for pediatric patients receiving and not receiving PC.

Of the 6,468 citations identified, 14 cohort studies and one case series were included. An evidence base of mainly adequate- and strong-quality studies shows that inpatient hospital PC, either with or without the provision of home and community PC, was found to be associated with a decrease in intensive care use and high-intensity EoL care. Conflicting evidence was found for the association between PC and hospital admissions, length of stay in hospital, resuscitation at the time of death, and the proportion of hospital and home deaths.

Current evidence suggests that specialist, multidisciplinary involvement, and continuity of PC are required to reduce the intensity of EoL care. Careful attention should be paid to the need for a longer length of stay in a medical setting late in life, and earlier EoL care discussion should take place with patients/caregivers, especially in regard to attempting resuscitation in toddlers, adolescents, and the young adult population. A lack of robust evidence has identified a gap in rigorous multisite prospective studies utilizing data collection.

Delirium is a frequent complication in advanced cancer patients, among whom it is frequently underdiagnosed and inadequately treated. To date, evidence on risk factors and the prognostic impact of delirium on outcomes remains sparse in this patient population.

In this prospective observational cohort study at a single tertiary-care center, 1,350 cancer patients were enrolled. Simple and multiple logistic regression models were utilized to identify associations between predisposing and precipitating factors and delirium. Cox proportional-hazards models were used to estimate the effect of delirium on death rate.

In our patient cohort, the prevalence of delirium was 34.3%. Delirium was associated inter alia with prolonged hospitalization, a doubling of care requirements, increased healthcare costs, increased need for institutionalization (OR 3.22), and increased mortality (OR 8.78). Predisposing factors for delirium were impaired activity (OR 10.82), frailty (OR 4.75); hearing (OR 2.23) and visual impairment (OR 1.89), chronic pneumonitis (OR 2.62), hypertension (OR 1.46), and renal insufficiency (OR 1.82). Precipitating factors were acute renal failure (OR 7.50), pressure sores (OR 3.78), pain (OR 2.86), and cystitis (OR 1.32). On multivariate Cox regression, delirium increased the mortality risk sixfold (HR 5.66). Age ≥ 65 years and comorbidities further doubled the mortality risk of delirious patients (HR 1.77; HR 2.05).

Delirium is common in cancer patients and associated with increased morbidity and mortality. Systematically categorizing predisposing and precipitating factors might yield new strategies for preventing and managing delirium in cancer patients.

Families facing end-stage nonmalignant chronic diseases (NMCDs) are presented with similar symptom burdens and need for psycho-social–spiritual support as their counterparts with advanced cancers. However, NMCD patients tend to face more variable disease trajectories, and thus may require different anticipatory supports, delivered in familiar environments. The Life Rainbow Programme (LRP) provides holistic, transdisciplinary, community-based end-of-life care for patients with NMCDs and their caregivers. This paper reports on the 3-month outcomes using a single-group, pre–post comparison.

Patients with end-stage NMCDs were screened for eligibility by a medical team before being referred to the LRP. Patients were assessed at baseline (T0), 1 month (T1), and 3 months (T2) using the Integrated Palliative Outcome Scale (IPOS). Their hospital use in the previous month was also measured by presentations at accident and emergency services, admissions to intensive care units, and number of hospital bed-days. Caregivers were assessed at T0 and T2 using the Chinese version of the Modified Caregiver Strain Index, and self-reported health, psychological, spiritual, and overall well-being. Over-time changes in outcomes for patients, and caregivers, were tested using paired-sample t-tests, Wilcoxon-signed rank tests, and chi-square tests.

Seventy-four patients and 36 caregivers participated in this research study. Patients reported significant improvements in all IPOS domains at both 1 and 3 months [ranging from Cohen's d = 0.495 (nausea) to 1.793 (depression and information needs fulfilled)]. Average hospital bed-days in the previous month fell from 3.50 to 1.68, comparing baseline and 1 month (p < 0.05). At 3 months, caregiver strain was significantly reduced (r = 0.332), while spiritual well-being was enhanced (r = 0.333).

After receiving 3 month's LRP services, patients with end-stage NMCDs and their caregivers experienced significant improvements in the quality of life and well-being, and their hospital bed-days were reduced.

The importance of supporting advance care planning (ACP) by healthcare professionals is recognized worldwide, and assessing the outcomes, such as people's understanding and readiness for ACP, using an appropriate instrument is essential. We, therefore, developed a Japanese version of the Advance Care Planning Engagement Survey (ACP Engagement Survey; 15 items, 9 items, and 4 items), an international scale for assessing the progress of the ACP, and examined its validity and reliability.

The ACP Engagement Survey was translated into Japanese, back-translated, and culturally adapted, and the final version was reviewed by the author of the original version. Data on basic demographic information and ACP-related experiences were simultaneously collected as external criteria in an online survey of older adults with chronic diseases. The Cronbach's alpha was calculated to assess its internal consistency, and a retest was performed three days later to calculate the intra-class correlation coefficients (ICCs).

A total of 200 respondents (mean age 70; 9.5% female) were included in the analysis. None of the items showed a ceiling effect, but several items did exhibit a floor effect. The factor structure was the same 2-factor structure as the original version, and both factors exhibited a high cumulative contribution rate. The Cronbach's alphas were 0.94 (15-item version), 0.91 (9-item version), and 0.95 (4-item version), and ICCs were of 0.88 (15-item version), 0.9 (9-item version), and 0.84 (4-item version).

The Japanese version of the ACP Engagement Survey was confirmed to have very good reliability regarding both internal consistency and test-retest reliability. Together with the result of the item analysis, we can conclude that the Japanese version of the ACP Engagement Survey is sufficiently reliable to be utilized in interventional studies, and it has acceptable content validity, construct validity, and criterion-related validity.

Psychosocial interventions in families of children with cancer are considered an effective way of empowering family members to tackle the complex hurdles they face. The ability of parents to develop adaptive coping strategies during the child's treatment is not only important to their own mental and physical health, but also to their child's well-being and long-term adjustment with the disease.

The aim of this review was to evaluate the existing literature for the period from 2009 to 2017 on psychosocial interventions targeting families of children with cancer. We searched the PubMed database using the following combination of keywords: “cancer AND children AND (intervention OR training) AND (mothers OR primary caregivers OR parents OR fathers OR siblings).”

After careful evaluation of 995 papers, 17 full-text papers were found to match our criteria (12 randomized controlled trials and 5 quasi-experimental studies). The quality of the studies was assessed using the Delphi score questionnaire, and the score of the reviewed studies ranged from 3 to 5. The findings suggest that most interventions reduced distress and improved coping strategies among participants. Interventions, mainly cognitive behavioral therapy and problem-solving skills training targeting maternal distress, were associated with improved adjustment outcomes in mothers of children with cancer.

Psychosocial interventions are helpful, and efforts should be made to promote them in a larger scale. Protocols should be implemented to ensure that all parents benefit. Computer-assisted methods may provide additional benefit by improving cancer-related knowledge and cancer-related communication.

Continuing to utilize healthcare as needed during an epidemic outbreak is significant, in general, and especially for cancer patients. Therefore, this study aimed to explore factors associated with health services utilization among breast cancer patients during the coronavirus disease (COVID-19) outbreak.

A cross-sectional online survey was conducted among 151 women with breast cancer. Participants completed measures of perceived health status, perceived susceptibility to COVID-19, anxiety, coping resources, health services utilization (contact with healthcare professionals and cancellation of an appointment to the oncology/hematology clinic), and socio-demographic questionnaires. A multiple hierarchical regression was calculated; contact with healthcare professionals was the dependent variable. In addition, a logistic regression was calculated; cancellation of an appointment to the oncology/hematology clinic because of the COVID-19 was the dependent variable.

Breast cancer patients’ contact with healthcare professionals was lower than their contact prior to the pandemic. A higher extent of contact with healthcare professionals was related to patients’ perception of health as bad/reasonable, lower perceived susceptibility, a lower sense of mastery, and higher social support. In addition, the odds of cancelling an appointment to the oncology/hematology clinic were higher in the presence of additional chronic illnesses and a higher sense of mastery.

The results could provide public health agencies with a more complete picture of the impact of the COVID-19 epidemic among breast cancer patients. This is significant because, in the event that COVID-19 re-emerges, the findings of the current study could help guide public health officials and possibly prevent the future avoidance of health services’ use among this high-risk population.

Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.

The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.

One emotional barrier, “negative emotional reactions” (13 items, Cronbach's α = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's α = 0.85), “belief in avoidance” (5 items, Cronbach's α = 0.86), and “outcome expectancy” (4 items, Cronbach's α = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.

Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.

With people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized.

An integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis.

Seven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of “Performance, symptoms and emotional concerns” and “End-of-life and existential aspects”. Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as “Dignity-related distress” and “Quality of life” were common. However, the results lacked concrete communication outcomes.

The results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

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.

The objectives were to evaluate the, usability, feasibility of use, satisfaction, and safety of the Syqe Inhaler Exo (Syqe Inhaler), a metered dose, Pharmacokinetics-validated, cannabis inhaler device in a cohort of hospitalized patients that were using medical cannabis under license as a part of their ongoing medical treatment.

Before and after inhaling from the Syqe Inhaler, participants were asked to fill a questionnaire regarding pain reduction on a visual analog scale from 0 to 10 and, if relevant, reduction in chemotherapy-induced nausea and vomiting and/or spasticity. A patient satisfaction questionnaire and a usability questionnaire were filled in following the last use. Prescribed treatment included 4 daily doses of 500 μg tetrahydrocannabinol each delivered from 16 mg cannabis flos per inhalation plus up to an additional four SOS (distress code for more doses of cannabis) doses.

Daily cannabis dose consumed during hospitalization with the Syqe Inhaler was 51 mg (20–96) versus 1,000 mg (660-3,300) consumed prehospitalization. Patients were easily trained and continued to use Syqe Inhaler for the duration of their hospitalization (5 [3–7] days). Pain intensity 30–60 minutes following inhalations was reported to be significantly lower than preinhalation 4 [1–5] versus 7 [2–9]). Participants ranked their satisfaction with Syqe Inhaler as 6 (5–7). Three participants reported mild cough, which resolved spontaneously.

Cannabis inhalation by combustion is not feasible for hospitalized patients. The use of Syqe Inhaler during hospitalization yielded high levels of patients and staff satisfaction with no complications.

Dependency on others can compromise self-determination for older persons in the palliative phase in residential care. Family members can support the residents' self-determination but may also jeopardize it. Quality of care (QoC) is linked to respecting the autonomy of the residents and providing opportunities to participate in decision-making. The aim of the study was to provide knowledge about residents' and family members' perceptions of QoC and self-determination and to detect possible differences between their experiences.

This cross-sectional study used an abbreviated version of the questionnaire, Quality from the Patients' Perspective, with additional items about decision-making. Wilcoxon's signed rank test was used to analyze the perception of QoC and to detect differences between residents' and family members' perceptions.

QoC was perceived as lower than preferred in the majority of items and there was a high level of agreement between residents and family members. Lowest mean values in QoC were found in: support when feeling lonely; support when feeling worry, anxiety or fear; and staff's time to talk to the residents. Decision-making in everyday life and in life-changing situations showed that neither residents nor family members trusted staff to know about the residents' preferences.

Broad improvements are needed, especially in psychosocial care. Several of the negative outcomes on QoC and self-determination seem to derive from a focus on practical tasks and the lack of trustful relationships between residents and staff. An early implementation of palliative care, with a focus on what brings quality to each resident's life, could facilitate QoC and self-determination, in both everyday life and at the end of life.

The purpose of this study was to demonstrate effectiveness of an educational training workshop using role-playing to teach medical students in Botswana to deliver bad news.

A 3-hour small group workshop for University of Botswana medical students rotating at the Princess Marina Hospital in Gaborone was developed. The curriculum included an overview of communication basics and introduction of the validated (SPIKES) protocol for breaking bad news. Education strategies included didactic lecture, handouts, role-playing cases, and open forum discussion. Pre- and posttraining surveys assessed prior exposure and approach to breaking bad news using multiple-choice questions and perception of skill about breaking bad news using a 5-point Likert scale. An objective structured clinical examination (OSCE) with a standardized breaking bad news skills assessment was conducted; scores compared two medical student classes before and after the workshop was implemented.

Forty-two medical students attended the workshop and 83% (35/42) completed the survey. Medical students reported exposure to delivering bad news on average 6.9 (SD = 13.7) times monthly, with 71% (25/35) having delivered bad news themselves without supervision. Self-perceived skill and confidence increased from 23% (8/35) to 86% (30/35) of those who reported feeling “good” or “very good” with their ability to break bad news after the workshop. Feedback after the workshop demonstrated that 100% found the SPIKES approach helpful and planned to use it in clinical practice, found role-playing helpful, and requested more sessions. Competency for delivering bad news increased from a mean score of 14/25 (56%, SD = 3.3) at baseline to 18/25 (72%, SD = 3.6) after the workshop (p = 0.0002).

This workshop was effective in increasing medical student skill and confidence in delivering bad news. Standardized role-playing communication workshops integrated into medical school curricula could be a low-cost, effective, and easily implementable strategy to improve communication skills of doctors.

Spiritual care has formed an integral part of palliative care since its inception. People with advanced illnesses, however, frequently report that their spiritual needs are not attended to by their medical care team. The present study examines and describes the impact of a spiritual care training program on practice and cultural change in our Canadian hospice.

A qualitative case study approach was adopted to gather feedback from hospice staff and volunteers using purposive sampling. In-depth interviews were conducted, transcribed, and analyzed using thematic (semantic and latent) analysis.

Our data suggest that the program had a profound personal impact on attendees and contributed to a slight shift in practice patterns in our organization. Using a program not specifically tailored to our local and organizational cultural contexts resulted in some unanticipated challenges such as the range of tensions between personal and cultural boundaries. Although some people criticized parts of the program or questioned the program's value, a general agreement suggests that the program had a positive impact and meaningfully benefited our hospice. “What will happen next?” was the question most frequently voiced by interviewees.

Although the program may not have been a perfect fit for our organization, its use instigated a process of cultural change that unfolds today. The present study suggests that a systematic approach to spiritual care training that includes the concepts of workplace spirituality and sensitive practice offer useful frameworks for the development and implementation of spiritual care training in other institutions.

Provision of bereavement support is an essential component of palliative care service delivery. While bereavement support is integral to palliative care, it is typically insufficiently resourced, under-researched, and not systematically applied. Our aim was to develop bereavement standards to assist palliative care services to provide targeted support to family caregivers.

We employed a multiple-methods design for our study, which included: (1) a literature review, (2) a survey of palliative care service providers in Australia, (3) interviews with national (Australian) and international experts, (4) key stakeholder workshops, and (5) a modified Delphi-type survey.

A total of 10 standards were developed along with a pragmatic care pathway to assist palliative care services with implementation of the standards.

The bereavement standards and care pathway constitute a key initiative in the evolution of bereavement support provided by palliative care services. Future endeavors should refine and examine the impact of these standards. Additional research is required to enhance systematic approaches to quality bereavement care.

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.

Despite the increasing prominence of residential hospices as a place of death and that, in many regards, this specialized care represents a gold standard, little is known about the care experience in this setting. Using qualitative survey data, we examined the positive and negative perceptions of care in hospices and in other prior settings.

Qualitative comments were extracted from the CaregiverVoice survey completed by bereaved caregivers of decedents who had died in 16 residential hospices in Ontario, Canada. On this survey, caregivers reported what was good and bad about the services provided during the last three months of life as separate open-text questions. A constant-comparison method was employed to derive themes from the responses.

A total of 550 caregivers completed the survey, 94% (517) of whom commented on either something good (84%) and/or bad (49%) about the care experience. In addition to residential hospice, the majority of patients represented also received palliative care in the home (69%) or hospital (59%). Overall, most positive statements were about care in hospice (71%), whereas the negative statements tended to refer to other settings (81%). The hospice experience was found to exemplify care that was compassionate and holistic, in a comforting environment, offered by providers who were personable, dedicated, and informative. These humanistic qualities of care and the extent of support were generally seen to be lacking from the other settings.

Our examination of the good and bad aspects of palliative care received is unique in qualitatively exploring palliative care experiences across multiple settings, and specifically that in hospices. Investigation of these perspectives affirmed the elements of care that dying patients and their family caregivers most value and that the hospices were largely effective at addressing. These findings highlight the need for reinforcing these qualities in other end-of-life settings to create comforting and supportive environments.

Despite national guidelines recommending early concurrent palliative care for individuals newly diagnosed with metastatic cancer, few community cancer centers, especially those in underserved rural areas do so. We are implementing an early concurrent palliative care model, ENABLE (Educate, Nurture, Advise, Before Life Ends) in four, rural-serving community cancer centers. Our objective was to develop a “toolkit” to assist community cancer centers that wish to integrate early palliative care for patients with newly diagnosed advanced cancer and their family caregivers.

Guided by the RE-AIM (Reach, Effectiveness–Adoption, Implementation, Maintenance) framework, we undertook an instrument-development process based on the literature, expert and site stakeholder review and feedback, and pilot testing during site visits.

We developed four instruments to measure ENABLE implementation: (1) the ENABLE RE-AIM Self-Assessment Tool to assess reach, adoption, implementation, and maintenance; (2) the ENABLE General Organizational Index to assess institutional implementation; (3) an Implementation Costs Tool; and (4) an Oncology Clinicians' Perceptions of Early Concurrent Oncology Palliative Care survey.

We developed four measures to determine early palliative care implementation. These measures have been pilot-tested, and will be integrated into a comprehensive “toolkit” to assist community cancer centers to measure implementation outcomes. We describe the lessons learned and recommend strategies for promoting long-term program sustainability.

Beginning in 2007, all newly diagnosed cancer patients at the Koo Foundation Sun Yat-Sen Cancer Center (KF–SYSCC) were screened for psychosocial distress. Our social workers, as part of the psychosocial care team (PCT), have engaged in proactive outreach with patients identified as distressed. The goal of the present study was to assess the prevalence of psychosocial distress and the extent of contact between the PCT and distressed patients.

Newly diagnosed patients who were treated at KF–SYSCC between 2007 and 2010 for cancer were eligible if there were at least 100 patients with the same type of cancer. Before treatment began, they were screened with the Pain Scale and the Distress Thermometer (DT) and had the option to specify a desire for help. The rates of distress were analyzed by cancer type and by probable related factors. Information regarding contact with the PCT was retrieved from computerized databases.

Overall, some 5,335 cancer patients representing 12 major cancer types were included in our study. Of these, 1,771 (33.20%) were significantly distressed. By multivariate logistic regression, younger age, female gender, higher pain score, and disease stage, but not cancer type, were found to be associated with higher rates of distress. Among these distressed patients, 628 (36%) had some contact with the PCT.

This Taiwanese study with a large sample size revealed a prevalence rate of psychosocial distress similar to rates found in Western countries. Contact with the PCT was established in only 36% of significantly distressed patients, despite a proactive outreach program. It is very important to have screening results made available in a timely fashion to the psycho-oncology team so that appropriate care can be offered promptly.