Showing papers in "Palliative & Supportive Care in 2017"

A systematic review of religious beliefs about major end-of-life issues in the five major world religions.

Abstract: Objective: The objective of this study was to examine the religious/spiritual beliefs of followers of the five major world religions about frequently encountered medical situations at the end of life (EoL). Method: This was a systematic review of observational studies on the religious aspects of commonly encountered EoL situations. The databases used for retrieving studies were: Ovid MEDLINE In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus. Observational studies, including surveys from healthcare providers or the general population, and case studies were included for review. Articles written from a purely theoretical or philosophical perspective were excluded. Results: Our search strategy generated 968 references, 40 of which were included for review, while 5 studies were added from reference lists. Whenever possible, we organized the results into five categories that would be clinically meaningful for palliative care practices at the EoL: advanced directives, euthanasia and physician-assisted suicide, physical requirements (artificial nutrition, hydration, and pain management), autopsy practices, and other EoL religious considerations. A wide degree of heterogeneity was observed within religions, depending on the country of origin, level of education, and degree of intrinsic religiosity. Significance of results: Our review describes the religious practices pertaining to major EoL issues and explains the variations in EoL decision making by clinicians and patients based on their religious teachings and beliefs. Prospective studies with validated tools for religiosity should be performed in the future to assess the impact of religion on EoL care.

Sleep problems in breast cancer survivors 1-10 years posttreatment

Abstract: Objective:Sleep can affect quality of life (QoL) during cancer survivorship, and symptoms related to poor sleep can be exacerbated We examined the prevalence, severity, and nature of subjective sleep complaints in women surviving stage I–III breast cancer who were 1–10 years posttreatment We also examined the demographic, medical, physical, and psychosocial correlates of poor sleep in these women in order to identify the subgroups that may be most in need of interventionMethod:A total of 200 patients at a comprehensive cancer center who were 1–10 years posttreatment for primary stage I–III breast cancer with no evidence of disease at the time of enrollment completed a battery of questionnaires on demographics, sleep, physical symptoms, mood, cancer-specific fears, and QoLResults:The women had a mean age of 57 years (SD = 100), with a mean of 633 months (SD = 288) of post-cancer treatment Some 38% of these patients were identified as having poor-quality sleep Women with poor sleep took longer to fall asleep, had more awakenings, and acquired 2 hours less sleep per night than those with good sleep They also had a lower QoL, greater severity of pain, more concerns about health and recurrence, and increased vasomotor symptoms (p < 005) Daytime sleepiness and depression were found to be not significantly correlated with sleep qualitySignificance of results:Many breast cancer survivors had severe subjective insomnia, and several breast cancer survivor subgroups were identified as having members who might be most in need of sleep-improvement interventions Addressing physical symptoms (eg, vasomotor symptoms and pain) and providing education about the behavioral, social, environmental, and medical factors that affect sleep could result in substantial improvement in the life course of breast cancer survivors

Effect of dignity therapy on end-of-life psychological distress in terminally ill Portuguese patients: A randomized controlled trial.

Abstract: Objective: Dignity therapy (DT) is a brief form of psychotherapy developed for patients living with a life-limiting illness that has demonstrated efficacy in treating several dimensions of end-of-life psychological distress. Our aim was to determine the influence of DT on demoralization syndrome (DS), the desire for death (DfD), and a sense of dignity (SoD) in terminally ill inpatients experiencing a high level of distress in a palliative care unit. Method: A nonblinded phase II randomized controlled trial was conducted with 80 patients who were randomly assigned to one of two groups: the intervention group (DT + standard palliative care [SPC]) or the control group (SPC alone). The main outcomes were DS, DfD, and SoD, as measured according to DS criteria, the Desire for Death Rating Scale, and the Patient Dignity Inventory (PDI), respectively. All scales were assessed at baseline (day 1) and at day 4 of follow-up. This study is registered with http://www.controlled-trials.com/ISRCTN34354086. Results: Of the 80 participants, 41 were randomized to DT and 39 to SPC. Baseline characteristics were similar between the two groups. DT was associated with a significant decrease in DS compared with SPC (DT DS prevalence = 12.1%; SPC DS prevalence = 60.0%; p < 0.001). Similarly, DT was associated with a significant decrease in DfD prevalence (DT DfD prevalence = 0%; SPC DfD prevalence = 14.3%; p = 0.054). Compared with participants allocated to the control group, those who received DT showed a statistically significant reduction in 19 of 25 PDI items. Significance of results: Dignity therapy had a beneficial effect on the psychological distress encountered by patients near the end of life. Our research suggests that DT is an important psychotherapeutic approach that should be included in clinical care programs, and it could help more patients to cope with their end-of-life experiences.

Post-intensive care syndrome symptoms and health-related quality of life in family decision-makers of critically ill patients.

Abstract: ObjectiveFamily members of critically ill patients can suffer symptoms of post-intensive care syndrome-family (PICS-F), including anxiety, depression, and posttraumatic stress disorder (PTSD) with a diminished quality of life. Our aim was to examine the relationship between coping strategies used by family decision-makers (FDMs) of critically ill patients and the severity of PICS-F symptoms and to examine the relationship between FDM PICS-F symptoms and health-related quality of life (HRQOL).MethodA single-center, prospective, longitudinal descriptive study was undertaken of FDMs of intensive care unit (ICU) patients admitted to a large tertiary care hospital. PICS-F symptoms and coping strategy use were measured upon ICU admission (T1), 30 days (T2) after ICU admission, and 60 days (T3) after ICU admission. HRQOL was measured by the Short Form-36 version 2 at T1 and T3.ResultsWe found a significant prevalence of anxiety (45.8%), depression (25%), and PTSD (11.1%) symptoms among FDMs over the course of the study. The patient mortality rate in our sample was 50%. The HRQOL mental summary score in FDMs was low at T1 and decreased to M = 41.72 (standard deviation = 12.47) by T3. Avoidant coping demonstrated moderate relationships with PTSD symptoms and anxiety at T3. A previous history of anxiety, depression, or PTSD was a significant predictor of PICS-F symptom severity and prevalence. PICS symptom severity at T3 explained 75% of the variance in HRQOL mental summary score.Significance of resultsThis study describes a significant prevalence of PICS-F symptoms in FDMs with a diminished mental HRQOL.

Palliative care during the final week of life of older people in nursing homes: A register-based study

Abstract: Objective: Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes. Method: Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics. Results: The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place. Significance of results: There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.

Meaning of life, representation of death, and their association with psychological distress

Abstract: Objective:This paper presents a two-phase cross-sectional study aimed at examining the possible mitigating role of perceived meaning of life and representation of death on psychological distress, anxiety, and depression.Method:The first phase involved 219 healthy participants, while the second encompassed 30 cancer patients. Each participant completed the Personal Meaning Profile (PMP), the Testoni Death Representation Scale (TDRS), the Hospital Anxiety and Depression Scale (HADS), and the Distress Thermometer (DT). The primary analyses comprised (1) correlation analyses between the overall scores of each of the instruments and (2) path analysis to assess the indirect effect of the PMP on DT score through anxiety and depression as determined by the HADS.Results:The path analysis showed that the PMP was inversely correlated with depression and anxiety, which, in turn, mediated the effect on distress. Inverse correlations were found between several dimensions of the PMP, the DT, and the HADS–Anxiety and HADS–Depression subscales, in both healthy participants and cancer patients. Religious orientation (faith in God) was related to a stronger sense of meaning in life and the ontological representation of death as a passage, rather than annihilation.Significance of Results:Our findings support the hypothesis that participants who represent death as a passage and have a strong perception of the meaning of life tend to report lower levels of distress, anxiety, and depression. We recommend that perceived meaning of life and representation of death be more specifically examined in the cancer and palliative care settings.

The influence of psychological factors on the burden of caregivers of patients with advanced cancer: Resiliency and caregiver burden.

Abstract: Objective:The aim of our study was to identify the influence of such psychological factors as emotional intelligence and perceived competence on caregiver burden in those who care for patients with advanced cancer. METHOD A total of 50 informal caregivers completed self-report assessments of resilience, perceived competence, emotional regulation, positive aspects of care, emotional distress, and burden. We conducted a quantitative study with a cross-sectional design. Descriptive statistics were obtained. Associations between the different variables were assessed using nonparametric and multiple regression analyses. RESULTS Participants were mainly female (88%) and had an average of 20 months of caregiving. Their mean age was 47 years (range = 20-79). More than half of scored high on resilience, positive aspects of caring, and emotional distress, moderately on perceived competence, and low on burden. Most caregivers used cognitive restructuring and social support as coping strategies. Inverse negative correlations were observed among emotional distress, emotional state, and burden with perceived competence and positive aspects of caring (p < 0.05). Significant differences were obtained for emotional distress, cognitive restructuring, and resiliency. Multiple regression analyses demonstrated that perceived competence, resiliency, and positive aspects of caring were the main predictors of burden. SIGNIFICANCE OF RESULTS Resilience, perceived competence, emotional regulation, and positive aspects of care constitute protective factors against caregiver burden. Taken together, these aspects should be promoted by the healthcare staff in order to facilitate caregiver adaptation and well-being.

Music therapy for palliative care: A realist review

Abstract: Objective: Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. Method: We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works. Results: A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation. Significance of results: Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.

Sleep disturbances in caregivers of patients with advanced cancer: A systematic review.

Abstract: Objective: Sleep disturbances are a common issue for those who provide informal care to someone with a life-limiting condition. The negative consequences of poor sleep are well documented. The purpose of the present study was to determine the sleep patterns of caregivers of patients with advanced cancer. Method: An extensive systematic review of studies reporting empirical sleep data was undertaken in 2015 in accordance with the PRISMA Statement. A total of eight electronic databases were searched, with no date restrictions imposed. Additionally, a search of the bibliographies of the studies identified during the electronic search was conducted. Search terms included: “sleep,” “insomnia,” “sleep disturbance,” “circadian rhythm,” “caregiver,” “carer,” “advanced cancer,” “palliative cancer,” and MESH suggestions. The inclusion criteria required studies to be in English and to report primary qualitative and/or quantitative research that examined sleep in caregivers of patients with advanced cancer. Unpublished studies, conference papers, and dissertations were excluded. Results: Overall, 10 studies met the inclusion criteria and were included in the review. Two major findings emerged from the data synthesis. First, at least 72% of caregivers reported moderate to severe sleep disturbance as measured by the Pittsburgh Sleep Quality Index. Second, objective measurement of caregivers' sleep identified that some caregivers experienced up to a 44% reduction in their total sleep time compared to the recommended eight hours. Significance of Results: Reduction in total sleep time appears to be the biggest issue facing caregivers' sleep. Future studies need to explore the specific factors that cause these sleep disturbances and thus help to identify interventions to optimize sleep.

Bereavement support standards and bereavement care pathway for quality palliative care

Abstract: Objective: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.Method: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.Results:A total of 10 standards were developed along with a pragmatic care pathway to assist palliative care services with implementation of the standards.Significance of results: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.

Experiences of security and continuity of care: Patients' and families' narratives about the work of specialized palliative home care teams.

Abstract: Background:: Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care. Objective:: Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC). Method:: A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes. Results:: Two themes were constructed through thematic analysis: (1) security (“They are always available,” “I get the help I need quickly”); and (2) continuity of care (“They know me/us, our whole situation and they really care”). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions. Significance of results:: Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool.

Abstract: Objective Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. Method The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6-8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. Results A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as "knowing what to expect in the future," "knowing who to contact if concerned," and "equipment to help care." The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. Significance of results The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.

Increasing access to care for young adults with cancer: Results of a quality-improvement project using a novel telemedicine approach to supportive group psychotherapy.

Abstract: Objective: Young adults with cancer experience high levels of psychological distress. Group interventions for cancer patients have been effective in reducing levels of psychological distress but suffer from high levels of attrition and serve a limited geographic area. In a quality-improvement project, we converted an existing in-person support group to a telemedicine format in the hopes of improving attendance and reducing geographic disparities in access to care. Method: Eight young adults (18–40 years) with cancer were recruited from across Colorado. Participants received a tablet equipped with Wi-Fi and downloaded an HIPAA-compliant video-conferencing application. Participants attended six weekly supportive psychotherapy sessions. Results: Participants found the group to be beneficial: the technology worked, they enjoyed the group format, and they would recommend it to others. The novel treatment interface allowed for low attrition rates due to the flexibility of a patient's location during the intervention. It allowed for provision of services to a geographically diverse population of medically ill young adults, as participants lived an average of 148 miles from the cancer center (range = 25–406 miles). Significance of results: Internet-based mental health care is an area of growing interest for providers, but few studies have evaluated its efficacy in patients with cancer, and even fewer in young adults with cancer. Incorporating technological advances into clinical practice will increase access to care, reduce geographic health disparities, and provide more consistent services.

Association between level of exposure to death and dying and professional quality of life among palliative care workers.

Abstract: Background:Exposure to the death and dying of others is an anxiety-provoking condition that can contribute to psychological stress. However, the results of empirical studies that evaluated work-related outcomes among physicians and nurses with repeated exposure to dying patients are not consistent. OBJECTIVE Our aim was to evaluate whether a high level of exposure to death and dying (LED) can increase the risk for poor professional quality of life (ProQoL) in most healthcare workers, but it can also improve ProQoL in a subset of healthcare workers with specific characteristics. METHOD We employed a cross-sectional survey designed to better understand the role of LED as a predictor of ProQoL among healthcare workers. SETTING AND PARTICIPANTS Comparison of physicians and nurses with high LED (home-based palliative care units) with a matched group of physicians and nurses with low LED (primary care units) and evaluation of possible interaction effects among LED, death anxiety (DA), and engagement as predictors of ProQoL. RESULTS The final sample included 110 questionnaires from the high-LED group (response rate = 39%) and 131 from the low-LED (response rate = 24%) group. Workers with high LED reported an increased level of compassion satisfaction (CS) and low to moderate levels of burnout (BU) and secondary traumatic stress (STS), with no significant differences with respect to other healthcare providers. Although levels of CS, STS, and BU did not differ between groups, a univariate MANOVA revealed that the interaction effect of LED × Engagement reduced levels of CS and that the interaction effect of LED × DA increased STS among workers with high LED. SIGNIFICANCE OF RESULTS LED was significantly correlated with ProQoL among healthcare workers with high LED due to the reported interaction effect. These findings imply, for the first time, that there is a possible correlation between engagement and the risk for poor ProQoL among workers with high LED. Further research is essential to gain a better understanding of this issue.

Development and validation of the Palliative Care Knowledge Scale (PaCKS)

Abstract: Objective The purpose of this study was to develop a reliable and valid scale that broadly measures knowledge about palliative care among non-healthcare professionals Method An initial item pool of 38 true/false questions was developed based on extensive qualitative and quantitative pilot research The preliminary items were tested with a community sample of 614 adults aged 18-89 years as well as 30 palliative care professionals The factor structure, reliability, stability, internal consistency, and validity of the 13-item Palliative Care Knowledge Scale (PaCKS) were assessed Results The results of our study indicate that the PaCKS meets or exceeds the standards for psychometric scale development Significance of results Prior to this study, there were no psychometrically evaluated scales with which to assess knowledge of palliative care Our study developed the PaCKS, which is valid for assessing knowledge about palliative services in the general population With the successful development of this instrument, new research exploring how knowledge about palliative care influences access and utilization of the service is possible Prior research in palliative care access and utilization has not assessed knowledge of palliative care, though many studies have suggested that knowledge deficits contribute to underutilization of these services Creating a scale that measures knowledge about palliative care is a critical first step toward understanding and combating potential barriers to access and utilization of this life-improving service

Functional evaluation of treatment of chronic disease: Validity and reliability of the Turkish version of the Spiritual Well-Being Scale.

Abstract: Objective: This study was conducted for the purpose of adapting the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale (FACIT–Sp) for the Turkish context and determining its validity and reliability. Method: In 2016, a convenience sample of 137 cancer patients from Malatya State Hospital completed a structured questionnaire, which provided demographic characteristics, and the FACIT–Sp–12 for patients with cancer. The obtained data were assessed using Cronbach's alpha reliability coefficient (α), Pearson's product-moment correlation coefficient (r), factor analysis, Bartlett's test of sphericity, and the Kaiser–Meyer–Olkin (KMO) measure of sampling adequacy. Results: The result of the KMO test was determined to be 0.827 and that of Bartlett's test 988.692, and both were observed to be significant at a level of p < 0.001. The value of Cronbach's α for the Spiritual Well-Being Scale (SWBS) was determined to be 0.87, and the α values for the SWBS subgroups ranged from 0.78 to 0.93. Our analysis determined that the factors had initial eigenvalues above 1, and that they accounted for 61.61% of the total variance. Significance of results: Our study determined that the Turkish version of the FACIT–Sp has validity and reliability and can be used in Turkish society. We believe that the scale can be used safely in determining convenient care and in planning individual educational programs to enhance patients' spiritual well-being.

Delirium in the intensive care setting: A reevaluation of the validity of the CAM–ICU and ICDSC versus the DSM–IV–TR in determining a diagnosis of delirium as part of the daily clinical routine

Abstract: Background In the intensive care setting, delirium is a common occurrence that comes with subsequent adversities. Therefore, several instruments have been developed to screen for and detect delirium. Their validity and psychometric properties, however, remain controversial. Method In this prospective cohort study, the Confusion Assessment Method for the Intensive Care Unit (CAM-ICU) and the Intensive Care Delirium Screening Checklist (ICDSC) were evaluated versus the DSM-IV-TR in the diagnosis of delirium with respect to their validity and psychometric properties. Results Out of some 289 patients, 210 with matching CAM-ICU, ICDSC, and DSM-IV-TR diagnoses were included. Between the scales, the prevalence of delirium ranged from 23.3% with the CAM-ICU, to 30.5% with the ICDSC, to 43.8% with the DSM-IV-TR criteria. The CAM-ICU showed only moderate concurrent validity (Cohen's κ = 0.44) and sensitivity (50%), but high specificity (95%). The ICDSC also reached moderate agreement (Cohen's κ = 0.60) and sensitivity (63%) while being very specific (95%). Between the CAM-ICU and the ICDSC, the concurrent validity was again only moderate (Cohen's κ = 0.56); however, the ICDSC yielded higher sensitivity and specificity (78 and 83%, respectively). Significance of results In the daily clinical routine, neither the CAM-ICU nor the ICDSC, common tools used in screening and detecting delirium in the intensive care setting, reached sufficient concurrent validity; nor did they outperform the DSM-IV-TR diagnostic criteria with respect to sensitivity or positive prediction, but they were very specific. Thus, the non-prediction by the CAM-ICU or ICDSC did not refute the presence of delirium. Between the CAM-ICU and ICDSC, the ICDSC proved to be the more accurate instrument.

Aligning guidelines and medical practice: Literature review on pediatric palliative care guidelines.

Abstract: Objective: Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines. Method: To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies. Results: Concerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams. Significance of results: Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.

Association between burnout and cortisol secretion, perceived stress, and psychopathology in palliative care unit health professionals.

Abstract: The study is part of a doctoral dissertation and was supported by the I + D Project (no. PSI2010–15780) of the Spanish Ministry of Science and Innovation.

A systematic review of instruments assessing dimensions of distress among caregivers of adult and pediatric cancer patients.

Abstract: Objective: Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools. This review aimed to determine the availability of cancer caregiver instruments, the variation of instruments between different domains of distress, and that between adult and pediatric cancer patient populations. Method: A literature search was conducted using various databases from 1937 to 2013. Original articles on instruments were extracted separately if not included in the original literature search. The instruments were divided into different areas of caregiver distress and into adult versus pediatric populations. Psychometric data were also evaluated. Results: A total of 5,541 articles were reviewed, and 135 articles (2.4%) were accepted based on our inclusion criteria. Some 59 instruments were identified, which fell into the following categories: burden ( n = 26, 44%); satisfaction with healthcare delivery ( n = 5, 8.5%); needs ( n = 14, 23.7%); quality of life ( n = 9, 15.3%); and other issues ( n = 5, 8.5%). The median number of items was 29 (4–125): 20/59 instruments (33.9%) had ≤20 items; 13 (22%) had ≤20 items and were psychometrically sound, with 12 of these 13 (92.3%) being self-report questionnaires. There were 44 instruments (74.6%) that measured caregiver distress for adult cancer patients and 15 (25.4%) for caregivers of pediatric patients. Significance of results: There is a significant number of cancer caregiver instruments that are self-reported, concise, and psychometrically sound, which makes them attractive for further research into their clinical use, outcomes, and effectiveness.

How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals—A nationwide survey

Abstract: Objective: The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extrem ...

Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home.

Abstract: Objective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

Development of the Bereavement Risk Inventory and Screening Questionnaire (BRISQ): Item generation and expert panel feedback.

Abstract: Objective: Following the loss of a loved one to cancer, a significant subset of bereaved family members are at heightened risk for mental and physical health problems; however, these family members often “fall through the cracks” of the healthcare system. A brief, clinically useful self-report bereavement risk-screening tool could facilitate more effective identification of family members in need of psychosocial support before and after a cancer loss. Thus, the purpose of this study was to develop and refine the Bereavement Risk Inventory and Screening Questionnaire (BRISQ), a self-report bereavement screening tool, and to assess its utility using feedback from bereavement experts. Method: Quantitative and qualitative feedback from a panel of 15 clinical and research experts in bereavement was obtained through an online survey to identify the most clinically useful items and understand expert opinion on bereavement screening. Results: The qualitative and quantitative feedback were synthesized, resulting in a 22% reduction of the item pool. While there was a general consensus between experts on the most clinically useful risk factors for bereavement-related mental health challenges and on the utility of screening, they also offered feedback on language and formatting that guided substantial revisions to the BRISQ. Significance of results: These findings were utilized to refine the BRISQ in preparation for a second study to obtain family member feedback on the measure. By incorporating both expert and family member feedback, the intention is to create a screening tool that represents top clinical and research knowledge in bereavement in a way that effectively addresses barriers to care.

Progressive muscle relaxation as a supportive intervention for cancer patients undergoing chemotherapy: A systematic review.

Abstract: Background: Many cancer patients use a wide variety of techniques to improve their physical and mental well-being, including relaxation therapy and, specifically, Progressive Muscle Relaxation (PMR). However, there is no strong evidence that supports the efficacy of this technique. Objective: Our aim was to review the evidence regarding the use of PMR as a supportive intervention for cancer patients undergoing chemotherapeutic treatment. Method: Six databases were electronically searched: AMED, the Cochrane Library, MEDLINE, PsychINFO, Scopus, and the Web of Science. After removing duplicates, 700 publications were screened and 57 identified as potentially relevant. The flow of information from record identification to study inclusion was conducted in accordance with the PRISMA statement. Original articles published in peer-reviewed journals that studied the use of PMR as an intervention, were randomized or included a matched control group, and that included patients receiving chemotherapy were included. Studies that combined PMR with other interventions were excluded. The methodological quality of included trials was assessed using the Jadad Scale and the CONSORT guidelines. Results: A total of 5 of the 57 papers fulfilled the preset criteria and were included in our systematic review. Our findings indicate that PMR might improve comfort and reduce the anxiety levels and side effects caused by chemotherapy, with the exception of vomiting. Nonetheless, the quality of all the included studies was extremely low. Significance of results: There is evidence that PMR might have a few benefits for patients undergoing chemotherapy. Still, the small number of studies included and their poor quality limit the significance of our results. Despite the fact that pharmaceutical approaches for controlling side effects might be reaching their full potential and that there might be further usefulness for such integrative treatments as PMR, the need to run more high-quality trials testing the efficacy of this technique is warranted before suggesting its adoption as part of standard cancer care.

Frequency of unsafe storage, use, and disposal practices of opioids among cancer patients presenting to the emergency department.

Abstract: OBJECTIVE: Approximately 75% of prescription opioid abusers obtain the drug from an acquaintance, which may be a consequence of improper opioid storage, use, disposal, and lack of patient education. We aimed to determine the opioid storage, use, and disposal patterns in patients presenting to the emergency department (ED) of a comprehensive cancer center. METHOD: We surveyed 113 patients receiving opioids for at least 2 months upon presenting to the ED and collected information regarding opioid use, storage, and disposal. Unsafe storage was defined as storing opioids in plain sight, and unsafe use was defined as sharing or losing opioids. RESULTS: The median age was 53 years, 55% were female, 64% were white, and 86% had advanced cancer. Of those surveyed, 36% stored opioids in plain sight, 53% kept them hidden but unlocked, and only 15% locked their opioids. However, 73% agreed that they would use a lockbox if given one. Patients who reported that others had asked them for their pain medications (p = 0.004) and those who would use a lockbox if given one (p = 0.019) were more likely to keep them locked. Some 13 patients (12%) used opioids unsafely by either sharing (5%) or losing (8%) them. Patients who reported being prescribed more pain pills than required (p = 0.032) were more likely to practice unsafe use. Most (78%) were unaware of proper opioid disposal methods, 6% believed they were prescribed more medication than required, and 67% had unused opioids at home. Only 13% previously received education about safe disposal of opioids. Overall, 77% (87) of patients reported unsafe storage, unsafe use, or possessed unused opioids at home. SIGNIFICANCE OF RESULTS: Many cancer patients presenting to the ED improperly and unsafely store, use, or dispose of opioids, thus highlighting a need to investigate the impact of patient education on such practices. Language: en

Specialized palliative care in advanced cancer: What is the efficacy? A systematic review.

Abstract: Objective: Due to the multiple physical, psychological, existential, and social symptoms involved, patients with advanced cancer often have a reduced quality of life (QoL), which requires specialized palliative care (SPC) interventions. The primary objective of the present systematic review was to review the existing literature about SPC and its effect on QoL, on physical and psychological symptoms, and on survival in adult patients with advanced cancer. Method: We utilized a search strategy based on the PICO (problem/population, intervention, comparison, and outcome) framework and employed terminology related to cancer, QoL, symptoms, mood, and palliative care. The search was performed in Embase, PubMed, and the Cochrane Central Register of Controlled Trials. Selected studies were analyzed and categorized according to methods, results, quality of evidence, and strength of recommendation. Results: Six randomized controlled trials (RCTs) were selected for analysis (out of a total of 1,115 studies). Two other studies were found by hand search, one of which was only published in conference abstract form. The RCTs differed in terms of aims, interventions, control groups, and outcomes; however, the primary aim of all of them was to investigate the effect of SPC on patient QoL. Five studies found improved QoL in the intervention group. Physical symptom intensity decreased in two studies, and three studies found improved mood in the intervention group. However, physical and psychological symptoms were secondary outcomes in these studies. Survival was improved in two studies. All the studies offered generalizability, but the level of evidence validity varied among them. Significance of results: Due to several methodological limitations, the evidence offered in these studies ranged from low to high. The evidence in this field of study in general is still nascent, but there is growing support for the utilization of SPC to improve the quality of life of adult patients with advanced cancer. The evidence that SPC reduces physical and psychological symptoms is moderate, while the evidence that it prolongs survival is low.

Cultural influences upon advance care planning in a family-centric society.

Abstract: Objective: Advanced care plans (ACPs) are designed to convey the wishes of patients with regards to their care in the event of incapacity. There are a number of prerequisites for creation of an effective ACP. First, the patient must be aware of their condition, their prognosis, the likely trajectory of the illness, and the potential treatment options available to them. Second, patient input into ACP must be free of any coercive factors. Third, the patient must be able to remain involved in adapting their ACP as their condition evolves. Continued use of familial determination and collusion within the local healthcare system, however, has raised concerns that the basic requirements for effective ACP cannot be met. Method: To assess the credibility of these concerns, we employed a video vignette approach depicting a family of three adult children discussing whether or not to reveal a cancer diagnosis to their mother. Semistructured interviews with 72 oncology patients and 60 of their caregivers were conducted afterwards to explore the views of the participants on the different positions taken by the children. Results: Collusion, family-centric decision making, adulteration of information provided to patients, and circumnavigation of patient involvement appear to be context-dependent. Patients and families alike believe that patients should be told of their conditions. However, the incidence of collusion and familial determination increases with determinations of a poor prognosis, a poor anticipated response to chemotherapy, and a poor premorbid health status. Financial considerations with respect to care determinations remain secondary considerations. Significance of results: Our data suggest that ACPs can be effectively constructed in family-centric societies so long as healthcare professionals continue to update and educate families on the patient's situation. Collusion and familial intervention in the decision-making process are part of efforts to protect the patient from distress and are neither solely dependent on cultural nor an “all-or-nothing” phenomenon. The response of families are context-dependent and patient-specific, weighing the patient's right to know and prepare and the potential distress it is likely to cause. In most cases, the news is broken gently over time to allow the patient to digest the information and for the family to assess how well they cope with the news. Furthermore, the actions of families are dependent upon their understanding of the situation, highlighting the need for continued engagement with healthcare professionals.

Palliative care for terminally ill patients in the intensive care unit: Systematic review and metaanalysis.

Abstract: Objective: The purpose of our systematic review was to determine whether the introduction of palliative care (PC) teams reduces length of stay and/or mortality for terminally ill patients (TIPs) in an intensive care unit (ICU). Method: We hoped to examine studies that compared TIPs in an ICU who received end-of-life care following implementation of a PC team (intervention group) to those who received care where PC teams had not yet been introduced (control group). We searched MEDLINE via PubMed, LILACS, Scopus, Embase, and Cochrane CENTRAL (search conducted in December of 2015) without language restrictions. Our outcome measures were length of stay in an ICU, presented as an average difference with a corresponding 95% confidence interval (CI 95%), and mortality in the ICU, presented as a risk ratio with a corresponding CI 95%. Two of our authors independently extracted all of the data. Results: Of the 399 publications identified, 27 were selected for full-text analysis and 19 were excluded, leaving 8 articles for inclusion, which involved a total of 7,846 patients. A metaanalysis of mortality in the ICU was conducted with four studies. Lower mortality was found in the intervention group: risk ratio = 0.78 (CI 95% = 0.70–0.87), p < 0.00001, I 2 = 18%. Length of stay in the ICU was presented as a mean and standard deviation in four studies, and the result was a reduction of ~2.5 days in the length of stay with application of the intervention: mean = –2.44 days (CI 95% = –4.41 to –0.48), p = 0.01, I 2 = 86%. Significance of results: Introduction of palliative care teams can reduce mortality rates in the ICU, and perhaps shorten length of stay in the ICU for terminally ill patients.

Effects of hospital palliative care on health, length of stay, and in-hospital mortality across intensive and non-intensive-care units: A systematic review and metaanalysis.

Abstract: Objective: Hospital palliative care has been shown to improve quality of life and optimize hospital utilization for seriously ill patients who need intensive care. The present review examined whether hospital palliative care in intensive care (ICU) and non-ICU settings will influence hospital length of stay and in-hospital mortality. Method: A systematic search of CINAHL/EBSCO, the Cochrane Library, Google Scholar, MEDLINE/Ovid, PubMed, and the Web of Science through 12 October 2016 identified 16 studies that examined the effects of hospital palliative care and reported on hospital length of stay and in-hospital death. Random-effects pooled odds ratios and mean differences with corresponding 95% confidence intervals were estimated. Heterogeneity was measured by the I 2 test. The Grading of Recommendations Assessment, Development, and Evaluation (GRADE) system was utilized to assess the overall quality of the evidence. Results: Of the reviewed 932 articles found in our search, we reviewed the full text of 76 eligible articles and excluded 60 of those, which resulted in a final total of 16 studies for analysis. Five studies were duplicated with regard to outcomes. A total of 18,330 and 9,452 patients were analyzed for hospital length of stay and in-hospital mortality from 11 and 10 studies, respectively. Hospital palliative care increased mean hospital length of stay by 0.19 days (pooled mean difference = 0.19; 95% confidence interval [CI 95%] = –2.22–2.61 days; p = 0.87; I 2 = 95.88%) and reduced in-hospital mortality by 34% (pooled odds ratio = 0.66; CI 95% = 0.52–0.84; p < 0.01; I 2 = 48.82%). The overall quality of evidence for both hospital length of stay and in-hospital mortality was rated as very low and low, respectively. Significance of results: Hospital palliative care was associated with a 34% reduction of in-hospital mortality but had no correlation with hospital length of stay.

The meaning and experience of bereavement support: A qualitative interview study of bereaved family caregivers

Abstract: Objective: Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some—though not all—caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support. Method: This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3–9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed. Results: The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the “personal” character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support. Significance of results: Systematic pre-bereavement planning and careful communication about the services offered by palliative care bereavement support centers may improve receipt of support among bereaved family caregivers in need.