BACKGROUND: We performed a systematic literature review and meta-analysis measuring the burden of antibiotic use during end-of-life (EOL) care.
METHODS: We searched PubMed, CINAHL (EBSCO platform), and Embase (Elsevier platform), through July 2019 for studies with the following inclusion criteria in the initial analysis: antibiotic use in the EOL care patients (advanced dementia, cancer, organ failure, frailty or multi-morbidity). If the number of patients in palliative care consultation (PCC) was available, antibiotic use data were pooled to compare the proportion of patients who received antibiotics under PCC compared to those not receiving PCC. Random-effect models were used to obtain pooled mean differences, and heterogeneity was assessed using the I2 value.
RESULTS: Overall, 72 studies met the inclusion criteria and were included in the final review: 22 EOL studies included only patients with cancer; 17 studies included only patients with advanced dementia; and 33 studies included "mixed populations" of EOL patients. Although few studies reported antibiotic using standard metrics (eg, days of therapy), 48 of 72 studies (66.7%) reported antibiotic use in >50% of all patients. When the 3 studies that evaluated antibiotic use in PCC were pooled together, patients under PCC was more likely to receive antibiotics compared to patients not under PCC (pooled odds ratio, 1.73; 95% CI, 1.02-2.93).
CONCLUSIONS: Future studies are needed to evaluate the benefits and harms of using antibiotics for patients during EOL care in diverse patient populations.
Context: The unmet needs of patients with advanced disease are indicative of the patient centredness of healthcare. By tracking unmet needs in clinical practice, palliative interventions are aligned with patient priorities, and clinicians receive support in intervention delivery decisions for patients with overlapping, complex needs.
Objective: Identify tools used in everyday clinical practice for the purpose of identifying and addressing unmet healthcare needs for patients with advanced disease.
Methods: We conducted PubMed and Cumulative Index of Nursing and Allied Health Literature searches to include studies published between 1 January 2008 and 21 April 2020. Three concepts were used in constructing a search statement: (1) patient need, (2) validated instrument and (3) clinical practice. 2313 citations were reviewed according to predefined eligibility, exclusion and inclusion criteria. Data were collected from 17 tools in order to understand how instruments assess unmet need, who is involved in tool completion, the psychometric validation conducted, the tool’s relationship to delivering defined palliative interventions, and the number of palliative care domains covered.
Results: The majority of the 17 tools assessed unmet healthcare needs and had been validated. However, most did not link directly to clinical intervention, nor did they facilitate interaction between clinicians and patients to ensure a patient-reported view of unmet needs. Half of the tools reviewed covered =3 dimensions of palliative care. Of the 17 tools evaluated, 4 were compared in depth, but all were determined to be insufficient for the specific clinical applications sought in this research.
Conclusion: A new, validated tool is needed to track unmet healthcare needs and guide interventions for patients with advanced disease.
AIM/PURPOSE: This integrative review addresses whether the presence and timing of advanced care planning (ACP) with or without a palliative care (PC) consultation affect place of death and use of high-intensity medical care at end-of-life (EOL) in adolescent and young adult and adult cancer patients receiving hematopoietic stem cell transplant (HSCT) therapy.
METHODS AND RESULTS: A literature search was completed in the Scopus and PubMed databases. The search was not restricted by date but was restricted to English language. A total of 1,616 articles were found, and after exclusion of duplicates and irrelevance, 79 articles were available to review. After reviewing inclusion and exclusion criteria, 9 articles related to ACP with HSCT were found, and 4 were eliminated after further review, resulting in 5 viable articles for review related to EOL outcomes. EOL outcomes reviewed were place of death and high-intensity medical care. Factors noted to influence these measures included the presence or absence of ACP, the timing of ACP, and PC consultation. Overall survival also emerged as an EOL outcome affected by ACP.
CONCLUSION: Although there have been many barriers identified to ACP discussions in the HSCT population, the findings from the integrative literature review support the use of early ACP with patients who have hematologic malignancies undergoing HSCT to address patient EOL goals and reduce healthcare utilization at the EOL. The data also suggest that identification of patients who would most benefit from early engagement in ACP may positively impact outcomes.
The purpose of this scoping review is to present an overview of terms found in publications associated with end-of-life care management that can impact decision making by patients, health care providers, and researchers. Connotative terminology and syntax can influence the decision-making approach and process. We examined 49 publications for positive, negative, and neutral connotations. We consistently found negative terminology in the publications. To advance the development of nursing knowledge regarding end-of-life care, researchers should be aware of their biases of terminology and syntax use. We propose modifications to language used in end-of-life care planning models and literature can improve care congruency.
BACKGROUND: The context of care provided in long-term care homes is changing, as an increasing number of older adults are entering long-term care with advance stages of illness and higher care needs. Long-term care homes are quickly becoming the place of death for an increasing number of older adults, despite recent literature identifying inadequate and suboptimal levels of end-of-life care. Within long-term care, healthcare assistants represent 60%-70% of the unregulated workforce and provide 70%-90% of the direct care to residents. Research indicates that a high level of uncertainty exists surrounding the role of healthcare assistants in end-of-life care, with numerous studies reporting the role of healthcare assistants to be 'unclear' with varying levels of responsibilities and autonomy.
OBJECTIVE: The purpose of this scoping review was to explore healthcare assistants' experiences and perspectives of their role in end-of-life care in long-term care.
METHODS: We applied Arksey and O'Malley's methodological framework, with recommendations from Levac and colleagues' guiding principles. Electronic databases and the grey literature were searched for relevant articles. Search concepts included end-of-life care and healthcare assistants. Articles were included in this review if they explored healthcare assistants' experiences or perspectives of providing end-of-life care in long-term care. The peaceful end of life theory by Ruland and Moore (1998) was used to organise data extraction and analysis.
RESULTS: A total of n = 15 articles met the inclusion criteria. The most predominant role-required behaviours reported by healthcare assistants were as follows: psychosocial support to significant others, knows the resident's care wishes and physical care with respect and dignity. The most predominant extra-role behaviours reported by healthcare assistants were as follows: becoming emotionally involved, acting as extended family and ensuring residents do not die alone.
CONCLUSIONS: Findings from this review expanded the concept of end-of-life care by illustrating the role-required and extra-role behaviours healthcare assistants perform when providing end-of-life care in long-term care.
IMPLICATIONS FOR PRACTICE: Findings from this scoping review highlight the numerous behaviours healthcare assistants perform outside their role description in order to provide end-of-life care to dying residents in long-term care. These findings could inform policymakers and managers of long-term care homes.
OBJECTIVE: There is an increasing recognition of the significance of music as a complementary therapy in palliative care. Limited studies exist on how music is used as a coping mechanism by palliative care patients. Therefore, the purpose of this scoping review was to explore the efficacy of music interventions for palliative care.
METHOD: We conducted a literature search between June and November 2019 in the Cumulative Index of Nursing and Allied Health Literature (CINAHL), British Nursing Index (BNI), and PubMed, which includes MEDLINE. The search identified eight articles which met the inclusion and exclusion criteria.
RESULTS: Using thematic analysis, six themes were synthesied to show how music contributes to palliative care. The six themes include Pain management; Relaxation; Happiness and hope; Anxiety and depression management; Enhanced spirituality; and Improved quality of life. These themes reflect the psychological and emotional benefits palliative care patients derive from music therapies.
SIGNIFICANCE OF RESULTS: Music therapy can be an effective psychosocial approach when managing palliative symptoms through its therapeutic effects on physical, psychological, emotional, and spiritual well-being.
BACKGROUND: In recent years there has been increasing attention for the prevalence and prevention of burnout among healthcare professionals. There is unclarity about prevalence of burnout in healthcare professionals providing palliative care and little is known about effective interventions in this area.
AIM: To investigate the prevalence of (symptoms of) burnout in healthcare professionals providing palliative care and what interventions may reduce symptoms of burnout in this population.
DESIGN: A systematic literature review based on criteria of the PRISMA statement was performed on prevalence of burnout in healthcare professionals providing palliative care and interventions aimed at preventing burnout.
DATA SOURCES: PubMed, PsycInfo and Cinahl were searched for studies published from 2008 to 2020. Quality of the studies was assessed using the method of Hawkers for systematically reviewing research.
RESULTS: In total 59 studies were included. Burnout among healthcare professionals providing palliative care ranged from 3% to 66%. No major differences in prevalence were found between nurses and physicians. Healthcare professionals providing palliative care in general settings experience more symptoms of burnout than those in specialised palliative care settings. Ten studies reported on the effects of interventions aimed at preventing burnout. Reduction of one or more symptoms of burnout after the intervention was reported in six studies which were aimed at learning meditation, improving communication skills, peer-coaching and art-therapy based supervision.
CONCLUSION: The range of burnout among healthcare professionals providing palliative care varies widely. Interventions based on meditation, communication training, peer-coaching and art-therapy based supervision have positive effects but long-term outcomes are not known yet.
BACKGROUND: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child's home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home.
METHODS: We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0-18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies.
RESULTS: The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children's mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted.
CONCLUSIONS: Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.
Providing home care to children with complex physical health needs is an emotionally challenging role. Extant literature and documents such as the Cavendish Review (2013) have reported that a large proportion of care for this population is carried out by non-registered staff (support workers). Provision of clinical supervision for nurses working in palliative care is increasing, however, supervision needs of support workers are commonly neglected. This paper sought to synthesise what is known about clinical supervision practices for support workers in paediatric palliative care (PPC). A literature review was conducted in accordance with integrative review guidelines. 315 papers were identified initially, 15 studies were included in this review. Four commonalities were identified: importance of team cohesion, varying degrees of formality, self-awareness and practicalities. Support workers received varying forms of supervision and some facilitators faced organisational difficulties involving staff in supervision. Support workers who received staff support generally appreciated it in recognition that their work is complex and emotionally difficult. This paper highlighted that further research should investigate the efficacy of clinical supervision as a method of reducing stress and burnout for support workers. Any implementation of supervision should involve a considered approach to training and supervision to ensure fidelity.
BACKGROUND: Early palliative care together with standard haematological care for advanced patients is needed worldwide. Little is known about its effect. The aim of the review is to synthesise the evidence on the impact of early palliative care on haematologic cancer patients' quality of life and resource use.
PATIENTS AND METHODS: A systematic review was conducted. The search terms were early palliative care or simultaneous or integrated or concurrent care and haematological or oncohaematological patients. The following databases were searched: PubMed, Embase, Cochrane, CINHAL and Scopus. Additional studies were identified through cross-checking the reference articles. Studies were in the English language, with no restriction for years. Two researchers independently reviewed the titles and abstracts, and one author assessed full articles for eligibility.
RESULTS: A total of 296 studies titles were reviewed. Eight articles were included in the synthesis of the results, two controlled studies provided data on the comparative efficacy of PC interventions, and six one-arm studies were included. Since data pooling and meta-analysis were not possible, only a narrative synthesis of the study results was performed. The quality of the two included comparative studies was low overall. The quality of the six non-comparative studies was high overall, without the possibility of linking the observed results to the implemented interventions.
CONCLUSIONS: Studies on early palliative care and patients with haematological cancer are scarce and have not been prospectively designed. More research on the specific population target, type and timing of palliative care intervention and standardisation of collected outcomes is required.
PROSPERO REGISTRATION NUMBER: CRD42020141322.
BACKGROUND: When curative treatments are no longer available for cancer patients, the aim of treatment is palliative. The emphasis of palliative care is on optimizing quality of life and provided support for patients nearing end of life. However, chemotherapy is often offered as a palliative therapy for patients with advanced cancer nearing death. The purpose of this review was to evaluate the state of the science relative to use of palliative chemotherapy and maintenance of quality of life in patients with advanced cancer who were at end of life.
MATERIALS AND METHODS: Published research from January 2010 to December 2019 was reviewed using PRISMA guidelines using PubMed, Proquest, ISI web of science, Science Direct, and Scopus databases. MeSH keywords including quality of life, health related quality of life, cancer chemotherapy, drug therapy, end of life care, palliative care, palliative therapy, and palliative treatment.
FINDINGS: 13 studies were evaluated based on inclusion criteria. Most of these studies identified that reduced quality of life was associated with receipt of palliative chemotherapy in patients with advanced cancer at the end of life.
CONCLUSION: Studies have primarily been conducted in European and American countries. Cultural background of patients may impact quality of life at end of life. More research is needed in developing countries including Mideastern and Asian countries.
CONTEXT: Care transitions at the end of life are associated with reduced quality of life and negative health outcomes, yet up to half of patients in developed countries experience a transition within the last month of life. A variety of these transitions have been described as 'burdensome' in the literature, however there is currently no consensus on the definition of a burdensome transition.
OBJECTIVES: The purpose of this review is to identify current definitions of 'burdensome transitions' and develop a framework for classifying transitions as 'burdensome' at the end-of-life.
METHODS: A search was conducted in Embase, PubMed, Cochrane Database of Systematic Reviews, Cochrane Controlled Register of Trials, CINAHL and PsychINFO for articles published in English between January 1 2000 and September 28 2019.
RESULTS: A total of thirty-seven articles met inclusion criteria for this scoping review. Definitions of burdensome transitions were characterized by the following features: transition setting trajectory, number of transitions, temporal relationship to end of life, or quality of transitions.
CONCLUSION: Definitions of burdensome transitions varied based on time before death, setting of cohorts, and study population. These definitions can be helpful in identifying and subsequently preventing unnecessary transitions at the end-of-life.
BACKGROUND: The palliative care needs of people with advanced head and neck cancer pose unique complexities due to the impact the illness has on eating, speaking, appearance and breathing. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge.
AIM: To identify and map out the palliative care needs and experiences for people with advanced head and neck cancer.
DESIGN: A scoping literature review following the methods described by the Joanna Briggs Institute.
DATA SOURCES: An electronic search of the literature was undertaken in MEDLINE (Ovid), EMBASE and CINAHL covering the years January 1996 to January 2019.
RESULTS: People with advanced head and neck cancer often had palliative care needs but there was variability in the timing and access to relevant services. A high prevalence of interventions, for example hospital admissions were needed even during the last month of life. This was not necessarily negated with early engagement of palliative care. Dissonance between patients and family carers about information needs and decision-making was an additional complexity. Studies tended to be descriptive in nature, and often involved a single centre.
CONCLUSION: This scoping review demonstrates the complexity of care for people with advanced head and neck cancer and the issues related to the current healthcare systems. Focus on appropriate referral criteria, increased integration and coordination of care and robust evaluation of specific care components seems key. Linkage between research and service design delivery across teams, disciplines and care settings seems pertinent.
Palliative care has been defined as specialized care for patients facing serious illnesses. Despite advancements in the field and studies documenting the effectiveness of early palliative care (PC) interventions in seriously ill patients, the fields of hematologic malignancies and bone marrow transplant still lag behind of a comprehensive framework for early and effective interventions. The aim of this literature review is to analyze and discuss the possible barriers to care and delayed referrals for hematologic malignancies and bone marrow transplant patients. Using the EBSCO and PubMed databases, articles regarding PC among patients with hematologic malignancies and bone marrow transplant were analyzed. There are three main domains with its respective barriers in PC: physicians, patients and caregivers, and the healthcare system. Issues that were identified included the lack of knowledge and misconceptions about PC among physicians, patients, and caregivers, delayed referral of patients with hematologic malignancies, unrealistic treatment expectations, lack of communication between specialties, difficulties with appointment availability, geographical distance between clinics, and lack of insurance coverage for PC services. We suggest possible alternatives including obligatory continuing medical education (CME) credits, loan forgiveness, rotations during residency and fellowship training, use of informational videos and pamphlets to educate patients and caregivers, obligatory early consults despite prognosis, an algorithm to evaluate patient's needs, creating a platform within electronic medical records (EMR) systems shared by specialties, and having PC service in every cancer center. Findings suggest a need for further studies aimed towards implementing solutions to increase the early referral of patients with hematologic malignancies and bone marrow transplantation (BMT) to palliative care.
Limited information is available describing advance care planning (ACP) within correctional facilities, despite its increasing relevance due to the ageing population in prisons and the high rates of complex medical comorbidities. In Western countries, self-determination with respect to making future medical decisions is a human right that prisoners do not lose when they are remanded into custody. ACP enables individuals to plan for their health and personal care so their values, beliefs and preferences are made known to inform future decision-making, for a time when they can no longer communicate their decisions. This paper examines the limited academic literature relating to ACP within prisons to identify barriers and facilitators that influence the uptake of ACP and advance care directive (ACD) documentation. Common themes related to ACP in a correctional setting were extracted and synthesised to produce a high-level analysis of barriers and facilitators influencing ACP uptake for prisoners within a correctional setting.
INTRODUCTION: Both solid organ transplant candidates and recipients and their family caregivers have complex care needs and may benefit from palliative care. But palliative care is not often considered as part of transplant care despite palliative care being promoted as an important component of transplant care both before and after solid organ transplantation. Further, the current state of the science of palliative care in solid organ transplantation has not been well-documented.
OBJECTIVE: To describe the state of the science of palliative care in solid organ transplant and identify gaps in the literature.
METHODS: Four electronic databases were searched using controlled vocabulary words and synonymous free text to find articles on palliative care and solid organ transplant. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and checklist were also used.
RESULTS: Twenty articles were included in the final review for synthesis, 18 of which involved transplants for adults only. Twelve articles described palliative care for patients before transplant, four articles examined palliative care for patients after transplant, primarily at the end-of-life, and four articles described transplant provider perspectives on palliative care. The reviewed evidence suggested that patients could be benefited by palliative care both pre and posttransplant, particularly for symptom management and advance care planning and that transplant providers faced many barriers to implementing palliative care in practice.
DISCUSSION: There is limited research on palliative care following solid organ transplantation, particularly outside of hospice care. Much of the prior research on this topic has described adult patients.
BACKGROUND: Patients receiving palliative care may benefit greatly when their existential or spiritual strengths are fostered. To date however, there has not been a comprehensive literature review of patient and care professional approaches that are available.
AIMS: To describe and synthesise existential or spiritual strength-based approaches within the context of palliative care.
METHODS: Literature search of 2436 articles between January 1999 and March 2019 in Scopus, Web of Science, CINAHL and PsycINFO. Articles were included if they deal with a palliative care situation, focus on the patient, specific existential/spiritual strength, discernible strength approach and an analysis of the workings of that approach. The interpretative synthesis consisted of a thematic analysis of the included articles and an integration of themes.
RESULTS: In the 14 included articles, 5 different strengths were found to be fostered by 16 approaches: (1) Meaning was fostered by: maintaining normalcy, experiencing sanctuaries, reassessing importance and reconstructing positive self; (2) Connection by: opening up, giving/receiving care and envisioning continuation; (3) Agency by: maintaining control, refocusing goals and continuous adaptation; (4) Hope through: setting special targets, imagining alternate outcomes, building a collection and extending wishes; (5) Faith through: living the tradition and relating to a benevolent force. Strengths and approaches are visualised in an overarching analytical framework: 'the Propeller'.
CONCLUSIONS: The constructed Propeller framework can be used to become aware of, apply and further develop approaches to foster existential or spiritual strengths among patients receiving palliative care.
Ensuring burn patients get appropriate care without pursuing futile treatment has always constituted a challenging balance for burn surgeons. Patients with no prospect of cure who eventually die should potentially experience more comfortable and peaceful end-of-life (EoL) care. Recognizing that death for some patients is inevitable and can only be postponed but not avoided would open the way to a more humane comfort care for such patients. Though comfort EoL services are still not universal in burns intensive care units (ICU) and disparities still exist in access, and use of palliative care appears underutilized, its integration in the burns ICU has increased over the past decade with undeniable benefits. Palliative care consultations should be considered in select burn patients for whom survival is highly unlikely.
BACKGROUND: Local radiation therapy (RT) can provide pain relief and reduce bleeding resulting from pleural or peritoneal dissemination of primary tumors. However, the optimal RT exposure dose for such tumors is unclear and the response rate is unknown. In this study, we examined the effectiveness of palliative RT for pleural or peritoneal disseminated tumors to determine the optimal dose in these patients.
METHODS: The data of 22 patients with pleural- or peritoneal-disseminated tumors who were treated with local RT at our institution between 2011 and 2019 were retrospectively reviewed.
RESULTS: Among these patients, 9 (40.9%) had pleural tumors, 13 (59.1%) had peritoneal tumors and 2 had tumors in the peritoneum and umbilicus. The most common primary tumors were lung (22.8%) and pancreatic cancer (18.2%). RT was mainly administered for pain alleviation (72.7%). Three patients (13.6%) received RT for hemostasis. Thirteen patients (59.1%) received a regimen of 30 Gy/10 fractions (fr), with the total dosage for all patients ranging from 27 to 56 Gy. No grade 2 or higher RT-related adverse events occurred. Three and four patients obtained complete and partial responses, respectively. The timing of the measurement of response to pain relief ranged from 0 to 232 (median, 21) days upon completion of RT. Overall response to pain relief occurred in nine of 16 patients (56.3%) with pain before RT. Hemostasis was confirmed in 2 of the 3 patients (66.7%) with bleeding before RT. Twelve of 20 (60%) patients with symptoms before RT responded to RT. Disease-specific survival (DSS) time after RT ranged from 1 to 656 (median, 106) days.
CONCLUSIONS: Prompt palliative administration of RT to patients with advanced disease to alleviate pain from disseminated tumors may achieve therapeutic efficacy.
BACKGROUND: Given the increase in the number of deaths within long-term care facilities (LTCFs), the need for palliative and end-of-life (EOL) care education among such facilities has been increasing. As such, a systematic synthesis of global palliative and EOL care educational approaches and evaluation can aid further educational development.
OBJECTIVE: To synthesise the current literature on palliative and EOL care educational interventions for staff working in LTCFs and identify barriers to, and facilitators of, intervention implementation.
METHODS: The study used an integrative review framework wherein indexed databases, namely, CINAHL, EMBASE, MEDLINE, PsycINFO, Web of Science, Cochrane Library and Japan Medical Abstract Society, were systematically searched for studies published in English and Japanese between 2007 and 2019. Search terms that are related to palliative care, LTCF, and education were combined to increase search sensitivity. The quality of the papers was assessed using Joanna Briggs Institute Critical Appraisal Tools and the Mixed-Methods Appraisal Tool.
RESULTS: A total of 52 studies were included in the review. Our results suggested that although studies in this area and setting have been evolving, suboptimal developmental research and educational practices, global variability and unstandardised approaches to education and lacking viewpoints from service users have remained. Barriers to intervention implementation were also reported due to the specific characteristics of LTCFs, which include high staff turnover and considerable variation in professional skills and experience.
CONCLUSIONS: Given the different LTCF types, systems and policies across each country or region, further research on standardised educational interventions with contextual considerations using large-scale studies with robust methodology is needed to meet the increasing demand for palliative and EOL care among the global ageing population.
IMPLICATIONS FOR PRACTICE: Palliative and EOL care educational intervention for LTCF staff need to include more consideration of context, organisational culture and the user involvement throughout the process of education and research to enhance the quality of care in this complex setting.