Palliative Care in the Greater China Region: A Systematic Review of Needs,Models, and Outcomes

ContextThere is rapidly increasing need for palliative care in Greater China because of rapidly aging populations.ObjectivesThis study aimed to systematically review and appraise evidence for palliative care needs, models of care, interventions, and outcomes in Greater China.MethodsFour databases (MEDLINE, EMBASE, CINAHL, and PsycINFO) were searched, with hand searching of local journals and databases. Narrative synthesis was applied to the qualitative and quantitative evidence.ResultsNineteen qualitative studies and 47 quantitative studies were retained. With respect to care needs, nine themes were synthesized: pain control, reduced aggressive end-of-life care, truth telling, physical, emotional, and spiritual supports, and achieving preferred place of care/death. Informal caregivers expressed their needs for education and burden reduction. Health care professionals called for training and national policy support. Twenty-four studies evaluated interventions, mostly among patients with advanced cancer. Positive effects were suggested for improvements in quality of life, pain, anxiety and depression, readmission rate, and costs. Models of care evaluated were mostly specialist palliative care delivered in various settings (hospitals, residential care, and home). Outcome measures used were grouped into six categories of construct: quality of life, pain, physical assessment, psychospiritual assessment, quality of care, and implementation assessment. Limited rigorous randomized controlled trials are available to document intervention outcomes, and some problems (such as high attrition rates) reduced the strength of the evidence.ConclusionPalliative care services within Greater China should pay more attention to management of nonmalignant disease and to integration into primary services. Policy support is key to establishing culturally appropriate person-centered services.     

Impact of Specialized Pediatric Palliative Care: A Systematic Review

ContextSpecialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed.ObjectiveThe objective of this study was to assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes.MethodsWe performed a Systematic Review following Cochrane methods. Data sources: Medline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018. Study selection/data extraction: We included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria.ResultsTwenty-four studies were included in qualitative synthesis: one nonrandomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had one or more area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life scores in all four studies that assessed this outcome. No other outcome showed this consistency.ConclusionReceiving SPPC was associated with better child quality of life. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed.     

Clinical Aspects of Palliative Sedation in Prospective Studies. A Systematic Review

ContextNear the end of life when patients experience refractory symptoms, palliative sedation may be considered as a last treatment. Clinical guidelines have been developed, but they are mainly based on expert opinion or retrospective chart reviews. Therefore, evidence for the clinical aspects of palliative sedation is needed.ObjectivesTo explore clinical aspects of palliative sedation in recent prospective studies.MethodsSystematic review was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and registered at PROSPERO. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014–December 2019), combining sedation, palliative care, and prospective. Article quality was assessed.ResultsTen prospective articles were included, involving predominantly patients with cancer. Most frequently reported refractory symptoms were delirium (41%–83%), pain (25%–65%), and dyspnea (16%–59%). In some articles, psychological and existential distress were mentioned (16%–59%). Only a few articles specified the tools used to assess symptoms. Level of sedation assessment tools were the Richmond Agitation Sedation Scale, Ramsay Sedation Scale, Glasgow Coma Scale, and Bispectral Index monitoring. The palliative sedation practice shows an underlying need for proportionality in relation to symptom intensity. Midazolam was the main sedative used. Other reported medications were phenobarbital, promethazine, and anesthetic medication—propofol. The only study that reported level of patient's discomfort as a palliative sedation outcome showed a decrease in patient discomfort.ConclusionAssessment of refractory symptoms should include physical evaluation with standardized tools applied and interviews for psychological and existential evaluation by expert clinicians working in teams. Future research needs to evaluate the effectiveness of palliative sedation for refractory symptom relief.     

Characterizing the Role of U.S. Surgeons in the Provision of Palliative Care: A Systematic Review and Mixed-Methods Meta-Synthesis

Context

The provision of palliative care varies appropriately by clinical factors such as patient age and severity of disease and also varies by provider practice and specialty. Surgical patients are persistently less likely to receive palliative care than their medical counterparts for reasons that are not clear.

The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review

ContextChildren with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown.ObjectiveWe conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains.MethodsWe searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization.ResultsWe screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication.ConclusionSPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.     

Determining Palliative Care Penetration Rates in the Acute Care Setting

Context

Intermountain Healthcare, in collaboration with Cerner Corporation, developed a hospital-based electronic palliative care algorithm.

Palliative Care in Marginalised Communities

“Civilization should be judged by its treatment of minorities”

—Mahatma Gandhi     

Palliative Care in Developing Countries

Contemporary medical knowledge is sufficient to control the suffering of most of the millions of terminally patients in the world if applied appropriately. However, palliative care is still unavailable to most patients in developing countries. Effective models of palliative care delivery that have been tested in developed countries seldom apply to the developing world where poverty, extended families, and insufficient health infrastructure require the adaptation of such care to local cultures and circumstances. Research from developing countries is therefore needed to develop, implement, and monitor the delivery of palliative care in ways that are feasible in resource-poor settings and acceptable to local populations. Palliative care research shares most of the obstacles common to health research in the developing world. Additional obstacles include a lack of consideration of palliative care as part of cancer control strategies and the low political acceptability of such care because it involves the use of opioid analgesics. Coordinated research efforts through active networking and common protocols would increase the visibility of the discipline, provide answers relevant to the local contexts, and assist in expanding palliative care services across the developing world.     

Palliative Care Education in the Developing Countries

Individuals who have experience in palliative care in wealthier countries with well-structured health systems see the palliative care needs of developing countries as forbiddingly huge. They are aware of an increasing incidence of cancer, but health delivery systems are often patchy and deficient, medications for pain management are not widely available, and cultural considerations limit opportunities to face advanced illness and focus on symptom control in terminal illness. An increasing prevalence of HIV infection compounds palliative care needs. Medical practice focuses on interventions that promise cure and earn a good reward, while nursing standards are variable and often unsatisfactory. There is a need for demonstrations of good care and effective symptom control, even if these reach only a small fraction of the needy population. On such demonstrations can be built education programs that take account of local realities, and promote attitudes, knowledge and skills capable of gradually introducing a greater professional concern and a better prospect of effective care for the dying.     

Outcomes from applying a Palliative Care Satisfaction Survey Instrument in Victoria,Australia

Background: Attempts to develop tools to measure client satisfaction in the palliative care sector have identified a number of challenges, including the lack of common definition of ‘satisfaction’. This paper reports on the utilization of the Victorian Palliative Care Satisfaction Instrument (VPCSI) in three Victoria-wide surveys over three years, of patient and carer satisfaction with palliative care provision.

Aim: The VPCSI aimed to both meet the Australian Government performance indicator reporting and facilitate quality improvement for palliative care services.

Setting/participants: All palliative services receiving funding from the Victorian Department of Health were invited to participate. Feedback via survey was captured from adult patients, carers, and bereaved carers in both inpatient and community palliative care settings.

Results: Overall state-wide response rates averaged 26% over the three-year trial period. Satisfaction state-wide rated very high, ranging from 66% for patients to 74% for bereaved carers. Top five items given priority to improve varied across respondent type but overall included opportunities to talk to other carers; activities to pass the time; minimizing financial burden and training for carers to perform specific care tasks. The top five rated items overall were level of respect shown as an individual; nurse responses; expertise of staff; overall palliative care team performance; and support for physical care.

Conclusion: These data demonstrate that the VPCSI is an important tool for the collection of consumer satisfaction data in the palliative care sector across a wide range of service providers.     

The Cochrane Collaboration Pain,Palliative Care and Supportive Care Collaborative Review Group

The Pain, Palliative and Supportive care group is one of 50 collaborative review groups that make up the Cochrane Collaboration, an international organization with the task of preparing, maintaining and disseminating systematic reviews of the effects of healthcare. Cochrane reviews are published cumulatively four times a year on the Cochrane library (CD-ROM and Web-based), along with other useful material such as a register of some 300,000 randomized controlled trials. The group has identified some 20,000 randomized trials in pain and 1,200 in palliative care. Reviews in progress are also published on the library as protocols. Full peer-review is undertaken for protocols and reviews. The Pain, Palliative and Supportive care group is an informal international team involving some 100 people from some 18 countries. The group has published 26 protocols and 17 full reviews with a further 50 reviews in progress. The task is huge and there is scope for further volunteers to help with the various tasks of writing reviews, peer reviewing and literature searching.     

Natural Language Processing Accurately Measures Adherence to Best Practice Guidelines for Palliative Care in Trauma

ContextThe Trauma Quality Improvement Program Best Practice Guidelines recommend palliative care (PC) concurrent with restorative treatment for patients with life-threatening injuries. Measuring PC delivery is challenging: administrative data are nonspecific, and manual review is time intensive.ObjectivesTo identify PC delivery to patients with life-threatening trauma and compare the performance of natural language processing (NLP), a form of computer-assisted data abstraction, to administrative coding and gold standard manual review.MethodsPatients 18 years and older admitted with life-threatening trauma were identified from two Level I trauma centers (July 2016—June 2017). Four PC process measures were examined during the trauma admission: code status clarification, goals-of-care discussion, PC consult, and hospice assessment. The performance of NLP and administrative coding were compared with manual review. Multivariable regression was used to determine patient and admission factors associated with PC delivery.ResultsThere were 76,791 notes associated with 2093 admissions. NLP identified PC delivery in 33% of admissions compared with 8% using administrative coding. Using NLP, code status clarification was most commonly documented (27%), followed by goals-of-care discussion (18%), PC consult (4%), and hospice assessment (4%). Compared with manual review, NLP performed more than 50 times faster and had a sensitivity of 93%, a specificity of 96%, and an accuracy of 95%. Administrative coding had a sensitivity of 21%, a specificity of 92%, and an accuracy of 68%. Factors associated with PC delivery included older age, increased comorbidities, and longer intensive care unit stay.ConclusionNLP performs with similar accuracy with manual review but with improved efficiency. NLP has the potential to accurately identify PC delivery and benchmark performance of best practice guidelines.     

Therapeutic Challenges in Cancer Pain Management: A Systematic Review of Methadone

ABSTRACT

The proven therapeutic efficacy of methadone in cancer pain is hindered by a challenging pharmacokinetic-pharmacodynamic profile, considerable interpatient variation, and increasing concern about the complexities of dosing. The objective of this study was to assess the evidence for the use of methadone in cancer pain management. The authors conducted a systematic literature search for randomized controlled trials (RCTs) published post the 2007 Cochrane review of methadone in cancer pain. Trial quality was assessed using the Oxford Quality Scoring System and Cochrane Handbook for Systematic Reviews of Interventions. Of the 152 abstracts found, 4 were RCTs (272 participants). Two RCTs compared the efficacy and safety of methadone with placebo or active control and two investigated rotation to methadone from other opioids. The studies used different routes of administration, dosing, initiation, and titration of methadone and distinct pain scoring tools and did not address the issues raised by the Cochrane review. Methadone has an important role in the management of cancer pain, with many advantages including low cost, high oral bioavailability, rapid onset of action, once-daily dosing, and postulated benefits in difficult pain control scenarios. However, due to limited research in this area, methadone dosing remains a challenge, with vigilant dose initiation, adjustment, and monitoring required. There is a need for further studies using standardized methodology to evaluate the optimal dosing strategy of methadone, the effect on different types of pain, and the role of pharmacokinetics and pharmacogenomics in clinical outcomes.     

Pediatric Palliative Care in Sub-Saharan Africa: A Systematic Review of the Evidence for Care Models,Interventions, and Outcomes

ContextThe progressive disease burden among children in sub-Saharan Africa means the provision of palliative care is essential and should be provided alongside treatment where it is available.ObjectivesTo systematically review the evidence for pediatric palliative care models, interventions, and outcomes to appraise the state of the science and inform best practice.MethodsA systematic review search strategy was implemented in eight electronic databases, the search results reported using a PRISMA statement, and findings tabulated.ResultsIn terms of evidence of palliative care provision and outcomes, only five articles were identified. These represent a small range of acute, community, and hospice care and offer some limited guidance on the development and delivery of services.ConclusionPediatric palliative care is a pressing clinical and public health challenge in sub-Saharan Africa. Explicit evidence-based models of service development, patient assessment, and evidence for control of prevalent problems (physical, psychological, social, spiritual, and developmental) are urgently needed. Greater research activity is urgently required to ensure an evidence-based response to the enormous need for pediatric palliative care in sub-Saharan Africa.     

Differential Family Experience of Palliative Sedation Therapy in Specialized Palliative or Critical Care Units

Context

No study has examined the varying family experience of palliative sedation therapy (PST) for terminally ill patients in different settings.