Advanced Life-limiting Illness Research Articles

The Validity of Patient-Reported Outcome Measures of Quality of Life in Palliative Care: A Systematic Review.

Importance: A recent systematic review and meta-analysis found that palliative care was not associated with improvement in quality of life (QOL) in terminal noncancer illness. Among potential reasons for a null effect, it is unclear if patient-reported outcome measures (PROMs) measuring QOL were derived or validated among populations with advanced life-limiting illness (ALLI). Objective: To systematically review the derivation and validation of QOL PROMs from a recent meta-analysis of randomized controlled trials (RCT) of palliative care interventions in people with terminal noncancer illness. Evidence Review: EMBASE, MEDLINE, and PsycINFO were searched from inception to January 8, 2023 for primary validation studies of QOL PROMs in populations with ALLI, defined as adults with a progressive terminal condition and an estimated median survival of less than or equal to one year. The primary outcome was the proportion of PROMs that were derived or validated in ≥1 ALLI population. Findings: Twenty-one unique studies of derivation (n = 13) and validation (n = 11, 3 studies evaluated both) provided data on 9657 participants (mean age 63 years, 50% female) across 15 unique QOL PROMs and subscales. Among studies of validation, 9 were in people with cancer (n = 2289, n = 5 PROMs), 1 in neurodegenerative disease (n = 23, n = 1 PROM), and 1 with mixed diseases (n = 248, n = 1 PROM). Across 15 QOL PROMs and subscales, 47% (n = 7) were derived or validated in an ALLI population. The majority of these seven PROMs were exclusively derived or validated among people with cancer (57%, n = 4). QOL PROMs such as Quality of Life at End of Life, EuroQoL-5 Dimension 5-level, and 36-item Short Form Survey demonstrated validity in more than one terminal noncancer illness. Conclusions: Most QOL PROMs that measured the effect of palliative care on QOL in RCTs were neither derived nor validated in an ALLI population. These findings raise questions about the inferences that palliative care does not improve QOL among people with terminal noncancer illness.

Subcutaneous ketamine infusion in palliative patients for major depressive disorder (SKIPMDD)-Phase II single-arm open-label feasibility study.

Ketamine at subanaesthetic dosages (≤0.5mg/kg) exhibits rapid onset (over hours to days) antidepressant effects against major depressive disorder in people who are otherwise well. However, its safety, tolerability and efficacy are not known for major depressive disorder in people with advanced life-limiting illnesses. To determine the feasibility, safety, tolerability, acceptability and any antidepressant signal/activity to justify and inform a fully powered study of subcutaneous ketamine infusions for major depressive disorder in the palliative setting. This was a single arm, open-label, phase II feasibility study (Australian New Zealand Clinical Trial Registry Number-ACTRN12618001586202). We recruited adults (≥ 18-years-old) with advanced life-limiting illnesses referred to four palliative care services in Sydney, Australia, diagnosed with major depressive disorder from any care setting. Participants received weekly subcutaneous ketamine infusion (0.1-0.4mg/kg) over two hours using individual dose-titration design. Outcomes assessed were feasibility, safety, tolerability and antidepressant activity. Out of ninety-nine referrals, ten participants received ketamine and were analysed for responses. Accrual rate was 0.54 participants/month across sites with 50% of treated participants achieving ≥ 50% reduction in baseline Montgomery-Åsberg Depression Rating Scale, meeting feasibility criteria set a priori. There were no clinically relevant harms encountered. A future definitive trial exploring the effectiveness of subcutaneous infusion of ketamine for major depressive disorder in the palliative care setting may be feasible by addressing identified study barriers. Individual dose-titration of subcutaneous ketamine infusions over two hours from 0.1mg/kg can be well-tolerated and appears to produce transient antidepressant signals over hours to days.

Psychological Determinants of Physician Variation in End-of-Life Treatment Intensity: A Systematic Review and Meta-Synthesis.

Physicians treating similar patients in similar care-delivery contexts vary in the intensity of life-extending care provided to their patients at the end-of-life. Physician psychological propensities are an important potential determinant of this variability, but the pertinent literature has yet to be synthesized. Conduct a review of qualitative studies to explicate whether and how psychological propensities could result in some physicians providing more intensive treatment than others. Systematic searches were conducted in five major electronic databases-MEDLINE ALL (Ovid), Embase (Elsevier), CINAHL (EBSCO), PsycINFO (Ovid), and Cochrane CENTRAL (Wiley)-to identify eligible studies (earliest available date to August 2021). Eligibility criteria included examination of a physician psychological factor as relating to end-of-life care intensity in advanced life-limiting illness. Findings from individual studies were pooled and synthesized using thematic analysis, which identified common, prevalent themes across findings. The search identified 5623 references, of which 28 were included in the final synthesis. Seven psychological propensities were identified as influencing physician judgments regarding whether and when to withhold or de-escalate life-extending treatments resulting in higher treatment intensity: (1) professional identity as someone who extends lifespan, (2) mortality aversion, (3) communication avoidance, (4) conflict avoidance, (5) personal values favoring life extension, (6) decisional avoidance, and (7) over-optimism. Psychological propensities could influence physician judgments regarding whether and when to de-escalate life-extending treatments. Future work should examine how individual and environmental factors combine to create such propensities, and how addressing these propensities could reduce physician-attributed variation in end-of-life care intensity.

The compassionate communities connectors program: effect on healthcare usage.

Public health approaches to palliative and end-of-life care focus on enhancing the integration of services and providing a comprehensive approach that engages the assets of local communities. However, few studies have evaluated the relative costs and benefits of providing care using these service models. To assess the effect on healthcare usage of a community-based palliative care program ('Compassionate Communities Connectors') where practical and social support was delivered by community volunteers to people living with advanced life-limiting illnesses in regional Western Australia. Controlled before-and-after study/Cost-consequence analysis. A total of 43 community-based patients participated in the program during the period 2020-2022. A comparator population of 172 individuals with advanced life-limiting illnesses was randomly selected from usage data from the same set of health services. Relative to controls, the intervention group had lower hospitalizations per month [Incidence rate ratio (IRR): 0.37; 95% CI: 0.18-0.77, p = 0.007], less hospital days per month (IRR: 0.23; 95% CI: 0.11-0.49, p < 0.001) and less emergency presentations (IRR: 0.56; 95% CI: 0.34-0.94, p = 0.028. The frequency of outpatient contacts overall was two times higher for the intervention group (IRR: 2.07; 95% CI: 1.11-3.86, p = 0.022), indicating the Connector program may have shifted individuals away from the hospital system and toward community-based care. Estimated net savings of $AUD 518,701 would be achieved from adopting the Connector program, assuming enrollment of 100 patients over an average 6-month participation period. This combined healthcare usage and economic analysis of the 'Compassionate Communities Connectors' program demonstrates the benefits of optimizing palliative care services using home-based and community-centered interventions, with gains for the health system through improved patient outcomes and reduced total healthcare costs (including fewer hospitalizations and readmissions). These findings, coupled with the other published results, suggest that investment in the Connectors program has the capacity to reduce net health sector expenditure while also improving outcomes for people with life-limiting illnesses. Australian and New Zealand Clinical Trial Registry: ACTRN12620000326998.

A training programme for medical students in providing spiritual care to people with advanced diseases and their loved ones: A case study from the Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University in Toruń, Poland.

PurposeThis article presents the first programme on spiritual care particularly for people with advanced life-limiting illness including heart failure, lung disease or cancer for medical students in Poland implemented at the Collegium Medicum in Bydgoszcz of the Nicolaus Copernicus University in Toruń.Methods and materialsSeveral steps were identified for the development of the first programme on spirituality for medical students at the Collegium Medicum in Bydgoszcz including preliminary work on the content of the programme, agreement on key concepts, terms, and definitions; consultations with teachers and review of the literature.ResultsThe first Polish spiritual curriculum for medical students was implemented. The spirituality curriculum will potentially contribute to better care for the people with advanced illnesses such as heart failure, chronic lung disease or cancer and improve the quality of relationships between professionals and patients.ConclusionThe article presents the content of the program, the expected learning objectives and ascribed teaching methods, along with the preliminary evaluation made by students.

An Interdisciplinary Ethics Panel Approach to End-of-Life Decision Making for Unbefriended Nursing Home Residents

For those with advanced life-limiting illness, the optimization of quality of life and avoidance of nonbeneficial treatments at the end of life are key ethical concerns. This article evaluates the efficacy of an Interdisciplinary Ethics Panel (IEP) approach to decision making at the end of life for unbefriended nursing home residents who lack decisional capacity and have advanced life-limiting illness, through the use of a nine-step algorithm developed for this purpose. We reviewed the outcomes of three quality-of-care phased initiatives conducted in our facility, a large public nursing home in New York City, between June 2016 and February 2020, which indicated that this IEP approach promoted advance-care planning, as palliative measures were endorsed to optimize quality of life for this vulnerable population at the end of life. We also examined another quality-of-care initiative when this IEP approach was applied to end-of-life decision making for nursing home residents who had a surrogate during the COVID-19 pandemic. This application appeared to be beneficial in adding more residents to our Palliative Care Program while it improved rates of advance-care planning. When all of the above findings are considered, we believe this novel IEP approach and algorithm have the potential to be applied elsewhere after appropriate assessment.

A Delphi study to guide the development of a clinical indicator tool for palliative care in South Africa.

BackgroundThe South African National Policy Framework and Strategy on Palliative Care (NPFSPC) recommends that when integrating palliative care (PC) into the health system, a PC indicators tool should be used to guide clinicians to recognise a patient who should receive PC. The policy document recommends ‘a simple screening tool developed for use in South Africa that would assist healthcare professionals (HCPs) to recognise patients who may have unmet palliative care needs’.AimThis research study sought to develop South African consensus on indicators for PC to assist clinicians to recognise a patient in need of PC.SettingThe South African healthcare setting.MethodsA Delphi study was considered suitable as a methodology to develop consensus. The methodology was based on the Conducting and REporting of DElphi studies (CREDES) guidance on Delphi studies to ensure rigour and transparency in conducting and reporting. Six different Delphi rounds were used to develop consensus. Each round allowed participants to anonymously rate statements with predefined rating scales.ResultsCognisant of the disparities in healthcare provision and access to equitable healthcare in South Africa, the expert advisory group recommended, especially for South Africa, that ‘this tool is for deteriorating patients with an advanced life-limiting illness where all available and appropriate management for underlying illnesses and reversible complications has been offered’. The expert advisory group felt that disease-specific indicators should be described before the general indicators in the South African indicators tool, so all users of the tool orientate themselves to the disease categories first. This study included three new domains to address the South African context: trauma, infectious diseases and haematological diseases. General indicators for PC aligned with the original Supportive and Palliative Care Indicators Tool (SPICT) tool.ConclusionThe Supportive and Palliative Care Indicators Tool for South Africa (SPICTTM-SA) is a simple screening tool for South Africa that may assist HCPs to recognise patients who may have unmet PC needs.

The Compassionate Communities Connectors model for end-of-life care: implementation and evaluation.

This pilot project aimed to develop, implement and evaluate a model of care delivered by community volunteers, called Compassionate Communities Connectors. The Connectors' principal task was to support people living with advanced life-limiting illnesses or palliative care needs by enhancing their supportive networks with Caring Helpers enlisted from the local community. The project was undertaken in Western Australia, 2020-2022. A mixed methods research design incorporated a prospective cohort longitudinal design with two cross-sectional measurements, pre- and post-intervention. The primary outcome was the effect of the intervention on social connectedness. Secondary outcomes were the effect of the intervention on unmet practical or social needs and support from social networks, and the self-reported impact of the programme on social wellbeing such as coping with daily activities, access to formal services, community links, social activity and reducing social isolation. Twenty Connectors were trained but 13 participated; 43 patients participated but 30 completed the study. Over half of these patients lived alone and 80% of their needs were in the social domain. There were significant improvements in social connectedness, reflected in reduced social isolation, better coping with daily activities and a two-fold increase in supportive networks. The programme was able to address gaps that formal services could not, particularly for people who lived alone, or were socially isolated in more rural communities that are out of the frequent reach of formal services. This project led to an ongoing programme that has been incorporated by the health service as 'business as usual', demonstrating rapid translation into practice. It has laid solid grounds for community capacity building with successful measurable outcomes in line with reports on similar programmes. Ongoing work is focused on replication in other communities to help them establish a similar model of care that better integrates formal and informal networks.

Patient-reported outcome measurement of symptom distress is feasible in most clinical scenarios in palliative care: an observational study involving routinely collected data.

BackgroundImplementation of routinely collected patient-reported outcome measures (PROMs) ensures patients’ priorities are at the forefront of care planning and helps to standardize approaches to quality improvement. In palliative care, barriers to PROMs are widely known but what are not understood are the clinical and care settings in which patients are more likely to report and when proxy reporting is needed.ObjectiveTo examine the incidence of patient-reported symptom distress compared to the incidence of proxy reporting in palliative care and influencing factors.MethodsA national observational study using routinely collected PROMs data with influencing factors investigated by logistic regression modelling. Participants were patients with an advanced life-limiting illness receiving palliative care in an inpatient or a community healthcare setting in Australia.ResultsSixteen thousand one hundred and fifty-eight reports of symptom distress were collected from 1117 patients seen by 21 palliative care services. The majority of respondents were diagnosed with cancer (76%), were older (≥65 years, 72%) and had nominated English as their first language (88%). The majority of symptom distress reports were completed by patients (61%). The odds of a patient providing a self-report where grater when they were receiving community versus inpatient palliative care (odds ratio (OR): 3.0; 95% confidence interval (CI): 2.25–4.01), for patients diagnosed with malignant versus non-malignant disease (OR 1.7; 95% CI: 1.26–2.31), and for those who required an urgent change in their care plan versus those whose symptoms and problems were adequately managed (OR: 1.38; 95% CI: 1.04–1.83).ConclusionThree factors are associated with an increased likelihood of patient versus proxy reporting in palliative care: healthcare setting, diagnosis, and the acuity and urgency of the patient’s clinical needs. PROMs are feasible in most clinical scenarios in palliative care, including when an urgent clinical response is required.

Perspectives on palliative oxygen for breathlessness: systematic review and meta-synthesis.

Oxygen therapy is frequently prescribed for the palliation of breathlessness, despite lack of evidence for its effectiveness in people who are not hypoxaemic. This study aimed to compare and contrast patients', caregivers' and clinicians' experiences of palliative oxygen use for the relief of chronic breathlessness in people with advanced life-limiting illnesses, and how this shapes prescribing.A systematic review and meta-synthesis of qualitative data was conducted. MEDLINE, CINAHL and PsycINFO were searched for peer-reviewed studies in English (2000-April 2019) reporting perspectives on palliative oxygen use for reducing breathlessness in people with advanced illnesses in any healthcare setting. After data extraction, thematic synthesis used line-by-line coding of raw data (quotes) to generate descriptive and analytical themes.Of 457 articles identified, 22 met the inclusion criteria by reporting perspectives of patients (n=337), caregivers (n=91) or clinicians (n=616). Themes common to these perspectives were: 1) benefits and burdens of palliative oxygen use, 2) knowledge and perceptions of palliative oxygen use beyond the guidelines, and 3) longitudinal trajectories of palliative oxygen use.There are differing perceptions regarding the benefits and burdens of using palliative oxygen. Clinicians should be aware that oxygen use may generate differing goals of therapy for patients and caregivers. These perceptions should be taken into consideration when prescribing oxygen for the symptomatic relief of chronic breathlessness in patients who do not quality for long-term oxygen therapy.

Preparing nurses for palliative and end of life care: A survey of New Zealand nursing schools

BackgroundNurses play a vital role in the care of people with advanced life-limiting illnesses, so palliative and end of life care is an essential skill nurses need to learn. Despite numerous reports in the international literature about educational developments in this area, there are widespread inconsistencies in undergraduate education, and graduates continue to report feeling unprepared for this part of their work. Little is known about how New Zealand nursing students learn about this important area of clinical practice. ObjectivesTo obtain information about teaching content, organisation, delivery, assessment and clinical learning opportunities in palliative and end of life care in undergraduate nurse education in New Zealand. DesignQuantitative descriptive cross sectional study. SettingsTertiary education institutions that provide the Bachelor of Nursing programme in New Zealand. ParticipantsAcademic leads and course coordinators. MethodsNational online survey. ResultsA total of 13/18 (72%) educational institutions completed the survey. All integrate palliative and end of life care in their teaching with an identified coordinator at 12 (92%) institutions. Between 1 and 10 h of formal teaching is provided at 11 (85%) institutions where lectures and tutorials are most comon. Clinical placements with specialist palliative care providers are scarce and limited to senior students as elective placements. Assessment of student learning in palliative and end of life care is carried out at seven (54%) institutions, and formally evaluated at 12 (92%). Lack of teaching time and clinical placements with palliative care providers are barriers to increased learning opportunities in palliative and end of life care. ConclusionsThis article provides comprehensive information about palliative and end of life care teaching in undergraduate nurse education in New Zealand. Teaching on this subject is not a mandatory requirement so there are inconsistencies in the teaching provided between educational institutions, and significant barriers to development. Mandatory competencies need to be introduced to ensure graduates have the knowledge, skills and attitudes required to provide optimal care for people near the end of life.

Life Program: Pilot Testing a Palliative Psychology Group Intervention.

Psychosocial interventions for palliative care populations, individuals with life-limiting illness, improve distress; however, less is known about these interventions among military Veterans. This quality improvement project evaluated a palliative psychology group intervention to reduce depression, anxiety, and stress among Veterans with advanced life-limiting illness. Veterans receiving palliative care at a mid-Atlantic VA healthcare system were referred by a mental health provider. The group intervention was delivered face-to-face in six to eight weekly sessions, with groups of four to eight participants. The intervention (Life Program), was a hybrid of cognitive-behavioral therapy and acceptance and commitment therapy that targeted: personal values, mindfulness, and psychological flexibility. A single-arm pre-post-test design was used to assess depression, anxiety, and stress, and satisfaction with the intervention. Seventy-five percent (39/52) of all Veterans who were contacted expressed interest and agreed to participate. Seventeen of 39 enrolled Veterans completed all sessions. The mean age of participants who completed the program was 63.06 (standard deviation = 8.47). Most participants were male (88%), Caucasian (58%), and had a cancer diagnosis (65%). Mean pre-post reductions in depression (18.82 vs. 13.20), anxiety (16.59 vs. 14.59), stress (19.18 vs. 13.88), and psychological inflexibility were observed. Mean differences in symptom severity were clinically meaningful. Barriers to feasibility included transportation issues and illness burden. Veterans who completed all sessions of a palliative psychology group intervention had reductions in depression, anxiety, and stress. Estimates of the treatment effects may be inflated using completer data alone. Further research is needed to inform ways to improve program engagement and adherence and examine efficacy in Veterans with advanced life-limiting illness.

Palliative Home Care Teams in Germany

Since 2007, patients with severe advanced life-limiting illnesses and high, complex symptom burdens have a right to receive specialized outpatient palliative care (SAPV). Multi-professional teams with heterogeneous organizational structures provide care in cooperation with primary care givers, not limited to cancer patients. The aim of SAPV is to foster patient's autonomy and quality of life. SAPV can be provided as counseling of patient and care givers, coordination of care, additional supportive and full care provision. While the basis of SAPV provision is regulated by a SAPV directive, different contracts between care providers and health care insurances regulate organization, cooperation, definition of care levels, service provision and compensation. Some regions have model contracts that are binding for all SAPV teams in the area; in other regions teams negotiate e. g. compensation, individually with insurances. The article gives an overview of the regulations regarding SAPV.

Exploring Education and Training Needs in Palliative Care among Family Physicians in Mumbai: A Qualitative Study.

Context:Patients with chronic life-limiting conditions on palliative care (PC) prefer to be treated at home. Medical care by family physicians (FPs) reduces demand on costly and busy hospital facilities. Working of PC team in collaboration with FPs is thus helpful in home-based management of patients.Aims:This study aimed at exploring the extent of knowledge of FPs about PC and the need for additional training.Settings and Design:Semi-structured interviews were conducted with ten FPs from two suburbs of Mumbai, currently served by home care services of a tertiary cancer care center.Subjects and Methods:Data were digitally recorded, transcribed, and analyzed using exploratory analysis followed by content analysis to develop thematic codes.Results and Conclusions:FPs perceive PC as symptom control and psychological support helpful in managing patients with advanced life-limiting illnesses. Further training would help them in PC provision. Such training programs should preferably focus on symptom management and communication skills. There is a need for further research in designing a training module for FPs to get better understanding of the principles of PC.

Impacts on employment, finances, and lifestyle for working age people facing an expected premature death: A systematic review.

A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children. Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n=18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease. Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.

First Medicare Demonstration of Concurrent Provision of Curative and Hospice Services for End-of-Life Care.

Hospice developed in the United States in the 1970s as a way to address unmet needs for end-of-life care: support for pain and symptom management provided in the location and manner that the patient and family prefer. In Europe and Australia, hospice is available from the time of diagnosis of an advanced life-limiting illness onward, but in the United States, the Medicare hospice benefit restricts eligibility for these services to patients who no longer receive curative treatment. We provide background and analysis of the first Medicare hospice demonstration in 35 years that will test the concurrent provision of curative and hospice services for terminally ill individuals with a life expectancy of six months or less. This demonstration is a harbinger of potential policy changes to hospice and palliative care in the United States that could reduce barriers to end-of-life care that aligns with patient and family preferences as the demand for care increases with an aging population.

Pharmacovigilance in hospice/palliative care: the net immediate and short-term effects of dexamethasone for anorexia

ObjectivesLoss of appetite is prevalent in palliative care and distressing for patients and families. Therapies include corticosteroids or progestogens. This study explores the net effect of dexamethasone on anorexia.MethodsProspective data...

Patient and caregiver characteristics related to completion of advance directives in terminally ill patients.

There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney. A convenience sample of 206 caregiver-patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion. Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place. Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.

Development of Standardized Case Vignettes to Assess Palliative Care Professionals' Recognition of Delirium, Dementia, and Depression (S737)

•Describe a systematic process used in developing standardized case vignettes of patients with delirium, dementia, and depression in the context of palliative care.•Examine palliative care professionals' recognition of delirium, dementia, and depression in patients with advanced life-limiting illnesses. Timely and accurate diagnosis of delirium in palliative care is challenging. Palliative care professionals often fail to recognize delirium because of its variable presentation and overlap with other conditions such as dementia and depression. To develop and test standardized case vignettes to assess palliative care professionals’ recognition of delirium, dementia, and depression. Case vignettes of patients experiencing hyperactive, hypoactive, and mixed delirium; dementia; hyperactive delirium superimposed on dementia (DSD); hypoactive DSD; and depression were drafted and presented to 10 delirium experts who assessed content and construct validity. Revised vignettes were then reviewed by a subset of four experts. Final vignettes were incorporated into a web-based survey and administered to an interdisciplinary panel of palliative care professionals, including physicians (n=8), nurses (n=7), and social workers (n=5). More than 70% of experts agreed that each vignette had an appropriate level of simplicity. At least 80% agreed that each was very plausible. There was more variation regarding clarity. Correct diagnostic agreement (CDA) among the experts was at least 90% for all but one vignette. In the second review, simplicity and plausibility were rated high, with 100% CDA for all but one vignette. All palliative care professionals correctly identified depression. CDA was 95% for dementia and hyperactive delirium and 90% for hypoactive delirium. CDA was lower for both hyperactive and hypoactive DSD (75%) and mixed delirium (70%). Overall, palliative care professionals accurately identified depression, dementia, and hyperactive and hypoactive delirium. They were less accurate in identifying mixed delirium and DSD.

Specialist Pediatric Palliative Care Prescribing Practices: A Large 5-year Retrospective Audit.

Introduction:There is a gradual increasing trend in childhood cancers in India and pediatric palliative care in India is an emerging specialty. Prescribing pain and symptom control drugs in children with cancer requires knowledge of palliative care formulary, dosing schedules, and prescription guidelines. This study is a retrospective audit of prescribing practices of a specialist palliative care service situated in a tertiary cancer center.Methods:A total of 1135 medication records of children receiving specialist pediatric palliative care services were audited for 5 years (2010–2014) to evaluate prescribing practices in children with advanced cancer.Results:A total of 51 types of drugs were prescribed with an average of 4.2 drugs per prescription. 66.9% of the prescriptions had paracetamol, and 33.9% of the prescriptions had morphine. Most common nonsteroidal anti-inflammatory drugs prescribed was ibuprofen (23.9%), and more than 50% of the prescriptions had aperients. The most commonly prescribed aperient was a combination of liquid paraffin and sodium-picosulfate. Dexamethasone was prescribed in 51.9% of patients and in most cases this was part of oral chemotherapy regimen. Generic names in prescription were used only in 33% of cases, and adverse effects of the drugs were documented in only 9% of cases. In 25% of cases, noncompliance to the WHO prescription guidelines was seen, and patient compliance to prescription was seen in 40% of cases.Conclusions:Audit of the prescribing practices in specialist pediatric palliative care service shows that knowledge of pediatric palliative care formulary, rational drug use, dosing, and prescribing guidelines is essential for symptom control in children with advanced life-limiting illness. Noncompliance to WHO prescribing guidelines in one fourth of cases and using nongeneric names in two-thirds of prescription indicates poor prescribing practices and warrants prescriber education. Prescription noncompliance by almost two-thirds of patients is alarming and necessitates intense patient, family, and caregiver education and empowerment.