Adult Palliative Care Research Articles

The impact of Covid-19 pandemic on hospices: A systematic integrated review and synthesis of recommendations for policy and practice

Background: The Covid-19 pandemic resulted in the development of numerous recommendations for practice and policy for specialist palliative care provided by hospices in United Kingdom (UK), as hospices were significantly affected by the pandemic and protections put in place. The aim of this review is to identify and synthesise recommendations or implications for policy and practice that have been generated for adult hospice specialist palliative care during the first 24 months of the Covid-19 pandemic. Methods: AMED, BNI, CINAHL, EMBASE, EMCARE, HMIC, Medline, PsycINFO, PubMed databases were searched for peer-reviewed papers, as well as hand searches for grey literature. Literature relating to hospices and Covid-19 in the UK were included and a thematic synthesis of recommendations for hospice policy and practice was undertaken. Results: 858 articles were identified with 12 meeting the inclusion criteria. Fifty-eight recommendations or implications were identified: 31 for policy, 27 for practice, and 10 covering both. Recommendations were organised under ten themes. There were several recommendations seeking to secure hospice resources to mitigate the short-term impact of the pandemic, as well as those focused on longer-term implications such as core funding. The impact of the pandemic on the quality of hospice care was the focus for numerous recommendations around improving integration of hospice care in the community, provision of bereavement support and better use of Advance Care Plans (ACP). However, there were significant gaps related to carer visitation in hospices, inequities of palliative care, or hospice-at-home services. Conclusion: The Covid-19 pandemic and protections exposed several ongoing policy and practice needs, especially around hospice resources, while generating novel issues for hospices to address. Significant policy gaps remain to be addressed to mitigate the impact of the pandemic on the quality of hospice specialist palliative care.

Health professional involvement in the formulation of research questions: findings from the Italian guideline on palliative care in adults with glioma.

In 2017, the European Association of Neuro-Oncology (EANO)published the guideline for palliative care in adults with glioma. The Italian Society of Neurology (SIN), the Italian Society for Palliative Care (SICP), and the Italian Association for Neuro-Oncology (AINO) joined forces to update the guideline, and adapt it to the Italian context. We involved patients, caregivers, and (herein presented) healthcare professionals (HPs) in the formulation of the guideline clinical questions. Online survey of Italian HPs experienced in the care of patients with glioma. Participants rated the importance of 14 pre-specified intervention topics on a 0/10 scale and gave their free comments. Of 244 participants, 149 (61%) were palliative medicine (PM) HPs and 95 Neuro HPs. Their mean age was 48.9years, 63% were women, and 48% had over 12years of experience in the care of glioma patients. Physicians were 68%, followed by nurses (28%), psychologists (7%), therapists (3%), and social workers (2%). Most HPs rated the pre-specified topics as important (score ≥ 7) or critical (score ≥ 9), with some differences between PM and Neuro HP groups. There were 58 free comments: 46 (78%) on nine pre-specified topics, and 13 on four new topics, three of which were guideline-pertinent ("caregiver's support and education"; "family physician's training in neuro-oncology"; and "PM HPs' training in neuro-oncology"). Participation in the survey was high and information-rich, between-group rating differences reflecting HP background. Participants endorsed the 14 intervention topics devised by the guideline panel and identified three additional topics.

Palliative Care for Thai Older Adults with Chronic Kidney Disease: A Scoping Review

Palliative Care for Thai Older Adults with Chronic Kidney Disease: A Scoping Review

Abstract A032: Dignity therapy effects by race: Chaplain and nurse implementation in pragmatic, multisite stepped-wedge randomized control trial

Abstract Aim: As a brief psychotherapy for individuals facing mortal threat, Dignity Therapy (DT) effects on spiritual outcomes are unknown, especially as an intervention to support cancer health equity for racial minority patients. Our study aim was to compare usual outpatient palliative care and such care along with nurse-led or chaplain-led DT groups for main effects on dignity impact and the interaction of DT with race. Methods: We conducted the 4-step, stepped-wedge randomized control trial at 4 NCI designated cancer centers and 2 academic cancer centers across the United States. Half of the sites were randomized to chaplain-led DT and half to nurse-led DT. Of the 645 recruited cancer patients (age ≥ 55 years) receiving outpatient palliative care, 579 (59% female, mean age 66.4±7.4 years, 78% White, 77% Christian religion, 62% stage 4 cancer) provided data for intent-to-treat analysis. Over 6 weeks, patients completed pretest/posttest measures including the Dignity Impact Scale (DIS, primary outcome) ranging from low impact of 7 to highest impact of 35. In step 1-3, study procedures were completed in person. In step 4 (during the COVID-19 pandemic), when all sites were providing the intervention, study procedures were completed via Zoom. We used multiple imputation and regression analysis adjusting for pretest DIS, study site, and study step. Results: Of the 579 patients, 317 were in the DT group and 262 in the usual care group. The vast majority of the sample was White (n=448) along with 103 Blacks, 5 Asians, 2 Pacific Islanders, 1 Native American, 13 other races (all minorities were combined as Other Race), and 7 were missing race data. At pretest, the mean DIS score was 24.3±4.3 in the DT group and 25.9±4.3 in the usual care group. Adjusting for pretest DIS scores, study site, and study step, the chaplain-led (β=1.7, p=.02) and nurse-led (β=2.1, p=.005) groups reported significantly higher posttest DIS scores than the usual care groups. Adjusting for age, gender, race, education, and income, the effect on DIS scores remained significant for both DT groups. We then examined the interaction between race and DT with the entire sample and observed that the interaction was not significant (p=.73) and the sizes of DT effects were similar for White (β=1.9, p=.005) and the Other Race (β=1.6, p=.055) patients. Conclusions: Whether led by chaplains or nurses, DT was effective in improving dignity impact for older adult outpatient palliative care patients with cancer. DT, a patient-centered approach, has promise as an intervention to improve health equity in support of dignity for racial minorities. This rigorous trial of DT is a landmark step in gero-oncology palliative care and spiritual health services research focused on cancer health equity. Citation Format: Diana J. Wilkie, George Fitchett, Tasha M. Schoppee, Marvin O. Degado Guay, Joshua Hauser, Sheri M. Kittelson, Sean O-Mahony, Michael W. Rabow, Tammie E. Quest, Sheldon Solomon, Yingwei Yao, George Hadzo, Harvey Max Chochinov, Linda L. Emanuel. Dignity therapy effects by race: Chaplain and nurse implementation in pragmatic, multisite stepped-wedge randomized control trial [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr A032.

Evidence-Based Guideline: Individualized Music for Persons with Dementia (7th Edition) — Non-Pharmacological Intervention for Agitation

Individualized music is a non-pharmacological intervention for the management of agitation in persons with dementia. It is supported by the Middle-Range Theory of Individualized Music Intervention for Agitation (IMIA), including testable propositions. The Evidence-Based Guideline: Individualized Music for Persons with Dementia (PWD) was originally published in 1996, has recently been updated and is now in its 7th edition. The current edition is 81 pages in length and includes 144 references. This guideline provides the culmination of over 30 years of research and clinical implementation. The guideline provides a grading schema for the strength and consistency of evidence, with a step-by-step description of the intervention to insure consistency in implementation and evaluation of outcome measures. The intervention is individualized at multiple levels, and is more than simply playing preferred music for the PWD. The intervention emphasizes personhood by including the role of music in the person’s life prior to the onset of cognitive impairment. This includes the role of music in the person’s ethnic identity and religious practice. The intervention has been empirically and clinically tested by scholars in an expanding number of countries. Individualized music is versatile and has been successfully used in home care, adult day care, assisted living, longterm care, post-acute care, and palliative care. As with previous editions, the 7th edition is available, along with all supporting documents and forms, as a free downloadable pdf.

PALLIATIVE CARE AND END OF LIFE CARE IN LATIN AMERICA: SCOPING REVIEW

INTRODUCTION: Populational aging and improved treatments for chronic non-communicable diseases extend life expectancy but not always quality of life. By 2060, 48 million people are expected to die of serious illnesses, and 83% of these deaths will occur in developing countries. Only 14% of those who needed palliative care receive it. AIM: To describe the methodological trends, thematic areas, populations studied, and future challenges in Latin American regions with respect to ​​adult palliative care. METHODS: A scoping review of 60 articles from 2010 to 2019 in indexed journals in English, Spanish, and Portuguese was conducted. RESULTS: Most articles were from Brazil, Colombia, and Mexico. Patients, caregivers, healthcare professionals, and students constituted the primary study population. Quality of Life, knowledge, and costs of attention were also assessed. It appears that early palliative care improves the outcomes of patients, caregivers, and health care professionals, however, the disparity in palliative care services between Latin America, US, UK, Canada, and Spain is concerning. CONCLUSIONS: Globally, more palliative care is needed, especially in Latin America. However, there are not enough graduate palliative care programs. Academic palliative care education must be promoted. Communication between the interdisciplinary team, the patient, and the caregiver is critical. While the region's scientific literature output has improved, many knowledge gaps remain. For patients' sake, governments should regulate, create, and facilitate palliative care services.

578: DEVELOPING A COMMUNICATION TOOL FOR FAMILIES IN THE PEDIATRIC INTENSIVE CARE UNIT: A DELPHI STUDY

Introduction: Effective communication is essential to delivering quality care in the pediatric intensive care unit (PICU). There is a growing body of literature supporting the use of communication tools in the adult ICU, neonatal ICU, and palliative care setting. There is no easily scalable tool that has been described to support families in communication in the PICU. We propose that engaging key stakeholders in the development of a PICU family communication tool via a Delphi study will result in consensus about pertinent items to include, resulting in a useful tool for families. Methods: The Delphi method was used to inform a five-part process: (1) drafting of potential items for the tool based on literature review, (2) focus group of experts in critical illness communication to refine and condense items to be included in a survey, (3) survey of key stakeholders including parents of children with previous PICU admission and PICU healthcare providers, (4) additional rounds of the survey via the Delphi method until consensus is reached, (5) final review of the tool by critical illness communication experts. The survey queries stakeholders using a 5-point Likert scale and qualitative feedback for each item. Items with a score of 4 or 5 by >70% of stakeholders are included in the next round of the Delphi with incorporation of qualitative feedback. Results: There were ten participants in the initial focus group consisting of nurses, physicians, and researchers, mostly practicing in an academic setting (50%), with most participants having greater than 10 years of experience in their specialty (80%). Twenty-six specific items were drafted for inclusion in the Delphi method survey under six major themes: questions about medical information, questions about the provision of care, questions about communication, questions about decision-making, discussing family and patient needs with the medical team, and discussing more information about their child with the medical team. Conclusions: The Delphi method provides a useful stepwise approach for the involvement of key stakeholders in the creation of a tool that supports families in communication with their healthcare providers in the PICU. Future research should trial efficacy of this tool.

Psychedelic/entactogen-assisted therapy for treatment of anxiety, depression and existential distress in adult palliative care

Psychedelic/entactogen-assisted therapy for treatment of anxiety, depression and existential distress in adult palliative care

Pilot Trial of a Social Work Intervention to Provide Palliative Care for Adults with Cancer in Skilled Nursing Facilities.

Background: Hospitalized patients with cancer and their caregivers discharged to skilled nursing facilities (SNFs) have unmet palliative care needs. Objective: To determine feasibility and acceptability of Assessing and Listening to Individual Goals and Needs (ALIGN), a palliative care social worker (PCSW) intervention, for older adults and their caregivers in SNFs. Design: Single-arm, single-site pilot study. Predefined feasibility goals were >70% intervention completion and study retention rates (postintervention outcomes completed at one week). Setting/Subjects: Twenty-three patients with cancer and their 21 caregivers discharged to 12 SNFs posthospitalization. Measurements: Primary outcomes were feasibility and acceptability. Exploratory patient and caregiver-reported outcomes, including goals of care were collected at baseline and one week postintervention. Health care utilization, mortality, and hospice utilization was collected at the six-month follow-up. Results: Of 73 patients screened, 35 (48%) were eligible and 23 (66%) patients and 21 caregivers enrolled. Eighteen (78%) patients completed the intervention and 10 (44%) patients and 13 (62%) caregivers provided follow-up outcomes. Average age of patients was 73, and 19 (83%) had stage III or IV cancer. Average age of caregivers was 55. Eight (44%) patients' preferences changed to prefer less aggressive care. Nineteen (83%) patients died during or shortly after intervention completion. Qualitative feedback from participant and SNF staff interviews supported high acceptability. PCSW involvement increased illness understanding and patient engagement with advance care planning. SNF staff valued increased palliative support. Conclusions: Intervention completion was >70%, however, not study retention due to higher-than-expected mortality. Future study should account for high mortality and examine whether ALIGN can better prepare surrogate decision makers and enhance the ability of SNFs to address changing goals of care. Clinical Trial Registration Number NCT04882111.

A study to translate and validate the Thai version of the Victoria Respiratory Congestion Scale

PurposeFew clinical tools are available to objectively evaluate death rattles in palliative care. The Victoria Respiratory Congestion Scale (VRCS) was adapted from the Back's scale, which has been widely utilized in research and clinical practice. The VRCS will be translated into Thai and research will be conducted to determine its validity and reliability in assessing death rattles in palliative care.MethodsTwo qualified language specialists converted the original tool into Thai and then back to English. Between September 2021 and January 2022, a cross-sectional study was undertaken at a palliative care unit at Ramathibodi Hospital to determine the Thai VRCS's validity and reliability. Two evaluators independently assessed the volume of secretion noises using the Thai VRCS. The criterion-related validity of VRCS was determined by calculating the correlation between the sound level obtained with a standard sound meter and the VRSC scores using Spearman's correlation coefficient method. To assess inter-rater reliability and agreement measurement on ratings, we utilized a two-way random-effects model with Cohen's weighted kappa agreement.ResultsForty patients enrolled in this study with a mean age of 75.3 years. Fifty-five percent had a cancer diagnosis. Spearman's rho correlation coefficient was found to be 0.8822, p < 0.05, indicating a highly significant link. The interrater reliability analysis revealed that the interrater agreement was 95% and the Cohen's weighted kappa agreement was 0.92, indicating near-perfect agreement.ConclusionsThai VRCS demonstrated excellent criteria-related validity and interrater reliability. Using the Thai VRCS to assess adult palliative care patients' death rattles was recommended.

The impact of specialist community palliative care teams on acute hospital admission rates in adult patients requiring end of life care: A systematic review.

The aim of this systematic review was to determine the impact that specialist community palliative care teams (SCPCT) have on acute hospital admission rates in adult palliative care (PC) patients who require End of Life Care (EOLC). Using systematic review methodology, eight studies were obtained from thorough searching of CINAHL, Medline and Embase databases. The review question was formulated using the PICO mnemonic - Population, Intervention, Comparison and Outcome. PRISMA guidelines were used to conduct the review and record the database searches. Data were extracted using a pre-designed extraction tool and all included studies were quality appraised using the checklist. The results are presented as a narrative review. For the purposes of this review SCPCT is a minimum of one specialist doctor and one specialist nurse. The eight selected studies reported that when SCPCT's cared for patients requiring EOLC there was a reduction in the admission rates to acute hospital settings in comparison to those who received standard care only. Some studies showed this reduction to be as high as 33% and 34% in the last year of life. With regards to secondary outcomes the studies that evaluated the impact of SCPCT's on emergency department usage and hospital death rates all found that SCPCT's had a positive influence in both areas. With regards to emergency department usage, one study reported the most significant reduction of 51% for patients who had SCPCT compared with those who had not. With regards to hospital death rates, the most significant results found that 39% of patients receiving SCPCT died in hospital compared to 74.8% who did not receive SCPCT. This review demonstrates that SCPCT's have a positive impact in reducing acute hospital admissions in adult patients requiring EOLC, however, these results may not be conclusive. Palliative care is a complex intervention with a very diverse population. It is vital therefore that further research and investigation, accounting for the confounding factors that may affect the accuracy of the results, is undertaken.

Adaptation, implementation, and mixed methods evaluation of an interprofessional modular clinical practice guideline for delirium management on an inpatient palliative care unit

BackgroundUsing delirium clinical guidelines may align interprofessional clinical practice and improve the care of delirious patients and their families. The aim of this project was to adapt, implement and evaluate an interprofessional modular delirium clinical practice guideline for an inpatient palliative care unit.MethodsThe setting was a 31-bed adult inpatient palliative care unit within a university-affiliated teaching hospital. Participants for the evaluation were interprofessional team members. Using integration of guideline adaptation and an education initiative, an interprofessional guideline adaptation group developed a face-to-face ‘starter kit’ module and four online self-learning modules. The mixed methods evaluation comprised pre-and post-implementation review of electronic patient records, an online survey, and analysis of focus groups/ interviews using an iterative, inductive thematic analysis approach.ResultsGuideline implementation took 12 months. All palliative care unit staff attended a ‘starter kit’ session. Overall completion rate of the four e-Learning modules was 80.4%. After guideline implementation, nursing documentation of non-pharmacological interventions occurring before medication administration was observed. There was 60% less scheduled antipsychotic use and an increase in ‘as needed’ midazolam use. The online survey response rate was 32% (25/77). Most participants viewed the guideline’s implementation favourably. Six key themes emerged from the qualitative analysis of interviews and focus groups with ten participants: prior delirium knowledge or experiences, challenges of facilitating change, impacts on practice, collaborative effort of change, importance of standardized guidelines, and utility of guideline elements.ConclusionsGuideline implementation warrants concerted effort, time, and management support. Interprofessional team support facilitates the modular approach of guideline adaptation and implementation, leading to a change in clinical practice.

SOP – Respiratory distress in adult palliative care patients

SOP – Respiratory distress in adult palliative care patients

Possible age-related differences in healthcare professionals’ perspectives on younger and older patients’ autonomy and decision-making in the context of sedation in specialised palliative care: exploratory secondary qualitative content and linguistic conversation analysis of interviews with healthcare professionals

BackgroundChronic illnesses and multi-morbidity can threaten competence and independence, particularly in old age. Autonomy becomes increasingly important in the context of sedation, as in this case medication leads to (further) changes of consciousness. The study aimed to identify possible age-related differences in the perspectives of healthcare professionals on patients’ autonomy, in the context of sedation in specialised palliative care.MethodSecondary analysis of interviews with healthcare professionals, analysed by qualitative content and linguistic conversation analysis. The interviews analysed span 51 healthcare professionals in specialised palliative care across 17 centres (adult inpatient and specialist palliative home care services) in Germany.ResultsThe study shows that the perspectives of healthcare professionals on patients’ autonomy differs according to the age of the patient in the context of sedation in specialised palliative care. The different perspectives may lead to different ways of treating the patients, for example a greater space of autonomy and decision-making for younger patients.ConclusionIn particular, measures that may restrict consciousness (e.g. sedation) and thus influence patients’ ability to fully exercise their autonomy and fully participate in decision-making require special attention by healthcare professionals with respect to possible influences on treatment, such as different perceptions by healthcare professionals based on the patient’s age or age-related stereotypes.Trial registrationThe study “SedPall” is registered in the German Clinical Trials Register (ID: DRKS00015047).

Transition to adult services for young people suffering from life-limiting neurodevelopmental disabilities: A case series

Due to advances in medical care, a growing number of young people with life-limiting neurodevelopmental disabilities (LLNDDs) are now surviving into adulthood. However, the traditional model of care between pediatrics and adult medicine was fragmented and did not match their multi-facet needs. A special working group that includes pediatricians, adult palliative care team, and representatives from non-governmental organizations (NGOs) was formed, providing a period of joint care of 12–24 months before transitioning to the adult palliative care team. A retrospective case series of 19 young adults with LLNDDs, recorded during the July 2015–June 2020 period at the study institution is presented. Recruited patients’ age ranged from 18 to 38 (mean 26.2 [SD 6.1]). Majority of them (n = 14) require residential care at long-term care facilities (LTCFs) and high level of nursing care, which include artificial nutrition (n = 8) and home ventilator (n = 5). All patients referred to our palliative care (PC) program were engaged in a structured advance care planning (ACP) process. Seventeen patients (89.5%) had their Do-Not-Resuscitate (DNR) directives in place and two mentally competent patients completed their own advance directive (AD). All deceased (n = 10) had their DNR directives being honored. In conclusion, the palliative care needs of young adults suffering from LLNDDs should be properly addressed and implementation of a joint transitional care model between pediatrics and adult PC team is one possible method. Future research should encompass a better care model that addresses the multi-facet needs of young people suffering from LLNDDs, especially the transition from pediatrics to adult medicine.

Protocol for an exploratory, longitudinal single case study of a novel palliative care rehabilitative service.

Background: Early access to rehabilitation can improve quality of life for those with life-limiting illnesses and is highlighted as a core component of the Adult Palliative Care Services Model of Care for Ireland. Despite this, palliative rehabilitation remains under-utilised and under-developed. In 2020, the Sláintecare Integration Fund provided opportunity to pilot a novel rehabilitative palliative care service, "Palliat Rehab". This protocol proposes a case study, which aims to advance understanding of the form, content, and delivery of the pilot service. Methods: A prospective, longitudinal, mixed-methods, case study design will be used to describe the service and to explore the experiences of patients, informal carers and clinicians. Additionally, data collection instruments will be tested and the utility of outcome measures will be examined. Data will be collected from documentary, survey, and interview sources. Quantitative data will be analysed using descriptive statistics, including chi-square tests for categorical variables, Mann-Whitney U tests for ordinal data, and t-tests/ ANOVA for continuous data. Qualitative data will be analysed using thematic analysis. Conclusions: New pathways are required to advance service provision to ensure that patients receive the 'right care, in the right place, at the right time'. This protocol outlines a case study which will aim to develop current understanding of the implementation and delivery of a novel rehabilitative palliative care service in Ireland and will consider its potential contribution to the achievement of Sláintecare goals. Investigating the service within its environmental context will lead to a better understanding of 'how' and 'why' things happen. Findings will be used to inform efforts to further develop and tailor the intervention.

Volunteer-Based Social Support Structures and Program Exposure Outcomes in an Adolescent Young Adult Palliative Care Peer Support Program.

Objective: To conduct a social network analysis (SNA) of patient-volunteer networks and assess the impact of patient characteristics on network measures. Background: Volunteers play a critical role in providing peer support to adolescent and young adult (AYA) palliative care patients. Streetlight at UF Health is a peer support palliative care program for hospitalized AYAs that aims at forming positive peer relationships through volunteer visits, events, and a virtual online health community. Methods: Data were collected on patient characteristics, hospitalizations, average length of stays (LOS), and volunteer visitation records. Egocentric SNAs were conducted on each patient to calculate network outcomes. Study participants were AYA patients (N = 69), enrolled in the US-based Streetlight program at UF Health Shands Hospital. Results: The LOS was significantly associated with network size (B = 0.583; 95% confidence interval; CI [0.463 to 0.702]). Autoimmune patients had smaller network sizes when controlling for LOS. Total hospital admissions predicted - 0.172 ([- 0.263 to - 0.080]) lower average repeat visits. Higher average repeat visits were predicted for patients who had cancer (B = 0.246 [0.046 to 0.447]) and awaiting organ transplantation (B = 0.370 [0.082 to 0.658]). Although cystic fibrosis patients received more visits (B = 0.364 [0.003 to 0.724]) compared with other illness populations, the network density was lower (B = - 0.580 [1.01 to - 0.155]). Cancer patients had networks with a higher diversity in volunteer repeat visits (B = 0.714 [0.312 to 0.920]). Conclusions: Significant relationships between patient characteristics and network outcomes highlight the differences in social support service delivery among diverse populations. These analyses can be utilized in practice to guide program delivery for high-need patients.

QP1: Development of PharmPAL: A Collaborative Practice Pharmacy Clinic in an Ambulatory Care Clinic

Background: As authoritative resources on the optimal use of medications in symptom management, palliative care pharmacists exemplify several clinical, administrative, and educational roles within the outpatient clinic setting. Knowledge of medication-use processes allows pharmacists the ability to improve patient safety and outcomes. In 2018 a quality improvement project to optimize the scheduling of pharmacist-provider joint visits in the Dana-Farber Cancer Institute Outpatient Palliative Care Clinic led to overwhelming Adult Palliative Care (APC) provider satisfaction. Given this success and continued desire for pharmacy collaboration, the “PharmPAL” Clinic was initiated in July of 2020. PharmPAL is a collaborative drug therapy management (CDTM) clinic where credentialed pharmacists lead intermediary and follow-up palliative care visits encompassing patient assessments, counseling, education, ordering of laboratory tests, and selecting, initiating, continuing, and modifying medication regimens. The goal of PharmPAL is to support the growth of the palliative care clinic by providing care to patients with intense symptom management needs through interval visits with a pharmacist within their credentialed scope of practice, increasing the availability of follow-up to patients. Methods: Through a survey disseminated to all outpatient palliative care providers, reasons for referral for both joint visits and PharmPAL visits were gathered. Based on an overwhelming percentage of providers in favor of increasing PharmPAL visits, the weekly availability increased from eight 30 minute appointments per week in the first seven months to twelve 30 minute appointments each week. Results: The top five reasons for PharmPAL referral include new consult requiring close follow-up, education and counseling, stable patient for refill review, schedule availability, and regimen or medication change in the previous visit or anticipated in visit. Barriers to utilizing PharmPAL include pharmacist availability, APC scheduling, and out-of-state patients. An increase in PharmPAL availability has led to an increased volume of patients and encounters for both PharmPAL and the outpatient clinic overall. Additional surveys will be employed to address feedback for ongoing areas for improvement in order to reach our goal of a 30% increase of PharmPAL referrals within the first three months and continued improvement in overall provider satisfaction with PharmPAL. Conclusion: As outpatient palliative care clinics are incorporating pharmacist-led visits into practice, identification of outcomes metrics is critical to the ongoing growth of these clinics. Over the next several months we plan to continue to assess the impact PharmPAL has on clinic operations and provider satisfaction in the Dana-Farber Cancer Institute outpatient palliative care clinic.

Medical referral criteria for palliative care in adults: a scoping review.

Palliative care (PC) is focused on the relief of serious suffering due to severe illness. The Polish health care reimbursement system limits the access to PC to a so-called "basket" of recipients with life‑limiting incurable diseases (mainly cancer), not responding to disease‑modifying therapy. This scoping literature review was aimed to define the criteria of medical referral for PC in the context of the interpretation of the terms life‑limiting illness and disease‑modifying therapy, which may aid in increasing the number of appropriate referrals and patients receiving optimal treatment. The PubMed and Google Scholar databases (2011-2021) were searched using the following terms: referral, eligibility, admission as well as life-limiting, end‑stage and palliative care. Of 790 rertrieved articles, 103 studies met the inclu-sion criteria. Two groups of referral criteria were found: disease-or prognosis-based and needs‑based. The first group was focused on a survival prognosis of 6 to 12months, while the second encompassed the presence of severe, complex, or persistent symptoms or health problems not responding to optimal treatment. Numerous examples of disease‑modifying treatments for specific advanced diseases were found. The discriminants characterizing life‑limiting diseases in individual cases should preferably be used in clusters to accurately screen for PC eligibility. Equally important as limited survival prognosis is the presence of severe, complex, and persistent symptoms or problems occurring despite optimal treatment and general care. Based on the reviewed literature, the national reimbursement program should be urgently extended to cover more patients who are eligible and could benefit from specialist PC. Additionally, the importance of general PC should be universally acknowledged.

Multidisciplinary Care of Patients with Inherited Metabolic Diseases and Epilepsy: Current Perspectives

More than 650 inherited metabolic diseases may present with epilepsy or seizures. These diseases are often multisystem, life-long and induce complex needs of patients and families. Multidisciplinary care involves all stages of disease management: diagnostics, specific or symptomatic, acute and chronic treatments, and integrated care that takes into account not only medical, but also manifold psychosocial, educational, vocational and other needs of patients and their caregivers. Care coordination is indispensable to ensure smooth transitions of care across life and disease stages, including management of emergencies, transition from pediatric to adult services and palliative care. Care pathways are highly diverse and have to find the right balance between highly specialized and locally provided services. While multidisciplinary teams consist of many professionals, a named supervising physician in a highly specialized healthcare setting and a care coordinator are highly important. As the greatest burden of care always falls onto the shoulders of patients and/or families, patient empowerment should be a part of every care pathway and include provision of required information, involvement into common decision-making, patient’s and family’s education, support for self-management, liaison with peer support groups and emotional/ psychological support. Due to the rarity and complexity of these diseases, sufficient expertise may not be available in a national healthcare system and cross-border services (virtual or physical) in the recently developed European Reference Networks should be ensured through the proper organization of referral systems in each EU and EEA country. Finally, digital technologies are particularly important in the provision of services for patients with rare diseases and can significantly increase the availability of highly specialized services and expertise.