Care conundrum in the emergency department: The gap between clinician awareness and patient expectations surrounding advance directives.

OBJECTIVES: Clinicians in the emergency department (ED) frequently encounter seriously ill patients at a time when advance directives may be pivotal in improved clinician decision-making. The objectives of this study were to identify the prevalence of advanced directives in ED patients, as well as patterns of advance care discussions between patients and providers. This study describes patients' perceptions and expectations of such serious illness discussions in an emergency care setting with the expectation of including patients as strategic members of the care team. METHODS: Trained research assistants in two emergency departments surveyed patients over age 65, or their caregivers, from July 2016 to August 2018. Patients were verbally administered a standard survey tool related to advance directives and advance care planning. RESULTS: 497 out of 877 patients completed surveys (59.4%). 50% of patients reported having an advance care planning document. The large majority (92%) of patients with an advance directive had not been asked about it during their ED visit. When questioned about their personal preferences, 79% of patients thought emergency physicians should be aware of their wishes regarding life-sustaining treatments and end-of-life care. Paradoxically, only 38% expressed a desire to discuss advance care plans with an ED clinician. CONCLUSIONS: Older patients expect emergency clinicians to be aware of their care preferences, yet most are not asked about these care preferences in the ED. The large gap between patient preference and reality suggests the need for more targeted discussion by ED clinicians and translation of patient perspectives into system healthcare improvements. Future studies should explore barriers to advance care planning in the ED as well as patient preferences for these conversations to support a true healthcare learning system.

Understanding the Behavioral Health Needs of Hospice Patients and Their Family Caregivers: Perspectives of Hospice Medical Directors.

BACKGROUND: Behavioral health disorders are common among patients and caregivers in the hospice setting. Yet, limited data exist regarding what hospice providers perceive as the most common and challenging behavioral health disorders they encounter and how they manage these issues in practice. OBJECTIVE: To characterize the perspectives of hospice medical directors (HMDs) on addressing the behavioral health challenges when caring for patients enrolled in home hospice care and their family caregivers. METHODS: Semistructured interviews with seventeen certified HMDs were conducted. Data were analyzed using thematic analysis. RESULTS: Many HMDs agreed that delivering high-quality behavioral health care is a tenet for good end-of-life (EoL) care. HMDs shared that depression and anxiety were the most common behavioral health challenges they encountered, while among caregivers, substance use disorder was the most challenging. Participants mentioned that nurses and social workers played a vital role in detecting and managing behavioral health problems. HMDs also stated that providing additional training for frontline staff and incorporating behavioral health experts are potential solutions to help address current challenges. CONCLUSION: HMDs emphasized the importance of addressing behavioral health challenges among patients and caregivers to provide effective end-of-life care. Future studies should examine the viewpoints of additional key stakeholder groups (e.g., hospice interdisciplinary team members, family caregivers) and confirm them in quantitative studies. Designing and implementing evidence-based assessments and interventions to improve behavioral health care by addressing anxiety, depression, and caregiver substance use disorders is essential to improving care and care outcomes in the hospice setting.

Palliative care education and knowledge transfer into practice - a multicenter survey among medical students and resident physicians in Germany using a mixed-methods design.

Objective: In 2009, Palliative care was incorporated into the medical curriculum as Cross-Sectional Subject 13 (QB13) by means of the revision of the Medical Licensing Regulations for Physicians. The aim of this study was to determine the strengths and deficits of QB13 student education for palliative care in clinical practice in a multi-centre setting and to identify potential for improvement. Methods: Online questionnaires filled out by medical students during their Practical Year (PY) and resident physicians from the university hospitals in Aachen, Düsseldorf, and Cologne were descriptively analyzed using SPSS; free-text responses were categorized and quantified. Semi-structured interviews with the resident physicians (using a mixed-methods design) were analyzed through content analysis. Emerging categories were quantified. Results: Analysis of 130 fully completed questionnaires and 23 interviews revealed that participants particularly benefited from patient- and practice-oriented small-group sessions for their clinical work. Despite some university-specific differences, the PY students identified a need for training in end-of-life-care, while resident physicians saw a need for training primarily in dealing with patients and their relatives. They also reported deficits in transferability. Conclusion: QB13 should be organised in cross-university curricula and provide sufficient resources for practical-oriented small-group teaching. Based on the "unit of care", besides caring for palliative patients, dealing with patients' families should also be an education focus. To improve transferability into clinical practice, students should be actively involved in the care of palliative patients.

Dignity in the Pediatric Population: A Systematic Review.

CONTEXT: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult literature and other outcome measures. OBJECTIVES: To characterize how dignity is defined, evaluated, and/or measured in pediatrics. METHODS: We conducted a systematic review following PRISMA guidelines across the following databases: MEDLINE, Embase, Cumulative Index of Nursing and Allied Health, PsycINFO, Global Health, Social Science Premium Collection, and Dissertation and Theses. We included publications from database inception through April 2023, in English, involving children aged 0-18 years, and prioritizing dignity as a central theme with a focus on defining, evaluating, or measuring dignity. Study descriptions and pertinent characteristics were extracted and synthesized using a predefined form. RESULTS: Forty-four articles met inclusion criteria; fewer than half comprised original research (20/44, 45%). Most studies (38/44, 86%) included description of the meaning of dignity, with emergence of salient themes around respect, communication, agency/autonomy, and privacy. Less than half (19/44, 43%) included a measurement or evaluation of dignity; approximately one-third described dignity therapy. More than one-third of publications focused on dignity at end of life (17/44, 39%) and included discussions of palliative medicine and hospice (15/44, 34%). CONCLUSION: Relatively few published studies describe dignity in pediatrics. Opportunities exist to broaden scholarship on this topic in partnership with patients, families, and clinicians, with the goal of assessing and strengthening dignity-centered care across the illness course and at the end of life.

Prevalence and Mortality of Life-Threatening and Life-Shortening Diseases in Children and Adolescents in Germany.

This study provides prevalence and mortality data for 0- to 19-year-old children and adolescents with medically documented life-threatening and life-shortening diagnoses in Germany. A secondary data analysis of more than 12 million insured persons documented by the statutory health insurance funds in Germany from 2014 to 2019 was conducted in collaboration with the German Association of Statutory Health Insurance Funds (GKV-SV) and the Institute for Applied Health Research Berlin (InGef), whose data sets vary in collection methods. Diagnosis prevalence and mortality were calculated based on selected International Classification of Diseases, 10th Revision (ICD-10) codes reported in inpatient and outpatient care settings. In Germany, the diagnosis prevalence of life-threatening and life-shortening diseases in children and adolescents ranges between 319 948 (InGef-adapted Fraser list) and 402 058 (GKV-SV). These diagnoses can be differentiated into different disease groups (Together-for-Short-Lives [TfSL] 1-4). The TfSL-1 group in which curative treatment can be feasible represents the largest one, with 190 865 persons. In 2019, approximately 1458 children and adolescents with life-threatening and life-shortening diseases died. The current diagnostic and mortality data of affected children and adolescents in Germany serve as the essential foundation for further research into the health care of the target group.

Cross-sectional study to evaluate patients' medication management with a new model of care: incorporating a pharmacist into a community specialist palliative care telehealth service.

BACKGROUND: Patients receiving palliative care are often on complex medication regimes to manage their symptoms and comorbidities and at high risk of medication-related problems. The aim of this cross-sectional study was to evaluate the involvement of a pharmacist to an existing community specialist palliative care telehealth service on patients' medication management. METHOD: The specialist palliative care pharmacist attended two palliative care telehealth sessions per week over a six-month period (October 2020 to March 2021). Attendance was allocated based on funding received. Data collected from the medication management reviews included prevalence of polypharmacy, number of inappropriate medication according to the Screening Tool of Older Persons Prescriptions in Frail adults with limited life expectancy criteria (STOPP/FRAIL) and recommendations on deprescribing, symptom control and medication management. RESULTS: In total 95 patients participated in the pharmaceutical telehealth service with a mean age of 75.2 years (SD 10.67). Whilst 81 (85.3%) patients had a cancer diagnosis, 14 (14.7%) had a non-cancer diagnosis. At referral, 84 (88.4%, SD 4.57) patients were taking ≥ 5 medications with 51 (53.7%, SD 5.03) taking ≥ 10 medications. According to STOPP/FRAIL criteria, 142 potentially inappropriate medications were taken by 54 (56.8%) patients, with a mean of 2.6 (SD 1.16) inappropriate medications per person. Overall, 142 recommendations were accepted from the pharmaceutical medication management review including 49 (34.5%) related to deprescribing, 20 (14.0%) to medication-related problems, 35 (24.7%) to symptom management and 38 (26.8%) to medication administration. CONCLUSION: This study provided evidence regarding the value of including a pharmacist in palliative care telehealth services. Input from the pharmacist resulted in improved symptom management of community palliative care patients and their overall medication management.

Scope of services provided to childhood cancer patients by the Brazilian Pediatric Palliative Care Network.

Introduction: Brazil is a developing and an Upper Middle Income, categorized by the World Bank. Therefore, it is a country that needs a special vision for children with oncological diseases who require Pediatric Palliative Care. This study aimed to understand the specificities of services that provide oncology services in comparison to those that do not provide oncological care. Methods: This is a descriptive, cross-sectional, and online survey study. A questionnaire was created by a multidisciplinary group of leaders from the Brazilian Pediatric Palliative Care Network and then the survey was distributed using a snowball strategy. Results: Of the 90 services that answered the questionnaire, 40 (44.4%) attended oncologic patients. The Southeast represented most of the services (57.57%), followed by the Northeast, with 18.89% (17 services), the South with 12.22% (11 services), and the Center West with 8.89% (8 services). No differences were observed in access to opioid prescriptions between the services. It was observed that those services that attended oncologic patients had a tendency to dedicate more time to Pediatric Palliative Care. Discussion: The distribution of services that cover oncology and those that do not, are similar in the different regions of Brazil. In Brazil, there are difficulties in accessing opioids in pediatrics: access to opioid prescriptions without differences revealed that even pediatric oncologists might have difficulty with this prescription, and this should improve. It is concluded that education in Pediatric Palliative Care is the key to improvements in the area.

Successful Use of Propofol After Failed Palliative Sedation in Patients With Refractory Symptoms.

Context: Propofol is a general anesthetic used in multiple clinical scenarios. Despite growing evidence supporting its use in palliative care, propofol is rarely used in palliative sedation. Reluctance toward the adoption of propofol as a sedative agent is often associated with fear of adverse events such as respiratory arrest. Objectives: We aimed to describe efficacy and safety of palliative sedation in refractory sedation with propofol using a protocol based on low, incremental dosing. Methods: A retrospective observational study featuring inpatients receiving sedative treatment with propofol in our palliative care unit in Madrid (Spain) between March 1, 2018 and February 28, 2023, following a newly developed protocol. Results: During the study period, 22 patients underwent sedation with propofol. Propofol was used successfully to control different refractory symptoms, mainly psychoexistential suffering and delirium. All patients had undergone previous failed attempts at sedation with other medications (midazolam or lemovepromazine) and presented risk factors for complicated sedation. All patients achieved satisfactory (profound) levels of sedation measured with the Ramsay Sedation Scale, but total doses varied greatly between patients. Most patients (17, 77%) received combined therapy with propofol and other sedative medications to harness synergies. The median time between start of sedation with propofol and death was 26.0 hours. No cases of apnea or death during induction were recorded. Conclusion: A protocol for palliative sedation with propofol based on low, incremental dosing, with the option of administering an initial induction bolus, shows excellent results regarding adequate levels of sedation, without observing apnea or respiratory depression. Our results promote the use of propofol to achieve palliative sedation in patients with refractory symptoms and risk factors for complicated sedation at the end of life.

Opioid Medication Errors in Patients Followed by Home Palliative Care Support Teams in the Community of Madrid.

The presence of comorbidities and complex drug regimens makes palliative care patients more susceptible to opioid medication errors. Most of the studies conducted so far have mainly focused on patients admitted to hospitals or hospice facilities. During this study, we examined the frequency of medication errors with opioids and the causes and consequences for patients, followed by home palliative care teams. Errors occurred in 39% of patients (n = 378) and 27% of all prescribed opioids (n = 708). Of the 148 (39%) patients with error/s in the opioid/s prescribed, in 55% the patient and/or the caregiver were involved in the error; in 26% the health care providers were involved. An association was found between the presence of error in the prescribed opioid and the level of patient education, p = .038, and with the number of days of follow-up, p < .001. Considering their formulation, the prescribed opioids were associated with medication error, type of error, and cause of the error. The study demonstrated an association between the route of administration and error p < .004, and type of error p < .001.

Questionnaire on the Current Status and Awareness of Palliative Medicine by Community Cooperation Pharmacies.

Community cooperation pharmacies are equipped to prepare narcotics and sterile injectable drugs for palliative medicine at home for cancer pain and end-of-life care; however, to the best of our knowledge, the actual status of the system to provide palliative medicine at home has not yet been examined. Therefore, in this study, given that home palliative medicine is one of the accreditation criteria for community cooperation pharmacies, a questionnaire survey was conducted among managing pharmacists engaged in community cooperation pharmacies to investigate the actual status of the system to provide appropriate services, mainly pain management, to patients who need home palliative medicine. An analysis of responses to the questionnaire showed that pharmacists working in community cooperation pharmacies had a high level of understanding of the proper use of rescue doses of medical narcotics and patient guidance. Pharmacists with experience in sterile and injection preparations also had a high level of understanding of palliative medicine. On the other hand, they had a low level of understanding of the WHO method for cancer pain treatment and appropriate suggestions for opioid switching. These results indicate that the creation of learning opportunities, such as training on injectables and prescription designs, for pharmacists in community cooperation pharmacies is one of the measures that may improve their understanding of palliative medicine.

Dementia patients in palliative care according to data from the German National Hospice and Palliative Care Register (2009-2021).

BACKGROUND: People with dementia are less in focus of palliative care research than other patient groups even though the awareness of their palliative and end-of-life care needs is rising. Empirical data analyses on people with dementia in palliative care services are lacking. AIM: To explore the prevalence of dementia diagnoses as per the ICD criteria among users of various palliative care settings and to compare use of palliative services, care pathways, and outcomes in people with and without a dementia diagnosis. DESIGN: We conducted retrospective analysis of dementia diagnoses as per ICD (F00-F03/G30) in the German National Hospice and Palliative Care Register between 2009 and 2021. The analysis used methods of descriptive and inferential statistics, including the Bonferroni correction for alpha error inflation. SETTING/PARTICIPANTS: We limited the analysis to the subsample of people aged over 64. RESULTS: The prevalence of dementia in the different settings of palliative care was lower than in the age-comparable population: Of the 69,116 data sets included in the analysis, a small minority (3.3%) was coded with dementia as the principal diagnosis. Among patients on inpatient palliative care wards, 0.8% (148 of 19,161) had a dementia diagnosis, as did 2.2% (52 of 2,380) of those under hospital palliative care support teams and 4.3% (2,014 of 46,803) of those receiving specialized palliative care at home. CONCLUSIONS: The records of the German National Hospice and Palliative Care Register suggest that the prevalence of dementia is lower than one might expect from general population data, though numbers are in line with international studies on proportion of dementia patients receiving palliative care. Future research could usefully examine whether this discrepancy stems either from omissions in coding dementia as patients' principal diagnosis respectively from lapses in documentation of a dementia diagnosis previously made, or from barriers to accessing palliative care services or even displays being excluded from palliative care when trying to access it. TRIAL REGISTRATION: No registration.

Midazolam Indications and Dosing in Palliative Medicine: Results from a Multinational Survey.

Despite sparse evidence and limited guidance on indications, use, and dosing, midazolam is widely used in palliative care. We aimed to describe and compare the use of midazolam in three different countries to improve clinical practice in palliative care. We performed an online survey among palliative care physicians in Norway, Denmark, and the United Kingdom (UK). The focus was indications, dosing, administration, and concomitant drugs. A web-based questionnaire was distributed to members of the respective national palliative medicine associations. The total response rate was 9.4%. Practices in the UK, Norway, and Denmark were overall similar regarding the indications of midazolam for anxiety, dyspnoea, and pain treatment in combination with opioids. However, physicians in the UK used a higher starting dose for anxiety, dyspnoea, and pain treatment compared to Norway and Denmark, as well as a higher maximum dose. Danish physicians preferred, to a higher degree, on-demand midazolam administration. Despite practice similarities in the UK, Norway, and Denmark, differences exist for midazolam dosing and administration in palliative medicine. We demonstrated a lack of consensus on how midazolam should be used in palliative care, setting the stage for future studies on the topic.

[Palliative neurology]. / Palliativneurologie.

Palliative medicine represents the holistic multiprofessional treatment of severely and incurably ill people and their relatives, addressing their complex physical, psychological, social and spiritual needs. The central therapeutic goals are the quality of life and alleviation of suffering. In the course of many neurological diseases, high symptom burden, long and variable trajectories and unfavorable prognosis at times create a need for palliative care even at an early stage, which is currently still inadequately met. This can be countered by qualified neuropalliative care. In addition to intensifying interdisciplinary collaboration, this requires neurologists to have core competencies in palliative care. These include a team-oriented attitude, communication skills, expertise in symptom control and knowledge of biomedical ethics including palliative options at the end of life.

Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life.

CONTEXT: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. OBJECTIVE: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language. METHODS: We conducted a cross-sectional study of patients who died at Texas Children's Hospital from 2018 to 2019. Demographics, date of death, and final code status were extracted. Medical complexity prior to admission and mode of death were obtained from chart review. RESULTS: We included 433 patients. Over one-third were Hispanic (39.3%) with 42.3% preferring Spanish. The majority were White (61.4%) or Black (21.0%). Most patients had significant medical complexity (52.0%) or were infants in their birth admission (29.4%). Half (52.4%) received palliative care; patients with increased medical complexity were more likely to have palliative care involved (P<0.001). There were no differences in palliative care, code status, or mode of death by race. Hispanic patients were less likely to have a full code status (OR 0.42, 95% CI: 0.25-0.73). Spanish-speaking patients were more likely to have palliative care involvement (OR 2.05, 95% CI: 1.21-3.46) and less likely full code orders (OR 0.24, 95% CI: 0.1-0.63). CONCLUSION: Palliative care services are engaged with most children at end of life and is accessible to marginalized patient groups. Spanish-speaking patients have different code status orders and modes of death at end of life. Further studies are needed to elucidate explanatory factors for differences revealed and multicenter studies are needed to characterize more widespread experiences.

Integrating an Interventional Pain Management Curriculum in Hospice and Palliative Medicine Fellowship Training: A Feasibility Study.

BACKGROUND: Pain is a common symptom for patients with cancer. Hospice and Palliative Medicine (HPM) physicians are expected to be experts in both pharmacologic and non-pharmacologic treatment of pain for this patient population. Insufficient knowledge of non-pharmacologic, interventional approaches to pain management is a barrier to providing optimal care. This study assesses the feasibility and effectiveness of an interventional pain management curriculum on HPM fellow knowledge at a single institution. OBJECTIVES: The primary objective was to implement an interventional pain management curriculum for HPM fellows' and secondly to measure its effects on their knowledge and confidence in interventional pain management approaches. METHODS: We executed an interventional pain management curriculum for HPM fellows. The curriculum consisted of 6 fifty-minute virtual lectures. Anonymous pre- and post-curriculum surveys were used to assess curricular impact. RESULTS: Post-course surveys showed a significant increase in HPM fellows' knowledge and confidence in interventional pain management techniques. CONCLUSIONS: An interventional pain management curriculum for HPM fellows is a feasible and promising intervention to significantly impact fellows' knowledge and confidence in non-pharmacologic treatment of cancer pain.

Effects of early palliative care integration on patients with newly diagnosed multiple myeloma.

PURPOSE: While numerous studies underscore the benefits of early palliative care (EPC) for patients with solid tumors, its effects on patients with multiple myeloma (MM) are not as widely known. This study aims to determine the effects of EPC integration on patients with newly diagnosed symptomatic MM and the feasibility of this approach. METHODS: This prospective cohort study enrolled patients within eight weeks of diagnosis. Participants met with a palliative care team monthly for 12 months. Functional Assessment of Cancer Therapy-General (FACT-G) plus Multiple Myeloma Subscale (FACT-MM), and Hospital Anxiety and Depression Scale (HADS) were administered upon enrollment and every three months. Proportion of completed visits and assessments determined the feasibility of EPC. RESULTS: Of the twenty participants enrolled from January 2020 to November 2022, median age was 65 (range 40, 77), 15 (75%) were female, 15 (75%) were white, 65% completed assessments at six months, and 60% at 12 months. The following measures significantly improved at 12 months versus baseline: FACT-G scores increased by 15.1 points (adjusted 95% CI: 2.2-28.1, adjusted p = 0.02); Functional Well-Being scores increased by 6.0 points (adjusted 95% CI: 1.1-10.9, adjusted p = 0.01); and Pain Subscale scores increased by 3.4 points (adjusted 95% CI: 0.5-6.4, adjusted p = 0.02). Depression and anxiety scores did not significantly change over time. CONCLUSION: Functional well-being, pain experience and overall QOL improved in a cohort of patients with newly diagnosed MM after 12 months of EPC involvement. Although monthly visits seemed feasible, the findings suggest that further research is needed to explore the optimal timing of palliative care interventions in the MM trajectory. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT04248244 (Registration Date: January 30, 2020).

Outpatient Training During Hospice and Palliative Medicine Fellowship: A National Survey.

CONTEXT: Outpatient palliative care (PC) has strong evidence demonstrating impact across serious illnesses, resulting in growing demand for skilled outpatient PC clinicians. However, there is limited literature examining the existing state and quality of outpatient PC education during postgraduate training. OBJECTIVES: Characterize the current state of outpatient training in United States (US) Hospice and Palliative Medicine (HPM) physician fellowships and elicit perceptions regarding quality of outpatient PC education. METHODS: A cross-sectional survey of US adult HPM fellowship program directors (PDs) or their designee conducted between March and July, 2023. RESULTS: Of 161 programs, 85 participated (53% response rate) with representation across all US regions. HPM fellows spend a median of 4.8 weeks in outpatient PC compared to 24 weeks inpatient PC and 10.5 weeks in hospice settings. Over half (51%) of fellows saw outpatients from primarily one disease type with limited exposure to patients with other serious illnesses. Across programs, fellows' clinic structure, interdisciplinary team composition, and didactic experiences varied. On a 5-point rating scale, PDs reported significantly lower quality outpatient versus inpatient training (mean rating: 3.58 vs. 4.62, P<0.001) and perceived fellows as less prepared for independent outpatient practice upon graduation (mean: 4.06 vs. 4.73, P<0.001). CONCLUSION: Our survey of US HPM fellowships identified multiple gaps between outpatient and inpatient PC education and training during fellowship and raises concern about the adequacy of outpatient PC training. To prepare the HPM workforce to meet the diverse needs of seriously ill populations and ensure adequate access, outpatient PC training requires reform.

Palliative care education in undergraduate medical and nursing programs in Colombia: a cross-sectional analysis.

BACKGROUND: The number of people suffering from chronic diseases requiring palliative care (PC) is increasing rapidly. Therefore, PC teaching in undergraduate health science programs is necessary to improve primary PC based on international recommendations and available scientific evidence. METHODS: A descriptive cross-sectional study was conducted. Active undergraduate medical and nursing programs that were approved by the Colombian Ministry of Education and integrated PC teaching into their curricula were included in the study. The total sample consisted of 48 programs: 31 nursing and 17 medical programs. RESULTS: PC competencies are distributed throughout the curriculum in 41.67% of programs, in elective courses in 31.25%, and in mandatory courses in 27.08% of the programs. The average PC teaching hours is 81 for nursing and 57.6 for medicine. PC clinical rotations are not offered in 75% of the programs. For undergraduate nursing programs, the most frequent competencies taught are the definition and history of PC and identifying common symptoms associated with advanced disease. In undergraduate medicine, the most common competencies are pharmacological and non-pharmacological pain management and identification of PC needs. CONCLUSIONS: PC teaching in undergraduate health science programs mainly addresses the conceptual and theoretical aspects of PC, which are part of the competencies present throughout the programs' curricula. Low availability of PC clinical rotations was identified. Future studies should assess whether the low availability of clinical rotations in PC limits the ability of students to develop the practical competencies necessary to provide quality PC. TRIAL REGISTRATION: Not applicable.