Neuropalliative Care Research Articles

Palliative Care Interventions for Persons With Neurodegenerative Disease: A Scoping Review of Clinical Trial Study Design Features.

Background: Within palliative care research, best practice guidelines to conduct scientifically rigorous clinical trials for neurodegenerative diseases are underexplored. This patient population experiences unique challenges, including fluctuations in cognitive capacity, care partner (CP) and proxy involvement, and high adverse events (AEs), that necessitate special consideration when designing clinical trials. Objective: The objective of this study was to describe and identify clinical trial design features that have been documented in studies involving a neuropalliative intervention for persons with neurodegenerative diseases, highlighting features that have been adapted for this unique patient population. Design: We conducted a scoping review of clinical trials with a neuropalliative intervention for persons with neurodegenerative disease. We searched Cochrane, Web of Science, EMBASE, Scopus, and PubMed (MEDLINE) databases for articles published in English between 1950 and 2023. Two reviewers screened, extracted, and synthesized data from the included articles. A third reviewer adjudicated instances of conflict. The data were analyzed using a thematic framework approach. Results: Of 1025 texts, 44 articles were included. Seven study design features were analyzed: (1) consent, (2) proxies and CPs, (3) recruitment strategies, (4) retention strategies, (5) choice of comparator, (6) AEs, and (7) internal validity. This scoping review found disparities in study design features around structured consent, proxies and CPs, comparators, and AEs. Conclusions: To date, neuropalliative care clinical trials have had varied study designs and the majority of research has focused on dementia. Research guideline development for high-quality neuropalliative care clinical trials is greatly needed across the range of neurodegenerative diseases. To increase the scientific rigor of clinical trials and neuropalliative care, we recommend a standardized capacity assessment for consent, defining conditions for the CP, proxy, and AEs, systematizing appropriate comparators, and outlining preemptive recruitment and retention strategies to address the broader unpredictable challenges of palliative care research.

Advancing Methodological Rigor for Psychosocial Aspects of Neuropalliative Care Interventions.

Background: Neurological disorders (NDs) have unique biopsychosocial-spiritual features that impact patients and their families. As a result, the subspeciality of neuropalliative care (NPC) emerged within the past decade and has grown exponentially in research and practice. Given the cognitive, emotional, and behavioral changes associated with NDs, psychosocial components (eg, coping skills) of NPC interventions are essential for improving the quality of life for patients and families. However, psychosocial components of NPC interventions warrant more rigorous testing to improve their evidence base and their likelihood of implementation and dissemination. Aim: In this commentary, we provide methodological recommendations with the goal of improving scientific knowledge and rigor for psychosocial components of multicomponent NPC interventions in clinical trials. Results: We emphasize the need for transparent reporting of psychosocial intervention components; using established models of intervention development to guide the development and testing of multicomponent NPC interventions; identifying mechanisms of action for psychosocial outcomes; and choosing psychometrically sound measures for mechanisms and outcomes. Conclusions: Given the importance of psychosocial care to the holistic NPC model, rigorous testing of psychosocial components of NPC interventions is a high priority for clinical investigators to advance the evidence base and practice of NPC.

Palliative Care in Neuro-oncology.

Historically, the practice of neurology as an independent subspecialty from internal medicine began in Europe and the United States in the 1930s. The American Academy of Neurology (AAN) was founded 75 years ago in 1948, solidifying its emergence as a stand-alone discipline of medicine. In 1967, St. Christopher's Hospice, the first free standing hospice home, was opened in London by Dame Cicely Saunders. Dame Saunders is considered a pioneer in the development of the hospice movement, and she embodies the importance of the multi-disciplinary team in the care of the patient, as she began her career as a nurse, then became a social worker and, finally, a physician. A decade later, in 1978, Dr. Balfour Mount, a Canadian urologic cancer surgeon, coined the term "palliative care" ("to improve the quality of life") after having spent time with Dr. Saunders at St. Christopher's some years earlier. The field of palliative care continued to develop as a distinct subspecialty focused on improving quality of life for patients at any age and in any stage of serious illness. In a 1996 position statement, the AAN made clear that the practice of primary palliative care is the responsibility of all neurologists to their patients. Finally, coming full circle, the specialty of neuro-palliative care, a subspecialty not just of neurology but of palliative medicine, became established around 2018. Neuro-palliative care can be seen as a specialty focusing on the holistic approach to symptom management in patients suffering from neurologic disease with the aim of improved symptom control and attention to the psychologic and spiritual aspects of illness.

Neuropalliative care in a tertiary-level hospital.

Palliative care in neurology is a recent specialty to improve the quality of life of patients with severe neurological diseases. This study aims to determine the frequency of neurological inpatients who had indication of palliative care, and evaluate the symptomatology, demographic profile, the need for supportive measures, advance directives for life and medical history of patients in a tertiary hospital in Brazil. This cross-sectional analytical study evaluated all patients admitted to the neurological semi-intensive care unit (ICU) at Hospital Israelita Albert Einstein with neurological conditions from February through August 2022. The Palliative Performance Scale (weight loss greater than 5% associated with body changes and a negative response to the question: 'Would you be surprised if the patient died within 1 year?') was used to indicate palliative care. Patients were divided into three groups: patients with palliative care needs (groupindication), patients without palliative care needs (groupwithout indication) and patients who received at least one assessment of a palliative care team (grouppalliative). Demographic data were analysed using the Χ2 test for qualitative and Kruskal-Wallis test for quantitative variables. Of the 198 patients included in the study, 115 (58%) had palliative care needs. Only 6.9% received assessment by the palliative care team, and 9.56% had advance directives in their medical records. Patients in groupindication had a higher prevalence of symptoms, such as fatigue, depression, shortness of breath and lack of appetite, and required more supportive measures, such as oxygen therapy, enteral/parenteral nutrition, admissions at ICU and days in hospital. Despite the high demand for palliative care in neurology, few patients receive this treatment, resulting in decreased quality of care. Therefore, greater integration and discussion of palliative care in neurology are needed.

Telemedicine and improving ambulatory neuropalliative care

Telemedicine and improving ambulatory neuropalliative care

Using a single telemedical center to expand access to neuropalliative care for ambulatory teams in Germany

Using a single telemedical center to expand access to neuropalliative care for ambulatory teams in Germany

Neuropalliative Care for Stroke Providers.

Neuropalliative Care for Stroke Providers.

Patient and caregiver questions and clinician responses during initial outpatient neuropalliative care appointments

ObjectiveOpen communication during appointments exemplifies person-centered care. The current study characterized questions asked by persons with neurologic illnesses and their caregivers—and clinicians' responses to those questions—during initial outpatient palliative care appointments. MethodsWe coded type (direct or indirect) and topic of questions stated by patients and their caregivers in audio recordings from 38 initial outpatient palliative care appointments. We also coded the completeness and quality features of clinicians' responses. ResultsPatients and caregivers stated 556 total questions; most were direct questions (79.7%) and primarily about symptoms, treatment, and lifestyle issues. Clinicians responded to more than 90% of all questions. Responses to both question types were similar in completeness and quality, but clinicians more frequently offered support in response to direct questions and gave recommendations in response to indirect questions. ConclusionPersons with neurologic illnesses and their caregivers use different question types to obtain information about symptoms and treatment during initial palliative care appointments. Results may guide clinician training and patient education for optimizing information exchange in palliative care. InnovationThis study is the first to explore patient and caregiver use of indirect questions in neuropalliative care appointments and the quality of clinicians' responses to those questions.

20 Years Later, Neuropalliative Care Is Finally on the Map

20 Years Later, Neuropalliative Care Is Finally on the Map

The current state of neuropalliative care in developing countries. Where are we now?

The need for improved palliative care in developing countries is great. Of 58 million people who die every year, 45 million die in developing countries. An estimated 60% (27 million) of these people in poor nations would benefit from palliative care, and this number is growing as chronic diseases such as cancer rise rapidly. Yet a combination of highly restrictive policies on opioid prescription and a lack of awareness within the medical profession conspire to deprive patients of palliative care. Human rights advocates argue that this neglect is a breach of human rights that is tantamount to torture. This editorial explores the neuropalliative approach and addresses the current state of neuropalliative care in developing countries.

Simulation training in Neuropalliative Care (P8-6.002)

<h3>Objective:</h3> The purpose of our study is to evaluate if a simulation in neuropalliative care is a useful training method for neurology residents. <h3>Background:</h3> Education in palliative care is lacking in neurology training. The majority of neurology residency programs do not have a formal way to train and assess residents in this domain. <h3>Design/Methods:</h3> The simulation targeted adult and pediatric Neurology residents ranging from PGY2-PGY4. The Serious Illness Conversation Guide (SICG) was used as a framework. Residents first received a didactic reviewing the SICG, followed by two simulations with standardized patients (SPs). The first simulation focused on giving bad news in the outpatient setting. The second focused on shared decision making in the inpatient setting. Residents filled out surveys assessing their comfort levels before and after the simulations, as well as 3 months later to determine how it influenced their practice. <h3>Results:</h3> Twenty-one residents participated in the simulation. Survey responses were received from 100% of participants. After the simulation, respondents who felt comfortable giving bad news increased by 11% for the inpatient setting and by 19% for the outpatient setting. There was a trend towards improved comfort in assessing illness understanding, managing uncertainty in prognosis, making a recommendation based on patient goals, and discussing hospice options. Overall, 91% thought the simulation accurately represented real life and 100% felt that the simulation would influence their future practice. At 3 months after the simulation, 85% of trainees reported using the SICG in palliative care conversations. <h3>Conclusions:</h3> Simulation training with SPs is a valuable way to train neurology residents in neuropalliative care discussions. Future simulations can tailor specific scenarios to resident level of training. <b>Disclosure:</b> Dr. Lalla has nothing to disclose. Ms. Dobie has nothing to disclose. The institution of Dr. Bissonnette has received research support from Michael J Fox Foundation. The institution of Dr. Bissonnette has received research support from Cogan Family Foundation. Dr. Lau has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Guidepoint. The institution of Dr. Lau has received research support from Amyloidosis Foundation. Dr. Tulsky has received personal compensation in the range of $10,000-$49,999 for serving as an officer or member of the Board of Directors for American Board of Internal Medicine. Dr. Kaku has received personal compensation in the range of $5,000-$9,999 for serving as an Expert Witness for Fatcliffe Harten Galamaga LLP.

Examining the Role of Narrative in Palliative Care for Parkinson Disease: Changing the Story.

Recent years have seen growing interest in neuropalliative care as a subspecialty. Simultaneously, the rise of narrative medicine in patient support groups and clinician training programs offers a way to listen deeply to the stories of those living with chronic illness and may inform corresponding health interventions. This commentary examines the ways in which an understanding of illness narrative schemata, particularly the so-called "chaos narrative," can contribute to patient and care partner distress, which in turn can be alleviated by a palliative care approach. Through examples of stories of people with Parkinson disease and their care partners, the article emphasizes the intersections between narrative medicine, neurology, and palliative care. Specific opportunities for bringing narrative medicine into the clinic are discussed.

Prognostic humility and ethical dilemmas after severe brain injury: Summary, recommendations, and qualitative analysis of Curing Coma Campaign virtual event proceedings.

Patients with severe acute brain injuries (SABI) are at risk of living with long-term disability, frequent medical complications and high rates of mortality. Determining an individual patient's prognosis and conveying this to family members/caregivers can be challenging. We conducted a webinar with experts in neurosurgery, neurocritical care, neuro-palliative care, neuro-ethics, and rehabilitation as part of the Curing Coma Campaign, which is supported by the Neurocritical Care Society. The webinar discussed topics focused on prognostic uncertainty, communicating prognosis to family members/caregivers, gaps within healthcare systems, and research infrastructure as it relates to patients experiencing SABI. The purpose of this manuscript is to describe the themes that emerged from this virtual discussion. A qualitative analysis of a webinar "Prognostic Humility and Ethical Dilemmas in Acute Brain Injury" was organized as part of the Neurocritical Care Society's Curing Coma Campaign. A multidisciplinary group of experts was invited as speakers and moderators of the webinar. The content of the webinar was transcribed verbatim. Two qualitative researchers (NK and BM) read and re-read the transcription, and familiarized themselves with the text. The two coders developed and agreed on a code book, independently coded the transcript, and discussed any discrepancies. The transcript was analyzed using inductive thematic analysis of codes and themes that emerged within the expert discussion. We coded 168 qualitative excerpts within the transcript. Two main themes were discussed: (1) the concept of prognostic uncertainty in the acute setting, and (2) lack of access to and evidence for quality rehabilitation and specialized continuum of care efforts specific to coma research. Within these two main themes, we found 5 sub-themes, which were broken down into 23 unique codes. The most frequently described code was the need for clinicians to acknowledge our own uncertainties when we discuss prognosis with families, which was mentioned 13 times during the webinar. Several strategies were described for speaking with surrogates of patients who have had a severe brain injury resulting in SABI. We also identified important gaps in the United States health system and in research to improve the care of patients with severe brain injuries. As a result of this webinar and expert discussion, authors identified and analyzed themes related to prognostic uncertainty with SABI. Recommendations were outlined for clinicians who engage with surrogates of patients with SABI to foster informed decisions for their loved one. Finally, recommendations for changes in healthcare systems and research support are provided in order to continue to propel SABI science forward to improve future prognostic certainty.

From parasomnia to agrypnia excitata - An illustrative case on diagnostic approach

The diagnostic approach to sleep-related movements disorders is seldom discussed. We report a case of fatal familial insomnia who initially presented with persistent limb movements in sleep, which later progressed to a state of agrypnia excitata. Here, the evaluation of abnormal movements in sleep is discussed using a step-by-step diagnostic approach. Although no cure is available for fatal familial insomnia, prompt recognition of this condition is important to facilitate proper management, including the involvement of interdisciplinary neuropalliative care.

Physician distress when treatments fail. Survey on physician distress when treating persons with drug-resistant epilepsy and knowledge of neuropalliative care

ObjectiveDrug-resistant epilepsy can be difficult to cure and may pose emotional challenges for epilepsy providers. Neuropalliative care (NPC) can augment quality of life (QOL) in persons with neurological diseases and may add meaningful elements to the treatment repertoire of epilepsy specialists even if seizures continue. However, NPC has not been widely implemented in epilepsy. Our study aimed to determine whether physicians of persons with drug-resistant epilepsy (PWDRE) experience distress when faced with treatment failure (Engel class ≥ 2), either failure of medications-only (PWDREmo) or of both medications and surgery (procedures with curative intent (PWDREms)). Furthermore, we evaluated physician knowledge about and referrals to NPC following treatment failures to help improve patient QOL despite ongoing seizures. MethodsAn anonymous online survey was distributed to US epilepsy physicians through the American Epilepsy Society website and personal email to assess levels of distress experienced when caring for PWDREmo and PWDREms (7-point Likert scale [“1” = “no distress”, “7” = “most distress ever felt”]), and knowledge and use of NPC. ResultsEighty-two physicians completed the survey. Most experienced distress when epilepsy treatments failed: 59% felt moderate distress (≥4) with PWDREmo (median “4”, mean 3.74, range 1–7), 90% suffered moderate to severe distress (5, 5.17, 1–7) with PWDREms. Distress over PWDREms was significantly greater than distress over PWDREmo (p < 0.0001). Forty-three percent reported confidence in their knowledge about NPC. Only 15% were likely to refer PWDREmo to NPC, while 44% would consider it for PWDREms. ConclusionAmong survey responders, physician distress was high when confronted with treatment failures, especially the failure of epilepsy surgery. Fewer than half of responders were likely to refer patients to NPC. Further research is necessary to determine extent, reasons, and effects of physician distress and whether improved understanding of and patient access to NPC would help alleviate physician distress when faced with treatment failures in PWDRE.

Effects of Palliative Care for Progressive Neurologic Diseases: A Systematic Review and Meta-Analysis.

To determine the association of palliative care for progressive neurologic diseases with patient- and caregiver-centered outcomes. Systematic review and meta-analysis of randomized controlled trials and quasi-experimental studies, including pilot studies. Adults with progressive neurologic diseases (dementia, multiple sclerosis, Parkinson's disease, motor neuron disease, multiple system atrophy, and progressive supranuclear palsy) and their caregivers. MEDLINE, EMBASE, CINAHL PLUS, Cochrane CENTRAL, and PubMed were searched from inception to September 2021. Two reviewers independently screened studies, extracted data, and assessed risk of bias using the Cochrane risk of bias tools. Narrative synthesis was conducted. Patient quality of life (QoL), symptom burden, caregiver burden, and satisfaction with care were meta-analyzed using a random-effects model. Fifteen trials provided data on 3431 patients (mean age, 73.9years). Compared with usual care, palliative care was statistically significantly associated with lower symptom burden [standardized mean difference (SMD),-0.34 (95% Cl,-0.59 to-0.09)] and higher caregiver satisfaction [SMD, 0.41 (95% Cl, 0.12 to 0.71)] and patient satisfaction [SMD, 0.43 (95% Cl,-0.01 to 0.87)]. However, the associations were not significant after excluding studies with high risk of bias. Insignificant associations of palliative care with caregiver burden [SMD,-0.09 (95% Cl,-0.21 to 0.03)] and patient QoL [SMD, 0.19 (95% Cl,-0.07 to 0.44)] were observed. Palliative care is likely to improve symptom burden and satisfaction with care among patients with progressive neurologic diseases and their caregivers, while its effects on QoL and caregiver burden remains inconclusive. Specific intervention components including interdisciplinary team, palliative care physicians, home visits, and spiritual care appeared to be associated with increased effects on improving palliative outcomes. More rigorous designed studies are warranted to examine the effects of neuropalliative care, effective intervention components, optimal timing, and symptom triggers of palliative care referrals.

Neuropalliative Care in India - Barriers, Challenges and Future Directions.

Neuropalliative care is an emerging sub-specialty of neurology and palliative care that aims to relieve suffering from symptoms, reduce distress and improve the quality of life of people with life-limiting neurological conditions and their family caregivers. As advances are being made in the prevention, diagnosis, and treatment of neurological illnesses, there is an increasing need to guide and support patients and their families through complex choices involving immense uncertainty and important life-changing outcomes. The unmet need for palliative care in neurological illnesses is high, especially in a low-resource setting like India. This article discusses the scope of neuropalliative care in India, the barriers and challenges that impede the specialty's development, and the factors that could facilitate the development and scale-up delivery of neuropalliative services. The article also attempts to highlight priority areas for advancing neuropalliative care in India which include context-specific assessment tools, sensitization of the healthcare system, identification of intervention outcomes, the need for developing culturally sensitive models based on home-based or community-based care, evidence-based practices, and development of manpower and training resources.

Burdens and Resources of Staff of a Specialized Ward for Neuropalliative Care: A Cross-Sectional Survey.

Palliative care adds significant burdens to healthcare workers. In neuropalliative care (NPC), additional challenges include patient symptom burdens, such as impairments in mobility, cognition, and communication. After one year of operating the first NPC ward in Germany, we assessed burdens, resources, and the number of deaths perceived as stressful. NPC physicians and nursing staff were compared with the team of other neurological wards, including a stroke unit. The assessment took place between March 2022 and May 2022. All 64 team members were contacted; the responder rate was 81%. The perceived burden was high but did not differ between groups. There were no differences between the NPC- and the neurological wards in the number of deaths perceived as stressful. However, rather than the number of deaths, the circumstances of dying influence the perceived distress. The resources mentioned were similar between groups, with the team and private life being most important. Communication difficulties were frequently cited as stressful, whereas successful communication was identified as a resource.

Neurological consultations via telemedicine for specialized outpatient palliative care (SOPC) at home and in hospice (TANNE project): study protocol for a randomized controlled trial

BackgroundNeurological diseases cause numerous challenges in palliative care. Telemedicine may improve the access to specialized expertise in neurology for patients, their relatives, and palliative care physicians. The TANNE study offers teleconsultations by a hospital-based neuropalliative center for specialized outpatient palliative care (SOPC) and hospices. A prospective, partially randomized, controlled trial aims at generating evidence for clinical improvements, quality of life, and cost efficiency.MethodsSOPC and hospice teams in Bavaria, Germany, are partially randomized to one of two study arms, namely a treatment group with teleconsultations by specialists for neurology and palliative medicine or to a control group with interventions after a 12-months delay. Individual and population-based measures are assessed with a mixed-methods design in order to evaluate the medical effects, the potential for implementation in standard care, and health economic aspects. The primary outcome consists of the mean change difference between groups in the Integrated Palliative Care Outcome Scale (IPOS), which physicians assess before and after treatment of a neurological event. Besides, several secondary outcomes are investigated, including quality of life, which is measured with the revised McGill Quality of Life Questionnaire (McGill QOL-R) as well as items regarding general and health-related quality of life. Further secondary outcomes include the concrete progress of the neurological signs and symptoms; the subjective change in well-being since the start of the treatment of the neurological diseases from the perspectives of patients, their relatives, as well as medical and nursing professionals; as well as patient, professional, and caregiver satisfaction with the teleconsultations. Moreover, a health economic evaluation compares group differences regarding hospital visits and emergency calls with utilization measurements.DiscussionThe TANNE trial provides a comprehensive and complex evaluation design for teleconsultations in neuropalliative care. Ethical considerations need to take the patients’ vulnerability into account. The project promises to substantially broaden the width of health care services and to improve the quality of life for deserving patients.Trial registrationGerman Clinical Trials Register (www.germanctr.de [July 17, 2022], DRKS ID: DRKS00027436. Registered February 10th, 2022, retrospectively registered. https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00027436 [July 17, 2022].

Curriculum Innovations: Implementing a Neuropalliative Care Curriculum for Neurology Residents

Background and Objectives Neuropalliative care is an emerging interprofessional field that aims to improve communication and quality of life for all people affected by serious neurologic disease. Teaching neuropalliative care skills is a key objective for neurology residencies, and the Accreditation Council for Graduate Medical Education requires proficiency in palliative care. The objective of this study was to describe a novel longitudinal multimodal curriculum in neuropalliative care communication and evaluate its feasibility and outcomes. Methods and Curriculum Description We designed a multimodal curriculum focused on neuropalliative care communication skills using as our theoretical foundation transformative learning theory. We implemented this program for neurology residents at a single academic institution over the course of their 3-year training. Residents underwent (1) 3 communication workshops using VitalTalk modules and simulated patient encounters, (2) 3 or more observed clinical encounters with structured faculty feedback, and (3) at least 3 annual neuropalliative care lectures. We evaluated the effect on learners' self-assessed confidence in neuropalliative care skills with preworkshop and postworkshop questionnaires. Results and Assessment Data In 2021, 14 of 20 eligible residents attended our workshops and completed the preworkshop questionnaire, and 12 of those completed the postworkshop questionnaire. After the workshop, a larger proportion of residents (75%, 9/12) agreed or strongly agreed that they felt confident leading family meetings compared with before the workshop (57%, 8/14). While more than 90% of residents felt confident recognizing patient and family emotions both before and after the workshop, the workshop improved their confidence in responding to such emotions. Still, some residents neither agreed nor disagreed (42%, 5/12) about feeling confident in responding to emotions after the workshop, and many commented on wanting more training in this area. Discussion and Lessons Learned The successful implementation and high attendance among eligible participants demonstrate the feasibility of our longitudinal multimodal neuropalliative care curriculum. The evaluation of intervention outcomes suggests that residents' confidence in neuropalliative communication skills improved. Our study shows that VitalTalk is a tool that can be adapted to teach neuropalliative communication skills for neurology residents, and this program can be easily adopted by other neurology training programs.