Factors related to accurate clinicians' prediction of survival: an international multicenter study in East Asia.

PURPOSE: Recent guidelines for prognostic evaluation recommend clinicians' prediction of survival (CPS) for survival prediction in patients with advanced cancer. However, CPS is often inaccurate and optimistic. Studies on factors associated with overestimation or underestimation of CPS are limited. We aimed to investigate the factors associated with the overestimation and underestimation of CPS in patients with far-advanced cancer. METHODS: The current study was a secondary analysis of an international multicenter prospective cohort study, which enrolled newly admitted patients with advanced cancer in palliative care units (PCUs) in Japan, Korea, and Taiwan from 2017 to 2018. We obtained the temporal CPS at enrollment and performed multivariate logistic regression analysis to identify the factors associated with "underestimation (less than 33% of actual survival)" and "overestimation (more than 33% of actual survival)." RESULTS: A total of 2571 patients were assessed and admitted in 37 PCUs between January 2017 and September 2018. Older age (adjusted odds ratio [aOR] 1.01; 95% confidence interval [CI] 1.01-1.02; P < 0.01) and reduced oral intake (aOR 0.68; 95% CI 0.51-0.89; P < 0.01) were identified as significant factors associated with underestimation. Dyspnea (aOR 1.28; 95% CI 1.06-1.54; P = 0.01) and hyperactive delirium (aOR 1.34; 95% CI 1.05-1.72; P = 0.02) were identified as significant factors associated with overestimation. CONCLUSION: Older age was related to underestimation, while dyspnea and hyperactive delirium were related to overestimation of CPS for patients with weeks of survival. However, reduced oral intake was less likely to lead to underestimation.

Basic Training in Palliative Medicine for Internal Medicine Residents: Pilot Testing of a Canadian Model in Switzerland.

Background: In Switzerland, palliative care (PC) clinical training is well established at undergraduate and specialist postgraduate levels. However, postgraduate nonspecialist training curricula are less documented. Local Problem: A structured curriculum for nonspecialist rotation within internal medicine (IM) in specialized PC wards is lacking. Objective: To pilot two versions of a PC nonspecialist curriculum for IM residents in Swiss PC units. Methods: In the pilot phase, two curricula-short immersion (3-10 weeks, based on the University of Toronto's Internal-Medicine PC Rotation) and standard nonspecialist (11-18 weeks, based on the Canadian Society of Palliative Care Physician Competencies)-were assessed using a mixed-method online survey. One university and two nonuniversity sites participated. The analysis was descriptive. Results: Five residents and eight supervisors of five training rotations (July-October 2023) responded. Overall, curriculum quality and feasibility (content and time) received positive ratings across all groups, with high satisfaction concerning organization, educational design, learning support, climate, experience, and facilities. Nonuniversity sites were generally rated more positively than university sites. Qualitative feedback paralleled these findings, highlighting the curriculum's relevance and fit with learners' needs and suggesting potential simplifications and more personalized planning. Conclusions: Establishing short and standard duration curricula for a PC program is viable and well received by nonspecialist trainees. Future implementation should concentrate on personalized learning objectives and streamlining the content and structure of the competencies. Cooperation within various training settings (university and regional hospitals) as well as on an international level (e.g., Canada-Switzerland) may further improve the quality of the proposed training formats.

When dying does not go well: a qualitative study.

BACKGROUND: Several studies deal with the question of what constitutes a "satisfactory death". A smaller number of studies deal with unsatisfactory dying processes. And only a few shed light on unsatisfactory deaths that take place in hospices and palliative care units, which see themselves as places conducive to a "good" death. What also remains largely undiscussed are the ethical aspects that accompany the observation of an unsatisfactory course of death. METHOD: The research was carried out as an exploratory and qualitative study. The data collection and analysis were based on the methods of the "grounded theory". RESULTS: Notions of a bad death are articulated here, though hardly by the affected persons and their relatives themselves, but rather by the professionals. Principally, descriptions of unsatisfactory dying processes refer to deficient success in symptom control, whereby the principle of autonomy is of particular importance. The focus here is not only on the needs of patients, but also on the needs of staff. The manifestation of such notions is related to the requirements arising from a practice that apparently evokes a need for accountability in the form of communicative reassurance. CONCLUSION: An idealised definition of "dying well" is in danger of losing sight of the contextual specifics of the practice involved, which can lead to ethically problematic situations.

Quality of Life Among Cancer Patients Who Discharged Home from Inpatient Hospices, Comparing with Those of Cancer Patients Who Died at HospicesA Nation-ｗide Survey Among Bereaved Families of Advanced Cancer Patients

Objectives: We compared cancer patients who were discharged home from inpatients hospices (Home), and who died at hospices (PCU) as a comparison group regarding patients’ quality of life, to clarify the patients’ experience after discharge home. Methods: We send self-reported questionnaires to bereaved families of cancer patients who were discharged home from 12 Japanese nation-wide hospices and died without readmission to the hospicies during Janually 2010 and August 2014. We used bereaved families’ data of patients who died at the same hospices during the same period of J-HOPE3 study. Results: We sent 495 questionnaires (returned 47.3%) and analyzed data of 188 as Home. The data of 759 bereaved families of J-HOPE3 study were also analyzed as PCU. In Good Death Inventory, Home was associated with higher score on some items (staying at favorite place, having pleasure, staying with families and friends, being valued as a person), and PCU was associated with higher score on being free from pain or other physical distress. Conclusions: Patients who were discharged home from inpatient hospices had good environmental QOL, but hospices may be better in palliation of symptoms.

How different are accuracies of clinicians' prediction of survival by assessment methods?

BACKGROUND: No standardized method has been established for evaluating the accuracy of a clinicians' prediction of survival (CPS). Till now, no study has compared the accuracy of CPS according to the evaluation methods using the same dataset. We aimed to examine the accuracy of CPS by different statistical approaches in patients with far-advanced cancer. METHODS: The current study was a secondary analysis of an international multicenter prospective cohort study. Newly admitted patients with advanced cancer were enrolled in palliative care units (PCUs) in Japan, Korea, and Taiwan. We obtained the temporal CPS at enrollment. The patients were classified into groups of days (≤7 days) and weeks (≤30 days) based on CPS and actual survival (AS). We evaluated the accuracy of CPS by the distribution, area under the receiver operating characteristics curve (AUROCs), and an estimate ±33% of AS. RESULTS: A total of 2,571 patients were assessed and admitted in 37 PCUs between January 2017 and September 2018. As for the "days" category, the distribution of AS is larger than that of CPS, however, the results are reversed in the "weeks" category. The AUROCs showed over 80% discrimination for both the "days" and "weeks" categories. Accurate CPS within ±33% of AS was approximately 30% in both "days" and "weeks" categories. CONCLUSIONS: We showed a discrepancy of approximately 30-80% in the accuracy of CPS among three different analysis methods: distribution, AUROC, and AS comparison. Considering the low accuracy of AS comparisons, clinicians should provide a wide range of survival time. CPS was able to effectively discriminate and may be useful for risk stratification.

Tertiary Inpatient Palliative Care within Region-Wide Services: A Retrospective Examination of Psychosocial and Medical Demographics at Admissions.

Palliative care offers symptom relief and improved quality of life. Tertiary palliative care units (TPCUs) focus on complex suffering under the care of specialist palliative physicians and interdisciplinary teams. The Intensive Palliative Care Unit (IPCU) is a TPCU integrated in well-developed region-wide palliative services in Calgary, Canada. We compared the population accessing the IPCU to published data from other Canadian sites. METHODS: A retrospective chart review was conducted using 8 sample months over a 2-year period. We gleaned psychosocial and medical demographics alongside the self-reported symptom burden on the Edmonton Symptom Assessment System. Descriptive statistics were calculated. RESULTS: Adults (n = 117) with cancer admitted to the IPCU were 5-10 years younger, had later-stage cancer, and had higher discharges to preferred locations than other published Canadian TPCUs. Up to two months before admission, most commonly reported symptoms were consistent with the outpatient literature although with higher reported intensity. DISCUSSION: With more advanced disease, younger age, and elevated symptom burden before admission, the IPCU still discharged patients to preferred locations at higher rates than other sites. This may be due to integration in the region's organized palliative care services. CONCLUSION: With proper integration, a TPCU may be able to improve quality of life and reduce deaths in hospitals.

Breakthrough and Episodic Cancer Pain from a Palliative Care Perspective.

Cancer pain intensity (PI) fluctuates, but the relationship between pain flares and background pain with respect to pain management is not settled. We studied how flare and background PIs corresponded with treatment results for background cancer pain. Patients admitted to an acute palliative care unit with average and/or worst PI ≥ 1 on the 11-point numeric rating scale were included. Average and worst PI at admission and average PI at discharge were collected. We examined how the difference and ratio between worst and average PI and average PI at admission, were associated with average PI development during hospitalization. Positive differences between worst and average PI at admission were defined as pain flares. Ninety out of 131 patients had pain flares. The reduction in average PI for patients with flares was 0.9 and for those without, 1.9 (p = 0.02). Patients with large worst minus average PI differences reported the least improvement, as did those with large worst/average PI ratios. Patients with pain flares and average PI ≤ 4 at admission had unchanged average PI during hospitalization, while those with pain flares and average PI > 4 experienced pain reduction (2.1, p < 0.001). Large pain flares, in absolute values and compared to background PI, were associated with inferior pain relief.

Clinical Features of Patients With Hematological Malignancies Treated at the Palliative Care Unit.

Background: In Japan, the number of patients with aggressive hematological malignancies (PHMs) admitted at the palliative care unit (PCU) in their end-of-life (EOL) stage was fewer than that of patients with solid tumors due to several reasons. The assessment of patient characteristics and the methods of survival prediction among PHMs in the EOL stage are warranted. Objectives: This study aimed to identify the current medical status and the method of survival prediction among PHMs treated at the PCU. Setting/Subjects/Measurements: We retrospectively analyzed the clinical data of 25 PHMs treated at our PCU between January 2017 and December 2020. The association between survival time and the palliative prognostic score (PAP) and palliative prognostic index (PPI) was analyzed. Results: The average age of the PHMs was higher than that of patients with lung cancer as a control. The median survival time of the PHMs was shorter than the control group. Most PHMs could not receive standard chemotherapy, and the most common cause of death was disease-related organ failure. Significant associations were observed between the survival time and each PAP/PPI value in patients with malignant lymphoma, but not in those with leukemia. Conclusion: The PHMs in the PCU had a lower median survival time than the control group. These results were induced by the result of patient selection to avoid treatment-related severe toxicity. The survival prediction using the PAP and PPI was less accurate in patients with leukemia.

Nutrition provided during the final weeks to patients with non-gastrointestinal solid malignancies.

BACKGROUND & AIMS: Data regarding the delivery of nutrition and nutritional infusions to patients with terminal cancer remain limited; therefore, this real-world analysis investigated differences in nutrition delivery and infusion statuses for patients with terminal-stage cancers. METHODS: Patients who had died following hospitalization for more than seven days due to neoplasms between April 2014 and December 2018 were identified using the medical claims database of Japan. Data regarding oral diets, enteral feeding, infusion volumes, and infusion energies were extracted. The maximum observation period was 28 days prior to patient death. RESULTS: A total of 12,908 patients were included in our analysis. The proportion of patients without dietary or enteral nutrition increased closer to their dates of death. Observations were recorded at 28 (18.9%), 21 (20.9%), 14 (24.6%), 7 (33.0%), and 0 (80.2%) days prior to death. The infusion volumes given to the patients, as well as their energy contents, decreased near death (P-value for the trend <0.001). CONCLUSIONS: Our study revealed the current status of nutritional therapy for patients with terminal cancer in Japan. The number of patients receiving only parenteral nutrition increased near death, while the amount of nutritional intake was low.

Key aspects of psychosocial needs in palliative care - a qualitative analysis within the setting of a palliative care unit in comparison with specialised palliative home care.

BACKGROUND: The number of palliative care patients with complex needs is increasing in developed countries. In addition to physical aspects and symptom control, psychosocial aspects are of great importance for palliative care patients. The aim of this study was to understand which psychosocial aspects are important to patients, relatives and health professionals within the setting of a palliative care unit in comparison with specialised palliative home-care (SPHC). METHODS: We used a qualitative design based on semistructured interviews, which were coded via qualitative content analysis. The study took place in the state of Hesse, Germany, and data collection was conducted in 2017 (interviews from the ELSAH study, which was conducted in a SPHC) and 2018 (supplementary interviews conducted in a palliative care unit). The results from both settings were compared. RESULTS: In the palliative care unit, 10 health professionals, 11 patients and 8 relatives were interviewed. In the outpatient setting, we interviewed 30 health professionals, 14 patients and 14 relatives. We identified four key psychosocial issues related to palliative care that were relevant in both the inpatient and outpatient settings: care planning, patient-centred care, a protected environment with feelings of safety, and psychological well-being. In addition, immediate availability of medical staff, greater relief of the relatives and better accessibility of psychological care were more important in the inpatient setting than in the specialised palliative home care setting. CONCLUSIONS: Knowledge and application of the identified key issues may improve patient-centred palliative care. Accessibility of psychological care and immediate availability of medical staff may be important factors for enhancing psychological well-being in the inpatient palliative care setting. Consideration of the identified key issues may help to develop more collaborative transitions between the palliative care unit and the SPHC and may help to provide palliative care patients and their families with care that is appropriate and feasible for them. TRIAL REGISTRATION: The underlying comparative study of the outpatient setting of specialised palliative home-care (ELSAH) was registered within the German Clinical Trials Register DRKS-ID: DRKS00012421, ( https://drks.de/search/de/trial/DRKS00012421 ) on 19th May 2017.

Palliative care unit treatment and care for a terminal breast cancer patient with untreated obsessive-compulsive disorder.

OBJECTIVES: Although palliative care units treat patients with various comorbidities, there are no reports of patients with obsessive-compulsive disorder (OCD). METHODS: The treatment and care of a breast cancer patient with OCD are presented. RESULTS: A woman in her 40s was admitted to the palliative care unit for terminal breast cancer. She spent most of the day cleaning the bath and bed areas, ignoring efforts to restrain her actions by the staff. After being diagnosed with OCD, the above symptoms improved through the coordinated action of the staff and medication. SIGNIFICANCE OF RESULTS: This is the first report of the diagnosis and treatment of a patient with OCD in a palliative care unit. Early psychiatric diagnosis and subsequent staff response contributed to improvement in the patient's quality of life.

Improving timely transfers from acute care to the local palliative care unit for patients at the end of life.

BACKGROUND: Despite evidence showing that nearly two thirds of the Canadian population prefer to die at home, the majority die in hospital. Honoring a patient's wish for their preferred location of death is an essential component in end-of-life care. Therefore, for those patients admitted to acute care whose choice is to transfer to a palliative care unit for end-of-life care, it is imperative that this occurs in a safe and timely manner. The General Internal Medicine ward at this local tertiary care academic center, did not have a standardized process for transferring patients at the end-of-life to the local palliative care unit. With bed calls made between Monday to Saturday at 8 am, weekday and weekend transfer times ranged between 1 to 6 hours. The aim of this project was to establish a standardized, safe and efficient patient transfer from acute care to the palliative care unit for a daily standard arrival time. METHODS: A multidisciplinary quality improvement team was formed to analyze the transfer process. Several Plan Do Study Act cycles were tested, targeting all steps of the transfer process and turnaround time. An outcome measure aiming for a turnaround time of two hours was set as the target. RESULTS: A total of fourteen patient transfers were included. Average transfer time during the weekday was reduced from a baseline average of 180.2 to 128.3 min. This change was found to be statistically significant and sustained (P<0.003). The average transfer time on weekends remained stable at 234 min. The outcome target of a 10:00 am arrival time to the palliative care unit was achieved 42% of the time. CONCLUSIONS: This project remains on-going and early data is encouraging as it met the targeted transfer time 42% of the time. Fidelity in the process measures helped to meet the targeted turnaround time of two hours for a safe and efficient transfer to the palliative care unit and ensured patients got to their preferred location for end of life care. The goal is to expand this project to other general internal medicine wards across the organization.

Association Between Opening a Palliative Care Unit and Hospital Care for Patients With Serious Illness.

Background: Palliative care units (PCUs) are devoted to intensive management of symptoms and other palliative care needs. We examined the association between opening a PCU and acute care processes at a single U.S. academic medical center. Methods: We retrospectively compared acute care processes for seriously ill patients admitted before and after the opening of a PCU at a single academic medical center. Outcomes included rates of change in code status to do-not-resuscitate (DNR) and comfort measures only (CMO) status, and time to DNR and CMO. We calculated unadjusted and adjusted rates and used logistic regression to assess interaction between care period and palliative care consultation. Results: There were 16,611 patients in the pre-PCU period and 18,305 patients in the post-PCU period. The post-PCU cohort was slightly older, with a higher Charlson index (p < 0.001 for both). Post-PCU, unadjusted rates of DNR and CMO increased from 16.4% to 18.3% (p < 0.001) and 9.3% to 11.5% (p < 0.001), respectively. Post-PCU, median time to DNR was unchanged (0 days), and time to CMO decreased from 6 to 5 days. The adjusted odds ratio was 1.08 (p = 0.01) for DNR and 1.19 (p < 0.001) for CMO. Significant interaction between care period and palliative care consultation for DNR (p = 0.04) and CMO (p = 0.01) suggests an important role for palliative care engagement. Conclusions: The opening of a PCU at a single center was associated with increased rates of DNR and CMO status for seriously ill patients.

Outcomes of an Acute Palliative Care Unit at a Comprehensive Cancer Center in Korea.

Background: The acute palliative care unit (APCU) bridges between active cancer treatment and hospice care. However, no study has proven the efficacy of APCU in Korea. Objective: To evaluate the first-year outcomes of the patients admitted to an APCU at a tertiary hospital in Korea. Design: The APCU admitted 205 patients between April 14, 2014, and April 30, 2015. Of these patients, 57 were evaluable for baseline and one-week follow-up Edmonton Symptom Assessment System (ESAS). Results: Of the 57 participants, 56.1% were male, with a median age of 60 years (range, 52.8-69.5 years). All patients had advanced cancer, and 42 out of 57 had terminal illnesses. The median APCU stay was 14 days (range, 10-17 days). The 42 (73.7%) patients were referred to the APCU after anticancer treatment was completed. Ten (17.5%) patients died during their stay, and 20 (35.1%) were discharged home. Among those who completed the ESAS, there were significant improvements in scores in the following symptoms: fatigue, depression, loss of appetite, and shortness of breath. Physical symptoms (pain, fatigue, nausea, drowsiness, appetite, and shortness of breath) and the total ESAS scores were significantly improved (p = 0.002 and p = 0.005, respectively). Each non-medical palliative care program, such as art and music therapy, yoga, foot massage, haircut, and body care, showed no significant differences between the group who received them and those who did not. Conclusion: During the APCU stay, the overall symptoms of inpatients were reduced. A comprehensive and multidisciplinary team approach is essential for patients who need palliative care.

Nonmedical opioid use at the end of life: A tale of addiction and a last wish.

BACKGROUND: Nonmedical opioid use (NMOU) has been associated with opioid overdose deaths. This pattern of misuse can be seen in those using opioids for cancer-associated pain. We present a case that highlights the complexities associated with NMOU and a patient's care at the end of life. CASES DESCRIPTION: A patient with a metastatic solid tumor malignancy along with co-occurring history of polysubstance abuse was admitted to an acute palliative and supportive care unit (APSCU). The patient demonstrated behaviors concerning for NMOU during her hospital stay but had increased symptom expression concerning for worsening dyspnea while in the APSCU. Unfortunately, she used home opioids, which was unknown to the team at the time along with requesting for higher doses of opioids that were being prescribed. This caused a worsening respiratory status and affected her care. Using an interdisciplinary approach, the providers managed her symptoms and discharged her safely to see her child. CONCLUSION: This highlights the complexities of the alleviation of suffering in those with NMOU. It is important to continue to manage NMOU at the end of life due to its effects on quality of life. A multimodal approach is recommended to identify and care for these patients.

Characteristics of Patients with Cancer Readmitted Within 30 Days to an Acute Palliative Care Unit.

OBJECTIVE(S): For patients with cancer, the emergence of acute palliative care units (APCU) may hold promise in curtailing hospital readmissions. The study aims to describe the characteristics of patients readmitted to an APCU. METHODS: This retrospective study examined patients with cancer readmitted within 30 days to an APCU. Readmissions were further classified as either potentially preventable or non-preventable. RESULTS: Out of 734 discharges from July 1, 2014 to July 1, 2015, 69 (9%) readmissions were identified and analyzed. For index admissions, median length of stay was five days, and one (1%) was discharged home with hospice care. For readmissions, median time from index admission to readmission was nine days, median length of stay was six days, three (4%) patients died, and 20 (30%) went home with hospice. Ten (14.5%) readmissions were deemed potentially preventable (95% CI 7.2-25.0%). Race/ethnicity-White/Black/Hispanic/Others-was 60%, 10%, 20% and 10%, respectively, among potentially preventable readmissions and 76%, 22%, 2% and 0%, respectively, among potentially non-preventable readmissions (P = .012). Potentially preventable readmissions were more likely to have venous thromboembolism (40% vs. 12%, P = .046) and more reasons for readmission (median 2 vs. 1, P = .019). CONCLUSIONS: Among patients with cancer readmitted to an APCU, one out of seven was potentially preventable and a far larger proportion was discharged with hospice care compared to the index admission. Recognition of disease course, meaningful goals of care discussions and timely transition to hospice care may reduce rehospitalization in this population.

Can Infection Control Lift Visitation Restrictions in a Palliative Care Unit during the Coronavirus Disease 2019 Pandemic?

To limit the spread of coronavirus disease 2019 (COVID-19), restrictions on visitation were implemented in palliative care units (PCUs) during the pandemic, requiring inpatients and their families to be separated. In July 2023, Saiseikai Utsunomiya Hospital lifted the restrictions on visiting in the PCU after implementing thorough infection control measures. During the study period (May 8, 2023 to September 17, 2023), 80 patients were admitted to the PCU, no COVID-19 cases were reported, and no visitors reported becoming infected after visitation. The average number of visitors per day during the first 2 months after restrictions were lifted was 23, with a median stay of 83 minutes per visit. The percentage of visitors who were relatives of inpatients was 89% after restrictions were lifted. The average bed utilization rate was 45% during the 2 months before the decision to lift the restrictions, and was 76% during the 2 months after restrictions were lifted, recovering to the pre-pandemic level. These results demonstrate that visiting restrictions in PCUs can be lifted without increasing the incidence of COVID-19 if thorough infection control measures are taken.

Comparison of inpatient and outpatient palliative sedation practice - A prospective observational study.

INTRODUCTION: Palliative sedation (PS) is an intrusive measure to relieve patients at the end of their life from otherwise untreatable symptoms. Intensive discussion of the advantages and limitations of palliative care with the patients and their relatives should precede the initiation of PS since PS is terminated by the patient's death in most cases. Drugs for PS are usually administered intravenously. Midazolam is widely used, either alone or in combination with other substances. PS can be conducted in both inpatient and outpatient settings; however, a quality analysis comparing both modalities was missing so far. PATIENTS AND METHODS: This prospective observational study collected data from patients undergoing PS inpatient at the palliative care unit (PCU, n = 26) or outpatient at a hospice (n = 2) or at home (specialized outpatient palliative care [SAPV], n = 31) between July 2017 and June 2018. Demographical data, indications for PS, and drug protocols were analyzed. The depth of sedation according to the Richmond Agitation Sedation Scale (RASS) and the degree of satisfaction of staff members and patient's relatives were included as parameters for quality assessment. RESULTS: Patients undergoing PS at the PCU were slightly younger compared to outpatients (hospice and SAPV combined). Most patients suffered from malignant diseases, and midazolam was the backbone of sedation for inpatients and outpatients. The median depth of sedation was between +1 and -3 according to the RASS with a trend to deeper sedation prior to death. The median degree of satisfaction was "good," scored by staff members and by patient's relatives. Significant differences between inpatients and outpatients were not seen in protocols, depth of sedation, and degree of satisfaction. CONCLUSION: The data support the thesis that PS is possible for inpatients and outpatients with comparable results. For choosing the best place for PS, other aspects such as patient's and relative's wishes, stress, and medical reasons should be considered.

The First Neuropalliative Care Unit in Germany-Characteristics of Patients.

A unique structure of care for neurological inpatients with significant palliative care (PC) needs was established in the Department of Neurology at the Charité-Universitätsmedizin Berlin in 2021: a specialized neuropalliative care (NPC) unit. After one year, we provide an overview of the concept and the patients' characteristics. METHODS: We retrospectively analyzed the characteristics of patients treated in our NPC unit between February 2021-February 2022. Data were extracted from medical records and PC assessment including diagnosis, mode of admission and discharge, length of stay, and palliative symptoms. Data are presented as averages with a 95% confidence interval [lower limit; upper limit] or percentage (absolute number). RESULTS: We included 143 patients (52% (75) female, 67.9 years [65.6; 70.2]). Patients were admitted from general wards (48%; 68), their homes (22%; 32), intensive care units (16%; 23) or emergency departments (14%; 20). The main diagnoses were tumors of the nervous system (39%; 56), neurodegenerative diseases (30%; 43), neurologic complications (13%; 19) and cerebrovascular diseases (12%; 17). Complaints most frequently rated as severely to overwhelmingly burdensome were motor- or fatigue-associated problems, problems communicating, dysphagia and pain. The average length of stay was 13.7 days [12.2; 15.2]. Forty-five percent (64) of patients were discharged without further PC, 17% (24) were referred to a hospice and 13% (18) were discharged with outpatient PC. Five percent (7) were referred to neurorehabilitation and 21% (30) of patients died. CONCLUSIONS: Our NPC unit is a new model of care for neurological patients with substantial PC needs especially within the structures of a highly specialized and individualized medicine.

Delivery models of neuropalliative care.

Drawing its beginnings from end-of-life care, palliative care has developed into a specialized interdisciplinary effort aiming to alleviate distress in all its form, and spanning the whole serious illness trajectory. With this evolution came the inevitable expansion to different sites and modes of care delivery. This section discusses the various models of bringing palliative care to patients with neurologic illness. It begins by distinguishing primary from specialist palliative care, then examines various models of inpatient and outpatient care. Hospital-based models include consultation service and dedicated inpatient units, while outpatient care mainly consists of palliative care specialists embedded in disease-specific clinics. Home-based palliative care and services provided through telemedicine are discussed. Hospice, a model of care often associated with end-of-life palliative care is detailed, together with suggestions on when to consider transitioning to hospice care. It is worth noting that there is not a single best model of palliative care delivery for persons living with neurologic illness. The models discussed in this chapter are complementary not competing and should be adopted by clinicians to fit the needs of patients and caregivers, the resources available in the healthcare system, and based on where patients are in the spectrum of their illness.