The most important components of out-of-hours community care for patients at the end of life: A Delphi study of healthcare professionals' and patient and family carers' perspectives.

BACKGROUND: Community services for palliative patients outside normal working hours are variable and the best evidence-based models of care have not been determined. AIM: To establish expert consensus on the most important components of out-of-hours community palliative care services. DESIGN: Delphi study. The first round listed 68 components generated from systematic literature reviewing, focus groups with healthcare professionals and input from the project's patient and public involvement advisory group. The components deemed 'essential' by over 70% of participants in the first round were refined and carried forward to a second round, asking participants to rank each on a five-point Likert scale (5 highest to 1 lowest). The consensus threshold was median of 4 to 5 and interquartile range of ⩽1. PARTICIPANTS: Community specialist palliative care health professionals, generalist community health professionals and patients and family carers with experience of receiving care out-of-hours at home. RESULTS: Fifty-four participants completed round 1, and 44 round 2. Forty-five components met the threshold as most important for providing out-of-hours care, with highest consensus for: prescription, delivery and administration of medicines; district and community nurse visits; and shared electronic patient records and advance care plans. CONCLUSIONS: The Delphi method identified the most important components to provide community palliative care for patients out-of-hours, which are often provided by non-specialist palliative care professionals. The importance placed on the integration and co-ordination with specialist palliative care through shared electronic records and advance care plans demonstrates the reassurance for patients and families of being known to out-of-hours services.

Early referral to a palliative team improves end-of-life care among gynecological cancer patients: a retrospective, population-based study.

OBJECTIVE: To assess end-of-life care among patients with gynecological cancer, and to describe the association between timing of palliative care referral and patterns of care. METHODS: All women with residence in Oslo, Norway, who died of gynecological cancer between January 1, 2015 and December 30, 2017 (36 months), were identified. Patients were primarily treated at the Norwegian Radium Hospital and clinical data on end-of-life care were retrospectively extracted from the medical records. RESULTS: We identified 163 patients with median age 70.1 years at death (range 26-100) with the following diagnoses: ovarian (n=100), uterine (n=40), cervical (n=21), and vulvar cancer (n=2). 53 (33%) of patients died in a palliative care unit, 34 patients (21%) died in nursing homes without palliative care, and 48 (29%) patients died in hospital. Only 15 (9%) patients died at home. 25 (15%) patients received chemotherapy in the last 30 days before death, especially ovarian cancer patients (n=21, 21%). 103 patients (61%) were referred to a palliative team prior to death. Referral to a palliative team was associated with a significantly reduced risk of intensive care unit admission (OR 0.11, 95% CI 0.02 to 0.62) and higher likelihood of a structured end-of-life discussion (OR 2.91, 95% CI 1.03 to 8.25). Palliative care referral also seemed to be associated with other quality indicators of end-of-life care (less chemotherapy use, more home deaths). CONCLUSIONS: End-of-life care in patients with gynecological cancer suffers from underuse of palliative care. Chemotherapy is still commonly used towards end-of-life. Early palliative care referral in the disease trajectory may be an important step towards improved end-of-life care.

Face-Validated Quality Indicators for Appropriateness of End-of-Life Care in Children with Serious Illness: A Study Using the RAND/University of California at Los Angeles Appropriateness Method.

OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurologic conditions, and genetic/congenital conditions, to be applied to administrative health data containing medication and treatment variables. STUDY DESIGN: Modified RAND/University of California at Los Angeles appropriateness method. We identified potential indicators per illness group through systematic literature review, scoping review, and expert interviews. Three unique expert panels, a cancer (n = 19), neurology (n = 21), and genetic/congenital (n = 17) panel, participated in interviews and rated indicators in individual ratings, group discussions, and second individual ratings. Each indicator was rated on a scale from 1 to 9 for suitability. Consensus was calculated with the interpercentile range adjusted for symmetry formula. Indicators with consensus about unsuitability were removed, those with consensus about suitability were retained, and those with lack of consensus deliberated in the group discussion. Experts included pediatricians, nurses, psychologists, physiotherapists, pharmacologists, care coordinators, general practitioners, social workers from hospitals, care teams, and general practice. RESULTS: Literature review and expert interviews yielded 115 potential indicators for cancer, 111 for neurologic conditions, and 99 for genetic/congenital conditions. We combined similar indicators, resulting in respectively 36, 32, and 33 indicators per group. Expert scoring approved 21 indicators for cancer, 24 for neurologic conditions, and 23 for genetic/congenital conditions. CONCLUSIONS: Our indicators can be applied to administrative data to evaluate appropriateness of children's end-of-life care. Differences from adults' indicators stress the specificity of children's end-of-life care. Individual care and remaining aspects, such as family support, can be evaluated with complementary tools.

Eligible neonatal donors after circulatory determination of death (Maastricht type III): A national survey of level III NICUs.

BACKGROUND: Organ donation continues to increase worldwide, but in general paediatric patients remain less likely to receive a transplant. The inclusion of neonates as donors after cDCD should be considered in an effort to increase donation rates. METHODS: The survey for a cross-sectional national study of potential cDCD neonatal donors (Maastricht type III) was sent to all 90 level III Spanish neonatal units to explore: 1) protocols, education, and specific opinions on donation and 2) potential cDCD that could have been eligible over a 2-year period (2014-2015). RESULTS: Forty-five centers (50%) completed the survey, and 38/45 gave information about potential eligible donors. In 16% of the centers specific protocols on neonatal donation exist. All hospitals demanded more specific training, and 65% noted that the donation process could be a problem in the family's dismissal of the child. During the study period 46 805 neonates were admitted in the 38 centers, and 625 neonates died. Ninety-five born at a gestational age ≥34 weeks and above 2000 gr died after an EoL decision, 38 (40%) and 13 (14%) of them due to neonatal encephalopathy and multiple congenital anomalies, respectively. There were 31 (33%) elegible infants who died in less than 120 min due to pathologies that did not contraindicate donation. CONCLUSIONS: Neonatal cDCD could help to reduce the gap between the supply of and demand for organs according to the potentially eligible patients emerging from this study. Training in EoL and donation processes should be provided to healthcare professionals.

Racial Disparities in ICU Outcomes: A Systematic Review.

OBJECTIVES: Racial disparities in the United States healthcare system are well described across a variety of clinical settings. The ICU is a clinical environment with a higher acuity and mortality rate, potentially compounding the impact of disparities on patients. We sought to systematically analyze the literature to assess the prevalence of racial disparities in the ICU. DATA SOURCES: We conducted a comprehensive search of PubMed/MEDLINE, Scopus, CINAHL, and the Cochrane Library. STUDY SELECTION: We identified articles that evaluated racial differences on outcomes among ICU patients in the United States. Two authors independently screened and selected articles for inclusion. DATA EXTRACTION: We dual-extracted study characteristics and outcomes that assessed for disparities in care (e.g., in-hospital mortality, ICU length of stay). Studies were assessed for bias using the Newcastle-Ottawa Scale. DATA SYNTHESIS: Of 1,325 articles screened, 25 articles were included (n = 751,796 patients). Studies demonstrated race-based differences in outcomes, including higher mortality rates for Black patients when compared with White patients. However, when controlling for confounding variables, such as severity of illness and hospital type, mortality differences based on race were no longer observed. Additionally, results revealed that Black patients experienced greater financial impacts during an ICU admission, were less likely to receive early tracheostomy, and were less likely to receive timely antibiotics than White patients. Many studies also observed differences in patients' end-of-life care, including lower rates on the quality of dying, less advanced care planning, and higher intensity of interventions at the end of life for Black patients. CONCLUSIONS: This systematic review found significant differences in the care and outcomes among ICU patients of different races. Mortality differences were largely explained by accompanying demographic and patient factors, highlighting the effect of structural inequalities on racial differences in mortality in the ICU. This systematic review provides evidence that structural inequalities in care persist in the ICU, which contribute to racial disparities in care. Future research should evaluate interventions to address inequality in the ICU.

The survival time of end-of-life home care patients in Fukui prefecture, Japan: A retrospective observational study.

ABSTRACT: End-of-life advance care planning (ACP) has become increasingly important in home care setting. In facilitating ACP discussion in home care setting, accurate understanding of patients' survival would be beneficial because it would facilitate healthcare professionals to individualize ACP discussion. However, little is known about survival outcome of home care patients. This study aimed to clarify the outcome of patients and identify factors to better predict the survival outcome of home care patients with the focus on patients' primary diseases.We conducted a retrospective analysis using data from 277 patients managed at a home care clinic in Japan and first treated in 2017 or 2018. Data regarding sociodemographic and clinical characteristics, and clinical outcome on December 31, 2019 were extracted. Using Kaplan-Meier product-limit method, we estimated the overall 30 days, 90 days, 1 year, and 3 year survival probabilities among the entire patients and their differences according to their primary disease. We also evaluated whether outcomes differed based on the primary disease or other factors using the hazard ratio and Cox proportional hazards regression.The overall survival probability was 82.5% at 30 days, 67.8% at 90 days, 52.7% at 1 year, and 39.1% at 3 years. The survival rates at 30 days, 90 days, 1 year, and 3 years were 64.6%, 33.4%, 9.5%, and 4.1% among cancer patients; 91.9%, 86.4%, 78.1%, and 47.0% among dementia patients; and 91.9%, 86.4%, 78.1%, and 47.0% among patients with other nervous and cerebrovascular diseases, respectively. Cox proportional hazard regression clarified that cancer patients (hazard ratio 6.53 [95% CI 4.16-10.28]) and older adults (hazard ratio 1.01 [95% CI 1.00-1.02]) were significantly more likely to die than dementia patients and young patients, respectively.Primary disease had a significant influence on the prediction of survival time and could be a useful indicator to individualize ACP in home care setting.

Perceptions of Bereaved Caregivers and Clinicians About End-of-Life Care for Patients With Destination Therapy Left Ventricular Assist Devices.

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

Quality indicators for dementia and older people nearing the end of life: A systematic review.

BACKGROUND: Robust quality indicators (QIs) are essential for monitoring and improving the quality of care and learning from good practice. We aimed to identify and assess QIs for the care of older people and people with dementia who are nearing the end of life and recommend QIs for use with routinely collected electronic data across care settings. METHODS: A systematic review was conducted, including five databases and reference chaining. Studies describing the development of QIs for care of older people and those with dementia nearing the end of life were included. QIs were categorized as relating to processes or outcomes, and mapped against six care domains. The psychometric properties (acceptability, evidence base, definition, feasibility, reliability, and validity) of each QI were assessed; QIs were categorized as robust, moderate, or poor. RESULTS: From 12,980 titles and abstracts screened, 37 papers and 976 QIs were included. Process and outcome QIs accounted for 780 (79.7%) and 196 (20.3%) of all QIs, respectively. Many of the QIs concerned physical aspects of care (n = 492, 50.4%), and very few concerned spiritual and cultural aspects of care (n = 19, 1.9%). Three hundred and fifteen (32.3%) QIs were robust and of those 220 were measurable using routinely collected electronic data. The final shortlist of 71 QIs came from seven studies. CONCLUSIONS: Of the numerous QIs developed for care of older adults and those with dementia nearing the end of life, most had poor or moderate psychometric properties or were not designed for use with routinely collected electronic datasets. Infrastructure for data availability, combined with use of robust QIs, is important for enhancing understanding of care provided to this population, identifying unmet needs, and improving service provision.

Code Status Documentation Availability and Accuracy Among Emergency Patients with End-stage Disease.

INTRODUCTION: Some patients with end-stage disease who may neither want nor benefit from aggressive resuscitation receive such treatment if they cannot communicate in an emergency. Timely access to patients' current resuscitation wishes, or "code status," should be a key metric of electronic health records (EHR). We sought to determine what percentage of a cohort of patients with end-stage disease who present to the emergency department (ED) have accessible, code status documents, and for those who do, how quickly can this documentation be retrieved. METHODS: In this cross-sectional study of ED patients with end-stage disease (eg, palliative care, metastatic malignancy, home oxygen, dialysis) conducted during purposefully sampled random accrual times we performed a standardized, timed review of available health records, including accompanying transfer documents. We also interviewed consenting patients and substitute decision makers to compare available code status documents to their current wishes. RESULTS: Code status documentation was unavailable within 15 minutes of ED arrival in most cases (54/85, or 63%). Retrieval time was under five minutes in the rest, especially when "one click deep" in the EHR. When interviewed, 20/32 (63%) expressed "do not resuscitate" wishes, 10 of whom had no supporting documentation. Patients from assisted-living (odds ratio [OR] 6.7; 95% confidence interval [CI], 1.7-26) and long-term care facilities (OR 13; 95% CI, 2.5-65) were more likely to have a documented code status available compared to those living in the community. CONCLUSION: The majority of patients with end-stage disease, including half of those who would not wish resuscitation from cardiorespiratory arrest, did not have code status documents readily available upon arrival to our tertiary care ED. Patients living in the community with advanced disease may be at higher risk for unwanted resuscitative efforts should they present to hospital in extremis. While easily retrievable code status documentation within the EHR shows promise, its accuracy and validity remain important considerations.

Spanish and Portuguese Societies of Internal Medicine consensus guideline about best practice in end-of-life care.

AIM: To develop consensus recommendations about good clinical practice rules for caring end-of-life patients. METHODS: A steering committee of 12 Spanish and Portuguese experts proposed 37 recommendations. A two rounds Delphi method was performed, with participation of 105 panelists including internists, other clinicians, nurses, patients, lawyers, bioethicians, health managers, politicians and journalists. We sent a questionnaire with 5 Likert-type answers for each recommendation. Strong consensus was defined when >95% answers were completely agree or >90% were agree or completely agree; and weak consensus when >90% answers were completely agree or >80% were agree or completely agree. RESULTS: The panel addressed 7 specific areas for 37 recommendations spanning: identification of patients; knowledge of the disease, values and preferences of the patient; information; patient's needs; support and care; palliative sedation, and after death care. CONCLUSIONS: The panel formulated and provided the rationale for recommendations on good clinical practice rules for caring end-of-life patients.

Cardiac Implantable Devices Management in Medical Assistance in Dying (MAiD): Review and Recommendations for Cardiac Device Clinics.

The Medical Assistance in Dying (MAiD) program has been steadily expanding in Canada, and is expected to continue to do so. There are a substantial number of Canadians with pacemakers and defibrillators, many of whom are potential MAiD recipients. There is a need for review and reflection of standardisation of cardiac device management in MAiD patients, not only because of ethical concerns, but also because of the complexity of management at end of life. This document examines the status and role of cardiac devices (pacemakers and intracardiac defibrillators) and their physiologic interactions and influences during the MAiD process, and provides recommendations for their management.

A Call for a Patient Preference Predictor.

OBJECTIVES: When patients lose the capacity to make their own decisions, current practice relies on their family and loved ones to try to identify the treatment course the patient would have chosen for themselves. The fact that this approach has remained essentially unchanged for over 40 years raises the question of whether it successfully provides care that is consistent with patients' treatment preferences. DATA SOURCES: Published studies on the outcomes and impact of surrogate decision-making. STUDY SELECTION: All identified articles. DATA EXTRACTION: Review by the author. DATA SYNTHESIS: Surrogates frequently are not able to identify the treatment preferences of decisionally incapacitated patients and can experience significant distress as a result of making decisions for them. CONCLUSIONS: Revisions to existing practice are needed to increase the extent to which surrogates are able to identify the treatment preferences of decisionally incapacitated patients. One possibility is to assess whether predicting patients' treatment preferences based on the preferences of similar patients might increase the extent to which patients are treated consistent with their preferences and thereby reduce the burden on their surrogates.

Advance care planning for patients with COVID-19: a communication guide.

In view of the high morbidity and mortality associated with COVID-19, early and honest conversations with patients about goals of care are vital. Advance care planning in its traditional manner may be difficult to achieve given the unpredictability of the disease trajectory. Despite this, it is crucial that patients' care wishes are explored as this will help prevent inappropriate admissions to hospital and to critical care, improve symptom control and advocate for patient choice. This article provides practical tips on how to translate decisions around treatment escalation plans into conversations, both face-to-face and over the phone, in a sensitive and compassionate manner. Care planning conversations for patients with COVID-19 should be individualised and actively involve the patient. Focusing on goals of care rather than ceilings of treatment can help to alleviate anxiety around these conversations and will remind patients that their care will never cease. Using a framework such as the 'SPIKES' mnemonic can help to structure this conversation. Verbally conveying empathy will be key, particularly when wearing personal protective equipment or speaking to relatives over the phone. It is also important to make time to recognise your own emotions during and/or after these conversations.

Coronavirus Disease 2019 Policy Restricting Family Presence May Have Delayed End-of-Life Decisions for Critically Ill Patients.

OBJECTIVES: To determine if a restrictive visitor policy inadvertently lengthened the decision-making process for dying inpatients without coronavirus disease 2019. DESIGN: Regression discontinuity and time-to-event analysis. SETTING: Two large academic hospitals in a unified health system. PATIENTS OR SUBJECTS: Adult decedents who received greater than or equal to 1 day of ICU care during their terminal admission over a 12-month period. INTERVENTIONS: Implementation of a visit restriction policy. MEASUREMENTS AND MAIN RESULTS: We identified 940 adult decedents without coronavirus disease 2019 during the study period. For these patients, ICU length of stay was 0.8 days longer following policy implementation, although this effect was not statistically significant (95% CI, -2.3 to 3.8; p = 0.63). After excluding patients admitted before the policy but who died after implementation, we observed that ICU length of stay was 2.9 days longer post-policy (95% CI, 0.27-5.6; p = 0.03). A time-to-event analysis revealed that admission after policy implementation was associated with a significantly longer time to first do not resuscitate/do not intubate/comfort care order (adjusted hazard ratio, 2.2; 95% CI, 1.6-3.1; p < 0.0001). CONCLUSIONS: Policies restricting family presence may lead to longer ICU stays and delay decisions to limit treatment prior to death. Further policy evaluation and programs enabling access to family-centered care and palliative care during the ongoing coronavirus disease 2019 pandemic are imperative.

Goal of a "Good Death" in End-of-Life Care for Patients with Hematologic Malignancies-Are We Close?

PURPOSE OF REVIEW: The medical field has a critical role not only in prolonging life but also in helping patients achieve a good death. Early studies assessing end-of-life quality indicators to capture if a good death occurred demonstrated low rates of hospice use and high rates of intensive healthcare utilization near death among patients with hematologic malignancies, raising concerns about the quality of death. In this review, we examine trends in end-of-life care for patients with hematologic malignancies to determine if we are close to the goal of a good death. RECENT FINDINGS: Several cohort studies show that patients with blood cancers are often inadequately prepared for the dying process due to late goals of care discussions and they experience low rates of palliative and hospice care. More recent analyses of population-based data demonstrate some improvements over time, with significantly more patients receiving palliative care, enrolling in hospice, and having the opportunity to die at home compared to a decade ago. These encouraging trends are paradoxically accompanied by concomitant increases in late hospice enrollment and intensive healthcare utilization near death. Although we are closer to the goal of a good death for patients with hematologic malignancies, there is ample room for growth. To close the gap between the current state of care and a good death, we need research that engages patients, caregivers, hematologic oncologists, and policy-makers to develop innovative interventions that improve timeliness of goals of care discussions, expand palliative care integration, and increase hospice use.

Evaluation of Reliability and Correlations of Quality Measures in Cancer Care.

Importance: Measurement of the quality of care is important for alternative payment models in oncology, yet the ability to distinguish high-quality from low-quality care across oncology practices remains uncertain. Objective: To assess the reliability of cancer care quality measures across oncology practices using registry and claims-based measures of process, utilization, end-of-life (EOL) care, and survival, and to assess the correlations of practice-level performance across measure and cancer types. Design, Setting, and Participants: This cross-sectional study used the Surveillance, Epidemiology, and End Results (SEER) Program registry linked to Medicare administrative data to identify individuals with lung cancer, breast cancer, or colorectal cancer (CRC) that was newly diagnosed between January 1, 2011, and December 31, 2015, and who were treated in oncology practices with 20 or more patients. Data were analyzed from January 2018 to December 2020. Main Outcomes and Measures: Receipt of guideline-recommended treatment and surveillance, hospitalizations or emergency department visits during 6-month chemotherapy episodes, care intensity in the last month of life, and 12-month survival were measured. Summary measures for each domain in each cohort were calculated. Practice-level rates for each measure were estimated from hierarchical linear models with practice-level random effects; practice-level reliability (reproducibility) for each measure based on the between-measure variance, within-measure variance, and distribution of patients treated in each practice; and correlations of measures across measure and cancer types. Results: In this study of SEER registry data linked to Medicare administrative data from 49 715 patients with lung cancer treated in 502 oncology practices, 21 692 with CRC treated in 347 practices, and 52 901 with breast cancer treated in 492 practices, few practices had 20 or more patients who were eligible for most process measures during the 5-year study period. Patients were 65 years or older; approximately 50% of the patients with lung cancer and CRC and all of the patients with breast cancer were women. Most measures had limited variability across practices. Among process measures, 0 of 6 for lung cancer, 0 of 6 for CRC, and 3 of 11 for breast cancer had a practice-level reliability of 0.75 or higher for the median-sized practice. No utilization, EOL care, or survival measure had reliability across practices of 0.75 or higher. Correlations across measure types were low (r ≤ 0.20 for all) except for a correlation between the CRC process and 1-year survival summary measures (r = 0.35; P < .001). Summary process measures had limited or no correlation across lung cancer, breast cancer, and CRC (r ≤ 0.16 for all). Conclusions and Relevance: This study found that quality measures were limited by the small numbers of Medicare patients with newly diagnosed cancer treated in oncology practices, even after pooling 5 years of data. Measures had low reliability and had limited to no correlation across measure and cancer types, suggesting the need for research to identify reliable quality measures for practice-level quality assessments.