The Current Discussion Regarding End-of-Life Care for Patients with Out-of-Hospital Cardiac Arrest with Initial Non-Shockable Rhythm: A Narrative Review.

Despite recent advances in resuscitation science, outcomes in patients with out-of-hospital cardiac arrest (OHCA) with initial non-shockable rhythm remains poor. Those with initial non-shockable rhythm have some epidemiological features, including the proportion of patients with a witnessed arrest, bystander cardiopulmonary resuscitation (CPR), age, and presumed etiology of cardiac arrest have been reported, which differ from those with initial shockable rhythm. The discussion regarding better end-of-life care for patients with OHCA is a major concern among citizens. As one of the efforts to avoid unwanted resuscitation, advance directive is recognized as a key intervention, safeguarding patient autonomy. However, several difficulties remain in enhancing the effective use of advance directives for patients with OHCA, including local regulation of their use, insufficient utilization of advance directives by emergency medical services at the scene, and a lack of established tools for discussing futility of resuscitation in advance care planning. In addition, prehospital termination of resuscitation is a common practice in many emergency medical service systems to assist clinicians in deciding whether to discontinue resuscitation. However, there are also several unresolved problems, including the feasibility of implementing the rules for several regions and potential missed survivors among candidates for prehospital termination of resuscitation. Further investigation to address these difficulties is warranted for better end-of-life care of patients with OHCA.

Identification of Nursing Outcomes and Quality Indicators for Home Health Care in Older Adults with End-Stage Cancer.

OBJECTIVE: This study aimed to identify nursing outcomes and quality indicators for older adults with end-stage cancer receiving home health care. METHODS: Nineteen experts and professional caregivers, including palliative doctors, nursing faculty, advanced practice nurses, and registered nurses, participated in the Delphi technique. Final medians and interquartile ranges were calculated. RESULT: Seven components with 43 nursing outcomes and quality indicators for older adults with end-stage cancer were developed, encompassing physical pain relief, symptom management, physical well-being, complication prevention, psychosocial support, caregiver and family roles in end-of-life care, and advance care planning. CONCLUSION: The caregiver and family's role in end-of-life care had the most indicators, reflecting the significance of family involvement in Thailand's cultural context. Consistent implementation of these indicators is crucial, and correlational analysis of indicator scores can enhance their validity.

Appropriate use of medication among home care adult cancer patients at end of life: a retrospective observational study.

BACKGROUND: Medications are commonly used for symptom control in cancer patients at the end of life. This study aimed to evaluate medication utilization among home care palliative patients with cancer at the end of life and assess the appropriateness of these medications. METHOD: This retrospective observational study included adult cancer patients who received home care in 2020. Medications taken during the last month of the patient's life were reviewed and classified into three major categories: potentially avoidable, defined as medications that usually have no place at the end of life because the time to benefit is shorter than life expectancy; medications of uncertain appropriateness, defined as medications that need case-by-case evaluation because they could have a role at the end of life; and potentially appropriate, defined as medications that provide symptomatic relief. RESULTS: In our study, we enrolled 353 patients, and 2707 medications were analyzed for appropriateness. Among those, 1712 (63.2%) were classified as potentially appropriate, 755 (27.9%) as potentially avoidable, and 240 (8.9%) as medications with uncertain appropriateness. The most common potentially avoidable medications were medications for peptic ulcers and gastroesophageal reflux disease (30.5%), vitamins (14.6%), beta-blockers (9.8%), anticoagulants (7.9%), oral antidiabetics (5.4%) and insulin products (5.3%). Among the potentially appropriate medications, opioid analgesics were the most frequently utilized medications (19.5%), followed by laxatives (19%), nonopioid analgesics (14.4%), gamma-aminobutyric acid analog analgesics (7.7%) and systemic corticosteroids (6%). CONCLUSION: In home care cancer patients, approximately one-third of prescribed medications were considered potentially avoidable. Future measures to optimize medication use in this patient population are essential.

Differences in end-of-life care patterns between types of hospice used for cancer patients: a retrospective cohort study.

BACKGROUND: In response to the rapid aging population and increasing number of cancer patients, discussions on dignified end-of-life (EoL) decisions are active around the world. Therefore, this study aimed to identify the differences in EoL care patterns between types of hospice used for cancer patients. METHODS: In this population-based cohort study, the Korean National Health Insurance Service cohort data containing all registered cancer patients who died between 2017 and 2021 were used. A total of 408,964 individuals were eligible for analysis. The variable of interest, the type of hospice used in the 6 months before death, was classified as follows: (1) Non-hospice users; (2) Hospital-based hospice single users; (3) Home-based hospice single users; (4) Combined hospice users. The outcomes were set as patterns of care, including intense care and supportive care. To identify differences in care patterns between hospice types, a generalized linear model with zero-inflated negative binomial distribution was applied. RESULTS: Hospice enrollment was associated with less intense care and more supportive care near death. Notably, those who used combined hospice care had the lowest probability and frequency of receiving intense care (aOR: 0.18, 95% CI: 0.17-0.19, aRR: 0.47, 95% CI: 0.44-0.49), while home-based hospice single users had the highest probability and frequency of receiving supportive care (Prescription for narcotic analgesics, aOR: 2.95, 95% CI: 2.69-3.23, aRR: 1.45, 95% CI: 1.41-1.49; Mental health care, aOR: 3.40, 95% CI: 3.13-3.69, aRR: 1.35, 95% CI: 1.31-1.39). CONCLUSION: Our findings suggest that although intense care for life-sustaining decreases with hospice enrollment, QoL at the EoL actually improves with appropriate supportive care. This study is meaningful in that it not only offers valuable insight into hospice care for terminally ill patients, but also provides policy implications for the introduction of patient-centered community-based hospice services.

Palliative Care Interventions and End-of-Life Care for Patients with Metastatic Breast Cancer: A Multicentre Analysis.

BACKGROUND: The aim of this study was to describe the implementation of integrated palliative care (PC) and the intensity of care in the last 3 months before death for patients with metastatic breast cancer. MATERIALS AND METHODS: We conducted a multicentric study of all adult patients with metastatic breast cancer who died over a 4-month period. Complete data were collected and checked from clinical records, including PC interventions and criteria regarding EOL care aggressiveness. RESULTS: A total of 340 decedent patients from 12 comprehensive cancer centres in France were included in the study. Sixty-five percent met the PC team with a median time of 39 days between the first intervention and death. In the last month before death, 11.5% received chemotherapy, the frequency of admission to intensive care unit was 2.4%, and 83% experienced acute hospitalization. The place of death was home for 16.7%, hospitalization for 63.3%, PC unit for 20%. Univariate and multivariate analyses showed factors independently associated with a higher frequency of chemotherapy in the last month before death: having a dependent person at home, meeting for the first time with a PC team < 30 days before death, and time between the first metastasis and death below the median. CONCLUSION: PC team integration was frequent and late for patients with metastatic breast cancer. However, PC intervention > 30 days is associated with less chemotherapy in the last month before death. Further studies are needed to better understand how to implement a more effective mode of PC integration for patients with metastatic breast cancer.

Bereaved Respondent Perceptions of Quality of Care by Inpatient Palliative Care Utilization in the Last Month of Life.

BACKGROUND: Under traditional Medicare, accountability measures are specific to each healthcare setting. With the growth of alternative payment models such as Medicare Advantage, the focus of accountability measures can be on the longitudinal episode of care. OBJECTIVE: Using the last month of life as the episode of care, examine bereaved family member perceptions of the quality of care by site of death and inpatient palliative/hospice care. DESIGN: Retrospective cohort study using the National Health Aging Trends Study waves 3-11. SUBJECTS: US decedents age 65 and older with family member or close friend survey response. MAIN MEASURES: Overall rating of the quality of care, perceptions of symptom management, being treated with respect, emotional/spiritual support, communication, and receipt of care that the decedent did not want. KEY RESULTS: Among 2796 interviews (weighted N = 12.6 million), 25.7% died at home with hospice, 10.9% at home without hospice, 10.0% in the ICU, 6.4% at a palliative care unit (PCU), 6.4% at a hospice IPU, 9.1% at hospital without inpatient palliative care, 13.2% at a nursing home without hospice, 9.8% in a nursing home with hospice, 4.1% at a hospice residence, and 4.4% at other locations without hospice. Dying at home with hospice received the highest rating of quality of care (60.2% stated excellent care) while the adjusted marginal differences in sites of death with inpatient palliative care services were rated lower: hospice residence 25.6% points lower (95% CI (-13.7%, -37.5%)) and a freestanding IPU was 16.9% points lower (95% CI (- 4.9%, -29.0%)). CONCLUSION: Examining the episode of care as the last month of life, hospice at home is associated with higher rating of the quality of care while inpatient palliative care services in hospital, hospice residence, or hospice IPU settings are rated lower.

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.

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.

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.

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.