Head and neck cancer affects vital functions of speech, swallowing, breathing, and appearance. Overall survival remains poor and symptom burden is high for both patients with incurable disease at the end of life and for long-term survivors. Early and concurrent palliative care helps guide treatment decision making and support quality of life during and after treatment. Both narrative competence and directive counsel can affect the concordance of patient goals and tolerance of treatment and outcomes.
Malignant ascites (MA) carries a poor prognosis. It can have a significant impact on quality of life (QOL), with increasing abdominal distention, pain, and dyspnea. Diuretics typically do not work well for MA. Paracentesis is effective in providing temporary symptom relief but requires frequent repeat procedures. Options for durable symptom management include indwelling catheters, peritoneal ports, peritoneovenous shunts, intraperitoneal (i.p.) catumaxomab, and hyperthermic i.p. chemotherapy. These interventions do not necessarily improve overall survival but may improve QOL.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.
BACKGROUND: Factors facilitating/hindering concordance between preferred and received life-sustaining treatments may be distorted if preferences and predictors are measured long before death.
AIM: To examine factors facilitating/hindering concordance between cancer patients' preferred and received life-sustaining-treatment states in their last 6 months.
DESIGN: Longitudinal, observational design.
SETTING/PARTICIPANTS: States of preferred and received life-sustaining treatments (cardio-pulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, and nasogastric tube feeding) were examined in 218 Taiwanese cancer patients by a latent transition model with hidden Markov modeling. Multivariate logistic regression modeling was used to examine factors facilitating/hindering concordance between preferred and received life-sustaining-treatment states.
RESULTS: Concordance between preferred and received life-sustaining-treatment states was poor (40.8%, kappa value (95% confidence interval): 0.05 [-0.03, 0.14]). Patients who accurately understood their prognosis and preferred comfort care were significantly more likely to receive preferred life-sustaining treatments before death than those who did not know their prognosis but wanted to know, those who were uniformly uncertain about what life-sustaining treatments they preferred to receive, and those who preferred nutritional support but declined other life-sustaining treatments. Patient age, physician-patient end-of-life-care discussions, symptom distress, and functional dependence were not associated with concordance between preferred and received life-sustaining-treatment states.
CONCLUSION: Prognostic awareness and preferred states of life-sustaining treatments were significantly associated with concordance between preferred and received life-sustaining-treatment states. Personalized interventions should be developed to cultivate terminally ill cancer patients' accurate prognostic awareness, allowing them to formulate realistic life-sustaining-treatment preferences and facilitating their receiving value-concordant end-of-life care.
Background: The C-reactive protein/albumin (CRP/Alb) ratio has been reported as a prognostic factor of survival for patients with a variety of cancers. However, its prognostic impact for advanced cancer patients receiving palliative care remains presently unknown.
Objective: The present study assessed the prognostic value of the CRP/Alb ratio, and compared this with that of the Glasgow Prognostic Score (GPS) and Palliative Prognostic Index (PPI) in a cohort of advanced cancer patients receiving palliative therapy.
Methods: The medical records of 262 eligible patients who died of advanced cancer from February 1, 2013 to December 30, 2017 in the palliative care unit of the Fudan University Shanghai Cancer Center were retrospectively reviewed for the analysis.
Results: The present results revealed that a CRP/Alb ratio =1.31 (hazard ratio [HR], 2.33 [1.78–3.05], p < 0.001) can predict poor prognosis through univariate analysis. In addition, the multivariate analysis revealed that CRP/Alb (HR, 2.09 [1.54–2.84], p < 0.001), GPS (HR, 1.81 [1.07–3.07], p < 0.001), and PPI (HR, 3.35 [2.25–4.99], p < 0.001) were all independent prognosis factors. To compare the discriminatory performance of the CRP/Alb ratio with that of other established prognostic indexes in palliative care settings, the c-statistics, integrated discriminatory improvement index, net reclassification index, and receiver operating characteristic curves were generated, and it was demonstrated that the CRP/Alb ratio (c-statistics, 0.64 [0.61–0.68]) was able to discriminate advanced cancer patients with different survivals, with analogous discriminatory ability as GPS (c-statistics, 0.63 [0.59–0.66]) and PPI (c-statistics, 0.64 [0.60–0.68]). Notably, the combination of multiple prognostic indexes exerted higher discriminatory ability, compared with any single predictive index (c-statistics, 0.69 [0.66–0.73], p < 0.001).
Conclusions: The present study suggests that the CRP/Alb ratio is a promising prognostic factor in predicting cancer patient survival in palliative care settings. Incorporating both objective parameters and the subjective index may improve the prediction accuracy of prognosis.
The early identification of patients with palliative needs has shown benefits in terms of quality of life and treatment goals. No prospective methods have been applied in Argentina to identify palliative needs in cancer patients. The NECPAL tool combines the physician's own insight with objective indicators of disease progression and indicators of chronic advanced conditions. The aim of this study was to identify prognostic factors of mortality in hospitalized and ambulatory patients with cancer and palliative needs according to the NECPAL tool in a University Hospital in Buenos Aires city. Study variables were obtained by interviews with 10 physicians in charge of 317 patients with cancer over a 2-year follow-up period. A total of 183 patients with palliative needs were labelled as NECPAL+. Of these, 137 died after a median 4-month follow-up period. The death rate was 11% patients/month. The mortality was higher in inpatients during the first month (p < 0.003). In the multivariate model, the best predictors of mortality combining relevant indicators were: inpatients (HR 1.87; 95% CI 1.24-2.84; p = 0.003), initial diagnosis other than breast cancer (HR 2.04; 95% CI 1.23-3.40; p = 0.006), metastatic disease (HR 1.67; 95% CI 1.15-2.42; p = 0.007), functional deterioration (HR 1.95; 95% CI 1.28-2.97; p = 0.002), and malnutrition (HR 1.53; 95% CI 1.04-2.23; p = 0.02 9). The major breakthrough was the systematic prospective identification of palliative needs in cancer patients for the first time in Argentina. The NECPAL tool can improve the prediction of mortality in hospital settings.
OBJECTIVES: To determine the accuracy of predictions of dying at different cut-off thresholds and to acknowledge the extent of clinical uncertainty.
DESIGN: Secondary analysis of data from a prospective cohort study.
SETTING: An online prognostic test, accessible by eligible participants across the UK.
PARTICIPANTS: Eligible participants were members of the Association of Palliative Medicine. 99/166 completed the test (60%), resulting in 1980 estimates (99 participants × 20 summaries).
MAIN OUTCOME MEASURES: The probability of death occurring within 72 hours (0% certain survival-100% certain death) for 20 patient summaries. The estimates were analysed using five different thresholds: 50/50%, 40/60%, 30/70%, 20/80% and 10/90%, with percentage values between these extremes being regarded as 'indeterminate'. The positive predictive value (PPV), negative predictive value (NPV) and the number of indeterminate cases were calculated for each cut-off.
RESULTS: Using a <50% versus >50% threshold produced a PPV of 62%, an NPV of 74% and 5% indeterminate cases. When the threshold was changed to =10% vs =90%, the PPV and NPV increased to 75% and 88%, respectively, at the expense of an increase of indeterminate cases up to 62%.
CONCLUSION: When doctors assign a very high (=90%) or very low (=10%) probability of imminent death, their prognostic accuracy is improved; however, this increases the number of ‘indeterminate’ cases. This suggests that clinical predictions may continue to have a role for routine prognostication but that other approaches (such as the use of prognostic scores) may be required for those cases where doctors’ estimates are indeterminate.
Objectives: Little is known about how clinicians perceive prognostic uncertainty. Our study objective was to identify factors that influence how prognostic uncertainty is viewed by physicians, as it relates to their communications with families.
Design: Thirty semi-structured interviews with qualitative content analysis (9 surgeons, 16 intensivists, 3 nurse practitioners, and 2 ?other? clinicians). We analyzed interviews using qualitative description with constant comparative techniques.
Setting: Open medical, surgical, neurosurgical, and cardiovascular intensive care units (ICUs) in a 900-bed academic, tertiary Houston hospital.
Results: We identified 2 main factors that influence how clinicians perceive prognostic uncertainty and their perceptions about whether and why they communicate prognostic uncertainties to families: (1) Communicating Uncertainty to "Soften the Blow"; and (2) Communicating Uncertainty in Response to Clinicians' Interpretations of Surrogate Decision Makers' Perceptions of Prognostic Uncertainty. We also identified several subthemes.
Conclusions: Clinician'family interactions influence how clinicians perceive prognostic uncertainty in their communications with patients or families. We discuss ethical and clinical implications of our findings.
BACKGROUND: There is little consensus on how best to manage head and neck cancer with palliative intent. Predicting outcome is difficult and reported survival varies. The present study sought to delineate local practice and outcomes in patients treated with palliative intent.
METHODS: The clinical records of all head and neck cancer patients treated with palliative intent presenting between 2015 and 2016 to our multidisciplinary team were reviewed.
RESULTS: Eighty-four patients (21.5 per cent) were treated with palliative intent. All had squamous cell carcinoma. Mean survival time was 151 days (standard deviation = 121.1; range, 8-536 days). Of the patients, 83.3 per cent had a palliative care referral; 74.1 per cent had a hospice referral. Patients received a variety of interventions, and there was an associated complication in 8.2 per cent. The mean number of days spent in hospital for interventions was 11.9 days (standard deviation = 12.5; range, 0-41 days).
CONCLUSION: Different interventions are used to manage head and neck cancer patients with palliative intent, and these may be associated with significant morbidity. Survival time is variable, often several months; thus, any treatment must take into account morbidity in conjunction with the patient's wishes.
BACKGROUND: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions.
METHODS: An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance - 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A "surprise threshold" for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance.
DISCUSSION: This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice.
OBJECTIVE: To develop and validate a simple prognostic tool for early prediction of survival of patients with advanced cancer in a tertiary care setting.
DESIGN: Prospective cohort study with 2 years' follow-up.
SETTING: Single tertiary teaching hospital in Singapore.
PARTICIPANTS: The study includes consecutive patients diagnosed with advanced cancer who were referred to a palliative care unit between 2013 and 2015 (N=840). Data were randomly split into training (n=560) and validation (n=280) sets.
RESULTS: 743 (88.5%) patients died with a mean follow-up of 97.0 days (SD 174.0). Cox regression modelling was used to build a prognostic model, cross-validating with six randomly split dataset pairs. Predictor variables for the model included functional status (Palliative Performance Scale, PPS V.2), symptoms (Edmonton Symptom Assessment System, ESASr), clinical assessment (eg, the number of organ systems with metastasis, serum albumin and total white cell count level) and patient demographics. The area under the receiver operating characteristic curve using the final averaged prognostic model was between 0.69 and 0.75. Our model classified patients into three prognostic groups, with a median survival of 79.0 days (IQR 175.0) for the low-risk group (0-1.5 points), 42.0 days (IQR 75.0) for the medium-risk group (2.0-5.5 points), and 15.0 days (IQR 28.0) for the high-risk group (6.0-10.5 points).
CONCLUSIONS: PROgnostic Model for Advanced Cancer (PRO-MAC) takes into account patient and disease-related factors and identify high-risk patients with 90-day mortality. PPS V.2 and ESASr are important predictors. PRO-MAC will help physicians identify patients earlier for supportive care, facilitating multidisciplinary, shared decision-making.
BACKGROUND AND OBJECTIVES: Clinical management for terminal patients should consider various aspects, particularly the patient's functional assessment, which correlates well with the short-term prognosis. The prognosis could improve if the presence of symptoms strongly associated with a poorer progression were included. The study's main objective was to assess whether the prognosis according to the Palliative Performance Scale (PPS) improved with the presence/absence of pain-dyspnoea-delirium symptoms. The secondary objective was to determine caregiver satisfaction with the transfer to medium-stay palliative care units (MSPCUs), which are prepared for medium stays of approximately one month.
PATIENTS AND METHOD: We conducted a prospective, observational, multicentre (regional) study that analysed survival in MSPCUs according to the PPS dichotomized to > 20% and = 20%. We estimated the mean survival functions using the Kaplan-Meier method and compared them according to the Cox proportional hazards ratios (HR). Caregiver satisfaction was studied using an anonymous self-administered Likert questionnaire.
RESULTS: The study included 130 patients. The PPS = 20% and PPS > 20% subgroups had a median survival of 6 (3-13) days and 21 (11-42) days, respectively, with an unadjusted mortality HR 3.1-fold greater in the PPS = 20% subgroup. The HR did not change when adjusted for the symptoms. Eighty-three percent of the caregivers found the transfer beneficial, and 40% observed better patient care.
CONCLUSIONS: For patients transferred from general hospitals to MSPCUs, PPS scores = 20% were associated with survival shorter than one week, with a 3-fold higher mortality HR than patients with PPS scores > 20%, without the analysis adjusted for the presence of pain-dyspnoea-delirium providing greater prognostic accuracy. The caregivers found benefits mainly in the convenience of the facilities and distance.
RESEARCH QUESTION: How does the process of engagement and integration of sources of information outside patient-physician interaction affect how individuals with cancer interpret their treatment experience and prognosis?
BACKGROUND: Studies of patient-physician communication of prognosis in oncology highlight areas where misunderstanding occurs: understanding consequences of treatment, likelihood of treatment success, probability of cure, status/progression of illness, and prognosis. Theories proposing mechanisms that underlie this discrepancy cannot account for all instances of misunderstanding, including when complete and direct physician disclosure occurs. Prior research focused on patient-physician communication event(s) and immediate antecedents and consequences. However, less is known about what happens to information once it has been communicated and how a patient's process to interpret the meaning of their experience affects their understanding of it. Our study explores this question by examining patient communication with sources of information other than treating physicians.
METHODOLOGY: We conducted 10 semi-structured qualitative interviews with individuals diagnosed with 4 types of cancer at different stages. The interviews were analyzed using inductive qualitative analysis.
RESULTS: Participants in our sample consulted a variety of additional sources to give context and understanding to their communicated prognosis. These were important contributors to how they understood their prognosis and incorporated that understanding. They included family, friends/acquaintances, cancer survivors, support/survivor groups, secondary health-care staff, and relevant informational materials. Different motivations for seeking out these sources were also expressed. Participants expressed a link between their understanding of their prognosis and the variety of outside sources they enlisted for input and support.
Patients often affirm the goal to pursue comfort at the end of life, although clinicians may struggle with how best to provide comfort and face the ethical dilemma of treating or allowing a suspected infection to unfold. Treating an infection at the end of life does not allow for uniform improvement in symptoms and more time with family and friends. Additionally, there is potential for burden to the patient or health care system and treatment may occur to the exclusion of other comfort measures. Currently, the practice of providing or forgoing antibiotics at the end of life is variable, and literature supporting best practices can be contradictory. Data to support the use or withholding of treatment have been scant and vary across settings and patient populations. We review common obstacles providers face, prognostication tools that may assist in clinical decision making, the ethical support for withholding therapy, and how to factor in potential burdens of treatment. We propose that nurses, whether at the bedside in an acute care or nursing facility or in the home setting as a member of the interdisciplinary home hospice team, are uniquely qualified to help patients and families navigate this challenging clinical decision.
OBJECTIVES: Patients with colorectal cancer undergoing palliative treatment receive extensive treatment-related information throughout their disease trajectory. We aimed to explore the experiences of patients with incurable colorectal cancer while in palliative care and their reflections on the information provided by physicians and nurses. Our main focus was the patients' thoughts about how information about disease status and life expectancy was communicated, from the first time that they were informed about the incurable nature of their disease through to postsurgery palliative treatment.
SETTINGS: Patients with colorectal cancer receiving palliative chemotherapy.
RESEARCH DESIGN: We used a qualitative approach, and the data were analysed by qualitative content analysis.
PARTICIPANTS: 20 patients (34-75 years of age) were included in the study; 12 received first-line chemotherapy and 8 received second-line chemotherapy. Eleven patients were treated by oncologists, and nine were treated by junior physicians.
RESULTS: Data-driven empirical analysis identified three themes: (1) inadequate information during the initial phase of the disease trajectory; (2) hope and information further into the disease trajectory and (3) personal, professional and organisational factors that influenced information and communication throughout the disease trajectory.
CONCLUSION: The participants' experience of being told for the first time that they had an incurable disease was perceived as inadequate, while postsurgery palliative chemotherapy, physicians and nurses offered hope. The participants preferred customised information about their treatment and likely future prospects and physicians and nurses who took a holistic and compassionate approach focusing on their lifeworld. To be a sensitive, holistic and compassionate physician or nurse requires knowledge and confidence. To achieve this requires training and guidance at universities and in hospitals.
Background: Terminally ill cancer patients' worsening symptom distress and functional impairment may signal disease deterioration, thus facilitating their accurate prognostic awareness (PA). However, the joint roles played by symptom distress and functional impairment in association with cancer patients' accurate PA remain unexplored.
Methods: We used hierarchical generalized linear modeling to assess associations between our five identified worsening conjoint symptom-functional states and accurate PA in a convenience sample of 317 terminally ill cancer patients over their last six months.
Results: The majority of our participants (70.1%-76.3%) had accurate PA in their last six months. This proportion did not increase as death approached but varied significantly by the five identified distinct symptom-functional states. Participants in the four worst symptom-functional states (moderate/profound symptom distress with mild/profound functional impairment) had a higher likelihood of accurate PA than those in the best state (mild symptom distress with high functioning). Participants with severe or profound symptom distress (states 3 and 5) had a substantially higher likelihood of accurate PA than those with moderate symptom distress (states 2 and 4).
Conclusion/Clinical Implications: Terminally ill cancer patients' five distinct conjoint worsening symptom-functional states were differentially associated with their likelihood of accurate PA. Health care professionals should cultivate these patients' accurate PA when they are still free from severe symptom distress and functional impairment, effectively manage symptoms for those suffering from severe/profound symptom distress, and facilitate their psychological-spiritual adjustment to acknowledge their poor prognosis and the accompanying challenges of end-of-life care decisions to maximize quality of life and achieve a good death.
OBJECTIVE: To investigate views, determinants and barriers to end-of-life discussions for doctors, nurses and members of the public (MoP) and their acceptability of risk prediction tools.
METHODS: Concurrent surveys of 360 doctors and nurses and 497 MoP.
RESULTS: Sixty per cent of clinicians reported high confidence in initiating end-of-life discussions, and 55.8% regularly engaged in them. Barriers to end-of-life communication reported by clinicians were uncertainty on the likely time to death (44.7%) and family requests to withhold information from patients (44.2%). By contrast, most (92.8%) MoP wanted information about life expectancy; 89.9% wanted involvement in treatment decisions if the likelihood of death was high; and 23.8% already had an advance care directive.
CONCLUSIONS: A dissonance exists between doctor/nurses perception of older peoples' preference for receiving prognostic information and the public desire for involvement in decision-making at the end of life. As public attitudes change, strategies for greater involvement of patients in shared end-of-life planning are warranted.
Background: Routine imaging (“scan”) results contain key prognostic information for advanced cancer patients. Yet, little is known about how accurately patients understand this information, and whether psychological states relate to accurate understanding.
Objective: To determine if patients' sadness and anxiety, as well as results showing poorer prognosis, are associated with patients' understanding of scan results.
Design: Archival contrasts performed on multi-institutional cohort study data.
Subjects: Advanced cancer patients whose disease progressed after at least one chemotherapy regimen (N = 94) and their clinicians (N = 28) were recruited before an oncology appointment to discuss routine scan results.
Measurements: In preappointment structured interviews, patients rated sadness and anxiety about their cancer. Following the appointment, patients and clinicians reported whether the imaging results discussed showed progressive, improved, or stable disease.
Results: Overall, 68% of patients reported their imaging results accurately, as indicated by concordance with their clinician's rating. Accuracy was higher among patients whose results indicated improved (adjusted odds ratio [AOR] = 4.12, p = 0.02) or stable (AOR = 2.59, p = 0.04) disease compared with progressive disease. Patients with greater anxiety were less likely to report their imaging results accurately than those with less anxiety (AOR = 0.09, p = 0.003); in contrast, those with greater sadness were more likely to report their results accurately than those with less sadness (AOR = 5.23, p = 0.03).
Conclusions: Advanced cancer patients with higher anxiety and those with disease progression may need more help understanding or accepting their scan results than others.
Background/Aims: Advance directives (ADs) in Korean patients with heart failure (HF) and the associations of attitude towards ADs and HF prognosis with ADs were initially assessed using the model of the Korean-Advance Directive (K-AD).
Methods: Twenty-four patients with HF (age, 67.1 years; men, 58.3%; ejection fraction, 35.9%) participated. A pilot test to evaluate the feasibility of ADs and the possible associations of attitudes towards ADs and prognosis with end-of-life treatment preferences among patients with HF was conducted.
Results: Fifteen patients (62.5%) completed the K-Ads. The major reason for incomplete K-AD was knowledge deficit. Patients valued "comfortable death" the most (45.4%), followed by "giving no burden to the family" (13.6%). Among treatment preferences, hospice care was preferred by the majority (66.7%), while cardiopulmonary resuscitation (CPR) was preferred by the minority (31.8%). Children (50.0%) were mostly appointed as a proxy, followed by the spouse (33.3%). More patients with moderately positive attitudes completed the K-ADs than their counterparts (70.0% vs. 57.1%). The 5-year survival rate was 69.2%; the patients who preferred CPR had a higher survival rate (70.6% vs. 68.5%) whereas those who preferred hospice care had a lower survival rate than their counterparts (70.7% vs. 75.2%).
Conclusions: The findings support the feasibility of the K-AD model, with a high acceptance rate in two-thirds of the sample. Further studies are warranted to investigate whether treatment preferences are associated with attitude towards ADs and/or HF prognosis using larger sample size.
BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life care needs of this growing population of young people. This study characterized current practices, beliefs, and challenges specific to the disclosure of prognosis and end-of-life care topics among providers caring for pediatric organ failure and transplant populations.
METHODS: This cross-sectional study included 144 healthcare providers actively caring for children, adolescents, and young adults with organ failure or solid organ transplant history. Participants completed an electronic survey measuring frequency and comfort in discussing the following topics with patients and parents: prognosis/survival statistics, re-transplantation, advance care planning (ACP), and death/dying. Descriptive statistics, two-sample t tests, and analysis of variance were used.
RESULTS: Fewer than half of respondents regularly discuss prognosis/survival statistics and potential need for re-transplantation with their pediatric and young adult patients. Less than 20% of providers engage their pediatric patients in ACP discussions, and approximately 30% facilitate such discussions with young adult patients. Pediatric organ failure and transplant providers endorse a number of barriers specific to discussing these topics.
CONCLUSION: Pediatric organ failure and transplant providers do not regularly discuss prognosis or end-of-life care topics with this patient population. Communication-focused intervention research is needed to improve honest and compassionate discussion of these topics that is aligned with both patients' and parents' needs and preferences.