Illness Conversations Research Articles

Improving serious illness conversations in oncology: A machine learning approach that integrates natural language processing for mortality prediction.

590 Background: ML-based mortality prediction tools in oncology can optimize clinical decisions and prompt end-of-life care discussions. Patients with advanced cancer who have engaged in Goals of Care (GoC) conversations report improved quality of life and better care alignment. However, oncologists often have overly optimistic prognoses and miss timely GoC discussions. Clinical notes are a valuable source of information, but processing and extracting data from them is time-consuming and labor-intensive. To address this issue, we have developed a machine learning application that ingests clinical notes and structured data from electronic health records (EHRs) to generate a 180-day mortality risk, prompting oncologists for GoC conversations. Methods: A predictive machine learning model was developed using data from cancer patients aged 21 and above, diagnosed between January 2016 and December 2021. Data was collected from various sources, including cancer and death registry and the EHR. By analyzing structured and unstructured data from ambulatory progress notes, a clinical profile was created for each patient. The model utilized Spark-NLP for preprocessing, applying word2vec embedding and pre-trained NER models to extract information on diseases, symptoms, procedures, treatments, and medications. Feature engineering techniques were used to select the best NLP features, combined with structured data. The model was trained using 894 patients, employing Random Forest Classifier with 10-fold cross-validation, and tested on a separate set of 43,274 patients. Performance evaluation included ROC AUC, PR AUC, and F1 Score metrics. Results: After the fine tuning, the best model showed an AUC-ROC of 0.88 on the train set and 0.75 on the test set. At a threshold of 0.44, the model achieved a balanced performance with a sensitivity of 0.70 and specificity of 0.71 on the testing set. Conclusions: Our team pioneered the development of an automated multi-modality pipeline that combines unstructured real-world data with structured data, allowing for training and testing of a fusion model. This automation opens doors for scaling and dissemination, to enhance mortality prediction. Future works will involve qualitative analysis of implementation and acceptance in clinical practice.

Bridging the gap: An integrated approach to transitions in care.

327 Background: Acute leukemia necessitates specialized care across multiple settings. Poorly executed transitions pose risks to quality and safety. Through the implementation of Lean Six Sigma methodology, we introduced an experienced APP (Advanced Practice Provider) known as the ‘Transitions Coordinator’ to collaborate with primary team, educate patients about disease/treatment plans, facilitate advanced care planning, and ensure smooth transition to post-acute outpatient care. Methods: The Transitions APP applies clinical guideline expertise to assess data, facilitate care coordination, and provide recommendations to the primary team. Other crucial aspects of the intervention encompass structured counseling sessions with patients to enhance health literacy, evaluation of patient values through advanced care planning, and a post-discharge phone call to verify understanding of instructions. The intervention concludes with a formal handoff process accompanied by thorough documentation. Results: Results show significant improvements post-intervention. The 30-day unplanned readmission rate decreased from 24.6% to 19.1%, surpassing the goal of 20%. The Serious Illness Conversation (SIC) rate increased from 11% to 92%, exceeding the 80% target. Staff perceptions of patient care improved, with increased confidence in follow-up care (2.7% to 29.2%) and patient support (12% to 41.5%). Patient experience ratings also indicated enhanced communication with doctors. Conclusions: Our intervention successfully addressed the challenges in acute leukemia care transitions. The integration of an APP Transitions Coordinator led to better communication, reduced readmission rates, and improved advanced care planning. This model can be applied to various patient populations with serious diagnoses requiring complex care. Lessons learned include the need for a customized approach and key elements such as education, advance care planning, discharge phone calls, and formal handoff processes. By bridging the gap between inpatient and post-acute care, we achieved better overall patient outcomes. This approach has the potential to benefit patients with other serious conditions like heart failure or chronic lung disease. Our experience highlights the importance of adapting the role to individual patient needs and ensuring timely delivery of necessary content.

What outcome do older adults with cancer prioritize when asked?

316 Background: The critical components of cancer care for older adults with cancer are geriatric assessment, goal setting, and skilled communication. Does defaulting a serious illness communication checklist inform preferences among outcomes from older adults with cancer? Methods: Patients ≥ 75 with a new solid tumor diagnosis were navigated into an older adult pathway. In addition to a standardized geriatric assessment (including physical fitness, function, cognition, psychological wellness, social support, caregiver distress, and nutritional status), the Serious Illness Conversation Guide (Ariadne Labs, Harvard Medical School) was used to structure the conversation around goals and values. The Outcome Prioritization Tool was used to elicit preferences for older adults. Results: 171 consecutive older adults were assessed from September 2021 to April 2023. The median age was 83 (range 75-97). Using the VES-13 survey, 11% of patients were fit, 62% vulnerable and 27% frail. Issues in cognition (12%), psychological health (22%), social support (39%), and nutrition (29%) were noted. Preserving independence was the most common treatment goal (77%) for older adults and quality of life was a common value (82%). Through shared decision-making, nearly one in three patients deviated from standard of care to align treatment with their priorities. Conclusions: Patient and caregiver value assessment is important to prioritize in cancer care. By leveraging behavioral economics, using a default pathway, and allocating appropriate resources, we were able to structure how older adults navigated through a community oncology clinic and personalized treatment plans with their goals.

Somtimes: self organizing maps for time series clustering and its application to serious illness conversations

There is demand for scalable algorithms capable of clustering and analyzing large time series data. The Kohonen self-organizing map (SOM) is an unsupervised artificial neural network for clustering, visualizing, and reducing the dimensionality of complex data. Like all clustering methods, it requires a measure of similarity between input data (in this work time series). Dynamic time warping (DTW) is one such measure, and a top performer that accommodates distortions when aligning time series. Despite its popularity in clustering, DTW is limited in practice because the runtime complexity is quadratic with the length of the time series. To address this, we present a new a self-organizing map for clustering TIME Series, called SOMTimeS, which uses DTW as the distance measure. The method has similar accuracy compared with other DTW-based clustering algorithms, yet scales better and runs faster. The computational performance stems from the pruning of unnecessary DTW computations during the SOM’s training phase. For comparison, we implement a similar pruning strategy for K-means, and call the latter K-TimeS. SOMTimeS and K-TimeS pruned 43% and 50% of the total DTW computations, respectively. Pruning effectiveness, accuracy, execution time and scalability are evaluated using 112 benchmark time series datasets from the UC Riverside classification archive, and show that for similar accuracy, a 1.8×\\documentclass[12pt]{minimal} \\usepackage{amsmath} \\usepackage{wasysym} \\usepackage{amsfonts} \\usepackage{amssymb} \\usepackage{amsbsy} \\usepackage{mathrsfs} \\usepackage{upgreek} \\setlength{\\oddsidemargin}{-69pt} \\begin{document}$$\ imes$$\\end{document} speed-up on average for SOMTimeS and K-TimeS, respectively with that rates vary between 1×\\documentclass[12pt]{minimal} \\usepackage{amsmath} \\usepackage{wasysym} \\usepackage{amsfonts} \\usepackage{amssymb} \\usepackage{amsbsy} \\usepackage{mathrsfs} \\usepackage{upgreek} \\setlength{\\oddsidemargin}{-69pt} \\begin{document}$$\ imes$$\\end{document} and 18×\\documentclass[12pt]{minimal} \\usepackage{amsmath} \\usepackage{wasysym} \\usepackage{amsfonts} \\usepackage{amssymb} \\usepackage{amsbsy} \\usepackage{mathrsfs} \\usepackage{upgreek} \\setlength{\\oddsidemargin}{-69pt} \\begin{document}$$\ imes$$\\end{document} depending on the dataset. We also apply SOMTimeS to a healthcare study of patient-clinician serious illness conversations to demonstrate the algorithm’s utility with complex, temporally sequenced natural language.

Creating a culture for change: Lessons from behavioral economics and complexity science to increase serious illness conversations for patients with cancer

Patient-centered cancer care requires communication between patients and clinicians about patients’ goals, values, and preferences. Serious illness communication improves patient and caregiver outcomes, the value and quality of cancer care, and the well-being of clinicians. Despite these benefits, there are competing factors including time, capacity, bandwidth, and resistance. Health systems and oncology practices have opportunities to invest in pathways that assist patients and clinicians to engage in serious illness conversations. We discuss how applying insights from behavioral economics and complexity science may help clinicians engage in serious illness conversation and improve patient-centered cancer care.

Kidney Transplant Clinicians’ Perceptions of Palliative Care for Patients With Failing Allografts in the US: A Mixed Methods Study

Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population. National explanatory sequential mixed methods study including an online survey and semistructured interviews. Kidney transplant clinicians in the United States surveyed and interviewed from October 2021 to March2022. Descriptive summary of survey responses, thematic analysis of qualitative interviews, and mixed methods integration of data. A total of 149 clinicians completed the survey, and 19 completed the subsequent interviews. Over 90% of respondents agreed that palliative care can be helpful for patients with a failing kidney allograft. However, 46% of respondents disagreed that all patients with failing allografts benefit from palliative care, and two-thirds thought that patients would not want serious illness conversations. More than 90% of clinicians expressed concern that transplant patients and caregivers would feel scared or anxious if offered palliative care. The interviews identified three main themes: (1) transplant clinicians' unique sense of personal and professional responsibility was a barrier to palliative care engagement, (2) clinicians' uncertainty regarding the timing of palliative care collaboration would lead to delayed referral, and (3) clinicians felt challenged by factors related to patients' cultural backgrounds and identities, such as language differences. Many comments reflected an unfamiliarity with the broad scope of palliative care beyond end-of-life care. Potential selection bias. Our study suggests that multiple barriers related to patients, clinicians, health systems, and health policies may pose challenges to the delivery of palliative care for patients with failing kidney transplants. This study illustrates the urgent need for ongoing efforts to optimize palliative care delivery models dedicated to kidney transplant patients, their families, and the clinicians who serve them. Kidney transplant patients experience physical and psychological suffering in the context of their illnesses that may be amenable to palliative care. However, palliative care is often underutilized in this population. In this mixed-methods study, we surveyed 149 clinicians across the United States, and 19 of them completed semistructured interviews. Our study results demonstrate that several patient, clinician, system, and policy factors need to be addressed to improve palliative care delivery to this vulnerable population.

Testing the What Matters to Me workbook in a diverse sample of seriously ill patients and caregivers

ObjectivesWe evaluated the What Matters to Me Workbook, a patient-facing version of the Serious Illness Conversation Guide co-created by Ariadne Labs and The Conversation Project. MethodsWe purposively recruited diverse seriously ill patients and caregivers in the US. Participants completed the Workbook, a survey, and a semi-structured in-depth interview about their experience. Qualitative analysis of interviews and notes was employed to extract themes. Simple descriptive statistics were employed to analyze eight investigator authored questions. ResultsTwenty-nine study participants completed twenty-one interviews and twenty-five surveys. Ratings for safety (3.87/4, SD = 0.43) and acceptability (3.59/4, SD = 0.956) were higher than ratings for ease of use (3.30/4, SD = 0.97) and usefulness (3.24/4, SD = 0.80). Qualitative analysis identified that while the workbook was safe, acceptable, easy to use, and useful, it is more important who is recommending it and how they are explaining it. ConclusionIf presented in the right way by a trustworthy person, the What Matters to Me Workbook can be an easy to use, useful, and safe resource for patients with serious illness and their caregivers. InnovationThe Workbook focuses on serious illness rather than end-of-life and meshes with a clinician-facing conversation guide and a health-system level intervention.

Aging is not an Illness: Exploring Geriatricians' Resistance toSerious Illness Conversations.

Serious illness conversations help clinicians align medical decisions with patients' goals, values, and priorities and are considered an essential component of shared decision-making. Yet geriatricians at our institution have expressed reluctance about the serious illness care program. We sought to explore geriatricians' perspectives on serious illness conversations. We conducted focus groups with interprofessional stakeholders in geriatrics. Three key themes emerged that help explain the reluctance of clinicians caring for older patients to have or document serious illness conversations: 1) aging in itself is not a serious illness; 2) geriatricians often focus on positive adaptation and social determinants of health and in this context, the label of "serious illness conversations" is perceived as limiting; and 3) because aging is not synonymous with illness, important goals-of-care conversations are not necessarily documented as serious illness conversations until an acute illness presents itself. As institutions work to create system-wide processes for documenting conversations about patients' goals and values, the unique communication preferences of older patients and geriatricians should be specifically considered.

A Worksheet to Facilitate Discussions of Values for Patients With Metastatic Cancer: A Pilot Study.

Individual goals and values should drive medical decision making for patients with serious illness. Unfortunately, clinicians' existing strategies to encourage reflection and communication regarding patients' personal values are generally time-consuming and limited in scope. Herein, we develop a novel intervention to facilitate at-home reflection and discussion about goals and values. We then conduct a pilot study of our intervention in a small population of patients with metastatic cancer. We first engaged former cancer patients and their families to adapt an existing serious illness communication guide to a worksheet format. We then distributed this adapted "Values Worksheet" to 28 patients with metastatic cancer. We surveyed participants about their perceptions of the Worksheet to assess its feasibility. Of 30 patients approached, 28 agreed to participate. Seventeen participants completed the Values Worksheet, and of those 11 (65%) responded to the follow-up survey. Seven of eleven reported that the Values Worksheet was a good use of time, and nine of eleven would be likely to recommend it to other patients with cancer. Eight of ten reported mild distress, two of ten reported moderate to severe distress. The Values Worksheet was a feasible way to facilitate at-home discussions of goals and values for select patients with metastatic cancer. Further research should focus on identifying which patients are most likely to benefit from the Values Worksheet, and should employ the Worksheet as one tool to facilitate reflection on the questions that arise around serious illness, as an adjunct to serious illness conversations with a physician.

Adapting the Serious Illness Conversation Guide for Dementia Care.

Introduction: Advance care planning (ACP), a critical component of quality dementia care, is underutilized due to lack of clinician comfort and the challenging nature of ACP in this context. The Serious Illness Conversation Guide (SICG) is a well-validated clinician-facing tool, developed with patient and clinician input, to facilitate ACP. The aim of this project was to adapt the SICG for dementia for the first time to promote high-quality ACP. Methods: This study uses a mixed-methods approach to adapt the SICG tool for use in dementia care. Experts with relevant clinical, ethical, and topical knowledge were interviewed to develop alterations to the SICG for dementia care. Patients and caregivers were shown a mock interview of the adapted SICG for dementia (SICG-D) to elicit feedback. Results: 8 relevant experts were interviewed. Adaptations included topical alterations to make the conversation more applicable to dementia as well as alterations to the structure of the conversation to accommodate the patient-caregiver dyad. Twenty interviews were conducted with 14 patients and 18 caregivers (either together or separately). A thematic content analysis of interview transcripts demonstrated positive impressions of the tool. In anonymous survey results, 94% reported a positive impression of the conversation and 89% endorsed incorporation of the adapted guide into dementia healthcare. Conclusion: This paper presents the SICG-D, an adapted version of the SICG for use in dementia care. This guide leverages the strengths of the SICG to promote values-based ACP conversations and has been adapted to better facilitate patient-caregiver-clinician triadic communication.

JPSM Controversies in Palliative Care: “What is the Most Important, Measurable Goal of Serious Illness Conversations in the Ambulatory Setting?”

There is widespread agreement that clinicians should talk to seriously ill patients and their families about their illnesses. However, advance directives as a quality metric have been called into question because of the lack of data that these conversations lead to goal-concordant care. The controversy has led many to reexamine the purpose of conversations with seriously ill patients and what should be discussed in ambulatory visits. In this Controversies in Palliative care, experts in palliative care review the literature and suggest both how it influences their clinical practice and what research needs to be done to clarify the controversy. While there is not a single outcome that the experts agree on, they posit a variety of different ways to assess these conversations.

Are Safety-Net Primary Care Physicians Prepared to Engage in Serious Illness Conversations?

Advance Care Planning (ACP) has not reliably improved care for patients at end-of-life. Serious Illness Conversations when patients are in the late stages of chronic illness might be more effective to address patients' goals. The Serious Illness Conversation (SIC) Guide has been helpful but was not developed for use in safety-net settings serving racial and ethnic minority populations. Physicians were recruited to complete a needs assessment survey prior to training in the use of the SIC Guide. Of the 44 physician participants, most were female (82%) and white, non-Hispanic (62%). Less than half of respondents rated themselves as skilled or very skilled in basic serious illness communication related tasks such as setting up goals of care discussions (44%), assessing informational preferences (42%), sharing prognosis (38%), exploring goals for future care (49%) and managing family dynamics (44%). Respondents reported lower skill levels in conducting goals of care conversations via telehealth and establishing trust in racially discordant provider/patient pairs. Most participants expressed the need for further training in critical end-of-life communications skills, including help with encounters with racial and/or language discordance. This may help to explain the failure of ACP discussions to reliably result in appropriate end-of-life care.

Parental perspectives on the clinician's approach to serious illness communication: A qualitative study.

To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. An exploratory qualitative design was used, employing a thematic analysis of data derived through semi-structured interviews which presented hypothetical vignettes of serious illness conversations to elicit parental perspectives. Adult parents of children with a life-limiting condition, in a stable phase of care, known to the Neurodevelopment and Disability Department of a tertiary Children's Hospital in Melbourne, Australia, were purposively sampled to achieve a broad representation of relevant clinical and sociodemographic factors. Eleven parents (72% female) of children aged 7months to 18years participated. Two major themes characterized parental perspectives on serious illness communication: "Approaches clinicians can use to lay the foundation for quality communication" including checking in, validation, aligning with hopes and a commitment to listening and being present; and "Approaches clinicians can use to aid the delivery of information" including honesty and compassion, presenting possibilities, providing a plan, and conveying the clinician's experience. This study provides novel insights into the perspectives of parents of children with life-limiting conditions that inform how clinicians may best approach serious illness communication. The findings highlight the need for clinicians working in pediatric health care to be cognizant of parents' needs before and during conversations. Laying the foundation for quality communication is important alongside the approaches outlined that aid in the delivery of information.

Advance Care Planning in South Africa

South Africa (SA), an upper middle-income country, faces significant challenges, including severe inequality, poverty, high unemployment rates, unequal access to basic services, and a long history of human rights violations. It is a diverse nation with eleven official languages. The country also bears a heavy burden of communicable and non-communicable diseases, with many patients seeking healthcare services too late. Despite the pressing need, palliative care is still an emerging field in South Africa, with limited funding allocated for its integration.Advance Care Planning (ACP) is a recommended practice in SA for patients with serious illnesses while they are still in good health and can function independently. Non-Governmental Organizations (NGOs) in SA have played a significant role in integrating ACP planning within their settings through advocacy and training. ACP has been included in both formal academic training and training programs offered by NGOs. Additionally, research has been initiated to evaluate the acceptability and validity of the Serious Illness Conversation Guide within the cultural diversity and complexities of the SA context.Acceptance of ACP amongst SA healthcare workers and the public faces many challenges. Many South Africans still have a low level of trust and acceptance towards the public healthcare system. In many South African cultures discussing death and dying is considered culturally taboo. Traditional cultures interpret and apply the concept of individual autonomy differently. The philosophy of “Ubuntu”, which translates to “I am because we are”, is widely endorsed in the country, prioritising community needs over individual needs. It is, therefore, essential for healthcare professionals engaging in ACP conversations not to make assumptions about a person's preferences for communication, decision-making and care, based on external attributes. Instead, they should respectfully explore these preferences and be adaptable in their approach to ACP.The implementation of ACP in SA is still in its early stages, requiring further research to inform culturally sensitive approaches to advance care planning.

Interdisciplinary collaboration in serious illness conversations in patients with multiple myeloma and caregivers – a qualitative study

BackgroundThere is growing evidence that conversations between healthcare professionals and patients with serious illness can improve the quality of end-of-life cancer care. Yet, there is lack of insight into how different healthcare professions collaborate to deliver serious illness communication, as well as patients’ and caregivers’ perceptions of this collaboration between the nurse and physician. This study explores the interdisciplinary collaboration between nurses and physicians in serious illness conversations with patients diagnosed with multiple myeloma and their caregivers.MethodsEleven dyadic interviews were conducted with 22 patients and caregivers, and two focus group interviews involving four nurses and the other with four physicians. Data analysis and reporting were conducted using reflexive thematic analysis within phenomenological epistemology.ResultsThe interdisciplinary collaboration was characterized by three main themes: (1) Importance of relationships, (2) Complementary perspectives, and (3) The common goal.ConclusionThis study highlights the importance of interdisciplinarity in serious illness conversations as it enhances the use of existential and descriptive language when addressing medical, holistic, and existential issues. The use of broader language also reflects that interdisciplinary interaction strengthens the expertise of each professional involved in patient care. Through interdisciplinary collaboration, the preferences, hopes, and values of the patient and caregiver can be integrated into the treatment plan, which is key in providing the delivery of optimal care. To promote cohesive and coordinated collaboration, organizational changes are recommended such as supporting continuity in patient–healthcare professional relationships, providing interdisciplinary training, and allocating time for pre-conversation preparation and post-conversation debriefing.

Factors and Barriers to Goals-of-Care Conversations for Patients With Cancer and Inpatient Mortality.

Conversations about personal values and goals of care (GOC) at the end of life are essential in caring for patients with advanced cancer. However, GOC conversations may be influenced by patient and oncologist factors during transitions of care. We electronically administered surveys to medical oncologists of inpatients who died from May 1, 2020, to May 31, 2021. Primary outcomes included oncologists' knowledge of inpatient death, anticipation of patient death, and recollection of GOC discussions. Secondary outcomes, including GOC documentation and advance directives (ADs), were collected retrospectively from electronic health records. Outcomes were analyzed for association with patient, oncologist, and patient-oncologist relationship factors. For 75 patients who died, 104/158 (66%) surveys were completed by 40 inpatient and 64 outpatient oncologists. Eighty-one oncologists (77.9%) were aware of patients' deaths, 68 (65.4%) anticipated patients' deaths within 6 months, and 67 (64.4%) recalled having GOC discussions before or during the terminal hospitalization. Outpatient oncologists were more likely to report knowledge of patient death (P < .001), as were those with longer therapeutic relationships (P < .001). Inpatient oncologists were more likely to correctly anticipate patient death (P = .014). Secondary outcomes revealed 21.3% of patients had documented GOC discussions before admission and 33.3% had ADs; patients with a longer duration of cancer diagnosis were more likely to have ADs (P = .003). Oncologist-reported barriers to GOC included unrealistic expectations from patients or family (25%) and decreased patient participation because of clinical conditions (15%). Most oncologists recalled having GOC discussions for patients with inpatient mortality, yet documentation of serious illness conversations remained suboptimal. Further studies are needed to examine barriers to GOC conversations and documentation during transitions of care and across health care settings.

The Association of Standardized Documentation of Serious Illness Conversations With Healthcare Utilization in Hospitalized Patients: A Propensity Score Matched Cohort Analysis.

Background: Serious Illness Conversations (SICs) conducted during hospitalization can lead to meaningful patient participation in the decision-making process affecting medical management. The aim of this study is to determine if standardized documentation of a SIC within an institutionally approved EHR module during hospitalization is associated with palliative care consultation, change in code status, hospice enrollment prior to discharge, and 90-day readmissions. Methods: We conducted retrospective analyses of hospital encounters of general medicine patients at a community teaching hospital affiliated with an academic medical center from October 2018 to August 2019. Encounters with standardized documentation of a SIC were identified and matched by propensity score to control encounters without a SIC in a ratio of 1:3. We used multivariable, paired logistic regression and Cox proportional-hazards modeling to assess key outcomes. Results: Of 6853 encounters (5143 patients), 59 (.86%) encounters (59 patients) had standardized documentation of a SIC, and 58 (.85%) were matched to 167 control encounters (167 patients). Encounters with standardized documentation of a SIC had greater odds of palliative care consultation (odds ratio [OR] 60.10, 95% confidence interval [CI] 12.45-290.08, P < .01), a documented code status change (OR 8.04, 95% CI 1.54-42.05, P = .01), and discharge with hospice services (OR 35.07, 95% CI 5.80-212.08, P < .01) compared to matched controls. There was no significant association with 90-day readmissions (adjusted hazard ratio [HR] .88, standard error [SE] .37, P = .73). Conclusions: Standardized documentation of a SIC during hospitalization is associated with palliative care consultation, change in code status, and hospice enrollment.

Core elements of serious illness conversations: an integrative systematic review

BackgroundAriadne Labs’ Serious Illness Care Program (SICP), inclusive of the Serious Illness Conversation Guide (SICG), has been adapted for use in a variety of settings and among diverse population groups....

Choosing Hospice is Not Giving Up

Choosing Hospice is Not Giving Up

Discrepancy in responses to the surprise question between hemodialysis nurses and physicians, with focus on patient clinical characteristics: A comparative study.

The surprise question (SQ) "Would I be surprised if this patient died within the next xx months" can be used by different professions to foresee the need of serious illness conversations in patients approaching end of life. However, little is known about the different perspectives of nurses and physicians in responses to the SQ and factors influencing their appraisals. The aim was to explore nurses' and physicians' responses to the SQ regarding patients on hemodialysis, and to investigate how these answers were associated with patient clinical characteristics. This comparative cross-sectional study included 361 patients for whom 112 nurses and 15 physicians responded to the SQ regarding 6 and 12 months. Patient characteristics, performance status, and comorbidities were obtained. Cohen's kappa was used to analyze the interrater agreement between nurses and physicians in their responses to the SQ and multivariable logistic regression was applied to reveal the independent association to patient clinical characteristics. Proportions of nurses and physicians responding to the SQ with "no, not surprised" was similar regarding 6 and 12 months. However, there was a substantial difference concerning which specific patient the nurses and physicians responded "no, not surprised", within 6 (κ = 0.366, p < 0.001, 95% CI = 0.288-0.474) and 12 months (κ = 0.379, p < 0.001, 95% CI = 0.281-0.477). There were also differences in the patient clinical characteristics associated with nurses' and physicians' responses to the SQ. Nurses and physicians have different perspectives in their appraisal when responding to the SQ for patients on hemodialysis. This may reinforce the need for communication and discussion between nurses and physicians to identify the need of serious illness conversations in patients approaching the end of life, in order to adapt hemodialysis care to patient preferences and needs.