Background: Clinicians at the bedside regularly encounter surprises or unexpected clinical developments that carry emotional, social, or moral overtones-especially when death is anticipated or when patients are particularly vulnerable. In such circumstances, clinicians may struggle to find practical clarity in making treatment plans that honor their fiduciary (literally, "entrusted") duty to uphold equitably the ethical principles of beneficence, nonmaleficence, patient autonomy, and justice.
Methods: We present the case of a patient who appeared to be actively dying and received an indwelling urinary catheter for the purpose of ensuring comfort. However, it led to an unintended reversal of renal failure and exacerbation of underlying psychiatric disease. This led to a meaningful change in the patient's prognosis. It also created pragmatic challenges to shared decision making, which required an intentional interdisciplinary approach to balancing beneficence and patient autonomy. Conclusion: Palliative Care offers a holistic clinical approach to complex suffering. Palliative care specialists develop advanced skill sets in prognosis estimation, nuanced communication issues, and patient-centered goal setting. As this case highlights, prognosis can shift dramatically in the perimortem period, even with small changes in care plans. This case presented several biomedical, social-cultural, and ethical challenges to the team. Lessons from the case are presented regarding: the role a specialist palliative team might play throughout all stages of serious illness; approaching prognostication as an iterative rather than solitary task; and utilizing an ethical framework to care planning when there are barriers to shared decision making.
Background: early identification of palliative patients is challenging. The Surprise Question (SQ1; Would I be surprised if this patient were to die within 12 months?) is widely used to identify palliative patients. However, its predictive value is low. Therefore, we added a second question (SQ2) to SQ1: ‘Would I be surprised if this patient is still alive after 12 months?’ We studied the accuracy of this double surprise question (DSQ) in a general practice.
Methods: We performed a prospective cohort study with retrospective medical record review in a general practice in the eastern part of the Netherlands. Two general practitioners (GPs) answered both questions for all 292 patients aged =75 years (mean age 84 years).
Primary outcome was 1-year death, secondary outcomes were aspects of palliative care.
Results: SQ1 was answered with ‘no‘ for 161/292 patients. Of these, SQ2 was answered with ‘yes’ in 22 patients. Within 12 months 26 patients died, of whom 24 had been identified with SQ1 (sensitivity: 92%, specificity: 49%). Ten of them were also identified with SQ2 (sensitivity: 42%, specificity: 91%). The latter group had more contacts with their GP and more palliative care aspects were discussed.
Conclusions: The DSQ appears a feasible and easy applicable screening tool in general practice. It is highly effective in predicting patients in high need for palliative care and using it helps to discriminate between patients with different life expectancies and palliative care needs. Further research is necessary to confirm the findings of this study.
Background: The surprise question (SQ), “Would I be surprised if this patient died within one year?”, is a simple instrument to identify patients with palliative care needs. The SQ-performance has not been evaluated in patients with advanced cancer visiting the emergency department (ED).
Objective: To evaluate SQ's test characteristics and predictive value in patients with advanced cancer visiting the ED.
Design: Observational cohort study.
Setting: Patients >18 years with advanced cancer in the palliative phase visiting the ED of an academic medical center.
Methods: Attending physicians answered the SQ (not surprised [NS] or surprised [S]) and estimated Eastern Cooperative Oncology Group (ECOG)-performance status. Disease, visit, and follow-up characteristics were retrospectively collected from charts. SQ's sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV), and Harrell's c-index were calculated. Prognostic values of SQ and other variables were assessed by using Cox proportional hazards models.
Results: Two-hundred-and-forty-five patients were included (203 NS [83%] and 42 S [17%]), median age 62 years, 48% male. Follow-up on overall survival was updated until February 2019. At ED entry, NS-patients had worse ECOG-performance and more symptoms. At study closure, 233 patients had died (95%). Median survival was three months for NS-patients (interquartile [IQ]-range: 1–8); nine months for S-patients (IQ-range: 3–28) (p < 0.0001). SQ-performance for one-year mortality: sensitivity 89%, specificity 40%, PPV 85%, NPV 50%, c-index 0.56, and hazard ratio 2.1 for approaching death. ECOG 3–4 predicted death in NS-patients; addition to the SQ improved c-index (0.65); sensitivity (40%), specificity (92%), PPV (95%), and NPV (29%).
Conclusions: At the ED, the SQ plus ECOG 3–4 helps identifying patients with advanced cancer and a limited life expectancy. Its use supports initiating appropriate care related to urgency of palliative care needs.
Background: Precision health initiatives for end-of-life planning require robust methods for identifying patient risk for decline and mortality. The Outcome and Assessment Information Set (OASIS) surprise question (SQ; M1034 Overall Status) is the primary tool for evaluating risks in homebound older adults. However, the OASIS-D, Released in 2019, eliminates this question. This study examines the prognostic ability of 12- and 24-month mortality risk reflected in the OASIS-SQ and develops an alternative approach for classifying mortality risk to support decision-making in the absence of the OASIS-SQ.
Design: Retrospective secondary data analysis.
Setting/Participants: A nationally representative sample of 69 097 OASIS-C assessments (2012) linked to the Master Beneficiary Summary file (2012 and 2013).
Measurements: Survival analysis, k-means clustering, and Cohen coefficient with Z test.
Results: The OASIS-SQ predicts mortality (35% at 12 and 45% at 24 months; P < .001). Cluster analysis identified 2 risk groups: OASIS activity of daily living “ADL total scores” >15 = (lower risk) and =15 = (higher risk) for 24-month mortality. Model agreement is weak for both cluster 1 and cluster 2, the OASIS-SQ = 0.20, 95% confidence interval (CI) = .19 to .21, and “alive/not alive” = .17, 95% CI = .16 to .18.
Conclusion: The OASIS-SQ and “ADL total score” are almost equally likely to predict 24-month mortality; therefore, it was reasonable to use the “ADL total score” as a substitute for the OASIS-SQ. Removal of the OASIS-SQ leaves home care providers with few clear options for risk screening resulting in missed opportunities to refer to palliative or hospice services.
BACKGROUND: Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed.
OBJECTIVE: To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care.
DESIGN: A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time.
RESULTS: A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD's physicians (25% in 2012 vs 45% in 2018; P = .027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD's prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 (P = .015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 (P = .39) felt that they were knowledgeable about PC.
CONCLUSIONS: Prognostic discussions between caregivers of PwD and the PwD's physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.
CONTEXT: Advanced breast cancer patients have low rates of survival that can be associated with symptom burden.
OBJECTIVES: This study seeks to characterize the effect of longitudinally-collected symptom scores on predicting time to death for advanced breast cancer patients.
METHODS: A cohort of 993 Stage IV breast cancer patients was constructed using linked population-level health administrative databases that captured longitudinally-collected symptom data using the Edmonton Symptom Assessment System. Data was captured on individual symptom scores (20,371 assessments) for pain, tiredness, drowsiness, nausea, appetite, dyspnea, depression, anxiety and wellbeing, as well as three summative scores of total symptom distress score (TSDS), physical symptom score, and psychological symptom score. A joint modelling approach was undertaken to simultaneously model repeated measures longitudinal data and time-to-event data.
RESULTS: Of patients who died in the study, 56.11% survived for a mean time of less than three years and had lower mean symptom scores for all symptoms except shortness of breath, in comparison to patients who lived for greater than three years. Symptom burden was predictive of patient time to death for all symptoms, with risk of death increasing with worsening symptom scores. For TSDS, age at diagnosis (0.009, p<0.05), chemotherapy (-0.63, p<0.001) and palliative care (3.15, p<0.001) were significant predictors of patient time to death.
CONCLUSIONS: Patients with advanced breast cancer experience chronic, ongoing low symptom burden which predicts patient time to death. Future research should examine the mechanisms by which patient characteristics, treatment, supportive and palliative care can have an impact on patient survival.
Background: Patient-reported medical status and treatment goal are measures of prognostic understanding with demonstrated relationships to important clinical and patient-reported outcomes in the general cancer population. Among older adults, relationships between these measures and other patient-reported (quality of life [QOL], symptoms, functional impairment) and clinical (hospitalization risk, survival) outcomes remains unclear.
Methods: We enrolled patients =70 with advanced gastrointestinal cancers, collecting patient-reported medical status (terminally ill vs not), treatment goal (curative vs non-curative), QOL (EORTC-Elderly Cancer Patients), symptoms (Edmonton Symptom Assessment System [ESAS]), and functional impairment (activities of daily living [ADLs]). We also obtained information about hospitalizations and survival. To explore relationships between patient-reported medical status, treatment goal, QOL, symptoms, functional impairment, hospitalizations, and survival, we used regression models adjusted for age, sex, and education.
Results: Of 103 patients, 49.5% reported terminally ill status and 64.0% a non-curative treatment goal. Terminally ill status was associated with worse QOL (EORTC illness burden: 53.59 vs 35.26, p = 0.001), higher symptom burden (ESAS: 28.15 vs 16.79, p = 0.002), more functional impairment (ADLs: 3.63 vs 5.24, p = 0.006), greater hospitalization risk (HR = 2.41, p = 0.020), and worse survival (HR = 1.93, p = 0.010). We did not find associations between patient-reported treatment goal and these outcomes.
Conclusions: In older adults with advanced cancer, report of terminally ill status was associated with other important patient-reported and clinical outcomes, suggesting disease severity may inform illness perceptions. We did not find similar associations for patient-reported treatment goal, indicating that questions related to medical status and treatment goal measure different constructs and more nuanced measures are needed.
Background: Urologists are often referred to manage the extrinsic malignant ureteral obstruction (MUO) caused by nonurological malignancies. Usually palliative urinary diversion (ureteral stent or nephrostomy) will be performed; however, in the cases of no symptom or poor prognosis, observation (OBS) without any intervention will be selected. There are few reports about outcome of the OBS policy for MUO.
Objective: To evaluate the outcome of palliative urinary diversion or OBS for MUO.
Design: We retrospectively reviewed the selection of treatment and the prognosis.
Setting/Subjects: A total of 151 cases were introduced to our department as MUO between April 2011 and December 2016.
Measurements: The patients were divided to immediate palliative urinary diversion (immediate-DIV) or OBS. The latter patients were subdivided to OBS followed by deferred palliative urinary diversion (deferred-DIV), and observation only (OBS-only).
Results: There was no significant difference between immediate-DIV and OBS about overall survival (OS) from the consultation. In OBS group, deferred-DIV did not prolong prognosis from the consultation more than OBS-only. In the same way, there was no significant difference between immediate-DIV and deferred-DIV in OS from the intervention. Unfavorable prognostic factors for OS were lack of anticancer treatment after consultation, symptoms of MUO, and gastrointestinal cancer. When we classified the patients by these factors, the group with three factors showed significantly poorer prognosis than the others.
Conclusion: Immediate-DIV or OBS did not influence the prognosis in the whole patients. Three prognostic factors that will be judged by urologists easily might be useful for the indication and timing of palliative urinary diversion.
Patients who suffer from an acute stroke often cannot make informed medical decisions and may not have advance directives. The rapidity of its onset often means that the burden of whether to pursue placement in a nursing home and/or life-prolonging loved ones. This Fast Fact reviews clinical factors and tools that could help in prognostication and medical decision making for stroke patients.
Background: Timely identification of people who are at risk of dying is an important first component of end-of-life care. Clinicians often fail to identify such patients, thus trigger tools have been developed to assist in this process. We aimed to evaluate the performance of a identification tool (based on the Gold Standards Framework Prognostic Indicator Guidance) to predict death at 12 months in a population of hospitalised patients in South Africa.
Methods: Patients admitted to the acute medical services in two public hospitals in Cape Town, South Africa were enrolled in a prospective observational study. Demographic data were collected from patients and patient notes. Patients were assessed within two days of admission by two trained clinicians who were not the primary care givers, using the identification tool. Outcome mortality data were obtained from patient folders, the hospital electronic patient management system and the Western Cape Provincial death registry which links a unique patient identification number with national death certificate records and system wide electronic records.
Results: 822 patients (median age of 52 years), admitted with a variety of medical conditions were assessed during their admission. 22% of the cohort were HIV-infected. 218 patients were identified using the screening tool as being in the last year of their lives. Mortality in this group was 56% at 12 months, compared with 7% for those not meeting any criteria. The specific indicator component of the tool performed best in predicting death in both HIV-infected and HIV-uninfected patients, with a sensitivity of 74% (68–81%), specificity of 85% (83–88%), a positive predictive value of 56% (49–63%) and a negative predictive value of 93% (91–95%). The hazard ratio of 12-month mortality for those identified vs not was 11.52 (7.87–16.9, p < 0.001).
Conclusions: The identification tool is suitable for use in hospitals in low-middle income country setting that have both a high communicable and non-communicable disease burden amongst young patients, the majority under age 60.
Background: Recognising dying is a key clinical skill for doctors, yet there is little training.
Aim: To assess the effectiveness of an online training resource designed to enhance medical students’ ability to recognise dying.
Design: online multicentre double-blind randomised controlled trial (NCT03360812). The training resource for the intervention group was developed from a group of expert palliative care doctors’ weightings of various signs/symptoms to recognise dying. The control group received no training.
Setting/participants: Participants were senior UK medical students. They reviewed 92 patient summaries and provided a probability of death within 72 hours (0% certain survival – 100% certain death) pre, post, and 2 weeks after the training. Primary outcome: (1) Mean Absolute Difference (MAD) score between participants’ and the experts’ scores, immediately post intervention. Secondary outcomes: (2) weight attributed to each factor, (3) learning effect and (4) level of expertise (Cochran–Weiss–Shanteau (CWS)).
Results: Out of 168 participants, 135 completed the trial (80%); 66 received the intervention (49%). After using the training resource, the intervention group had better agreement with the experts in their survival estimates (dMAD = -3.43, 95% CI -0.11 to -0.34, p = <0.001) and weighting of clinical factors. There was no learning effect of the MAD scores at the 2-week time point (dMAD = 1.50, 95% CI -0.87 to 3.86, p = 0.21). At the 2-week time point, the intervention group was statistically more expert in their decision-making versus controls (intervention CWS = 146.04 (SD 140.21), control CWS = 110.75 (SD 104.05); p = 0.01).
Conclusion: The online training resource proved effective in altering the decision-making of medical students to agree more with expert decision-making.
BACKGROUND: Given that a wide variation in tumor response rates and survival times suggests heterogeneity among the patients with advanced pancreatic cancer (APC) who underwent second-line (L2) chemotherapy, it is a challenge in clinical practice to identify patients who will receive the most benefit from L2 treatment.
METHODS: We selected 183 APC patients who received L2 palliative chemotherapy between 2010 and 2016 from a medical center as the development cohort. A Cox proportional hazard model was used to identify the prognostic factors and construct the nomogram. An independent cohort of 166 patients from three other hospitals was selected for external validation.
RESULTS: The nomogram was based on eight independent prognostic factors from the multivariate Cox model: sex, Eastern Cooperative Oncology Group performance status, reason for first-line (L1) treatment discontinuation, duration of L1 treatment, neutrophil-to-lymphocyte ratio, tumor stage, body mass index, and serum CA19-9 levels at the beginning of L2 treatment. The model exhibited good discrimination ability, with a C-index of 0.733 (95% CI, 0.681-0.785) and 0.724 (95% CI, 0.661-0.787) in the development and validation cohorts, respectively. The calibration plots of the development and validation cohorts showed optimal agreement between model prediction and actual observation in predicting survival probability at 6 months, 1 year, and 2 years.
CONCLUSIONS: This study developed and externally validated a prognostic model that accurately predicts the survival outcome of APC patients prior to L2 palliative chemotherapy, which could assist in clinical decision making, counselling for treatment, and most importantly, prognostic stratification of patients.
This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.
Whether because of a cultural pattern or personal preference, palliative care clinicians encounter persons approaching the end of life who wish to limit or forego prognostic information relating to their situation. This scenario has received attention in a recent motion picture as well as a newly available advance directive modification-the Prognosis Declaration form. The ordinary expectation for end-of-life shared decision-making with a capable person is clinician disclosure of the best effort at prognostic assessment. The optimal match between the expressed values, goals, and preferences of the person with available clinician expertise is hopefully achieved. For the clinician, a person's choice to modify information disclosure and participation in shared decision-making represents a significant challenge of balancing key ethical principles of intervention with tolerance and compassion for these different preferences. Attention to communication strategies that elicit and appropriately reassess individual information and decision-making wishes, flexibility in information disclosure patterns with capable persons and their representatives, and recognition that a respect for autonomy includes the choice to opt out can approach this challenge while providing compassionate and ethical end-of-life care.
Background: Surrogate communication with providers about prognosis in the setting of acute critical illness can impact both patient treatment decisions and surrogate outcomes.
Objectives: To examine surrogate decision maker perspectives on provider prognostic communication after intracerebral hemorrhage (ICH).
Design: Semistructured interviews were conducted and analyzed qualitatively for key themes.
Setting/subjects: Surrogate decision makers for individuals admitted with ICH were enrolled from five acute care hospitals.
Results: Fifty-two surrogates participated (mean age = 54, 60% women, 58% non-Hispanic white, 13% African American, 21% Hispanic). Patient status at interview was hospitalized (17%), in rehabilitation/nursing facility (37%), deceased (38%), hospice (4%), or home (6%). Nineteen percent of surrogates reported receiving discordant prognoses, leading to distress or frustration in eight cases (15%) and a change in decision for potentially life-saving brain surgery in three cases (6%). Surrogates were surprised or confused by providers' use of varied terminology for the diagnosis (17%) (e.g., "stroke" vs. "brain hemorrhage" or "brain bleed") and some interpreted "stroke" as having a more negative connotation. Surrogates reported that physicians expressed uncertainty in prognosis in 37%; with physician certainty in 56%. Surrogate reactions to uncertainty were mixed, with some surrogates expressing a negative emotional response (e.g., anxiety) and others reporting understanding or acceptance of uncertainty.
Conclusions: Current practice of prognostic communication in acute critical illness has many gaps, leading to distress for surrogates and variability in critical treatment decisions. Further work is needed to limit surrogate distress and improve the quality of treatment decisions.
BACKGROUND/AIMS: Gastroenteropancreatic neuroendocrine tumors are rarely seen and have heterogeneous clinical outcomes. Mostly half of the patients had metastatic disease at presentation. Palliative resection of primary site in metastatic disease is still controversial. The aim of this study was to find out the influence of resection of primary tumor site on progression-free survival and overall survival in metastatic non-functioning gastroenteropancreatic neuroendocrine tumors. The secondary end point is to determine the prognostic factors influencing the survivals.
MATERIALS AND METHODS: This study was conducted at a single medical oncology center, Antalya Education and Research Hospital. Patients who had non-functioning metastatic gastroenteropancreatic neuroendocrine tumors with primary site resected or unresected were compared retrospectively. Resection of metastases was excluded.
RESULTS: Fifty-three patients were included in the study and 29 patients had primary tumor resection. The primary site resected group had favorable outcomes with the overall survival (median unreached) compared to the median overall survival of 30 months in the unresected group (p=0.001). Median progression-free survival was also better in the primary site resected group than the unresected group (60 months vs. 14 months, respectively) (p=0.013). In multivariate analysis, unresected primary site and high-grade tumors were found to be independent prognostic factors on low survivals (Hazard ratio (HR): 4.6; 95% CI: 1.21-17.47 and HR: 10.1; 95% CI: 1.15-88.84, respectively). Age (p=0.131), gender (p=0.051), chromogranin A level (p=0.104), Ki-67 index (p=0.550), tumor size (p=0.623), and primary tumor area (p=0.154) did not influence the overall survival.
CONCLUSION: Gastroenteropancreatic neuroendocrine tumors with primary site resected had improved survivals when compared to the unresected group.
Background: As patients' accurate understanding of their prognosis is essential for informed end-of-life planning, identifying associated factors is important.
Objective: We examine if receiving palliative chemotherapy or radiation, and the perception of those treatments as curative or noncurative, is associated with prognostic understanding.
Design: Cross-sectional analyses from a multisite, observational study.
Setting/Subjects: Patients with advanced cancers refractory to at least one chemotherapy regimen (N = 334).
Measurements: In structured interviews, patients reported whether they were receiving chemotherapy or radiation, and whether its intent was curative or not. Their responses were categorized into three groups: patients not receiving chemotherapy/radiation (no cancer treatment group); patients receiving chemotherapy/radiation and misperceiving it as curative (treatment misperception group); and patients receiving chemotherapy/radiation and accurately perceiving it as noncurative (accurate treatment perception group). Patients also reported on various aspects of their prognostic understanding (e.g., life expectancy).
Results: Eighty-six percent of the sample was receiving chemotherapy or radiation; of those, 16.7% reported the purpose of treatment to be curative. The no-treatment group had higher prognostic understanding scores compared with the treatment misperception group (adjusted odds ratio [AOR] = 5.00, p < 0.001). However, the accurate treatment perception group had the highest prognostic understanding scores in comparison to the no-treatment group (AOR = 2.04, p < 0.05) and the treatment misperception group (AOR = 10.19, p < 0.001).
Conclusions: Depending on patient perceptions of curative intent, receipt of palliative chemotherapy or radiation is associated with better or worse prognostic understanding. Research should examine if enhancing patients' understanding of treatment intent can improve accurate prognostic expectations.
L’objectif de l’étude était de comprendre les arguments utilisés pour prendre une décision de fin de vie en réanimation néonatale. L’étude était une étude qualitative par entretiens individuels semi dirigés avec analyse thématique. Les composantes entrant dans les discussions sont nombreuses. On note parfois une confusion dans l’intentionnalité. Les décisions prises lors des fins de vie en réanimation semblent souvent difficiles surtout dans les tableaux cliniques en demi-teinte.
Background: Prognostication is an essential component of palliative care for patients with advanced cancer but also poses challenges. Little is known about physicians’ perspectives on prognostication and prognostic tools used in palliative care practice in Eastern countries.
Objectives: To explore Korean physicians’ perspectives and experiences with prognostication in their palliative care practices.
Methods: Semi-structured interviews were conducted in Korea in 11 palliative care physicians. A constant comparative and grounded theory approach was used to derive themes from interview transcripts.
Results: Participants on average had 6.4 (SD = 4.5, range 0.5-15) years of hospice and palliative care experience. We identified 4 main themes about prognostication: (1) the importance of prognostication (to help patients and their families prepare for death, to determine the appropriate time of transition to hospice care, to facilitate appropriate decision making, and to facilitate communication with patients and their families); (2) difficulties of prognostication (discomfort estimating the exact date of death); (3) basis of prognostication (clinical prediction of survival as well as prognostic scores); and (4) areas for further research (need for a simpler scoring system or parameters to predict survival with greater certainty).
Conclusion: Palliative care physicians in Korea reported similar perceptions about the role and challenges inherent in prognostication compared to clinicians in Western cultures. However, they emphasize the need to predict final days to keep families with dying patients, reflecting family-centered aspects of Asian culture. They reported frustrations with inaccurate prognostication schemas and called for the development of simpler, more accurate predictors as a focus of future research.
Background: Although blood cancers are accompanied by a high level of prognostic uncertainty, little is known about when and how hematologic oncologists discuss prognosis.
Objectives: Characterize reported practices and predictors of prognostic discussions for a cohort of hematologic oncologists.
Design: Cross-sectional mailed survey in 2015.
etting/Subjects: U.S.-based hematologic oncologists providing clinical care for adult patients with blood cancers.
Measurements: We conducted univariable and multivariable analyses assessing the association of clinician characteristics with reported frequency of initiation of prognostic discussions, type of terminology used, and whether prognosis is readdressed.
Results: We received 349 surveys (response rate = 57.3%). The majority of respondents (60.3%) reported conducting prognostic discussions with “most” (>95%) of their patients. More than half (56.8%) preferred general/qualitative rather than specific/numeric terms when discussing prognosis. Although 91.3% reported that they typically first initiate prognostic discussions at diagnosis, 17.7% reported routinely never readdressing prognosis or waiting until death is imminent to revisit the topic. Hematologic oncologists with =15 years since medical school graduation (odds ratio [OR] 0.51; confidence interval (95% CI) 0.30–0.88) and those who considered prognostic uncertainty a barrier to quality end-of-life care (OR 0.57; 95% CI 0.35–0.90) had significantly lower odds of discussing prognosis with “most” patients.
onclusions: Although the majority of hematologic oncologists reported discussing prognosis with their patients, most prefer general/qualitative terms. Moreover, even though prognosis evolves during the disease course, nearly one in five reported never readdressing prognosis or only doing so near death. These findings suggest the need for structured interventions to improve prognostic communication for patients with blood cancers.