Perceived Barriers to Goals of Care Discussions With Patients With Advanced Cancer and Their Families in the Ambulatory Setting

2018 ◽  
Vol 33 (3) ◽  
pp. 125-142 ◽  
Author(s):  
Josee-Lyne Ethier ◽  
Thivaher Paramsothy ◽  
John J. You ◽  
Robert Fowler ◽  
Sonal Gandhi

Background: Earlier goals of care (GOC) discussions in patients with advanced cancer are associated with less aggressive end-of-life care including decreased use of medical technologies. Unfortunately, conversations often occur late in the disease trajectory when patients are acutely unwell. Here, we evaluate practitioner perspectives of patient, family, physician, and external barriers to early GOC discussions in the ambulatory oncology setting. Methods: A previously published survey to assess barriers to GOC discussions among clinicians on inpatient medical wards was modified for the ambulatory oncology setting and distributed to oncologists from 12 centers in Ontario, Canada. Physicians were asked to rank the importance of various barriers to having GOC discussions (1 = extremely unimportant to 7 = extremely important). Results: Questionnaires were completed by 30 (24%) of 127 physicians. Respondents perceived patient- and family-related factors as the most important barriers to GOC discussions. Of these, patient difficulty accepting prognosis or desire for aggressive treatment were perceived as most important. Patients’ inflated expectation of treatment benefit was also considered an important barrier to discontinuing active cancer-directed therapy. While physician barriers were ranked lower than patient-related factors, clinicians’ self-identified difficulty estimating prognosis and uncertainty regarding treatment benefits were also considered important. Patient’s refusal for referral was the most highly rated barrier to early palliative care referral. Most respondents were nonetheless very or extremely willing to initiate (90%) or lead (87%) GOC discussions. Conclusion: Oncologists ranked patient- and family-related factors as the most important barriers to GOC discussions, while clinicians’ self-identified difficulty estimating prognosis and uncertainty regarding treatment benefits were also considered important. Further work is required to assess patient preferences and perceptions and develop targeted interventions.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 15-15
Author(s):  
Josee-Lyne Ethier ◽  
Thivaher Paramsothy ◽  
Sonal Gandhi

15 Background: Early documentation of end-of-life (EOL) preferences in patients with advanced cancer is associated with less aggressive EOL care, however, several barriers to having these discussions exist. Evaluating practitioner-level barriers in the ambulatory oncology setting by adapting an existing survey from the critical care and internal medicine contexts was deemed important. Methods: The previously published “DECIDE” survey was modified to the ambulatory oncology setting and pilot tested. Surveys were then distributed to oncologists in Ontario, Canada via paper and secure online methods. The survey asked physicians to rank on a numerical scale the importance of various barriers to having EOL discussions with patients and their families. Trends were established using descriptive statistics. Analysis by respondent demographic was not completed due to small numbers. Results: A total of 30 out of 79 participants responded to the survey, for a response rate of 38%. Respondents generally ranked patient and family related barriers highest. For instance, patient difficulty accepting prognosis or indicating a desire to be “aggressive” was rated by 69% of respondents as an extremely or very important barrier to initiating EOL discussions. Sixty-three percent of respondents also rated patients’ inflated expectations of further cancer treatment benefit as a very or extremely important barrier to discontinuing active cancer-directed therapies. Patient or family refusal for referral was rated by 47% of respondents as a very or extremely important barrier to early palliative care referral. The majority ( > 85%) of respondents were very or extremely willing to initiate, lead, and finalize the EOL discussions with patients and their families. Conclusions: Oncologists in this study ranked patient and family related barriers to having EOL discussions above all other barriers. Further work is required to better understand such perceived barriers, and compare them to patient preferences and perceptions about EOL planning and cancer care at the end of life. Targeted interventions to address these barriers could then be developed.


2018 ◽  
Vol 14 (9) ◽  
pp. e557-e565 ◽  
Author(s):  
Safiya Karim ◽  
Ingrid Harle ◽  
Jennifer O’Donnell ◽  
Shirley Li ◽  
Christopher M. Booth

Purpose: Guidelines recommend that oncologists discuss goals of care (GOC) with patients who have advanced cancer and that these patients be referred for early palliative care (PC). An audit of practice between 2010 and 2015 at the Cancer Centre of Southeastern Ontario suggested that these rates were suboptimal. We sought to improve the rate of documentation of GOC and referral to PC through the implementation of a quality improvement (QI) initiative. Methods: Patients receiving palliative systemic treatment of lung, pancreatic, colorectal, and breast cancer were identified via electronic pharmacy records and the electronic patient care system. Using the Define, Measure, Analyze, Improve, Control QI methodology, we drafted a guideline for GOC documentation and PC referral and designed a standardized documentation system. E-mail reminders were sent to physicians and a QI scorecard was displayed to document overall and individual physician rates of GOC documentation. Data were analyzed monthly and presented on statistical process control P charts. Results: Between May 2016 and November 2017, a total of 303 unique patients were identified (52%, 21%, 17%, and 10% with lung, breast, colorectal, and pancreatic cancer, respectively). GOC documentation increased significantly over the study period (baseline, 0%; passive phase, 3%; active phase, 31%); this increase was likely because of our intervention. PC referral rates also increased over the study period (baseline, 36%; passive phase, 35%; active phase 48%). We did not identify any patient, physician, or disease factors that were associated with GOC discussion or referral to PC. Conclusion: Our QI initiative was successful in improving rates of GOC documentation in patients with advanced cancer.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e19199-e19199
Author(s):  
Sandhya Maradana ◽  
Yugandhara Kate ◽  
Deepali Pandey ◽  
Masood Pasha Syed ◽  
Pruthvi Raj Velamala ◽  
...  

e19199 Background: Earlier discussion of end-of-life (EOL) preferences in patients with advanced cancer is associated with less aggressive EOL care. Most terminally-ill patients have not discussed their goals of care (GOC) with their healthcare providers before becoming acutely ill. Identifying various barriers in the outpatient setting might help improve GOC discussion and EOL experience for patients with advanced cancer. Methods: This cross sectional survey was designed after a thorough literature review and distributed to internal medicine residents, oncologists and oncology nurses involved in patient care in an outpatient cancer center at a community hospital. Barriers to GOC discussions and early palliative care (PC) referral were assessed on a 7-point Likert scale (1 = extremely unimportant; 7 = extremely important). Most important barrier was defined by people ranking it as very important or extremely important (6 or 7). A total of 33 health care providers were included in the final analysis. Trends were reported using descriptive statistics. Results: Patient/family related barriers were ranked the highest overall. 88% of respondents perceived patient’s difficulty in accepting prognosis as most important, followed by lack of agreement among family members (82%) and patient wanting to be 'aggressive' (82%). Among groups, 100% (6 of 6) oncologists perceived patient wanting to be ‘aggressive’ as the most important barrier, whereas disagreement among family members and patient’s difficulty in accepting poor prognosis was perceived as most important by 88% (7 of 8) nurses and 84% (16 of 19) residents respectively. Nurses also ranked patient's difficulty in understanding limitations of life sustaining treatments high. 67% of respondents, especially nurses and residents, perceived lack of training to have GOC conversations as the most important health care provider related barrier. Patient’s refusal for PC services was rated as the most important barrier for early PC referral by 61% of respondents, however, oncologists (100%) ranked lack of outpatient PC services the highest. Conclusions: These results emphasize the need for better resources to improve communication between health care providers and cancer patients in an outpatient setting. Initiatives such as formal training and targeted education in communication about GOC to health care providers can be instrumental in addressing these barriers. Integration of outpatient palliative care services into community-based oncology can be beneficial.


2016 ◽  
Vol 07 (01) ◽  
pp. 20-25
Author(s):  
I. Pabinger ◽  
C. Ay

SummaryVenous thromboembolism (VTE) in patients with cancer is associated with an increased morbidity and mortality, and its prevention is of major clinical importance. However, the VTE rates in the cancer population vary between 0.5% - 20%, depending on cancer-, treatment- and patient-related factors. The most important contributors to VTE risk are the tumor entity, stage and certain anticancer treatments. Cancer surgery represents a strong risk factor for VTE, and medical oncology patients are at increased risk of developing VTE, especially when receiving chemotherapy or immunomodulatory drugs. Also biomarkers have been investigated for their usefulness to predict risk of VTE (e.g. elevated leukocyte and platelet counts, soluble P-selectin, D-dimer, etc.). In order to identify cancer patients at high risk of VTE and to improve risk stratification, risk assessment models have been developed, which contain both clinical parameters and biomarkers. While primary thromboprophylaxis with lowmolecular- weight-heparin (LMWH) is recommended postoperatively for a period of up to 4 weeks after major cancer surgery, the evidence is less clear for medical oncology patients. Thromboprophylaxis in hospitalized medical oncology patients is advocated, and is based on results of randomized controlled trials which evaluated the efficacy and safety of LMWH for prevention of VTE in hospitalized medically ill patients. In recent trials the benefit of primary thromboprophylaxis in cancer patients receiving chemotherapy in the ambulatory setting has been investigated. However, at the present stage primary thromboprophylaxis for prevention of VTE in these patients is still a matter of debate and cannot be recommended for all cancer outpatients.


Author(s):  
Abigail Sy Chan ◽  
Amit Rout ◽  
Christopher R. D.’Adamo ◽  
Irina Lev ◽  
Amy Yu ◽  
...  

Background: Timely identification of palliative care needs can reduce hospitalizations and improve quality of life. The Supportive & Palliative Care Indicators Tool (SPICT) identifies patients with advanced medical conditions who may need special care planning. The Rothman Index (RI) detects patients at high risk of acutely decompensating in the inpatient setting. SPICT and RI among cancer patients were utilized in this study to evaluate their potential roles in palliative care referrals. Methods: Advanced cancer patients admitted to an institution in Baltimore, Maryland in 2019 were retrospectively reviewed. Patient demographics, length of hospital stay (LOS), palliative care referrals, RI scores, and SPICT scores were obtained. Patients were divided into SPICT positive or negative and RI > 60 or RI < 60.Unpaired t-tests and chi-square tests were utilized to determine the associations between SPICT and RI and early palliative care needs and mortality. Results: 227 patients were included, with a mean age of 68 years, 63% Black, 59% female, with the majority having lung and GI malignancies. Sixty percent were SPICT +, 21% had RI < 60. SPICT + patients were more likely to have RI < 60 (p = 0.001). SPICT + and RI < 60 patients were more likely to have longer LOS, change in code status, more palliative/hospice referrals, and increased mortality (p <0.05). Conclusions: SPICT and RI are valuable tools in predicting mortality and palliative/hospice care referrals. These can also be utilized to initiate early palliative and goals of care discussions in patients with advanced cancer.


2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Stephen D. Silberstein ◽  
Joshua M. Cohen ◽  
Ronghua Yang ◽  
Sanjay K. Gandhi ◽  
Evelyn Du ◽  
...  

Abstract Background Monoclonal antibodies targeting the calcitonin gene-related peptide (CGRP) pathway, including the fully humanized monoclonal antibody (IgG2Δa) fremanezumab, have demonstrated safety and efficacy for migraine prevention. Clinical trials include responders and nonresponders; efficacy outcomes describe mean values across both groups and thus provide little insight into the clinical benefit in responders. Clinicians and their patients want to understand the extent of clinical improvement in patients who respond. This post hoc analysis of fremanezumab treatment attempts to answer this question: what is the benefit in subjects who responded to treatment during the two, phase 3 HALO clinical trials? Methods We included subjects with episodic migraine (EM) or chronic migraine (CM) who received fremanezumab quarterly (675 mg/placebo/placebo) or monthly (EM: 225 mg/225 mg/225 mg; CM: 675 mg/225 mg/225 mg) during the 12-week randomized, double-blind, placebo-controlled HALO EM and HALO CM clinical trials. EM and CM responders were defined as participants with a reduction of ≥ 2 or ≥ 4 monthly migraine days, respectively. Treatment benefits evaluated included reductions in monthly migraine days, acute headache medication use, and headache-related disability, and changes in health-related quality of life (HRQoL). Results Overall, 857 participants from the HALO trials were identified as responders (EM: 429 [73.8%]; CM: 428 [56.7%]). Reductions in the monthly average number of migraine days were greater among EM (quarterly: 5.4 days; monthly: 5.5 days) and CM (quarterly: 8.7 days; monthly: 9.1 days) responders compared with the overall population. The proportion of participants achieving ≥ 50% reduction in the average monthly number of migraine days was also greater in responders (EM: quarterly, 59.8%; monthly, 63.7%; CM: quarterly, 52.8%; monthly, 59.0%) than in the overall population. Greater reductions in the average number of days of acute headache medication use, greater reductions in headache-related disability scores, and larger improvements in HRQoL were observed among EM and CM responders compared with the overall populations. Conclusions Fremanezumab responders achieved clinically meaningful improvements in all outcomes. The magnitude of improvements with fremanezumab across efficacy outcomes was far greater in responders than in the overall trial population, providing insight into expected treatment benefits in participants who respond to fremanezumab in clinical practice. Trial registration ClinicalTrials.gov identifiers: NCT02629861 (HALO EM) and NCT02621931 (HALO CM).


2021 ◽  
pp. 135910532110256
Author(s):  
Eric A Finkelstein ◽  
Yin Bun Cheung ◽  
Maurice E Schweitzer ◽  
Lai Heng Lee ◽  
Ravindran Kanesvaran ◽  
...  

Many patients with advanced illness have unrealistic survival expectations, largely due to cognitive biases. Studies suggests that when people are motivated to be accurate, they are less prone to succumb to these biases. Using a randomized survey design, we test whether offering advanced cancer patients ( n = 200) incentives to estimate their prognosis improves accuracy. We also test whether presenting treatment benefits in terms of a loss (mortality) rather than a gain (survival) reduces willingness to take up a hypothetical treatment. Results are not consistent with the proposed hypotheses for either accuracy incentives or framing effects.


Author(s):  
Mona L. Martin ◽  
Julia Correll ◽  
Andrew Walding ◽  
Anna Rydén

Abstract Purpose To describe symptoms and side effects experienced by patients with advanced non-small cell lung cancer (NSCLC), assess how patients allocate sensations (i.e. symptoms or side effects) to either the disease or its treatment, and evaluate how patients balance side effects with treatment benefits. Methods Qualitative sub-studies were conducted as part of two clinical trials in patients treated for advanced NSCLC (AURA [NCT01802632]; ARCTIC [NCT02352948]). Results Interviews were conducted with 23 patients and 19 patients in the AURA and ARCTIC sub-studies, respectively. The most commonly experienced symptoms/side effects were respiratory (81% of patients), digestive (76%), pain and discomfort (76%), energy-related (71%), and sensory (62%). Patients identified a sensation as a treatment side effect if they had not experienced it before, if there was a temporal link between the sensation and receipt of treatment, and/or if their doctors consistently told or asked them about it in relation to side effects. Themes that emerged when patients talked about their cancer treatment and its side effects related to the serious nature of their advanced disease and their treatment expectations. Patients focused on treatment benefits, wanting a better quality of life, being hopeful, not really having a choice, and not thinking about side effects. Conclusions In these two qualitative sub-studies, patients with advanced NSCLC valued the benefits of their treatment regardless of side effects that they experienced. Patients weighed their options against the seriousness of their disease and expressed their willingness to tolerate their side effects in return for receiving continued treatment benefits.


2016 ◽  
Vol 28 (3) ◽  
pp. 209-214 ◽  
Author(s):  
W. Raskin ◽  
I. Harle ◽  
W.M. Hopman ◽  
C.M. Booth

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