Goals Of Care Decisions Research Articles

End-of-Life Experiences Within a Dementia Support Program During COVID-19: Context and Circumstances Surrounding Death During the Pandemic.

Background: Persons with dementia (PWD) and their caregivers are uniquely impacted by the COVID-19 pandemic, including higher risk of mortality for PWD. Objectives: To describe the context and circumstances of deaths of PWD within a dementia support program during the COVID-19 pandemic. Design: Retrospective data collection of PWD deaths between March 1, 2020 and February 28, 2021. Setting/Subjects: Decedents enrolled in Care Ecosystem, a multidisciplinary team model for dementia care at University of California San Francisco, Ochsner Health, and UCHealth. Measurements: Using mixed methods, we analyzed data using descriptive measures and team-based thematic analysis to understand the end-of-life (EOL) experience of PWD-caregiver dyads. Results: Twenty-nine PWD died across three sites. Almost half (45%) were between ages 70-79 and 12 (41%) were women. Eighteen (62%) died at a private residence; two died in the hospital. Hospice was involved for 22 (76%) patients. There were known causes of death for 15 (53%) patients. Only two deaths were directly related to COVID-19 infection. Social isolation was perceived to have a high or very high impact for 12 (41%) decedents. Four qualitative themes were identified: (1) isolation due to the pandemic, (2) changes in use of dementia supports and resources, (3) impact on goals of care decisions, and (4) communication challenges for EOL care coordination. Conclusion: Among PWD and caregivers enrolled in a dementia support program, the COVID-19 pandemic had direct and indirect influences on mortality and EOL experiences of PWD. Caregivers’ experiences of caring, decision making, and bereavement were also affected.

“Get the DNR”: residents’ perceptions of goals of care conversations before and after an e-learning module

BackgroundResidents frequently lead goals of care (GoC) conversations with patients and families to explore patient values and preferences and to establish patient-centered care plans. However, previous work has shown that the hidden curriculum may promote physician-driven agendas and poor communication in these discussions. We previously developed an online learning (e-learning) module that teaches a patient-centered approach to GoC conversations. We sought to explore residents’ experiences and how the module might counteract the impact of the hidden curriculum on residents’ perceptions and approaches to GoC conversations.MethodsEleven first-year internal medicine residents from the University of Toronto underwent semi-structured interviews before and after completing the module. Themes were identified using principles of constructivist grounded theory.ResultsPrior to module completion, residents described institutional and hierarchical pressures to “get the DNR” (Do-Not-Resuscitate), leading to physician-centered GoC conversations focused on code status, documentation, and efficiency. Tensions between formal and hidden curricula led to emotional dissonance and distress. However, after module completion, residents described new patient-centered conceptualizations and approaches to GoC conversations, feeling empowered to challenge physician-driven agendas. This shift was driven by greater alignment of the new approach with their internalized ethical values, greater tolerance of uncertainty and complexity in GoC decisions, and improved clinical encounters in practice.ConclusionAn e-learning module focused on teaching an evidence-based, patient-centered approach to GoC conversations appeared to promote a shift in residents’ perspectives and approaches that may indirectly mitigate the influence of the hidden curriculum, with the potential to improve quality of communication and care.

Goals of Care Discussions Over the Course of a Patient's End of Life Admission: A Retrospective Study.

As deaths in hospitals increase, clear discussions regarding resuscitation status and treatment limitations, referred to as goals of care (GOC), are vital. GOC may need revision as disease and patient priorities change over time. There is limited data about who is involved in GOC discussions, and how this changes as patients deteriorate in hospital. To review the timing and clinicians involved in GOC discussions for a cohort of patients who died in hospital. Retrospective observational audit of 80 consecutive end of life admissions between March 11th and April 9th, 2019. Of 80 patients, 75 (93.6%) had GOC recorded during their admission, about half for ward-based non-burdensome symptom management or end-of-life care. GOC were revised in 68.0% of cases. Medical staff involved in initial versus final GOC discussions included home team junior doctor (54.7% versus 72.5%), home team consultant (37.3% versus 56.9%) and ICU doctor (16.0% versus 21.6%). For initial versus final GOC decisions, patients were involved in 34.7% versus 31.4%, and family in 53.3% versus 86.3%. Dying was documented for 92.0% of patients and this was documented to have been communicated to the family and patient in 98.6% and 19.5% of cases respectively. As patients deteriorated, family and senior clinician involvement in GOC discussions increased, but patient involvement did not. Junior doctors were most heavily involved in discussions. We advocate for further GOC training and modeling to enhance junior doctors' confidence and competence in conducting and involving patients and families in GOC conversations.

Severe combined cardiac and neuromuscular toxicity from immune checkpoint blockade: an institutional case series

BackgroundImmune checkpoint inhibition is part of standard systemic management for many advanced malignancies. Toxicities from this treatment approach are unpredictable, though usually reversible with management per established guidelines. Some patients suffer major morbidity and treatment-related mortality from these agents in an unpredictable manner. Cardiac and neurologic complications are rare, but can result in serious clinical consequences.MethodsWe describe the presentation, management, and outcomes of eight sequential cases of combined cardiac and neurologic toxicities resulting in severe illness and demonstrating lack of rapid response to immunosuppression.ResultsOur cohort consisted of six males and two females with an average age of 73.5 years (61–89 years). There were four patients with melanoma, and one patient each with urothelial carcinoma, renal cell carcinoma, breast cancer, and non-small cell lung cancer. Four patients received combination immunotherapy and four patients received monotherapy. The median time to presentation from treatment initiation was 27 days (11–132 days). All patients had a cardiovascular and neurologic toxicity, and most had hepatitis and myositis. The cardiac signs and symptoms were the prominent initial features of the clinical presentation. Each patient was managed by a multidisciplinary team and received a range of immunosuppressive agents. All patients died as a consequence of the immune related adverse events.ConclusionsThe evaluation of patients with cardiac adverse events from immunotherapy, should include assessment of overlapping toxicities such as myasthenia gravis and myositis. Providers should be aware of the potential for an extended duration of disability and slow improvement for certain toxicities as these expectations may factor prominently in goals of care decisions.

Survey to evaluate quality of cancer patient care: A questionnaire based analysis in a tertiary hospital.

e18320 Background: As the burden of cancer is on the rise, there is a need to understand the logistics in caring for cancer patients. Internists and nurses are integral part of cancer care team, alongside oncologists. Our aim was to assess their knowledge, attitude and practice in order to identify areas of strength and limitation to help devise opportunities to enhance care. Methods: A close ended cross-sectional survey was conducted among internal medicine physicians, residents and nurses. We developed 36 questions broadly based on cancer-care and distributed them randomly. Additionally, subjects were asked to list factors limiting their ability to provide effective care. We semi quantitatively graded the depth of awareness amongst participants. A total of 95 health care providers were included in the final analysis. Results: Only 62% of participants were accurate in knowledge based questions. About 57% believed all cancer patients benefit from less aggressive treatment and considered chemotherapy side-effects to be the most common cause of hospitalization. Total of 94% reported effective care coordination by visiting nurses, primary care providers in outpatient settings decrease readmissions. Seventy percent thought a dedicated inpatient service run by Oncologists would be better for cancer patient care, with 96% preferring co-management. Around 80% felt they were better able to manage decompensated heart failure and fulminant liver disease than oncological emergencies like neutropenic fever. All the attendings (100%) were comfortable discussing new cancer diagnosis compared to 65% residents and 60% nurses. However 58% of them would like the health care proxy to be involved in all goals of care decisions, irrespective of patient’s capacity. Conclusions: Surprisingly, the baseline knowledge about cancer-care is suboptimal and there is a significant gap in expected versus real cancer-care delivery. Most commonly encountered factors hindering patient-care were lack of awareness of cancer illness trajectories and unclear goals of care with inter-provider disparities/gaps in understanding them. Initiatives such as targeted education, shared care plan and engaging patients at every step is crucial.

Effect of the Goals of Care Intervention for Advanced Dementia

ImportanceIn advanced dementia, goals of care decisions are challenging and medical care is often more intensive than desired.ObjectiveTo test a goals of care (GOC) decision aid intervention to improve quality of communication and palliative care for nursing home residents with advanced dementia.Design, Setting, and ParticipantsA single-blind cluster randomized clinical trial, including 302 residents with advanced dementia and their family decision makers in 22 nursing homes. InterventionsA GOC video decision aid plus a structured discussion with nursing home health care providers; attention control with an informational video and usual care planning.Main Outcomes and MeasuresPrimary outcomes at 3 months were quality of communication (QOC, questionnaire scored 0-10 with higher ratings indicating better quality), family report of concordance with clinicians on the primary goal of care (endorsing same goal as the “best goal to guide care and medical treatment,” and clinicians’ “top priority for care and medical treatment”), and treatment consistent with preferences (Advance Care Planning Problem score). Secondary outcomes at 9 months were family ratings of symptom management and care, palliative care domains in care plans, Medical Orders for Scope of Treatment (MOST) completion, and hospital transfers. Resident-family dyads were the primary unit of analysis, and all analyses used intention-to-treat assignment.ResultsResidents’ mean age was 86.5 years, 39 (12.9%) were African American, and 246 (81.5%) were women. With the GOC intervention, family decision makers reported better quality of communication (QOC, 6.0 vs 5.6; P = .05) and better end-of-life communication (QOC end-of-life subscale, 3.7 vs 3.0; P = .02). Goal concordance did not differ at 3 months, but family decision makers with the intervention reported greater concordance by 9 months or death (133 [88.4%] vs 108 [71.2%], P = .001). Family ratings of treatment consistent with preferences, symptom management, and quality of care did not differ. Residents in the intervention group had more palliative care content in treatment plans (5.6 vs 4.7, P = .02), MOST order sets (35% vs 16%, P = .05), and half as many hospital transfers (0.078 vs 0.163 per 90 person-days; RR, 0.47; 95% CI, 0.26-0.88). Survival at 9 months was unaffected (adjusted hazard ratio [aHR], 0.76; 95% CI, 0.54-1.08; P = .13).Conclusions and RelevanceThe GOC decision aid intervention is effective to improve end-of-life communication for nursing home residents with advanced dementia and enhance palliative care plans while reducing hospital transfers.Trial Registrationclinicaltrials.gov Identifier: NCT01565642

Patient and Caregiver Opinions of Motivational Interviewing Techniques In Role-Played Palliative Care Conversations: A Pilot Study

ContextAlthough many have examined the role of motivational interviewing (MI) in diverse health care encounters, no one has explored whether patients and caregivers facing serious illnesses identify specific MI techniques as helpful. ObjectivesThe aim of this pilot study was to describe how patients and caregivers perceived MI techniques in palliative care role-play encounters. MethodsAbout 21 patients and caregivers participated in a role-play encounter where we asked the participant to act out being ambivalent or reluctant regarding the goals of care decision. The participant met with either an MI-trained physician or a physician who was not trained in MI (usual care). After the simulated encounter, we conducted cognitive interviews (“think-aloud” protocol) asking participants to identify “helpful” or “unhelpful” things physicians said. Participants also completed a perceived empathy instrument as a fidelity test of the MI training of the physician. ResultsQualitative analyses revealed that participants independently identified the following helpful communication elements that are consistent with core MI techniques: reflection and validation of values, support of autonomy and flexibility, and open questions acting as catalysts for discussion. Participants rated the MI-trained physician slightly higher on the perceived empathy scale. ConclusionThis pilot study represents the first exploration of patient and caregiver perceptions of helpful techniques in palliative care conversations. Use of MI techniques shows promise for improving palliative care discussions.