Strand, Jacob J.

Introduction: Although national guidelines call on physicians to conduct regular conversations about end-of-life (EOL) care and planning with patients with heart failure (HF), research suggests that physicians often avoid these discussions. The aim of this study was to evaluate whether patients hospitalized with acute decompensated HF (ADHF) reported ever discussing their preferences for EOL care with their physicians. Methods: Between January 2014 and January 2016, Southeastern Minnesota residents hospitalized with ADHF at Mayo Clinic hospitals in Rochester, MN were prospectively recruited into an observational cohort study that included the administration of face-to-face questionnaires. Patients were asked questions regarding details of EOL discussions with their physicians, their preference for prognostic information, whether they had an advanced directive, attitudes about dying and hospice, and familiarity with palliative care and hospice. Results: Among 400 patients (mean age 77.7 years, 46% female, 48% preserved ejection fraction), only 68 (17.5%) reported previously discussing EOL wishes with their physician. Most patients (62.2%) indicated a preference to discuss their prognosis with their physician. Patients reporting prior EOL discussions were more often anemic (82.6% vs. 68.9%, p=0.022), hyponatremic (28.6% vs. 12.5%, p=0.002), and married (68.1% vs. 51.5%, p=0.012). They more often recognized the term ‘hospice’ (95.7% vs. 87.3%, p=0.045), had more favorable attitudes of dying and hospice (p=0.030), and more often had an advanced directive (83.6% vs. 67.7%, p=0.010). No other differences in demographics, comorbidity burden, HF characteristics, or in-hospital and 30-day outcomes were observed. Conclusions: Only 17.5% of patients hospitalized with ADHF reported previously discussing their preferences for EOL care with their physician. Patients reporting EOL discussions were more knowledgeable about EOL options and more likely to have completed advance care planning documents. Despite increasing recognition of the importance of these conversations, they are still occurring infrequently, and represent an important modifiable gap in the optimal longitudinal care of patients with HF.

Background: Music therapy (MT) offers benefits of improved symptom relief and quality of life at the end of life, but its impact on hospice patients and caregivers needs more research. Objective: To assess the impact of MT intervention on symptom burden and well-being of hospice patients and caregivers. Methods: A total of 18 hospice patients, selected based on scores ≥4 on the revised Edmonton Symptom Assessment System (ESAS-r) items on pain, depression, anxiety, or well-being, participated in MT sessions provided by a board-certified music therapist. Over a period of 2-3 weeks, 3-4 MT sessions were conducted for each. Patient Quality of life (QOL) was assessed using the Linear Analogue Self-Assessment (LASA). Depression and anxiety were measured with the Patient Health Questionnaire-4 (PHQ-4). For the 7 caregivers enrolled, stress levels were measured using the Pearlin role overload measure and LASA. Results: Patients reported a reduction in symptom severity and emotional distress and an increase in QOL. All patients endorsed satisfaction with music therapy, describing it as particularly beneficial for stress relief, relaxation, spiritual support, emotional support, and well-being. Scores on overall QOL and stress were worse for caregivers. Conclusion: This study provides evidence that MT reduces symptom burden and enhances the quality of life for hospice patients. Hospice patients and their caregivers endorsed satisfaction with MT. Given the benefits observed, integrating MT into hospice care regimens could potentially improve patient and caregiver outcomes. Larger studies should be conducted to better assess the impact of MT in this population.

Early integrated palliative care (EIPC) significantly improves clinical outcomes for patients with advanced cancer. Telehealth may be a useful tool to deliver EIPC sustainably and equitably. Palliative care clinicians completed a survey regarding their perceptions of the barriers, facilitators, and benefits of using telehealth video visits for delivering EIPC for patients with advanced lung cancer. Forty-eight clinicians across 22 cancer centers completed the survey between May and July 2022. Most (91.7%) agreed that telehealth increases access to EIPC and simplifies the process for patients to receive EIPC (79.2%). Clinicians noted that the elderly, those in rural areas, and those with less-resourced backgrounds have greater difficulty using telehealth. Perceived barriers were largely patient-based factors, including technological literacy, internet and device availability, and patient preferences. Clinicians agreed that several organizational factors facilitated telehealth EIPC delivery, including technological infrastructure (85.4%), training (83.3%), and support from study coordinators (81.3%). Other barriers included systems-based factors, such as insurance reimbursement and out-of-state coverage restrictions. Patient-, organization-, and systems-based factors are all important to providing and improving access to telehealth EIPC services. Further research is needed to investigate the efficacy of telehealth EIPC and how policies and interventions may improve access to and dissemination of this care modality.

Background: Heart failure (HF) is a clinical syndrome with an overall poor prognosis, but the clinical trajectory is often unpredictable in individuals. There has been an impetus to promote iterative patient-provider discussions regarding preferences for end of life (EOL) care and advanced care planning. However, very little is known regarding provider preferences or their personal confidence addressing EOL care with their patients with HF. To address these gaps in knowledge, we surveyed clinicians at three practice sites in a large integrated health system. Methods: Physicians, nurse practitioners (NP), and physician assistants (PA) at Mayo Clinic (Rochester, Minnesota) and its surrounding health system were asked to participate in an electronic survey in October 2013. Clinicians surveyed included tertiary care HF specialists (Tertiary Care Cardiology), cardiologists and NP/PAs practicing in a community setting (Community Cardiology), and primary care clinicians (Primary Care). Results: A total of 95 clinicians completed the survey (52.5% response rate), including 50 physicians and 45 NP/PAs. Clinicians reported discussing prognosis and EOL wishes when their patient’s health status was worsening, but only 12% reported annual discussions as advocated by the American Heart Association. In total 52% of providers reported one or more reasons that they hesitate to discuss EOL care with their patients, including provider discomfort (11%), perception of patient (21%) or family (12%) unreadiness to have the discussion, fear of destroying hope (9%), or a lack of time (8%). Tertiary Care (63%) and Community Cardiology (58%) clinicians were more likely to attribute responsibility for having EOL discussions to the HF cardiologist, while 66% of Primary Care providers felt it was their responsibility. Tertiary and Community Cardiology clinicians were more likely to have referred patients to Palliative Medicine within the last year than Primary Care (89% vs. 21%, p<0.001). Overall, 30% of those surveyed reported low or very low confidence levels in initiating prognosis or EOL discussions, enrolling patients in hospice, or providing EOL care, with lower confidence among those with fewer years of clinical experience. The majority of clinicians expressed a high level of interest in further skills acquisition on these topics. Conclusion: There is tremendous variability in the way that clinicians view and approach advanced care discussions with their patients with HF; varying provider perception and lack of provider confidence may contribute. Despite this variability, most clinicians are interested in further development and skills acquisition. Addressing the learning needs of providers is an important next step toward enhancing the EOL care of patients with HF.

Background Goals of care (GOC) conversations in the emergency department (ED) are often a brief discussion of code status rather than a patient-oriented dialogue. We aimed to develop a guide to facilitate conversations between ED clinicians and patients to elicit patient values and establish goals for end-of-life care, while maintaining ED efficiency. Paths of ED Care, a conversation guide, is the product of this work. Design A multidisciplinary/multispecialty group used recommended practices to adapt a GOC conversation guide for ED patients. ED clinicians used the guide and provided feedback on content, design, and usability. Patient-clinician interactions were recorded for discussion analysis, and both were surveyed to inform iterative refinement. A series of discussions with patient representatives, multidisciplinary clinicians, bioethicists, and health care designers yielded feedback. We used a process similar to the International Patient Decision Aid Standards and provide comparison to these. Results A conversation guide, eight pages with each page 6 by 6 inches in dimension, uses patient-oriented prompts and includes seven sections: 1) evaluation of patient/family understanding of disease, 2) explanation of possible trajectories, 3) introduction to different pathways of care, 4) explanation of pathways, 5) assessment of understanding and concerns, 6) code status, and 7) personalized summary. Limitations Recruitment of sufficient number of patients/providers to the project was the primary limitation. Methods are limited to qualitative analysis of guide creation and feasibility without quantitative analysis. Conclusions Paths of ED Care is a guide to facilitate patient-centered shared decision making for ED patients, families, and clinicians regarding GOC. This may ensure care concordant with patients’ values and preferences. Use of the guide was well-received and facilitated meaningful conversations between patients and providers.

Background: Left ventricular assist devices as destination therapy (DT-LVAD) have been shown to decrease mortality compared with medical management, and can improve quality of life for many patients with advanced heart failure. However, while most patients live longer with DT-LVAD than they would have with medical therapy, deaths still occur. We sought to systematically examine the end-of-life care of patients who died with a DT-LVAD at a single center. Methods: All patients undergoing DT-LVAD at the Mayo Clinic in Rochester, Minnesota from January 1, 2007 through September 30, 2014 who subsequently died prior to July 1, 2015 were included. The cause of death was determined based on review of documentation in the electronic medical record, including autopsy reports, death certificates and clinical notes. Details about palliative care consultations, hospice enrollment, hospitalizations, and device deactivation at the end-of-life were obtained from the electronic medical record. Results: Of 89 patients that died with a DT-LVAD (84 HeartMate II, 3 HeartWare, 2 Heartmate XVE, mean age at death 66.1 years), the mean (standard deviation) time from LVAD implantation to death was 2.0 (1.9) years. The most common causes of death were multiorgan failure (25.9%), hemorrhagic stroke (24.7%), and progressive heart failure (20.0%). Nearly half (45.6%) of patients saw palliative care in consultation within a month prior to death. However, only 13 (15.5%) patients enrolled in hospice a median of 11 (range 1-315) days prior to death, including 4 patients with concurrent cancer, 2 with stroke, and 7 with multiorgan failure. The vast majority of patients (78.6%) died in the hospital, and of those hospitalized at death, 87.7% died in the intensive care unit. Most patients hospitalized at death transitioned to a comfort-directed approach to care within 24 hours of dying. In total, 43 (48.3%) patients had their LVAD deactivated prior to death, with all but 3 undergoing deactivation in the hospital. The vast majority of patients died within an hour of LVAD deactivation, and all within 26 hours. Conclusions: In contrast to the general heart failure population, most patients with DT-LVAD die in the hospital and very few enroll in hospice. A significant body of research has demonstrated that patients who die in the intensive care unit and the hospital, as opposed to home or with hospice assistance, experience worse quality of life, quality of death and caregiver outcomes. Potential reasons that patients with DT-LVAD may experience different end-of-life care than other patients with heart failure exist, including that they often experience sudden changes in health status prior to death from acute events such as hemorrhagic stroke. However, further work is needed to understand these differences and to determine whether patients with DT-LVAD are receiving optimal end-of-life care.

AbstractBackgroundCalciphylaxis is a debilitating dermatological condition associated with high rates of morbidity and mortality. Palliative care offers a multidisciplinary approach to addressing symptoms and goals of care in patients with serious medical diagnoses. Involvement of palliative services for calciphylaxis is infrequently reported in the literature. The purpose of this report is to assess rates of palliative and pain consultation for patients with calciphylaxis.MethodsThis is a comprehensive, single‐institution retrospective chart review of 121 eligible patients with a diagnosis of calciphylaxis treated at Mayo Clinic in Rochester, Minnesota, from 1999 to 2016. Inclusion criteria were an indisputable diagnosis of calciphylaxis based on clinical, histopathologic, and radiographic features. One hundred twenty‐one patients met inclusion criteria.ResultsFifty‐one patients (42%) received either a palliative (n = 15) or pain (n = 20) consultation, or both (n = 16). Patients with a palliative care consultation were younger compared with those without (mean ages 57 vs. 62 years, P = 0.046). In 104 patients (86%), psychiatric symptoms were not assessed.ConclusionsIn this cohort of patients with calciphylaxis, the majority do not receive palliative and pain care consultations. Psychiatric complications are inconsistently addressed. These observations highlight practice gaps in the care of patients with calciphylaxis.

Abstract Background: Palliative care is a medical specialty centered on improving the quality of life (QOL) of patients with complex or life-threatening illnesses. The need for Palliative care is increasing and with that the rigorous testing of triage tools that can be used quickly and reliably to identify patients that may benefit from palliative care. Methods: To that Aim we will conduct a two-armed stepped-wedge cluster randomized trial rolled out to two inpatient hospitals to evaluate whether a machine learning algorithm accurately identifies patients who may benefit from a comprehensive review by a palliative care specialist, and decreases time to receiving a palliative care consult in hospital. This is a single-center study which will be conducted from August 2019 to November 2020 at Saint Mary’s Hospital & Methodist Hospital, Mayo Clinic, Rochester, Minnesota. Clusters will be nursing units which will be chosen to be a mix of complex patients from Cardiology, Critical Care and Oncology and had previously established relationships with palliative medicine. The stepped wedge design will have 12 units allocated to a design matrix of 5 treatment wedges. Each wedge will last 75 days resulting in a study period of 12 months unless otherwise specified. Data will be analyzed with Bayesian hierarchical models with credible intervals denoting statistical significance.Discussion: This intervention offers a pragmatic approach to delivering specialty palliative care to hospital patients in need using machine learning, thereby leading to high value care and improved outcomes. It is not enough for AI to be utilized by simply publishing research showing predictive performance; Clinical trials demonstrating better outcomes are critically needed. Furthermore, the deployment of an AI algorithm is a complex process that requires multiple teams with varying skill sets. To evaluate a deployed AI, a pragmatic clinical trial can accommodate the difficulties of clinical practice whilst retaining scientific rigor.Trial registration NCT03976297 (ClinicalTrials.gov), registered on June 6, 2019 prior to trial start.

Abstract Objective Access to palliative care (PC) is important for many patients with uncontrolled symptom burden from serious or complex illness. However, many patients who could benefit from PC do not receive it early enough or at all. We sought to address this problem by building a predictive model into a comprehensive clinical framework with the aims to (i) identify in-hospital patients likely to benefit from a PC consult, and (ii) intervene on such patients by contacting their care team. Materials and Methods Electronic health record data for 68 349 inpatient encounters in 2017 at a large hospital were used to train a model to predict the need for PC consult. This model was published as a web service, connected to institutional data pipelines, and consumed by a downstream display application monitored by the PC team. For those patients that the PC team deems appropriate, a team member then contacts the patient’s corresponding care team. Results Training performance AUC based on a 20% holdout validation set was 0.90. The most influential variables were previous palliative care, hospital unit, Albumin, Troponin, and metastatic cancer. The model has been successfully integrated into the clinical workflow making real-time predictions on hundreds of patients per day. The model had an “in-production” AUC of 0.91. A clinical trial is currently underway to assess the effect on clinical outcomes. Conclusions A machine learning model can effectively predict the need for an inpatient PC consult and has been successfully integrated into practice to refer new patients to PC.