Leadership's Perceptions of Palliative Care During the COVID-19 Pandemic: A Qualitative Study.

CONTEXT: Palliative care (PC) played a leading role in the COVID-19 pandemic. However, little is known regarding health system leadership's perceptions. BACKGROUND: This study aimed to explore the perceptions, understanding, and utilization of PC before compared to during the COVID-19 pandemic among health system leadership. METHODS: Semi-structured, in-depth interviews were conducted with leaders in a large healthcare system based in Massachusetts, United States. RESULTS: A total of 22 in-depth interviews were completed at four facilities. Emerging themes included the role of PC before compared to during the COVID-19 pandemic, facilitators and barriers to PC delivery, and recommendations for future practice. Participants reported that the COVID-19 pandemic increased PC utilization, reinforced positive perceptions of the specialty, and emphasized its role in maximizing healthcare efficiency. Many participants found PC financing to be a barrier to delivery; some had an inaccurate understanding of how PC is reimbursed. When asked about their recommendations for improving future practice, participants noted improvements in coordination within the healthcare system and education of healthcare providers and future physicians in primary PC skills. CONCLUSIONS: Our findings suggest that healthcare leadership increasingly understands the value of PC and its critical role within the health system and during future public health emergencies; this was further reinforced during the COVID-19 pandemic. Healthcare leadership recognizes and highlights the need to increase investments in this specialty, both financially and educationally. In doing so, healthcare costs will be lowered, patient satisfaction will increase, and care will be better coordinated.

"Life-Sustaining Treatment and Advance Care Documentation among Chinese American ICU Decedents".

CONTEXT: Despite being one of the fastest growing ethnic groups in the U.S., there exists a gap in how treatment preferences among Chinese Americans are expressed and enacted upon in inpatient settings. OBJECTIVES: To compare the rates of advance care documentation and life-sustaining treatment between Chinese American and White American ICU decedents. METHODS: In this matched retrospective decedent cohort study, we included four ICUs within a tertiary medical center located in a Chinatown neighborhood. The Chinese American cohort included adult patients during the terminal admission in the ICU with primary language identified as Chinese (Mandarin, Cantonese, Taishanese). The White American cohort was matched according to age, sex, year of death, and admitting diagnosis. RESULTS: We identified 154 decedents in each cohort. Despite similar odds on admission, Chinese American decedents had higher odds of DNR completion (OR 1.82; 95%CI 0.99-3.40) and DNI completion (OR 1.81; 95%CI, 1.07-1.57) during the terminal ICU admission. Although Chinese American decedents had similar odds of intubation (aOR 0.90; 95%CI, 0.55-1.48), a higher proportion signed a DNI after intubation (41% vs 25%). Chinese American decedents also had higher odds of CPR (aOR 2.03; 95%CI, 1.03-41.6) with three Chinese American decedents receiving CPR despite a signed DNR order (12% vs 0%). CONCLUSIONS: During terminal ICU admissions, Chinese American decedents were more likely to complete advance care documentation and to receive CPR than White American decedents. Changes in code status were more common for Chinese Americans after intubation. Further research is needed to understand these differences and identify opportunities for goal-concordant care.

Curricular Reform in Serious Illness Communication and Palliative Care: Using Medical Students' Voices to Guide Change.

PURPOSE: To gather and leverage the voices of students to drive creation of required, integrated palliative care curricula within undergraduate medical education in Massachusetts, which is lacking in a majority of U.S. medical schools. METHOD: The study was conducted by the Massachusetts Medical Schools' Collaborative, a working group committed to ensuring all medical students in Massachusetts receive foundational training in serious illness communication (SIC) and palliative care. Eight focus groups (2 per participating medical school) were conducted during January-May 2021 and included a total of 50 students from Boston University Chobanian & Avedisian School of Medicine, Harvard Medical School, Tufts University School of Medicine, and the UMass Chan Medical School. Data collected from focus groups were discussed and coded. Themes were identified using the immersion/crystallization qualitative data analysis approach. RESULTS: Six key themes emerged. Students viewed SIC as essential to high-quality medical practice regardless of specialty, and believed training in SIC skills and palliative care should be required in medical school curricula. Students preferred to learn and practice these skills using frameworks, particularly in real-world situations. Students recognized the expertise of palliative care specialists and described them as a scarce, often misunderstood resource in health care. Students reported it was mostly "luck" if they were included in family meetings and observed good role models. Finally, students desired practice in debriefing after difficult and emotional situations. CONCLUSIONS: This study confirms long-standing themes on students' experiences with SIC and palliative care topics, including feeling inadequately prepared to care for seriously ill patients as future physicians. Our study collected students' perspectives as actionable data to develop recommendations for curricular change. Collaborative faculty also created recommendations based on the focus group data for immediate and ongoing SIC and palliative care curricular change in Massachusetts, which can apply to medical schools nationwide.

Dialysis decision-making process by Chinese American patients at an urban, academic medical center: a retrospective chart review.

BACKGROUND: Clinical practice guidelines emphasize shared decision-making for kidney replacement treatment, yet little is known about the influence of cultural differences on that process. We undertook a retrospective chart review to explore the process and timing of dialysis decision making and initiation in Chinese American patients to provide quality kidney care for this population. DESIGN: Participants received outpatient care at Tufts Medical Center and dialysis at Dialysis Clinic, Inc. Boston or Somerville, MA from 2001-2021. Clinic chart review sourced demographic, clinical, and end-of-life care information from 180 participants (82 Chinese American, 98 other) from stage 4 chronic kidney disease (CKD) and dialysis initiation. RESULTS: Chinese American participants were older (mean 70 vs. 59, p < 0.0001), less likely to speak English (12% vs. 87%, p < 0.0001), and used interpreter services more (80% vs. 11%, p < 0.0001). Chinese American participants had more visits (median 14 vs. 10, p = 0.005); were more often accompanied by family members (75% vs. 40%, p < 0.001); and had significantly lower rates of healthcare proxy documentation (35% vs. 55%, p = 0.006). There was no statistical difference in months between first CKD 4 visit and first dialysis. Both groups started dialysis at the same average eGFR and with similar rates of permanent dialysis access. Chinese American participants had significantly lower serum albumin at dialysis initiation (mean 3.3 g/dL vs 3.7 g/dL, p = 0.0003). Documentation reflected a low number of conversations about non-dialytic care, end-of-life planning, or palliative care in both groups across all visits. CONCLUSION: The time between CKD 4 and dialysis initiation was the same in both groups, suggesting a similar overall outcome of care. Chart documentation suggests that Chinese American participants had a significantly higher number of visits with nephrologists where discussion about dialysis was noted and were more likely to have a family member present at the visit. Fewer Chinese American participants completed healthcare proxies. Among all study participants, healthcare proxy, code status, and palliative care discussions were reported less frequently than expected. These findings highlight opportunities for collaboration between palliative care clinicians and nephrologists.

A Call to Action: Using Curriculum Mapping at Four Medical Schools in Massachusetts to Advance Serious Illness Communication Training in Undergraduate Medical Education.

Background: Practicing physicians require serious illness communication (SIC) skills to ensure high-quality, humanistic care for patients and families as they face life-changing medical decisions. However, a majority of U.S. medical schools do not require formal training in SIC and fail to provide students deliberate practice before graduation. The Massachusetts Medical Schools' Collaborative was created to ensure that students receive foundational SIC training in undergraduate medical education. This Collaborative developed a curriculum-mapping tool to assess SIC at four medical schools. Objective: We aimed to understand existing educational activities across four medical schools and identify opportunities to build longitudinal, developmentally based curricular threads in SIC. Design: From July 2019 to April 2021, faculty, staff, and medical students assessed current educational activities related to five core competencies in SIC, adapted for students from national competencies for palliative medicine fellows, using a curriculum mapping tool. Measurements: The group selected 23 keywords and collected metrics to describe the timing, instruction and assessment for each school's educational activities. Results: On average, there were only 40 hours of required curricula in SIC over four years. Over 80% of relevant SIC hours occurred as elective experiences, mostly during the postclerkship phase, with limited capacity in these elective experiences. Only one school had SIC educational activities during the clerkship phase when students are developing clinical competencies. Assessment methods focused on student participation, and no school-assessed clinical performance in the clerkship or postclerkship phase. Conclusions: Medical schools are failing to consistently train and ensure basic competency in effective, compassionate SIC. Curriculum mapping allows schools to evaluate their current state on a particular topic such as SIC, ensure proper assessment, and evaluate curricular changes over time. Through the deliberate inclusion of SIC competencies in longitudinal curriculum design, we can fill this training gap and create best practices in undergraduate medical education.

Assessing the impact of grief on quality of life, work productivity, and health outcomes for parents bereaved from SMA: A study protocol.

BACKGROUND: U.S. cost-effectiveness recommendations suggest that analyses should include all costs and effects relevant to the decision problem [1]. However, in many diseases, including spinal muscular atrophy (SMA), few studies have evaluated bereaved family outcomes after a child has died, neglecting potential impacts on their health-related quality of life (HRQoL), work productivity, and mental health. Additionally, grief-related outcomes are rarely included in economic evaluations. This manuscript outlines the protocol of a study that will estimate the HRQoL, work functioning, and mental health of bereaved parents of children with SMA type 1 to determine how outcomes vary based on parent's sex and the time since a child's death. METHODS: This study will involve two phases. In Phase 1, we will conduct a literature review to identify prior research that has measured how parental grief impacts HRQoL, work productivity, and mental health. We will also interview four bereaved parents of children with SMA type 1, stratified by parent sex and time since their child's death, and analyze findings using a thematic analysis. In Phase 2, we will develop a survey draft based on Phase 1 findings. Parents bereaved from SMA type 1 will review our survey draft and we will revise the survey based on their feedback. We will send a cross-sectional survey to approximately 880 parents bereaved from SMA type 1. We will analyze findings from the survey to investigate whether the severity of grief symptoms is correlated with HRQoL, productivity, depression and anxiety symptom severity. We will also evaluate whether the mean scores of grief and each of the outcomes vary significantly when stratified by parent sex and the time since the child's death. DISCUSSION: Our results will provide preliminary information on how parental grief can impact HRQoL, productivity, and mental health outcomes over time. Increasing the availability of family outcomes data will potentially assist organizations performing health economic evaluations, such as the Institute of Clinical and Economic Review (ICER) in the U.S. This research will also help to inform the development of future economic guidelines on this topic.

Voices of Pandemic Care: Perspectives from Pediatric Providers During the First SARS-CoV-2 Surge.

Pediatric providers were called on to care for adult patients well beyond their typical scope of practice during the first surge of the SARS-CoV-2 pandemic. Here, the authors share novel viewpoints and innovations from the perspective of providers, consultants, and families. The authors enumerate several of the challenges encountered, including those faced by leadership in supporting teams, balancing competing responsibilities to children while caring for critically ill adult patients, preserving the model of interdisciplinary care, maintaining communication with families, and finding meaning in work during this unprecedented crisis.

Community Member and Health Care Provider Perspectives on Communication With Chinese American Patients With Cancer: A Qualitative Study.

PURPOSE: Effective health care provider-patient discussions of cancer diagnoses and prognoses are essential to enhance health outcomes in oncology. Chinese Americans have been designated an underserved population in oncology by the National Institutes of Health. We explored the perspectives of Boston Chinese American community members and health care providers regarding communication preferences and decision making in oncology care. METHODS: In this inductive, qualitative study, we conducted virtual, semi-structured interviews with 21 health care providers with experience in caring for Chinese American patients with cancer and 25 older Boston Chinatown community members who self-identify as Chinese or Chinese American. Thematic analysis was performed. RESULTS: Two major themes were identified. First, provider communication should incorporate a gentle but truthful approach, careful word choice, authority-led style, and professionalism. Second, the family plays a large role in medical and nonmedical settings, and a family-centered approach to communication should be used. CONCLUSION: Our study builds on and challenges current knowledge regarding oncologic communication with Chinese American patients. A focus on the improvement of provider-patient cancer communication for Chinese Americans will improve care quality and satisfaction among patients and clinicians alike and serve to decrease disparities in care.

Paving the way for universal medical student training in serious illness communication: the Massachusetts Medical Schools' Collaborative.

BACKGROUND: Patients with serious illness look to their clinicians for discussion and guidance on high-stakes treatment decisions, which are complex, emotional and value-laden. However, required training in serious illness communication is rare in U.S. medical schools, with efforts at curricular reform stymied by competing institutional demands, lack of resources and accreditation requirements. We describe an approach to building and scaling medical student training in serious illness communication through the creation of a statewide collaborative of medical schools. METHODS: The Massachusetts Medical Schools' Collaborative is a first-of-its-kind group that promotes longitudinal, developmentally-based curricula in serious illness communication for all students. Convened externally by the Massachusetts Coalition for Serious Illness Care, the collaborative includes faculty, staff, and students from four medical schools. RESULTS: The collaborative started with listening to member's perspectives and collectively developed core competencies in serious illness communication for implementation at each school. We share early lessons on the opportunities, challenges and sustainability of our statewide collective action to influence curricular reform, which can be replicated in other topic areas. CONCLUSIONS: Our next steps include curriculum mapping, student focus groups and faculty development to guide successful and enduring implementation of the competencies to impact undergraduate medical education in Massachusetts and beyond.

Pediatric Palliative Care Education Model in Low Resource Settings: A Mixed-Methods Evaluation.

CONTEXT: Globally, approximately 21.6 million children need pediatric palliative care (PPC). The greatest burden lies in low- and middle-income countries, where the demand for PPC exceeds available resources. OBJECTIVES: The objective of this study was to assess the impact of a PPC workshop on healthcare providers' self-efficacy, comfort and confidence related to the provision of PPC in a Bhutanese referral-level hospital. METHODS: This mixed-methods study included a one-and-a-half day PPC workshop with surveys administered to participants at three time points (before, immediately after, and six months after the workshop) to evaluate changes in self-efficacy, comfort and confidence. The study was conducted in January 2017 with healthcare providers at the Jigme Dorji Wangchuck National Referral Hospital in Thimphu, Bhutan. RESULTS: Forty-one providers participated in the workshop; 38 completed the post-workshop survey and 27 completed the six months post-workshop survey. Results showed statistically significant increases in comfort levels from pre- to post-workshop surveys across nearly all areas. Qualitative results supported these findings. CONCLUSION: The results of this study suggest that a short, interactive and interdisciplinary workshop, originally designed for the United States setting but adapted to a low resource context, is an effective way to improve providers' self-efficacy, comfort and confidence in the provision of PPC in resource-limited settings.

Exploratory Study of Advance Care Discussions Among Chinese American and White Stage IV Cancer Patients at an American Tertiary Medical Center.

PURPOSE: Timely advance care discussions are essential components of quality care for diverse populations; however, little is known about these conversations among Chinese American cancer patients. This exploratory study describes differences in advance care discussions and planning between Chinese American and White advanced cancer patients. METHODS: We collected data for 63 Chinese American and 63 White stage IV cancer patients who died between 2013 and 2018. We compared: frequency and timing of prognosis, goals of care (GOC), and end-of-life care (EOLC) discussions in the final year of life; family inclusion in discussions; healthcare proxy (HCP) identification; do not resuscitate (DNR) order, do not intubate (DNI) order, and other advance directive (AD) completion. We did not conduct statistical tests due to the study's exploratory nature. RESULTS: Among Chinese American and White patients, respectively, 76% and 71% had prognosis, 51% and 56% had GOC, and 89% and 84% had EOLC discussions. Prognosis, GOC, and EOLC discussions were held a median of 34.0, 15.5, and 34.0 days before death among Chinese American and 17.0, 13.0, and 24.0 days before death among White patients. Documentation rates among Chinese American and White patients were 79% and 76% for DNRs, 81% and 71% for DNIs, 79% and 81% for HCPs, and 52% and 40% for other ADs. CONCLUSIONS: Findings suggest that Chinese Americans had similar rates of advance care discussions, completed conversations earlier, and had similar to higher rates of AD documentation compared to White patients. Further studies are needed to confirm our preliminary findings.

A Qualitative Study of the Role of Palliative Care During the COVID-19 Pandemic: Perceptions and Experiences Among Critical Care Clinicians, Hospital Leaders, and Spiritual Care Providers.

BACKGROUND: Palliative care offers a unique skill set in response to challenges posed by the COVID-19 pandemic, with expertise in advance care planning, symptom management, family communication, end-of-life care, and bereavement. However, few studies have explored palliative care's role during the pandemic and changes in perceptions and utilization of the specialty among health and spiritual care providers and hospital leaders. OBJECTIVE: To explore the utilization, perceptions, and understanding of palliative care among critical care clinicians, hospital leaders, and spiritual care providers during the pandemic. DESIGN: We conducted a qualitative study employing semi-structured, in-depth interviews. SETTING/PARTICIPANTS: We conducted the study at a tertiary academic medical center in Boston, Massachusetts, USA. Between August and October 2020, we interviewed 25 participants from 3 informant groups: (1) critical care physicians, (2) hospital leaders, and (3) spiritual care providers. RESULTS: Respondents recognized that palliative care's role increased in importance during the pandemic. Palliative care served as a bridge between providers, patients, and families; supported provider well-being; and contributed to hospital efficiency. The pandemic reinforced participants' positive perceptions of palliative care, increased their understanding of the scope of the specialty's practice, and inspired physicians to engage more with palliative care. Respondents indicated the need for more palliative care providers and advocated for their role in bereavement support and future pandemic response. CONCLUSION: Findings highlight evolving and increased utilization of palliative care during the pandemic, suggesting a need for greater investment in palliative care programs and for palliative care involvement in public health emergency preparedness and response.

Exploratory Study Comparing End-of-Life Care Intensity between Chinese American and White Advanced Cancer Patients at an American Tertiary Medical Center.

Background: Understanding ethnic disparities in end-of-life care (EOLC) intensity is central to improving outcomes for diverse populations. Although Chinese Americans represent one of the fastest growing ethnic groups in the United States, little is known about their EOLC intensity. Objective: To explore differences in indicators of high-intensity EOLC in the final 30 days of life, place of death, and hospice utilization between Chinese American and White advanced cancer patients. Methods: In this exploratory review, we collected data on 48 Chinese American and 48 White stage IV solid tumor patients who died during 2013-2018. Indicators of high-intensity care from the final 30 days of life included ≥2 hospital, ≥1 intensive care unit (ICU), and/or ≥2 emergency department admissions; cardiopulmonary resuscitation administration and mechanical ventilation (MV); place of death; and whether patients were on hospice at death. Results: Among Chinese American and White patients, respectively, 49% and 36% died in the hospital, 15% and 7% died in the ICU, 17% and 8% received MV, and 6% and 13% had ≥1 hospital admission lasting >14 days. Seventeen percent of Chinese American and 43% of White patients died at home. Hospice enrollment was similar between groups. Seventeen percent of Chinese American and 8% of White patients died within 30 days of diagnosis. Conclusion: Results suggest that fewer Chinese Americans died at home, whereas more died in the ICU, received MV, and died within 30 days of cancer diagnosis, indicating possible disparities in EOLC. Further studies are needed to explore findings from this exploratory investigation.

Intravenous Ketorolac Infusion for Intractable Pleuritic Pain Secondary to Metastatic Epithelioid Hemangioendothelioma.

Background: Epithelioid hemangioendothelioma (EHE) patients can experience severe pain. Nonsteroidal anti-inflammatory drugs, including ketorolac tromethamine, can effectively treat cancer-related pain, provide an opioid-sparing effect, and may be particularly effective for EHE pain. There are limited data describing prolonged (>5 days) continuous intravenous (IV) ketorolac infusion for cancer-related pain and no data on its use in EHE. Case Description: A 67-year-old woman with metastatic hepatic EHE suffered from chronic intractable pleuritic pain unresponsive to trials of nonopioid, opioid, adjuvant medications, and nonpharmacological interventions. In the hospital, continuous IV ketorolac infusion at 3.8 mg/hour (91.2 mg/day) effectively managed pain. With thorough monitoring, the patient was discharged on continuous IV ketorolac infusion at 3 mg/hour (72 mg/day). Infusion continued for 79 days without clinical or laboratory evidence of ketorolac toxicity. Conclusion: Ketorolac tromethamine as a long-term infusion is a potentially viable analgesic for patients with intractable EHE-related pain unresponsive to standard therapies.

Weight Loss as an Effective Strategy to Decrease Opioid Use and Frequency of Vaso-Occlusive Crises in Patients with Sickle Cell Disease.

Background: Vaso-occlusive crises (VOCs) are a hallmark of sickle cell disease (SCD) during which patients experience localized pain. The current mainstay of treatment for SCD-related pain syndrome is nonsteroidal anti-inflammatory agents (NSAIDs) and opioid analgesics. Opioids, however, carry a high risk of depression, addiction, and life-threatening hypoventilation. In this study we report weight loss through a multidisciplinary program and bariatric surgery as an effective nonopioid modality to decrease the use of opioids and frequency of VOCs in a patient with SCD. Case Description: A 35-year-old woman with SCD and morbid obesity (body mass index [BMI] of 42 kg/m2) required high doses of opioids for pain control [870 morphine milligram equivalents (MME) per day], and experienced monthly hospitalizations for VOCs that precluded her from working or having meaningful interpersonal relationships. Palliative care identified that the patient had no admissions for VOCs when her BMI was <25 kg/m2. Given this observation, it was recommended to the patient that she lose weight. The patient enrolled in a multidisciplinary wellness program and underwent laparoscopic sleeve gastrectomy. She subsequently lost 30 kg (BMI of 29 kg/m2), decreased her basal opioid requirement by 58% (365 MME per day), and experienced no further hospitalizations for VOCs after the intervention, thereby improving her quality of life. Conclusions: The pervasive use and overreliance on opioid analgesics in the treatment of VOCs increase morbidity and mortality among patients with SCD. This case study offers compelling evidence for weight loss through a multidisciplinary program as an adjunctive therapy to decrease the use of opioids and frequency of hospitalizations for VOCs.

From Fear to Confidence: Changing Providers' Attitudes About Pediatric Palliative and Hospice Care.

CONTEXT: Children have limited access to hospice care: few existing hospice programs have dedicated pediatric teams, and adult hospice providers feel inadequately trained to care for children. OBJECTIVES: The aim of this study was to increase access to pediatric hospice care by empowering adult hospice providers to care for children through a comprehensive education program. Education empowers providers by changing their attitudes from inadequacy to confidence. METHODS: The authors developed a two-day education program to train interdisciplinary teams of adult hospice providers in pediatric care. The curriculum consists of 13 modules to improve participants' knowledge, skills, and attitudes. Ninety-three providers across the U.S. learned via multiple teaching methods including lectures, role plays by professional actors, interviews of bereaved parents, and self-reflections. Learning was evaluated with assessments before, immediately after, and six months after the program. Responses were compared using a one-sided analysis of variation with a significance level of alpha <0.05. RESULTS: Participants improved their knowledge in 12 of 13 modules. Self-reported confidence levels with pediatric care improved significantly in all 13 modules (P < 0.05). After this program, 79% of providers reported feeling better prepared to care for pediatric hospice patients. Qualitative data reinforced that learners felt more prepared to care for pediatric patients. CONCLUSION: A two-day, high-intensity low-cost community-based education program can improve adult providers' knowledge of and skill level with pediatric care, leading to a change in attitude from fear to confidence. This model has the potential to increase access to pediatric hospice care as it uses existing adult hospice infrastructure.

Developing competencies for pediatric hospice and palliative medicine.

In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert clinician-educators in HPM defined the initial competency-based outcomes for HPM fellows (General HPM Competencies). Concurrently, these experts recognized and acknowledged that additional expertise in pediatric HPM would ensure that the competencies for pediatric HPM were optimally represented. To fill this gap, a group of pediatric HPM experts used a product development method to define specific Pediatric HPM Competencies. This article describes the development process. With the ongoing evolution of HPM, these competencies will evolve. As part of the Next Accreditation System, the Accreditation Council of Graduate Medical Education uses milestones as a framework to better define competency-based, measurable outcomes for trainees. Currently, there are no milestones specific to HPM, although the field is designing curricular milestones with multispecialty involvement, including pediatrics. These competencies are the conceptual framework for the pediatric content in the HPM milestones. They are specific to the pediatric HPM subspecialist and should be integrated into the training of pediatric HPM subspecialists. They will serve a foundational role in HPM and should inform a wide range of emerging innovations, including the next evolution of HPM Competencies, development of HPM curricular milestones, and training of adult HPM and other pediatric subspecialists. They may also inform pediatric HPM outcome measures, as well as standards of practice and performance for pediatric HPM interdisciplinary teams.