Implementing the Serious Illness Care Program in Safety Net Health Systems: A Qualitative Study.

CONTEXT: Interventions to improve the quality of care for people affected by serious illness commonly fail to reach patients from marginalized and underserved communities, which include those characterized by racialized or indigenous identity, sexual and gender minority status, and rural living. Interventions to improve care through serious illness conversations have demonstrated benefit, but little is known about their implementation in health systems that predominantly serve these patient groups. OBJECTIVES: The study aimed to understand factors influencing implementation of a serious illness communication-focused intervention-the Serious Illness Care Program in health systems who primarily provide care to marginalized and underserved communities. METHODS: Qualitative interviews (16) and focus groups (3) were conducted with 19 interdisciplinary team members from six geographically diverse U.S. healthcare systems. Using a template analysis approach, investigators coded data inductively and deductively to identify themes. RESULTS: Three themes emerged: patient factors, intervention elements, and health system contextual factors. Participants highlighted mission-driven efforts, creativity, interprofessional practice, and trainees as enablers of success. They identified weaknesses in the intervention's communication tool-the Serious Illness Conversation Guide as barriers to implementation of conversations. Resource constraints, socio-economic vulnerability, and mistrust in the health system were seen as additional barriers. CONCLUSIONS: Health systems that provide care to underserved and marginalized communities face unique challenges implementing the Serious Illness Care Program. They also possess assets, some unique to these settings, that support program adoption. Findings suggest that implementation of similar programs in low-resource healthcare settings may help address unmet needs among marginalized populations.

Top Ten Tips Palliative Care Clinicians Should Know About Delivering Specialty-Aligned Palliative Care.

Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical, psychosocial, and spiritual suffering across illnesses and settings, PC clinicians must acquire advanced knowledge of disease-specific symptoms, common treatments, and complications that impact prognosis and outcomes. The tips provided in this article draw on the experience and knowledge of interprofessional PC and other specialist clinicians from diverse institutions across the United States who have developed and studied SAPC services across different disease groups. Recommendations include focusing on approaching specialty team partnerships with humility, curiosity, and diplomacy; focusing on patient populations where PC needs are great; clarifying how work and responsibilities will be divided between PC and other clinicians to the extent possible; using consults as opportunities for bidirectional learning; and adapting workflows and schedules to meet specialty team needs while managing expectations and setting limits as appropriate. Furthermore, to provide effective SAPC, PC clinicians must learn about the specific symptoms, prognoses, and common treatments of the patients they are serving. They must also build trusting relationships and maintain open communication with patients and referring clinicians to ensure integrated and aligned PC delivery.

Experiences of Gender Inequity Among Women Physicians Across Career Stages: Findings from Participant Focus Groups.

Background and Purpose: Gender inequity in academic medicine persists despite efforts to the contrary. Even with increasing representation of women physicians in academic medicine, leadership positions and promotion to tenure are still not representative. This study describes the experiences of women physicians at various stages of their careers, uncovering current challenges and potential areas for improvement toward gender equity. Methods: Three focus groups were conducted (n = 28) as part of a national professional development conference: Growth, Resilience, Inspiration, and Tenacity (GRIT) for Women in Medicine: GRIT. We thematically analyzed participant responses to assess perspectives on the impact of experiences, barriers to professional growth, opportunities for improvement, and definitions of success. Results: The major issues the participants faced included subthemes of (1) systemic barriers to success, (2) implicit biases, (3) self-advocacy, and (4) burnout and stress. Solutions for issues that were discussed included (1) fostering supportive communities, (2) encouraging personal and professional development, and (3) the need for system-wide policy changes. We found that most women needed or benefited from the fostering of communities and desired opportunities for developing professional skills. Participants felt institutional transparency for grievances determined the level of support and confidence in reporting instances of mistreatment. Participants tended to define success according to (1) personal success and (2) leaving a legacy. Conclusions/Implications: Despite policy advancements and a social evolution away from discrimination against women, women in medicine continue to experience inequities across career stages. Potential solutions include fostering supportive communities, encouraging personal and professional development, and system-wide policy changes.

Reconnecting: Strategies for Supporting Isolated Older Adults during COVID-19 through Tele-palliative Care.

The COVID-19 pandemic has resulted in unprecedented levels of social isolation which has negatively impacted older patients in particular on multiple levels. We present a case of an older patient with several complex psychosocial issues who was hospitalized and died from COVID-19. The social isolation required during the pandemic compounded patient and family stressors and diminished the patient's access to clinicians and to his usual support network and coping strategies. We describe how technology and tele-palliative care were utilized to reconnect the patient with clinicians and family and to provide clinical care that enhanced coping skills and support. Using telemedicine to restructure the approach to care was crucial in improving multiple domains of care and can be considered a resource for caring for older adults, especially during the challenging times brought on by the COVID-19 pandemic.

NCCN Guidelines® Insights: Palliative Care, Version 2.2021.

Palliative care has evolved to be an integral part of comprehensive cancer care with the goal of early intervention to improve quality of life and patient outcomes. The NCCN Guidelines for Palliative Care provide recommendations to help the primary oncology team promote the best quality of life possible throughout the illness trajectory for each patient with cancer. The NCCN Palliative Care Panel meets annually to evaluate and update recommendations based on panel members' clinical expertise and emerging scientific data. These NCCN Guidelines Insights summarize the panel's recent discussions and highlights updates on the importance of fostering adaptive coping strategies for patients and families, and on the role of pharmacologic and nonpharmacologic interventions to optimize symptom management.

Survival of Ventilated Extremely Premature Neonates With Severe Intraventricular Hemorrhage.

BACKGROUND: Severe intraventricular hemorrhage (IVH) is a leading mortality risk factor among extremely premature neonates. Because other life-threatening conditions also occur in this population, it is unclear whether severe IVH is independently associated with death. The existence and potential implications of regional variation in severe IVH-associated mortality are unknown. METHODS: We performed a retrospective cohort study of mechanically ventilated neonates born at 22 to 29 weeks' gestation who received care in 242 American NICUs between 2000 and 2014. After building groups composed of propensity score-matched and center-matched pairs, we used the Cox proportional hazards analysis to test our hypothesis that severe IVH would be associated with greater all-cause in-hospital mortality, defined as death before transfer or discharge. We also performed propensity score-matched subgroup analyses, comparing severe IVH-associated mortality among 4 geographic regions of the United States. RESULTS: In our analysis cohort, we identified 4679 patients with severe IVH. Among 2848 matched pairs, those with severe IVH were more likely to die compared with those without severe IVH (hazard ratio 2.79; 95% confidence interval 2.49-3.11). Among 1527 matched pairs still hospitalized at 30 days, severe IVH was associated with greater risk of death (hazard ratio 2.03; 95% confidence interval 1.47-2.80). Mortality associated with severe IVH varied substantially between geographic regions. CONCLUSIONS: The early diagnosis of severe IVH is independently associated with all-cause in-hospital mortality in extremely premature neonates. Regional variation in severe IVH-associated mortality suggests that shared decision-making between parents and neonatologists is strongly influenced by ultrasound-based IVH assessment and classification.

Resurrecting the Hospital Autopsy: Impact of an Office of Decedent Affairs on Consent Rates, Providers, and Next-of-Kin.

CONTEXT.­: Autopsy rates have decreased dramatically despite providing important clinical information to medical practices and social benefits to decedents' families. OBJECTIVE.­: To assess the impact of an institutional Office of Decedent Affairs (ODA), a direct communication link between pathology and decedents' families, on hospital autopsy consent rates, autopsy-related communication, practitioner views, and next-of-kin experiences. DESIGN.­: A before and after study involving all hospital decedents whose deaths did not fall within the jurisdiction of the medical examiner's office from 2013 to 2018. A pathology-run ODA launched in May 2016 to guide next-of-kin through the hospital death process (including autopsy-related decisions) and serve as the next-of-kin's contact for any subsequent autopsy-related communication. Critical care and hematology/oncology practitioners were assessed for their autopsy-related views and decedents' next-of-kin were assessed for their autopsy-related experiences. Autopsy consent rates for non-medical examiner hospital deaths, autopsy-related communication rates, practitioner views on the role and value of autopsy, and next-of-kin autopsy experiences and decisions factors were compared prior to and after ODA launch. RESULTS.­: Autopsy consent rates significantly increased from 13.2% to 17.3% (480 of 3647 deaths versus 544 of 3148 deaths; P < .001). There were significant increases in the rate of autopsy-related discussions and bereavement counseling provided to decedents' families. Practitioner views on the positive role of autopsy for any hospital death and those with advanced stage cancer also significantly increased. Next-of-kin indicated more consistent autopsy-related discussions with the potential benefits of autopsy discussed becoming key decision factors. CONCLUSIONS.­: An ODA improves hospital autopsy consent rates, autopsy-related communication, providers' autopsy-related views, and next-of-kins autopsy experiences.

Launching the Next Steps to Improve Hospice and Palliative Medicine Fellow Performance Assessment: A Look Back to the Initial Toolkit of Assessment Methods.

Education leaders in hospice and palliative medicine (HPM) have long acknowledged the challenge of fellow performance assessment and the need for HPM-specific fellow assessment tools. In 2010, and in alignment with the Accreditation Council for Graduate Medical Education's (ACGME's) directive toward competency-based medical education, the national HPM Competencies Workgroup curated a set of assessment tools, the HPM Toolkit of Assessment Methods. The Toolkit has been a resource for HPM fellowship directors in evolving practical, multifaceted fellow assessment strategies. Now, as American Academy of Hospice and Palliative Medicine plans for a national workgroup in 2020 to define current HPM fellow assessment methods and to propose strategies to strengthen and standardize future assessment, the Toolkit provides a strong base from which to launch. However, the field learned important lessons from the 2010 Workgroup about the consensus process, gaps in areas of assessment, opportunities to address gaps with new or adapted tools, and limitations in implementing the Toolkit over time in terms of tracking, accessibility, and dissemination. This article describes the development of the Toolkit, including recommended tools and methods for assessment within each ACGME competency domain, and links the lessons learned to recommendations for the 2020 workgroup to consider in creating the next HPM assessment strategy and toolkit. Effective implementation will be crucial in supporting fellows to reach independent practice, which will further strengthen the field and workforce to provide the highest quality patient and family-centered care in serious illness. This will require an inspired, committed effort from the HPM community, which we enthusiastically anticipate.

Pilot study of a condensed communication skills workshop for gynecologic oncology fellows.

In gynecologic oncology (GO) fellowship, devoting sufficient time to learning communication skills can be challenging due to required time and logistics. A two day workshop was previously piloted at a single institution with GOs and found to be beneficial. We sought to implement that curriculum in a condensed form. We conducted two four-hour sessions with 4 GO fellows at a single institution over 4 months. Sessions consisted of a didactic in communication skills led by faculty with VitalTalk™ training, followed by application with a simulated patient. Cases were developed and previously used in a two-day workshop at another institution. Fellows were surveyed prior to both sessions and after the second session. Perceived confidence was assessed on a Likert scale (1 to 5). An improvement was defined by an increase of ≥1 in Likert score. All fellows reported that the educational quality of the sessions was "excellent," that the time in between sessions was "just right," allowing them to apply skills learned in the first session prior to the second. After both sessions, at least three of the four fellows reported an improvement in confidence in nearly 50% (10/21) of the communication topics assessed. GO fellows perceived improvements in communication skills with condensed half-day training seminars.

Gynecologic oncology providers endorse practice-changing impact of communication skills training.

OBJECTIVE: Effective communication improves patient outcomes and is crucial to good patient care. Communication skills training (CST) has been shown to improve communication skills in non-gynecologic oncology specialties. We sought to develop and test CST for gynecologic oncology (GO) providers. METHODS: We developed and conducted a two-day CST workshop with an interprofessional group of 20 GO providers over two years. Participants were surveyed pre-workshop, immediately post-workshop and one month post-workshop regarding self-assessed preparedness to handle challenging communication tasks, workshop evaluation and impact on practice. McNemar's tests were used for pre-post comparisons. RESULTS: Of 12 challenging communication tasks assessed, all participants reported improvement in at least one, with a median of 10. The proportion of participants feeling more than "somewhat prepared" improved significantly for all communication tasks assessed (p < 0.05); improvement was sustained one month later. One month post-workshop, 86% reported thinking about what they had been taught at least weekly and 93% reported encountering situations where they used their CST skills at least weekly. Rates of reported practice-changing impact were >75% for each communication skill. All participants rated the CST educational quality very good or excellent and strongly agreed it should be required of all GO clinicians. CONCLUSIONS: Participants felt the workshop provided high-quality, practice-changing education. As a result of the workshop, participants reported statistically significant, sustained improvement in preparedness to handle challenging communication tasks. CST for GO providers is feasible, with high rates of perceived effectiveness and impact on clinical practice. CST workshops should be integrated into GO training.

Implementing a Palliative Medicine Music Therapy Program: A Quality Improvement Project.

OBJECTIVES: Recent evidence suggests that music therapy, a holistic method of care, potentially is beneficial for symptom management. This quality improvement project aimed to evaluate the effect of music therapy on symptom management and coping skills of patients receiving palliative care and to measure patient satisfaction with the therapy. A secondary aim was to evaluate staff perception of patient outcomes of music therapy services. METHODS: Palliative care clinicians attended a 30-minute education session on music therapy before the project was initiated. Study participants were patients and their families who were cared for by the inpatient palliative care consulting service at Mayo Clinic (Rochester, Minnesota) from June 1 through December 31, 2016. Patients were eligible if they required ongoing management of pain and anxiety or needed adaptive coping strategies. Patients and families were asked to complete a survey after each music therapy session. Staff were asked to complete a survey after completion of the project. RESULTS: Music therapy was provided to 57 patients and 53 family members. Patient surveys indicated a decrease in anxiety and pain. All patients reported that music therapy facilitated stress relief, relaxation, pain relief, spiritual support, emotional support, and a general feeling of wellness. All participants recommended music therapy services for others. Palliative care clinicians reported that music therapy added value as a holistic service. CONCLUSIONS: In this quality improvement project, music therapy positively affected multiple domains of well-being for patients receiving palliative care.

Resurgence of Eating Disorders with Olanzapine.

BACKGROUND: Olanzapine is commonly utilized in palliative care for the treatment of nausea, and a known side effect of olanzapine is increased appetite. Olanzapine is also known to cause re-emergence of eating disorders (EDs) in patients utilizing olanzapine for its antipsychotic effects. It is unclear to what extent this may also occur in patients with serious/life-limiting illness. METHODS AND RESULTS: We present a case of a 70-year-old female with recurrent ovarian cancer and a history of bulimia nervosa (BN) that developed resurgence of her BN after initiation of olanzapine for cancer-associated nausea. Her BN resolved with reducing the dose of olanzapine. CONCLUSION: It is important to recognize that recurrence of EDs can occur when using olanzapine in the palliative care setting.

End-of-Life Care for Seriously Ill International Patients at a Global Destination Medical Center.

OBJECTIVE: To characterize the end-of-life care of all international patients who died at a global destination medical center from January 1, 2005, through December 31, 2015. PATIENTS AND METHODS: We performed a retrospective review of all adult international patients who died at a global destination medical center from January 1, 2005, through December 31, 2015. RESULTS: Eighty-two international patients from 25 countries and 5 continents died during the study period (median age, 59.5 years; 59% male). Of the study cohort, 11% (n=9) completed an advance directive, 61% (n=50) died in the intensive care unit, 26% (n=21) had a full code order at the time of death, and 73% (n=19 of 26) receiving cardiopulmonary resuscitation did not survive the resuscitation process. CONCLUSION: Seriously ill international patients who travel to receive health care in the United States face many barriers to receiving high-quality end-of-life care. Seriously ill international patients are coming to the United States in increasing numbers, and little is known about their end-of-life care. There are many unique needs in the care of this complex patient population, and further research is needed to understand how to provide high-quality end-of-life care to these patients.

Advance Care Planning in Cognitively Impaired Older Adults.

Older adults with cognitive impairment face many healthcare challenges, chief among them participating in medical decision-making about their own health care. Advance care planning (ACP) is the process whereby individuals communicate their wishes for future care with their clinicians and surrogate decision-makers while they are still able to do so. ACP has been shown to improve important outcomes for individuals with cognitive impairment, but rates of ACP for these individuals are low because of individual-, clinician-, and system-related factors. Addressing ACP early in the illness trajectory can maximize the chances that people can participate meaningfully. This article recommends best practices for approaching ACP for older adults with cognitive impairment. The importance of providing anticipatory guidance and eliciting values to guide future care to create a shared framework between clinicians, individuals, and surrogate decision-makers is emphasized. It is recommended that ACP be approached as an iterative process to continue to honor and support people's wishes as cognitive impairment progresses and increasingly threatens independence and function. The article describes effective strategies for assessing decision-making capacity, identifying surrogate decision-makers, and using structured communication tools for ACP. It also provides guidelines for documentation and billing. Finally, special considerations for individuals with advanced dementia are described, including the use of artificial hydration and nutrition, decisions about site of care, and the role of hospice care.

Palliative Care Competencies and Readiness for Independent Practice: A Report on the American Academy of Hospice and Palliative Medicine Review of the U.S. Medical Licensing Step Examinations.

CONTEXT: It is unknown whether the palliative care (PC) content tested in the U.S. Medical Licensing Examination (USMLE) step examinations reflects the consensus-developed PC competencies. OBJECTIVES: To review the USMLE step examinations to determine whether they test the PC knowledge necessary for graduating medical students and residents applying for licensure. METHODS: Eight PC physicians reviewed three complete examination forms and a focused 509-item bundle of multiple-choice questions (MCQs) identified by the USMLE content outline as potentially assessing PC content. Reviewers determined MCQs to be PC items if the patient was seriously ill and PC knowledge was required to answer correctly. PC items' competency domains were determined using reference domains from PC subspecialty consensus competencies. RESULTS: Reviewers analyzed 1090 MCQs and identified 242 (22%) as PC items. PC items were identified in each step examination. Patients in PC items were mostly males (62.8%), older than 65 years (62%), and diagnosed with cancer (43.6%). Only 6.6% and 6.2%, respectively, had end-stage heart disease or multimorbid illness. Fifty-one percent of PC items addressed ethics (31%) or communication (19.8%), focusing on patient autonomy, surrogate decision makers, or conflict between decision makers. Pain and symptom management was assessed in 28.5% of PC items, and one-third of those addressed addiction or substance use disorder. CONCLUSION: We identified PC content in each step examination. However, heart disease and multimorbidity were under-represented in PC items relative to their prevalence. In addition, there was heavy overlap with ethics, a focus on conflict in assessing communication skills, and emphasis on addiction when testing pain management. Our findings highlight opportunities to enhance testing of clinical PC skills essential for all licensed physicians practicing medicine.

The Experience of Hospital Death: Assessing the Quality of Care at an Academic Medical Center.

BACKGROUND: The quality of perimortem care received by patients who died at our hospitals was unknown. OBJECTIVE: To describe the quality of hospital care experienced in the last week of life, as perceived by decedents' families. DESIGN: Telephone survey that included established measures and investigator-developed content. SETTING: Large, tertiary care center known for high-quality, cost-effective care. PARTICIPANTS: Family members of 104 patients who died in-hospital (10% of annual deaths) over the course of 1 year. INTERVENTION: None. MEASUREMENTS: Participant perceptions of the decedent's care, including symptom management, personal care, communication, and care coordination. RESULTS: Decedents were mostly male (64%), white (96%), married (73%), and Christian (91%). Most survey participants were spouses of the decedent (68%); they were predominately white (98%), female (70%), and Christian (90%) and had a median age of 70 years (range, 35-91 years). Overall satisfaction was high. Pain, dyspnea, and anxiety or sadness were highly prevalent among decedents (73%, 73%, and 55%, respectively) but largely well managed. Most participants believed that decedents were treated respectfully and kindly by staff (87%) and that sufficient help was available to assist with medications and dressing changes (97%). Opportunities for improvement included management of decedents' anxiety or sadness (29%) and personal care (25%), emotional support of the family (57%), communication regarding decedents' illness (29%), and receiving contradictory or confusing information (33%). CONCLUSION: Despite high satisfaction with care overall, we identified important unmet needs. Addressing these gaps will improve the care of dying patients.

Dying in the Hospital: Perspectives of family members.

BACKGROUND: Although most patients express a preference to die at home, many (over 30 percent) still die in hospital. This study's purpose was to explore the experience of hospital death from the perspective of patients' family members. METHODS: interviews were conducted with family members of patients who had died at hospitals affiliated with a large tertiary referral centre in the United States. Content analysis was used to analyze findings. FINDINGS: We interviewed 30 family members by phone. Themes were arranged by time frame: before death, time of death, and after death. CONCLUSION: Families do not interpret clinical cues leading up to death in the same way healthcare providers do; families need clear and direct explanations from providers. Clinicians should assess patient and family understandings of prognosis and communicate clearly and directly. Family members value being with their loved one at the time of death, and they value spending time with the body after death; this should be facilitated in clinical practice.

Nonpharmacologic approach to fatigue in patients with cancer.

Cancer-related fatigue is a common yet underappreciated problem with a significant impact on functional ability and quality of life. Practice guidelines mandate that all cancer patients and survivors be screened for cancer-related fatigue (CRF) at regular intervals. Comorbidities that could contribute to fatigue should be treated, and patients with moderate to severe fatigue should undergo a comprehensive evaluation. Nonpharmacologic interventions are important tools to combat CRF and should be incorporated into routine practice. Physical activity, educational interventions, and cognitive-behavioral therapy have the most supportive data and can be recommended to patients with confidence. From a practical standpoint, general education on CRF is something that most care providers can readily offer patients as part of routine care. Other interventions that appear promising but are as yet lacking convincing evidence include mindfulness-based stress reduction, yoga, and acupuncture. Reiki, Qigong, hypnosis, and music therapy may be worthy of further investigation.

Nonpharmacologic approach to sleep disorders.

Sleep disturbances are common in patients with cancer, occurring throughout the disease trajectory and sometimes well after treatment has concluded. Insomnia often does not occur in isolation; it may be associated with pain, fatigue, depression, and medication usage. Screening for sleep disturbances is an essential part of caring for oncologic patients. The criterion standard for nonpharmacologic treatment of insomnia in these patients is cognitive-behavioral therapy, a multimodal approach using sleep hygiene and education, stimulus control, sleep restriction, and relaxation. Exercise and complementary and integrative medicine have been studied with varying results, and no firm recommendation can be made about their efficacy.