Detecting goals of care conversations in clinical notes with active learning.

OBJECTIVE: Goals of care (GOC) discussions are an increasingly used quality metric in serious illness care and research. Wide variation in documentation practices within the Electronic Health Record (EHR) presents challenges for reliable measurement of GOC discussions. Novel natural language processing approaches are needed to capture GOC discussions documented in real-world samples of seriously ill hospitalized patients' EHR notes, a corpus with a very low event prevalence. METHODS: To automatically detect sentences documenting GOC discussions outside of dedicated GOC note types, we proposed an ensemble of classifiers aggregating the predictions of rule-based, feature-based, and three transformers-based classifiers. We trained our classifier on 600 manually annotated EHR notes among patients with serious illnesses. Our corpus exhibited an extremely imbalanced ratio between sentences discussing GOC and sentences that do not. This ratio challenges standard supervision methods to train a classifier. Therefore, we trained our classifier with active learning. RESULTS: Using active learning, we reduced the annotation cost to fine-tune our ensemble by 70% while improving its performance in our test set of 176 EHR notes, with 0.557 F1-score for sentence classification and 0.629 for note classification. CONCLUSION: When classifying notes, with a true positive rate of 72% (13/18) and false positive rate of 8% (13/158), our performance may be sufficient for deploying our classifier in the EHR to facilitate bedside clinicians' access to GOC conversations documented outside of dedicated notes types, without overburdening clinicians with false positives. Improvements are needed before using it to enrich trial populations or as an outcome measure.

Advanced Practice Provider Model for Urgent Oncology Care.

Inherent to the cancer disease trajectory are heightened risks for a plethora of comorbid diagnoses. As the treatment landscape for oncology therapeutics continues to rapidly advance, patients are living longer and potentially experiencing more symptoms requiring rapid assessment. Prompt assessment and intervention for cancer or cancer treatment-related symptoms is imperative to achieve patient comfort and obtain the best overall patient outcomes. Traditionally, these patients were frequently referred to the emergency department (ED) when same-day clinic appointments were not obtainable. In order to decrease ED utilization and provide same-day urgent care for oncology patients, the Abramson Cancer Center established an advanced practice provider-led Oncology Evaluation Center where cancer patients are able to receive same-day assessment, symptom relief, and ultimately prevent unnecessary ED visits.

Clinician-Patient Relationships in Virtual Care: A Dimensional Analysis of the Symbolic World of Cancer Care.

Rapid uptake of telehealth technologies has shifted clinician-patient relationships, a well-studied topic of sociological inquiry. The purpose of this dimensional analysis study was to understand the symbolic interaction of clinicians and patients within virtual supportive cancer care. Seventeen clinicians, eighteen patients, and three care partners receiving or providing care at a multi-site cancer center in the United States participated in interviews. Our analysis of supportive cancer care experiences reveals a key tension: clinicians need to rely on patients in order to share clinical tasks in a virtual care setting but can be reluctant to do so. We posit that dimming the light on cancer is a process that enables clinicians to overcome their reluctance to engage in clinician-patient task sharing by strengthening the relationship. Taken together, these findings reconceptualize the symbolic interaction of the clinician-patient relationship and highlight opportunities to actualize models of relationship-centered virtual care. We discuss implications for clinical practice, ethical relational care, and the literature on clinician-patient relationships and trust.

Caregiver Perspectives on the Benefits, Burdens, and Moral Distress of Participation in Cancer Clinical Trials.

Caregivers often face critical decisions, burdens, and perceived benefits related to a loved one participating in cancer clinical trial (CCTs). The purpose of this analysis was to better understand caregivers' perceptions on the benefits and burdens of participation in cancer clinical trials. Using a qualitative descriptive design, interviews with 20 caregivers of patient-participants from a larger parent study were conducted. Three major themes emerged. The benefits of research participation focused on enhancing the potential for saving a loved one's life, improving quality of life, and holding altruistic intentions. The burden of research participation emphasized a loved one's suffering as well as physical, emotional, logistical, and financial burden to caregivers. Caregiver moral distress highlighted distressing ethical encounters, such as making decisions on research participation and navigating suboptimal care. Understanding caregiver perceptions is an important step in designing future CCTs that minimize burdens and maximize patient and caregiver health and family-centered care.

The impact and implications of virtual supportive cancer care during the COVID-19 pandemic: integrating patient and clinician perspectives.

PURPOSE: Many cancer centers made rapid shifts in supportive care delivery modalities at the onset of the COVID-19 pandemic. Improving virtual supportive cancer care requires deeply understanding both patient's and clinician's experiences. We aimed to integrate the perspectives of clinicians and patients to describe the transition to virtual supportive cancer care during COVID-19. METHODS: In clinical-academic partnership between a multi-site cancer care center in the Northeastern USA and a school of nursing, we conducted a study using dimensional analysis method. Theoretical sampling drove recruitment of patients and clinicians who engaged in virtual supportive cancer care from March 15, 2020 to December 15, 2020. In this sub-analysis, we coded the dimensional analysis data from semi-structured interviews using a descriptive approach with inductive conventional content analysis. RESULTS: We interviewed 17 clinicians, 18 patients, and 3 care partners about their experiences. We integrate patient and clinician perspectives in four in vivo categories: "When COVID hit," "Not an IT expert," "Those little moments," and "The mothership." CONCLUSION: The findings uncover shared patient and clinician fears of missing or sub-optimal care at the onset of COVID-19, technological and relational challenges to engaging in care, and the mixed impacts of virtual care on access, convenience, and efficiency. This analysis suggests concrete action items to improve virtual supportive care for patients and clinicians. The findings corroborate the importance of convenience, access, and efficiency as care quality indicators and suggest potential to emphasize the clinician-patient relationship as an additional indicator of care quality.

Palliative care delivery changes during COVID-19 and enduring implications in oncology nursing: a rapid review.

PURPOSE OF REVIEW: A rapid review was conducted to synthesize evidence of palliative care delivery changes during the COVID-19 pandemic. Changes were synthesized according to the eight domains of high-quality palliative care and enduring implications for oncology nurses beyond the pandemic discussed. RECENT FINDINGS: The most significant changes occurred in the structure and processes of palliative care (Domain 1), where increased utilization of telehealth was critical in circumventing barriers imposed by COVID-19 mitigation. The suboptimal availability of community-based psychosocial supports for patients and caregivers and inadequate health system-based psychosocial supports for healthcare providers were highlighted (Domains 3-5). The pandemic also ushered in an increased emphasis on the need for advance care planning (ACP), where integrating its delivery earlier in the outpatient setting and shifting policy to promote subsequent virtual documentation (Domain 8) were essential to ensure care preferences were clarified and accessible before health crises occurred. SUMMARY: Continuing to embrace and sustain systems-level changes with respect to telehealth, psychosocial supports, and ACP are critical to bridging gaps in palliative care delivery underscored by the pandemic. Oncology nurses are well positioned to fill these gaps in care beyond the pandemic by providing evidence-based, palliative care throughout the cancer continuum.

Clinician distress in seriously ill patient care: A dimensional analysis.

BACKGROUND: Caring for patients with serious illness may severely strain clinicians causing distress and probable poor patient outcomes. Unfortunately, clinician distress and its impact historically has received little attention. RESEARCH PURPOSE: The purpose of this article was to investigate the nature of clinician distress. RESEARCH DESIGN: Qualitative inductive dimensional analysis. PARTICIPANTS AND RESEARCH CONTEXT: After review of 577 articles from health sciences databases, a total of 33 articles were eligible for analysis. ETHICAL CONSIDERATIONS: This study did not require ethical review and the authors adhered to appropriate academic standards in their analysis. FINDINGS: A narrative of clinician distress in the hospital clinician in the United States emerged from the analysis. This included clinicians' perceptions and sense of should or the feeling that something is awry in the clinical situation. The explanatory matrix consequence of clinician distress occurred under conditions including: the recognition of conflict, the recognition of emotion, or the recognition of a mismatch; followed by a process of an inability to feel and act according to one's values due to a precipitating event. DISCUSSION: This study adds three unique contributions to the concept of clinician distress by (1) including the emotional aspects of caring for seriously ill patients, (2) providing a new framework for understanding clinician distress within the clinician's own perceptions, and (3) looking at action outside of a purely moral lens by dimensionalizing data, thereby pulling apart what has been socially constructed. CONCLUSION: For clinicians, learning to recognize one's perceptions and emotional reactions is the first step in mitigating distress. There is a critical need to understand the full scope of clinician distress and its impact on the quality of patient-centered care in serious illness.

Experiences of Patients After Withdrawal From Cancer Clinical Trials.

Importance: Cancer clinical trials (CCTs) provide patients an opportunity to receive experimental drugs, tests, and/or procedures that can lead to remission. For some, a CCT may seem like their only option. Little is known about experiences of patient-participants who withdraw or are withdrawn from CCTs. Objective: To examine patient-participants' experiences during withdrawal from CCTs. Design, Setting, and Participants: This qualitative, descriptive study used a semistructured interview designed specifically for it, with open-ended and probing questions. The study took place at a National Cancer Institute-designated comprehensive cancer center affiliated with the University of Pennsylvania. The need for a sample of 20 interviewees was determined by code and meaning saturation (ie, no new themes revealed and identified themes fully elaborated). Interviews were transcribed verbatim and analyzed with a qualitative software program. Data coded with the software were refined into categories reflecting broad themes. A criterion-based sampling approach was used to select a subset of adult patients with cancer who were former CCT participants and who agreed on exit from those CCTs to a later interview about withdrawal experiences. They were contacted one by one by telephone from September 2015 through June 2019 until 20 agreed. Data analysis was completed in October 2020. Main Outcomes and Measures: Themes characterizing patient-participants' perceptions of their withdrawal experiences. Results: Respondents' mean (SD) age was 64.42 (8.49) years; 12 (63.2%) were men. Most respondents were White (18 respondents [94.7%]) and college educated (11 respondents [55.0%]). Cancer stage data were available for 17 participants, 11 of whom (64.7%) had stage IV cancer at CCT enrollment. Thirteen respondents reported withdrawal as a result of disease progression, and 5 withdrew because of adverse effects. Other reasons for withdrawal included acute illness and participant uncertainty about the reason. Analysis of interview data yielded 5 themes: posttrial prognostic awareness, goals of care discussions, emotional coping, burden of adverse effects, and professional trust and support. Subthemes included regrets or hindsight, urgency to start next treatment, and weighing benefits and burdens of treatment. Limited discussions about patient-participants' immediate posttrial care needs left many feeling that there was no clear path forward. Conclusions and Relevance: Patient-participants transitioning from a CCT described feeling intense symptoms and emotions and awareness that their life span was short and options seemed to be limited. Communication that includes attention to posttrial needs is needed throughout the CCT to help patient-participants navigate posttrial steps. Research should focus on components of responsible and ethical CCT transitions, including types and timing of discussions and who should begin these discussions with patient-participants and their families.

Blueprint for a Palliative Advanced Practice Registered Nurse Fellowship.

Opportunities for advanced practice registered nurses (APRNs) to train for specialty palliative care practice are insufficient to meet workforce needs. Graduate nursing programs in the United States do not have uniform or required curricula in palliative and end-of-life care of the seriously ill. In clinical practice, APRNs acquire palliative care skills by a mix of on-the-job experience, self-study, and continuing education. While physician colleagues can pursue post-residency training in one of 156 accredited hospice and palliative medicine fellowships, there are fewer than a dozen fellowships for APRNs, each training between one and three nurse fellows for specialty palliative care practice. This disparity slows the pipeline of palliative nursing experts and leaders, taxes employers with significant training duties, and results in an APRN workforce without uniform training. There are grass roots initiatives-often by non-nursing educators-to adapt existing physician and interprofessional fellowships for nurse learners, both in palliative care and other specialties. While these efforts help meet staffing needs and promote interprofessionalism, these programs are built upon medical curricula and competencies rather than grounding from a nursing framework. Nursing fellowship directors may not have the same administrative support, protected nonclinical time, funding, or access to nursing mentors and faculty afforded to their medical counterparts. This article provides a blueprint for clinician educators from nursing or non-nursing disciplines, who want to develop or refine training programs for APRNs that adhere to palliative nursing standards and offer a curriculum integrated with supervised practice and mentorship.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients with Hematologic Malignancies.

Hematologic malignancies differ in several important ways from solid organ cancers, and warrant a unique approach to palliative care (PC) integration. As PC has moved upstream from end-of-life care, PC clinicians are increasingly asked to see patients with hematologic malignancies. Unfortunately, many PC specialists have limited knowledge of these diseases, and have had few prior opportunities to participate in their care. This article, written by hematologic oncologists and PC specialists, seeks to educate PC teams about the unique features of hematologic malignancies, to inform effective integration of PC into the care of these patients, their caregivers, and treating hematologists.

Opioids and Cancer Pain Management in the United States: Public Policy and Legal Challenges.

OBJECTIVE: To review current opioid guidelines, public policy, and legal challenges that can threaten optimal management of cancer pain. DATA SOURCES: National guidelines, professional web sites, journal articles, essays. CONCLUSION: Recent opioid legislation and increasing scrutiny from regulatory agencies have created multiple barriers for providers and patients to achieve pain control. These challenges include prescription limitations and practitioner fear of litigation, which can result in the under-prescribing or refusal to prescribe opioids. IMPLICATIONS FOR NURSING PRACTICE: To provide excellent care, nurses must understand current policies affecting delivery of pain care to oncology patients and serve as patient advocates in the evolving policy debates.

Palliative Care Office Hours for Patients with Hematologic Malignancies: An Innovative Model for Symptom Management and Education.

BACKGROUND: Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. OBJECTIVES: To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. METHODS: A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. RESULTS: Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p < 0.001) with an increase in consults for goals of care. CONCLUSION: Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.

The global state of palliative care-progress and challenges in cancer care.

All persons have a right to palliative care during cancer treatment and at the end-of-life. The World Health Organization (WHO) defines palliative care as a medical specialty that addresses physical, psychological, social, legal, and spiritual domains of care by an interdisciplinary team of professional and lay health care providers. Widespread adoption of this universal definition will aid policy development and educational initiatives on a national level. The need for palliative care is expanding due to the aging of the world's population and the increase in the rate of cancer in both developed and developing countries. However, in one third of the world there is no access to palliative care for persons with serious or terminal illness. Palliative care improves symptoms, most frequently pain, and improves quality of life for patients and their families, especially in the terminal disease phase. Accessibility to palliative care services, adequately trained health care professionals, availability of essential medicines, and gaps in education vary greatly throughout the world. Pain management is an integral concept in the practice of palliative care; however, opioiphobia, insufficient supply of opioids, and regulatory restrictions contribute to undue suffering for millions. Ongoing advocacy efforts call for increased awareness, palliative care integration with cancer care, and public and professional education. Enacting necessary change will require the engagement of health ministries and the recognition of the unique needs and resources of each country. The aim of this review is to examine progress in palliative care development and explore some of the barriers influencing cancer care across the globe.