An Educational Needs Assessment for Outpatient Palliative Care Clinicians.

Introduction: As the field of palliative medicine continues to grow in community-based settings, outpatient palliative care clinics have become an important site for providing upstream palliative care to patients and families. It is unclear whether current training models, focused predominantly on the inpatient setting, adequately prepare clinicians for outpatient palliative care practice. Methods: We performed an online educational needs assessment survey of physicians and advanced practice providers working in outpatient palliative care clinics. Survey questions focused on the importance of specific palliative care knowledge, skills, and attitudes in outpatient practice using the Accreditation Council of Graduate Medical Education Hospice and Palliative Medicine (HPM) curricular milestones to guide survey development. We also explored clinician perception of training adequacy and current educational needs relevant to outpatient practice. Results: One hundred sixty-four clinicians, including 122 (74.4%) physicians, 32 (19.5%) nurse practitioners, and 8 (4.9%) physician assistants, completed our survey. Clinicians had a median of 10 years of HPM experience and 6 years of outpatient experience. We identified two main areas of perceived knowledge or skill deficit: navigating insurance and prior authorizations and co-management of pain and opioid use disorder. Conclusion: Addressing gaps in education and preparedness for outpatient practice is essential to improve clinician competence and efficiency as well as patient care, safety, and care coordination. This study identifies practice management and opioid stewardship as potential targets for educational interventions. The development of curricula related to these outpatient skills may improve clinicians' ability to provide safe, patient-centered care with confidence.

Palliative Chemotherapy and the Surgical Oncologist.

Outcomes are improving for patients with advanced cancer, in part because of increasing diversity and efficacy of systemic therapy, often described as "palliative chemotherapy." Patients with advanced cancer receiving systemic treatment sometimes require surgical interventions, and their cancer care teams must collaborate to optimally manage medical and surgical challenges while also considering patients' goals and values. Structured communication can overcome the inherent ambiguity of the term "palliative chemotherapy" and facilitate optimal quality of care and quality of life for patients with advanced cancer who require surgical interventions.

Teaching Effective Informed Consent Communication Skills in the Virtual Surgical Clerkship.

BACKGROUND: The disruption by the COVID-19 pandemic on undergraduate medical education allowed for assessment of virtual curricular innovations. One of the difficulties encountered in the virtual curriculum is the teaching of clinical competencies that would traditionally require students to undergo in-person simulations and patient encounters. We implemented a novel informed consent activity module, with standardized patients, to improve self-efficacy in communication within our core surgery clerkship. STUDY DESIGN: All medical students who participated in the virtual surgery clerkship were recruited to participate in a retrospective survey study regarding the novel informed consent module. These questions evaluated their perceived competence in 4 domains relating to informed consent: identifying the key elements, describing common challenges, applying the New Mexico Clinical Communication Scale (NMCCS), and documenting. RESULTS: Thirty-four of 90 students participated in the study (38% of the cohort). Respondents to the survey reported that their self-efficacy in communication skills related to informed consent improved as a result of their participation in the activity in each of the 4 domains surveyed (p < 0.01), with the majority of students identifying as satisfactory or above in each domain post-module. Students generally viewed the virtual informed consent activity positively, but noted that it was not the same as an in-person clinical experience. CONCLUSIONS: A virtual module of communication skills training, using standardized patients and faculty, improved students' belief in their self-efficacy in obtaining informed consent. This communication module can be useful in a virtual or mixed curricular structure for both current and future medical students.

End Stage Chronic Pain (ESCP): Naming Complex Suffering in the Opioid Crisis Era.

The "opioid crisis" stemming from overprescribing of prescription opioids describes an iatrogenic situation which has resulted in a rise in opioid use disorder (OUD) and overdose deaths. Many of these patients suffer from chronic non-cancer pain syndromes (CNCP) who have been injudiciously treated with opioids. Some patients with CNCP are treated successfully with opioids in accordance with modern guidelines. There is a very complex, small group of patients with CNCP who require higher than recommended dosages of opioids when other modalities and treatments have failed. We describe such a patient and believe that there is a subset of patients with unremitting suffering from chronic pain which we have called end-stage chronic pain (ESCP). These patients, despite receiving expert chronic pain care, often require high doses of opioids and suffer a dramatic decline in quality of life (QOL), function and an increase in their suffering when their opioids are tapered or discontinued. We have responded to the treatment of this group of patients by critically examining our approach to the use of opioids for their pain and attempting to reconcile high dose opioids in the setting of the Center for Disease Control (CDC) guidelines. We describe a patient with severe chronic pain from congenital spinal disease who experienced increased pain and suffering when his opioids were tapered. We will discuss our approach to this patient and in doing so discuss the concept of ESCP and proposed criteria for the use of high dose opioids in such patients.

Models of Outpatient Palliative Care Clinics for Patients With Cancer.

PURPOSE: Early integration of outpatient palliative care (OPC) benefits patients with advanced cancer and also the health care systems in which these patients are seen. Successful development and implementation of models of OPC require attention to the needs and values of both the patients being served and the institution providing service. SUMMARY: In the 2016 clinical guideline, ASCO recommended integrating palliative care early in the disease trajectory alongside cancer-directed treatment. Despite strong endorsement and robust evidence of benefit, many patients with cancer lack access to OPC. Here we define different models of care delivery in four successful palliative care clinics in four distinct health care settings: an academic medical center, a safety net hospital, a community health system, and a hospice-staffed clinic embedded in a community cancer center. The description of each clinic includes details on setting, staffing, volume, policies, and processes. CONCLUSION: The development of robust and capable OPC clinics is necessary to meet the growing demand for these services among patients with advanced cancer. This summary of key aspects of functional OPC clinics will enable health care institutions to evaluate their specific needs and develop programs that will be successful within the environment of an individual institution.

Filling the Gap: Creating an Outpatient Palliative Care Program in Your Institution.

Well-designed, randomized trials demonstrate that outpatient palliative care improves symptom burden and quality of life (QOL) while it reduces unnecessary health care use in patients with cancer. Despite the strong evidence of benefit and ASCO recommendations, implementation of outpatient palliative care, especially in community oncology settings, faces considerable hurdles. This article, which is based on published literature and expert opinion, presents practical strategies to help oncologists make a strong clinical and fiscal case for outpatient palliative care. This article outlines key considerations for how to build an outpatient palliative care program in an institution by (1) defining the scope and benefits; (2) identifying strategies to overcome common barriers to integration of outpatient palliative care into cancer care; (3) outlining a business case; (4) describing successful models of outpatient palliative care; and (5) examining important factors in design and operation of a palliative care clinic. The advantages and disadvantages of different delivery models (e.g., embedded vs. independent) and different methods of referral (triggered vs. physician discretion) are reviewed. Strategies to make the case for outpatient palliative care that align with institutional values and/or are supported by local institutional data on cost savings are included.

Patient-Clinician Communication: American Society of Clinical Oncology Consensus Guideline.

Purpose To provide guidance to oncology clinicians on how to use effective communication to optimize the patient-clinician relationship, patient and clinician well-being, and family well-being. Methods ASCO convened a multidisciplinary panel of medical oncology, psychiatry, nursing, hospice and palliative medicine, communication skills, health disparities, and advocacy experts to produce recommendations. Guideline development involved a systematic review of the literature and a formal consensus process. The systematic review focused on guidelines, systematic reviews and meta-analyses, and randomized controlled trials published from 2006 through October 1, 2016. Results The systematic review included 47 publications. With the exception of clinician training in communication skills, evidence for many of the clinical questions was limited. Draft recommendations underwent two rounds of consensus voting before being finalized. Recommendations In addition to providing guidance regarding core communication skills and tasks that apply across the continuum of cancer care, recommendations address specific topics, such as discussion of goals of care and prognosis, treatment selection, end-of-life care, facilitating family involvement in care, and clinician training in communication skills. Recommendations are accompanied by suggested strategies for implementation. Additional information is available at www.asco.org/supportive-care-guidelines and www.asco.org/guidelineswiki .

Beyond Men, Women, or Both: A Comprehensive, LGBTQ-Inclusive, Implicit-Bias-Aware, Standardized-Patient-Based Sexual History Taking Curriculum.

Introduction: This standardized-patient-based module prepares medical students to take inclusive, comprehensive sexual histories from patients of all sexual orientations and gender identities. Health disparities faced by lesbian, gay, bisexual, transgender, and queer (LGBTQ) people are at least partially the result of inadequate access to health care and insufficient provider training. This module incorporates implicit bias activities to emphasize the important role providers can play in mitigating these disparities through compassionate, competent care. Furthermore, two of the three included cases highlight the negative impact sexual dysfunction can have on emotional well-being. Methods: Over 3 hours, students participate in a 30-minute large-group lecture and three 40-minute small-group standardized patient encounters with debrief. Prework consists of a short video on sexual history taking, assigned readings, and an implicit bias activity. These materials are included in this resource, along with lecture slides, facilitator guide, and standardized patient cases. Though the cases are adaptable to all levels of medical education, this module is designed for second-year and early third-year medical students. Results: Qualitative student evaluations were positive, and postparticipation surveys revealed statistically significant improvement in comfort with their ability to take a sexual history in general, and take one from patients with a differing sexual orientation. Deployed in the second year of our Doctoring curriculum, this module continues to receive positive evaluations. Discussion: Introducing these skills begins to address the curricular deficiencies seen across medical education and lays the foundation for a more competent health care workforce to address the needs of LGBTQ patients.

Palliative Care for American Indians and Alaska Natives: A Review of the Literature.

BACKGROUND: Little is known about optimal palliative and end-of-life care for American Indians and Alaska Natives (AIs/ANs). METHODS: We searched MEDLINE, the Cochrane library, EBSCOhost, (PsycINFO, CINAHL Complete), and the University of New Mexico (UNM) Health Sciences Library and Informatics Center Native Health Database for search terms related to palliative care and AIs/ANs as of December 1, 2015. We included English language, peer-reviewed articles describing palliative care projects, programs, or studies in AI/AN populations or communities. We excluded case series, opinion or reflection pieces, and dissertations and articles addressing Pacific Islanders. RESULTS: Our search strategy yielded 294 references, of which we included 10 publications. Study methods and outcome measures were heterogeneous, and many studies were small and/or subject to multiple biases. Common themes included the importance of culturally appropriate communication, multiple barriers to treatment, and less frequent use of advance directives than other populations. CONCLUSIONS: Heterogeneity of study types, population, and small sample sizes makes it hard to draw broad conclusions regarding the best way to care for AIs/ANs. More studies are needed to assess this important topic.

Pain in cancer survivors.

Pain is a common problem in cancer survivors, especially in the first few years after treatment. In the longer term, approximately 5% to 10% of survivors have chronic severe pain that interferes with functioning. The prevalence is much higher in certain subpopulations, such as breast cancer survivors. All cancer treatment modalities have the potential to cause pain. Currently, the approach to managing pain in cancer survivors is similar to that for chronic cancer-related pain, pharmacotherapy being the principal treatment modality. Although it may be appropriate to continue strong opioids in survivors with moderate to severe pain, most pain problems in cancer survivors will not require them. Moreover, because more than 40% of cancer survivors now live longer than 10 years, there is growing concern about the long-term adverse effects of opioids and the risks of misuse, abuse, and overdose in the nonpatient population. As with chronic nonmalignant pain, multimodal interventions that incorporate nonpharmacologic therapies should be part of the treatment strategy for pain in cancer survivors, prescribed with the aim of restoring functionality, not just providing comfort. For patients with complex pain issues, multidisciplinary programs should be used, if available. New or worsening pain in a cancer survivor must be evaluated to determine whether the cause is recurrent disease or a second malignancy. This article focuses on patients with a history of cancer who are beyond the acute diagnosis and treatment phase and on common treatment-related pain etiologies. The benefits and harms of the various pharmacologic and nonpharmacologic options for pain management in this setting are reviewed.

Gender differences in the evolution of illness understanding among patients with advanced cancer.

BACKGROUND: Patient understanding of advanced metastatic disease is central to decisions about care near death. Prior studies have focused on gender differences in communication style rather than on illness understanding. OBJECTIVES: : To evaluate gender differences in terminal illness acknowledgement (TIA), understanding that the disease is incurable and the advanced stage of the disease. To evaluate gender differences in patients' reports of discussions of life expectancy with oncology providers and its effect on differences in illness understanding. METHODS: Coping with Cancer 2 patients (N = 68) were interviewed before and after a visit with their oncology providers to discuss scan results. RESULTS: At the prescan interview, there were no statistically significant gender differences in patient measures of illness understanding. At the postscan interview, women were more likely than men to recognize that their illness was incurable (Adjusted Odds Ratio, [AOR] = 5.29; P = .038), know that their cancer was at an advanced stage (AOR = 6.38; P = .013), and report having had discussions of life expectancy with their oncologist (AOR = 4.77; P = .021). Controlling discussions of life expectancy, women were more likely than men to report that their cancer was at an advanced stage (AOR = 9.53; P = .050). Controlling for gender, discussions of life expectancy were associated with higher rates of TIA (AOR = 4.65; P = .036) and higher rates of understanding that the cancer was incurable (AOR = 4.09; P = .085). CONCLUSIONS: Due largely to gender differences in communication, women over time have a better understanding of their illness than men. More frequent discussions of life expectancy should enhance illness understanding and reduce gender differences.

Making difficult discussions easier: using prognosis to facilitate transitions to hospice.

Patients with advanced cancer face difficult decisions regarding their treatment, and many will need to make difficult choices about end-of-life care because although cancer-directed therapies are increasingly available, few provide a cure. High-quality cancer care includes access to palliative care throughout the cancer care continuum, and increasing evidence suggests that timely enrollment in hospice can increase quality of life for patients dying from cancer. Therefore, clinicians must learn to recognize patients who are hospice-eligible and to develop prognostication and communication skills that enable honest provider-patient dialogue about end-of-life options. In this article, the authors review available tools for prognostication in advanced cancer and present a method for discussing prognosis by using the SPIKES acronym. In addition, by using patient-identified goals and service needs, the authors recommend a method for making a hospice referral after disclosure of poor prognosis.

Do phase 1 patients have greater needs for palliative care compared with other cancer patients?

BACKGROUND: Phase 1 oncology trial participants often are excluded from hospice. However, it is not known whether they would benefit from hospice services. The objectives of the current study were to define the palliative care needs of these patients and to determine whether their needs are greater than those of other cancer patients. METHODS: Two hundred ninety-seven patients who were undergoing cancer therapy and 69 patients who were enrolled in phase 1 trials at 7 oncology clinics in an urban cancer network were recruited and consented to participate in interviews. Interviewers assessed the prevalence and severity of 10 symptoms using the Global Distress Index of the Memorial Symptom Assessment Scale and patients' perceived need for 4 services typically provided through hospice: a chaplain, counselor, home health aide, and visiting nurse. RESULTS: Patients in the 2 groups had a similar symptom burden. However, after adjusting for Eastern Cooperative Oncology Group performance status scores, phase 1 patients were more likely to have 5 of the 10 symptoms and reported greater severity for 6 of the 10 symptoms. Compared with other patients, phase 1 patients were less likely to say they needed a home health aide (4 of 69 patients [6%] vs 198 of 297 patients [67%]), a chaplain (7 of 69 patients [10%] vs 134 of 297 patients [45%]), or a counselor (11 of 69 patients [16%] vs 160 of 297 patients [54%]; chi-square test: P<.001 for all). They were equally likely to say they needed a visiting nurse (30 of 69 patients [44%] vs 142 of 297 patients [48%]; chi-square test: P=.516). CONCLUSIONS: Compared with other patients who had cancer, patients who were participating in phase 1 trials were less likely to want several home care services, although they experienced a greater symptom burden. Further research will be needed to define the palliative care needs of this population.

Nationwide veterans affairs quality measure for cancer: the family assessment of treatment at end of life.

The Veterans Affairs (VA) health care system has created a national initiative to measure quality of care at the end of life. This article describes the first phase of this national initiative, the Family Assessment of Treatment at End of Life (FATE), in evaluating the quality of end-of-life care for veterans dying with cancer. In the initial phase, next of kin of patients from five VA Medical Centers were contacted 6 weeks after patients' deaths and invited to participate in a telephone interview, and surrogates for 262 cancer patients completed FATE interviews. Decedents were 98% male with an average age of 72 years. There was substantial variation among sites. Higher FATE scores, consistent with family reports of higher satisfaction with care, were associated with palliative care consultation and hospice referral and having a Do Not Resuscitate order at the time of death, whereas an intensive care unit death was associated with lower scores. Early experience with FATE suggests that it will be a helpful tool to characterize end-of-life cancer care and to identify targets for quality improvement.

Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations.

BACKGROUND: Uptake of genetic testing remains low, even in families with known BRCA1 and BRCA2 (BRCA1/2) mutations, despite effective interventions to reduce risk. We report disclosure and uptake patterns by BRCA1/2-positive individuals to at-risk relatives, in the setting of no-cost genetic counseling and testing. METHODS: Relatives of BRCA1/2-positive individuals were offered cost-free and confidential genetic counseling and testing. If positive for a BRCA1/2 mutation, participants were eligible to complete a survey about their disclosure of mutation status and the subsequent uptake of genetic testing by at-risk family members. RESULTS: One hundred and fifteen of 142 eligible individuals responded to the survey (81%). Eighty-eight (77%) of those surveyed disclosed results to all at-risk relatives. Disclosure to first-degree relatives (FDRs) was higher than to second-degree relatives (SDRs) and third-degree relatives (TDR) (95% vs. 78%; p < 0.01). Disclosure rates to male versus female relatives were similar, but reported completion of genetic testing was higher among female versus male FDRs (73% vs. 49%; p < 0.01) and SDRs (68% vs. 43%; p < 0.01), and among members of maternal versus paternal lineages (63% vs. 0%; p < 0.01). Men were more likely than women to express general difficulty discussing positive BCRA1/2 results with at-risk family members (90% vs. 70%; p = 0.03), while women reported more emotional distress associated with disclosure than men (48% vs. 13%; p < 0.01). DISCUSSION: We report a very high rate of disclosure of genetic testing information to at-risk relatives. However, uptake of genetic testing among at-risk individuals was low despite cost-free testing services, particularly in men, SDRs, and members of paternal lineages. The complete lack of testing among paternally related at-risk individuals and the lower testing uptake among men signify a significant barrier to testing and a challenge for genetic counselors and physicians working with high-risk groups. Further research is necessary to ensure that family members understand their risk and the potential benefits of genetic counseling.