Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit.

BACKGROUND: The engagement of family caregivers in oncology is not universal or systematic. OBJECTIVE: We implemented a process intervention (ie, patient-caregiver portal system) with an existing patient portal system to (1) allow a patient to specify their caregiver and communication preferences with that caregiver, (2) connect the caregiver to a unique caregiver-specific portal page to indicate their needs, and (3) provide an electronic notification of the dyad's responses to the care team to inform clinicians and connect the caregiver to resources as needed. METHODS: We assessed usability and satisfaction with this patient-caregiver portal system among patients with cancer receiving palliative care, their caregivers, and clinicians. RESULTS: Of 31 consented patient-caregiver dyads, 20 patients and 19 caregivers logged in. Further, 60% (n=12) of patients indicated a preference to communicate equally or together with their caregiver. Caregivers reported high emotional (n=9, 47.3%), financial (n=6, 31.6%), and physical (n=6, 31.6%) caregiving-related strain. The care team received all patient-caregiver responses electronically. Most patients (86.6%, 13/15 who completed the user experience interview) and caregivers (94%, 16/17 who completed the user experience interview) were satisfied with the system, while, of the 6 participating clinicians, 66.7% agreed "quite a bit" (n=1, 16.7%) or "very much" (n=3, 50%) that the system allowed them to provide better care. CONCLUSIONS: Our findings demonstrate system usability, including a systematic way to identify caregiver needs and share with the care team in a way that is acceptable to patients and caregivers and perceived by clinicians to benefit clinical care. Integration of a patient-caregiver portal system may be an effective approach for systematically engaging caregivers. These findings highlight the need for additional research among caregivers of patients with less advanced cancer or with different illnesses.

Hematology/Oncology Fellows' Training in Palliative Care: A Narrative Review.

Palliative care (PC) education is a vital and required part of hematology-oncology fellows' education to build PC skills, attitudes, and knowledge. However, previous research has shown that education in PC is inadequate. This narrative review of the literature on primary PC education during hematology-oncology fellowship programs aims at identifying the current state of PC education, existing gaps, and potential future directions for improving PC education. Fourteen articles were identified and reviewed. The types of articles included trainee and program leadership responses, and interventions designed to improve PC education. Results from each study are reported. Overall, trainees and program leadership rate current PC education as varied, often inadequate, and in need of improvement. Educational interventions show that some form of PC education increases perceived knowledge and confidence in PC skills. Future studies are needed to develop the most effective and impactful educational models.

A Pilot Study of a Collaborative Palliative and Oncology Care Intervention for Patients with Head and Neck Cancer.

Background: Palliative care improves symptoms and coping in patients with advanced cancers, but has not been evaluated for patients with curable solid malignancies. Because of the tremendous symptom burden and high rates of psychological distress in head and neck cancer (HNC), we evaluated feasibility and acceptability of a palliative care intervention in patients with HNC receiving curative-intent chemoradiation therapy (CRT). Methods: This was a prospective single-arm study in HNC patients receiving CRT at a single center in the United States. The intervention entailed weekly palliative care visits integrated with oncology care with a focus on symptoms and coping. The primary outcome was feasibility, defined as a >50% enrollment rate with >70% of patients attending at least half of the visits. To assess acceptability, we collected satisfaction ratings post-intervention. We also explored symptom burden, mood, and quality of life (QOL). Results: We enrolled 91% (20/22) of eligible patients. Patients attended 133 of 138 palliative care visits (96%); all 20 attended >85% of visits. Eighteen of 19 (95%) found the intervention "very helpful" and would "definitely recommend" it. QOL and symptom burden worsened from baseline to week 5, but subsequently improved at one-month post-CRT. Overall, patients valued the one-on-one format of the intervention and receipt of additional care. Conclusions: Our palliative care intervention during highly morbid CRT was feasible and acceptable with high enrollment, excellent intervention compliance, and high patient satisfaction. Future randomized studies will further explore the impact on patient-reported outcomes and health care utilization.

Developing an Integrated Caregiver Patient-Portal System.

We have developed an integrated caregiver patient-portal system (i.e., patient-caregiver portal) that (1) allows a patient to identify their primary caregiver and their communication preferences with that caregiver in the healthcare setting; (2) connects the caregiver to a unique portal page to indicate their needs; and (3) informs the healthcare team of patient and caregiver responses to aid in integrating the caregiver. The purpose of this manuscript is to report on the formative phases (Phases I and II) of system development. Phase I involved a pre-assessment to anticipate complexity or barriers in the system design and future implementation. We used the non-adaption, abandonment, scale-up, spread, and sustainability (NASSS) framework and rubric to conduct this pre-assessment. Phase II involved exploring reactions (i.e., concerns or benefits) to the system among a small sample of stakeholders (i.e., 5 palliative oncology patients and their caregivers, N = 10). The purpose of these two phases was to identify system changes prior to conducting usability testing among patient/caregiver dyads in palliative oncology (phase III). Completion of the NASSS rubric highlighted potential implementation barriers, such as the non-uniformity of caregiving, disparities in portal use, and a lack of cost-benefit (value) findings in the literature. The dyads' feedback reinforced several NASSS ratings, including the benefits of connecting caregivers and allowing for caregiver voice as well as the concerns of limited use of patient-portals by the patients (but not the caregivers) and the need for user assistance during stressful health events. One change that resulted from this analysis was ensuring that we provided research participants (users) with detailed guidance and support on how to log in and use a patient-caregiver portal. In future iterations, we will also consider allowing more than one caregiver to be included and incorporating additional strategies to enable caregivers to interact in the system as part of the care team (e.g., via email).

Gastrostomy Tube for Nutrition and Malignant Bowel Obstruction in Patients With Cancer.

BACKGROUND: Gastrostomy tubes (G-tubes) are invaluable clinical tools that play a role in palliation and nutrition in patients with cancer. This study aimed to better understand the risks and benefits associated with the placement and maintenance of G-tubes. METHODS: Patients who underwent placement of a G-tube for cancer from January 2013 through December 2017 at a tertiary care center were considered for inclusion. Clinical data were retrospectively collected from medical records. RESULTS: A total of 242 patients with cancer, whose average age at diagnosis was 61 years (range, 21-94 years), underwent G-tube placement for nutrition (76.4%), decompression (22.7%), or both (0.8%). Successful insertion was achieved in 96.8%, but 8 patients required >1 attempted method of insertion. In the decompression group, minor postplacement complications were less common (23.6% vs 53.5%; P<.001) and survival was shorter (P<.001) compared with the nutrition group. For those with decompressive G-tubes, 45.5% had a palliative care consult; 56.4% were seen by social workers; and 46.3% went to hospice. The frequency of hospice discharge was higher in patients who had consults (53.7% vs 23.1%; P=.01). CONCLUSIONS: Half of the patients who received decompressive G-tubes presented with stage IV disease and died within 1 month of placement. Those with >1 consult were more likely to be discharged to hospice. Patients with G-tubes for nutrition saw no change in functionality, complication rate, or survival, regardless of adjunct chemotherapy status. These findings illustrate the need for a tool to allow a better multidisciplinary approach and interventional decision-making for patients with cancer.

Palliative Care Clinicians' Perspectives of an Integrated Caregiver Patient-Portal System in Oncology.

Background: Despite recommendations and policies to integrate family caregivers into U.S. healthcare settings, caregivers are not systematically involved. Thus, we developed an Integrated Caregiver Patient-Portal system that (1) allows a patient to identify their primary caregiver and their communication preferences; (2) connects the caregiver to a unique portal page to indicate their needs; and 3) informs the care team of dyad responses to aid in integrating the caregiver. Objective: This formative research explored palliative care clinicians' perceptions of the system to inform refinements before usability testing. Methods: We conducted two focus groups with palliative care clinicians (N=11) at an NCI-designated cancer center. Transcripts were analyzed using an integrated approach to specify system benefits and concerns. Results: The most referenced benefits included: Learning information that they might not have known without the system; giving caregivers a voice or a way to express needs; and supporting an ideal model of care. Top concerns included lacking capacity to respond; needing to clarify clinician roles and expertise in responding to caregivers' needs; and ensuring ongoing system adaptability. Conclusions: The clinicians' feedback resulted in revisions including: (1) modifying the caregiver questions; (2) integrating social workers in the response; and (3) adding a text-based report to the care team. Implications for Practice: This formative research provided valuable feedback for portal development, and also contributes more broadly to recommendations related to integrating caregivers in healthcare. Foundational: This research provides practical and logistical relevance to the discussion on how to integrate caregivers into clinical care.

Distress Management, Version 3.2019, NCCN Clinical Practice Guidelines in Oncology.

Distress is defined in the NCCN Guidelines for Distress Management as a multifactorial, unpleasant experience of a psychologic (ie, cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. Early evaluation and screening for distress leads to early and timely management of psychologic distress, which in turn improves medical management. The panel for the Distress Management Guidelines recently added a new principles section including guidance on implementation of standards of psychosocial care for patients with cancer.

Communication Challenges at the Crossroads of Oncology and Palliative Care: Finding a Way Forward When Clinicians Differ on Prognosis.

In this article, we present a dialogue between a junior and a seasoned palliative care attending on approaching situations in which clinicians have differing opinions about patients' prognoses. In such situations, we may find a way forward by identifying common ground and exploring patients' and clinicians' values. Specifically, we can ask what constitutes a reasonable quality of life for our patients, and we can explore our colleagues' hopes, worries, and values using familiar communication techniques. Ultimately, we can support and align with both our patients and colleagues and work toward reframing a difficult situation.

Sex and menstrual cycle effects on chronic oral cocaine self-administration in rhesus monkeys: Effects of a nondrug alternative reward.

BACKGROUND: In previous studies, female monkeys self-administered more oral phencyclidine (PCP) than males, and PCP intake differed by phase of menstrual cycle. OBJECTIVES: The purpose of this study was to examine sex and hormonal influences on oral cocaine self-administration in male and female rhesus monkeys in the follicular vs. luteal phases of the menstrual cycle, with concurrent access to an alternative nondrug reward, saccharin (SACC) vs. water. MATERIALS AND METHODS: Concurrent access to cocaine (0.2, 0.4, and 0.8 mg/ml) and SACC or water was available from two drinking spouts under concurrent fixed-ratio (FR) 2, 4, and 8 schedules during daily 3-h sessions. RESULTS: Cocaine deliveries were similar in males and females in the females' luteal phase, but cocaine deliveries were higher in females during the follicular phase than the luteal phase and compared to males. When SACC was available, cocaine deliveries were reduced in females in the follicular phase of the cycle, and cocaine intake (mg/kg) was reduced in males and in females' follicular and luteal phases. CONCLUSIONS: Access to concurrent SACC (vs. water) reduced cocaine intake (mg/kg) in males and in females during both menstrual phases, and the magnitude of the reduction in cocaine intake was greatest during the females' follicular phase. Thus, a nondrug alternative reward, SACC, is a viable alternative treatment for reducing cocaine's rewarding effects on male and female monkeys, and reductions in cocaine seeking were optimal in the females' luteal phase.

On the prospects for a blame-free medical culture.

Official policy-making bodies and experts in medical error have called for a shift in perspective to a blame-free culture within medicine, predicated on the basis that errors are largely attributable to systems rather than individuals. However, little is known about how the lived experience of blame in medical care relates to prospects for such a shift. In this essay we explore the benefits and costs of blame in medical culture. Our observations are informed by our clinical experience and supported by interview data from a study in which 163 American physicians were interviewed about caring for a total of 66 dying patients in two institutions. We observe three ways in which blame is invoked: (1) self-blame, (2) blame of impersonal forces or the "system," and (3) blame of others. Physicians articulate several important functions of blame: as a stimulus for learning and improvement; as a way to empathically allow physicians to forgive mistakes when others accept responsibility using self-blame; and as a way to achieve control over clinical outcomes. We argue that, since error is viewed as a personal failing and tends to evoke substantial self-blame, physicians do not tend to think of errors in a systems context. Given that physicians' ideology of self-blame is ingrained, accompanied by benefits, and limits a systems perspective on error, it may subvert attempts to establish a blame-free culture.

Crying: experiences and attitudes of third-year medical students and interns.

BACKGROUND: The medical socialization process is emotionally stressful for trainees; anecdotally, crying is a frequent response. PURPOSES: To understand the experiences and attitudes related to crying among 3rd-year medical students and interns. METHODS: Web-based survey distributed to all 3rd-year medical students and interns at two medical schools and affiliated internal medicine residency programs. RESULTS: Participation rates were 208/307 (68%) students and 93/126 (74%) interns. Sixty-nine percent of students and 74% of interns self-reported crying for reasons related to medicine. For both, the most common cause was "burnout." Although there were no significant differences in crying between students and interns (p =.38), twice as many women cried as men (93% vs. 44%, p <.001). Seventy-three percent of students and 68% of interns thought discussion of physicians' crying was inadequate. CONCLUSIONS: Crying is common among medical students and interns, especially women. Many consider it unprofessional to cry in front of patients and colleagues. Trainees want more discussions of crying.

Are depressed patients more likely to share health care decisions with others?

OBJECTIVES: To determine whether psychological variables, particularly depression, influence patients' willingness to share medical decisions with family members or friends. DESIGN: Cross-sectional interviews. SETTING: Oncology and general geriatrics outpatient clinics of an urban VA medical center. PARTICIPANTS: Ninety-five patients with a Charlson comorbidity index score greater than 5. MEASUREMENTS: Subjects described the way that they make health care decisions with friends or family as a dichotomous variable ("shared" versus "not shared") and as a 5-point ordinal variable (the degree to which they share decisions). Patients also completed the 15-item version of the Geriatric Depression Scale (GDS), the Global Distress Index of the Memorial Symptom Assessment Scale, and selected tests of cognitive function and health literacy. RESULTS: Patients with a GDS score higher than 5 were more likely to share decision-making (16/26 versus 26/69; odds ratio 2.58; p = 0.040), as were patients who were married (23/35 versus 19/60; odds ratio 3.63; p = 0.001). In multivariable regression models, a short form GDS score higher than 5 was independently associated with a willingness to share decision with others. CONCLUSION: These results suggest that depression may have a clinically significant influence on patients' willingness to share health care decisions with others. Health care providers should be alert to this possibility, particularly when the decision at hand is significant.

The worsening Medicaid fiscal crisis. Implications for hospitals.

Medicaid, the nation's health care safety net, has come under increasing pressure as most state governments face a fiscal crisis. Cutbacks in funding that decrease already inadequate reimbursement, the tightening of eligibility, and a reduction of benefits will lead to an increase in the under- and uninsured, further straining the ability of hospitals to remain solvent and provide care to this vulnerable population. The federal government must increase funding to the Medicaid program and the Medicaid hospital disproportionate share while state governments must continue a level of funding that will not cause a loss of federal matching funds. Both state and federal governments must be held accountable for providing the necessary financial support to providers through the Medicaid program so that they can continue to serve their nearly 51 million poor, disabled, and elderly patients.