Joshua Hauser

A strategy to advance the evidence base in palliative medicine: formation of a palliative care research cooperative group.

BACKGROUND Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping. METHODS A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care. RESULTS The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative groups success.

Feasibility and Effectiveness of the NEST13+ as a Screening Tool for Advanced Illness Care Needs

BACKGROUND A comprehensive whole-person approach might improve processes and outcomes of care for patients with cancer. OBJECTIVE To assess the ability of NEST13+ (Needs of a social nature; Existential concerns; Symptoms; and Therapeutic interaction), a screening and assessment tool, to identify social, emotional, physical, and care-system needs and to improve clinical outcomes for cancer patients in tertiary care. DESIGN, SETTING, PATIENTS A controlled trial involving 451 patients hospitalized for cancer care at a comprehensive cancer center. INTERVENTION Patients responded to 13 screening questions regarding possible care needs. When an individual response exceeded threshold levels, additional in-depth questions for the relevant need were asked. For patients in the intervention arm, clinical recommendations for each dimension of need were generated based on a previously developed NEST-response-driven menu, and were reported to the clinical team. MEASUREMENTS Documented needs, clinician response, patient perception of goals alignment, and overall quality of palliative care. RESULTS Using the NEST13+ tool in the clinical setting facilitated greater documentation of illness-related needs than routine clinical assessment. Improvement in secondary outcomes was attenuated: changes in the clinician response were modest; changes in outcomes were not significant. CONCLUSION The NEST13+ tool facilitated identification of a wider range of important needs than traditional evaluation, while care outcomes were not improved. Traditional evaluation may need improvement. Future trials of the NEST13+ should focus on more intensive clinician-directed interventions.

Navigation and palliative care

Patient navigation represents an opportunity to further the integration of palliative care with standard cancer care. This article defines palliative and hospice care and describes some of the current challenges of integrating palliative care into other forms of care. It also considers outcomes that navigation might be expected to improve for patients receiving palliative care or enrolled in hospice. These outcomes include symptom relief; communication efficacy; transitions of care; and access to palliative care, hospice, and bereavement care for families. Although these outcomes may not have been specifically assessed in patients in cancer navigation programs, they represent important outcomes for patients receiving palliative care and their families. It is recognized that the types of outcomes that are important to track for patients and families receiving palliative care should be consistent with outcomes at other stages of illness. Cancer 2011;117(15 suppl):3583–589.

Physical Pain and Emotional Suffering: The Case for Palliative Sedation

238 needed, the patient developed myoclonic jerking that disturbed her sleep. The PCA rate was decreased and oral methadone at a dose of 30 mg twice daily was added, as was oral clonazepam 250 mg 3 times daily as needed. After resolving for approximately 24 hours, the myoclonus returned with greater severity, creating increased pain with each movement. The opioid was rotated to morphine without relief of myoclonus. Intravenous midazolam was begun as an infusion of 0.5 mg/h and titrated upward with the goal of managing the myoclonic jerking. When it became clear that the dose necessary to relieve myoclonus also caused significant sedation, the palliative care team discussed the use of palliative sedation with the patient and her family. All were in agreement that this approach was reasonable. The patient spent time with her family and met with her rabbi. She indicated that she was ready to have the dose increased. At 5 mg/hour she became sedated. Because she did not appear to be in pain, as demonstrated by facial grimacing or guarding, the opioid dose was reduced. After several hours, the myoclonus gradually diminished. She died 72 hours later in apparent comfort. Tara Sanft, MD Division of Hematology-Oncology Joshua Hauser, MD Beuhler Center on Aging Northwestern University: Feinberg School of Medicine Chicago, Illinois

The Evolution and Dissemination of the Education in Palliative and End-of-Life Care Program

BACKGROUND Even with growing numbers of fellowship-trained palliative care providers, primary palliative care knowledge and skills are needed to meet the national demands for palliative care. The Education in Palliative and End-of-Life Care (EPEC) Program has been one model of training clinicians in primary palliative care skills. In our second 5 years of development and dissemination, we have focused on adapting EPEC to different specialties. OBJECTIVE Our aim was to describe the development of EPEC adaptations and document the dissemination of our curriculum. METHODS The study design was a survey of EPEC trainers and documentation of other dissemination efforts via literature and Internet searches. Our subjects were all EPEC trainers and end-learners of our curriculum. We measured dissemination and teaching efforts by our trainers and evidence of EPEC use via literature and EPECs searches. RESULTS In Internet second 5 years of active development, teaching, and dissemination, we have created five major adaptations (EPEC-Oncology, EPEC-Oncology-Canada, EPEC-Emergency Medicine, EPEC-India, and EPEC for Veterans) and trained more than 1000 trainers. Through the efforts of these Trainers and our online dissemination, more than 74,000 reported end-learners have been taught parts of the EPEC curriculum. In addition, we discovered multiple medical school courses, continuing medical education (CME), courses and specialty guidelines that have incorporated material from EPEC. CONCLUSIONS In its second 5 years, EPEC remains a robust platform for adaptation to new specialties and for dissemination of primary palliative care knowledge.

Using Implementation Science to Adapt a Training Program to Assist Surgeons with High-Stakes Communication

OBJECTIVE Surgeons often conduct difficult conversations with patients near the end of life, yet surgical education provides little formalized communication training. We developed a communication tool, Best Case/Worst Case, and trained surgeons using a one-on-one resource intensive format that was effective but difficult to scale for widespread dissemination. We aimed to generate an implementation package to teach surgeons using fewer resources without sacrificing fidelity. DESIGN, SETTING, AND PARTICIPANTS We used the Replicating Effectiveness Programs framework to guide our implementation strategy and tested our intervention with 39 surgical residents at 4 institutions from September 2016 to June 2017. The implementation package consisted of: (1) instructional video, (2) checklist to assess competence, (3) learner manual, and (4) instructor manual. We focused on 3 implementation outcomes: feasibility, fidelity, and acceptability to participants. RESULTS Attendance rates ranged from 16% to 75%. Site leaders had little difficulty identifying suitable instructors; however, resident recruitment proved challenging. Sixty-nine percent of residents completed the post-training assessment and the mean score was 12.8 (range 8-15) using the 15-point checklist. Across sites, 69% strongly agreed that Best Case/Worst Case is better than how they usually approach high-stakes conversations and 100% felt prepared to use the tool after training. Instructors reported that the training provided residents with the necessary skills to perform the fundamental elements of Best Case/Worst Case. CONCLUSIONS Using implementation science we demonstrated that a resource intensive communication training intervention can be successfully modified for group-learning and wide-scale dissemination. However, we identified barriers to implementation, including challenges with feasibility and programmatic buy-in that inform not only resident education but also communication skills training more broadly.

Communication in heart failure and palliative care

Communicating difficult information is an essential skill for clinicians of every specialty. The clinical complexity of the heart failure disease process lends itself to important opportunities to determine patient preferences about medical decisions and share information about prognosis. Nevertheless, traditionally most communication between clinicians and patients with heart failure has focused primarily on pathophysiology and treatment options. Studies indicate that patients and families wish to engage with their cardiologists in advance care planning and, when appropriate, end-of-life decision-making. Critical to whole-person care, this review describes several important communication strategies that enhance patient and family support through the inevitable rises and falls of progressive heart failure.

Palliative Care Communication Issues

Difficult conversations for patients and families can be challenging for physicians and other healthcare providers as well. Optimal preparation for conversations about bad news, prognosis, goals of care, and hospice can make them more effective and less of a burden. The SPIKES strategy can assist in preparing and implementing these difficult conversations with patients and families. Effective communication can be made a priority by addressing issues proactively with colleagues.