Primary Palliative Research Articles

Integrating the Comfort Theory™ Into Pediatric Primary Palliative Care to Improve Access to Care.

Primary palliative care improves access to symptom control and quality-of-life care for children and families and can reduce moral distress in clinicians. This article describes the application of a nursing theory framework for an evidence-based practice/quality improvement project that embedded pediatric primary palliative care into a hospital-based setting using unit-specific projects. An evidence-based practice/quality improvement project, guided by the Comfort Theory™, provided primary palliative care education and mentorship to improve knowledge, skills, and attitudes of direct care clinicians. Training consisted of didactic and self-directed learning, mentoring, and completion of unit-based projects to establish meaning and impact best practices and policies. A total of 149 direct care clinicians, comprising 3 cohorts, enrolled in the program. Improvements in interdisciplinary collaboration in care were demonstrated through 21 unit-based projects, the development of triggers for specialty palliative care consults in several high-risk populations, and the development of institutional guidelines for end-of-life care. The Comfort Theory™ guided integration of palliative care for children with serious illness and their families. This project empowered direct care clinicians in caring for patients, providing support to clinical staff, and in developing best practices.

Effects of a Primary Palliative Care Educational System for Teaching Learners at Different Levels of Training.

Interest and appreciation for palliative care (PC) has resulted in increased demand for both PC services and education. The PC rotation has been shown to improve PC knowledge in medical students (MS) and internal medicine (IM) residents, and PC specialists stand poised to direct the primary PC education of learners at different levels of training. To concurrently teach learners of different levels of training on a busy PC service, we created an educational system that emphasizes management of learner schedules, organization of teaching activities, faculty development to improve teaching skills, and learner self-evaluation. Both MS and IM residents showed an improvement in self-assessed competence as well as increased comfort level with seriously ill patients after PC rotation. Careful adjustment of learner schedules has accommodated an increasing number of learners, while maintaining a low learner to faculty ratio. The PC educators face an exciting and daunting challenge as the number of patients with PC needs and the number of learners requesting PC experience grow. We continue to improve milestone-based PC assessment tools, to invest in faculty development, and to explore innovative ways to support PC educators as they strive to provide consistent PC education that is both useful for learners and can be incorporated into busy PC clinical practice.

Interdisciplinary Teams and Home-Based Medical Care: Secondary Analysis of a National Survey

ObjectivesThe objective of this study was to describe the use of interdisciplinary teams (IDTs) in home-based medical care practices. DesignWe performed a secondary data analysis using results from the 2013 National Home-Based Primary Care and Palliative Care Network survey of home-based medical care (HBMC) practices. Setting and ParticipantsTwo hundred forty-six unique HBMC practices were included in this study. MethodsDescriptive statistics and frequency distributions were generated on the sample characteristics, practice IDT configurations, and routine use of IDT meetings. Associations between practice characteristics, IDT configuration, and routine use of IDT meetings were analyzed using bivariate analyses and logistic regression. ResultsSixty percent of practices held routinely scheduled IDT meetings. Most practices that used IDTs reported meeting weekly (42.2%) or monthly (26.5%). The most common practice team configurations included billing providers without teams (45.9%), billing providers with both a care coordinator and nurse (23.7%), then practices with either a billing provider and nurse (14.9%) or a billing provider with a care coordinator (14.2%). Practices that conducted regular IDT meetings were more likely to be a group practice rather than solo practice (59% vs 45%, P = .03), be owned or sponsored by a primary hospital or health system rather than an independent practice (23% vs 12%, P = .03), be financially subsidized by a hospital or health system rather than be independently financed (17% vs 6%, P = .01), be affiliated with an academic institution rather than not (30% vs 16%, P = .01), and be a not-for-profit vs for-profit entity (30% vs 17% P = .03). Conclusions and ImplicationsThere is substantial diversity in IDT integration in HBMC practices. Routine IDT care in HBMC will improve care quality but will require clear standards and accountability for it to be fully integrated into HBMC practice.

Palliative Cancer Care in the Outpatient Setting: Which Model Works Best?

Multiple randomized controlled trials have underscored the importance of timely referral to palliative care for patients with advanced cancer. Outpatient palliative care can facilitate timely referral and is increasingly available in many cancer centers. The key question is which model of outpatient palliative care is optimal. There are currently many variations for how palliative care is delivered in the outpatient setting, including (1) Interdisciplinary Specialist Palliative Care in Stand-Alone Clinics, (2) Physician-Only Specialist Palliative Care in Stand-Alone Clinics, (3) Nurse-Led Specialist Palliative Care in Stand-Alone Clinics, (4) Nurse-Led Specialist Palliative Care Telephone-Based Interventions, (5) Embedded Specialist Palliative Care with Variable Team Makeup, and (6) Advanced Practice Providers-Based Enhanced Primary Palliative Care. It is important to make a clear distinction among these delivery models of outpatient palliative care because they have different structures, processes, and outcomes, along with unique strengths and limitations. In this review article, we will provide a critical appraisal of the literature on studies investigating these models. At this time, interdisciplinary specialist palliative care in stand-alone clinics remains the gold standard for ambulatory palliative care because this approach has the greatest impact on multiple patient and caregiver outcomes. Although the other models may require fewer resources, they may not be able to provide the same level of comprehensive palliative care as an interdisciplinary team. Further research is needed to evaluate the optimal model of palliative care delivery in different settings.

“It’s not Magic, It’s Intentional Communication”—Using the Primary Palliative Care Communication Toolkit to Teach Communication to Interdisciplinary Learners at Different Levels of Training (FR453)

•Incorporate literature-based fundamental conceptual frameworks in communication into a workable toolkit for “just in time” use, for the right learner at the right time at the right place.•Develop a personalized skill set for Palliative Care teams to recognize teachable moments in everyday care and disseminate timely and concise teaching pearls in communication using the Toolkit.•Identify techniques to incorporate primary palliative care communication instruction to enhance skill sets in non-palliative care trainees and inter-professional learners. Primary palliative care (PPC) instruction is gaining prominence as benefits of early palliative care (PC) become clear, as patients live longer with serious illness, and as hospital systems look to improve the care of medically frail patients. With the growth of academic PC, the opportunity to engage learners of many disciplines and levels of training has expanded. Effective PC is based on excellent communication, which can be challenging to teach, especially in busy clinical practices. We discuss the interdisciplinary PC faculty skills development in utilizing the flexible and adaptable PPC Communication Toolkit. We demonstrate how our current training curriculum for fellows and other learners of various levels and disciplines incorporate this Toolkit to enable learners to build on their personal frame of reference as they see faculty incorporate these principles and techniques into everyday practice. Attendees will apply and practice these core elements, methodologies and techniques to engage both teachers and learners during the session. We will showcase four ways the Toolkit has been adapted and incorporated into communication training at a large academic institution and VA hospital. During a real-time consult PC faculty apply the “catch and release” method to coach learners on non-PC rotations when a PC consult is requested. PC faculty use the Toolkit to teach advance care planning to Nephrology fellows, to structure goals of care discussions with Internal Medicine residents on a geriatrics rotation, and to coach ICU nurse practitioners. The Primary Palliative Care Communication Toolkit is a creative, consistent, and adaptable way to incorporate communication training into the day-to-day care of patients living with serious illness and into the education of learners of different disciplines and levels of training. Participants will find tools and ideas that are easy and fun to use as they teach the next generation of clinicians to care for seriously ill patients.

Yes, and…Lessons Borrowed from Improvisational Theater to Teach Primary Palliative Medicine Skills (TH334)

Yes, and…Lessons Borrowed from Improvisational Theater to Teach Primary Palliative Medicine Skills (TH334)

You've Got This! Developing Primary Palliative Care Education Within a Safety-Net Health System (QI734)

You've Got This! Developing Primary Palliative Care Education Within a Safety-Net Health System (QI734)

Specialty vs. Primary Palliative Care in Randomized Clinical Trials: A Systematic Review (FR420B)

Specialty vs. Primary Palliative Care in Randomized Clinical Trials: A Systematic Review (FR420B)

“Supportive Care Nurses” An Innovative Inpatient Primary Palliative Care Consultation Service at an Academic Medical Center (S828)

“Supportive Care Nurses” An Innovative Inpatient Primary Palliative Care Consultation Service at an Academic Medical Center (S828)

Successes and Challenges in One Organization’s Process of Implementing Multiple System-Wide Primary Palliative Care Quality Improvement Projects (TH310D)

Successes and Challenges in One Organization’s Process of Implementing Multiple System-Wide Primary Palliative Care Quality Improvement Projects (TH310D)

Palliative care in primary care: European Forum for Primary Care position paper.

The aim of this position paper is to assist primary health care (PHC) providers, policymakers, and researchers by discussing the current context in which palliative health care functions within PHC in Europe. The position paper gives examples for improvements to palliative care models from studies and international discussions at European Forum for Primary Care (EFPC) workshops and conferences. Palliative care is a holistic approach that improves the quality of life of patients and their families facing problems associated with terminal illness, through the prevention and relief of suffering by means of early identification and diligent assessment and treatment of pain and other problems, whether physical, psychosocial, or spiritual. Unfortunately, some Europeans, unless they have cancer, still do not have access to generalist or specialist palliative care. A draft of this position paper was distributed electronically through the EFPC network in 2015, 2016, and 2017. Active collaboration with the representatives of the International Primary Palliative Care Network was established from the very beginning and more recently with the EAPC Primary Care Reference Group. Barriers, opportunities, and examples of good and bad practices were discussed at workshops focusing on palliative care at the international conferences of Southeastern European countries in Ljubljana (2015) and Budva (2017), at regular conferences in Amsterdam (2015) and Riga (2016), at the WONCA Europe conferences in Istanbul (2015), Copenhagen (2016), and Prague (2017), and at the EAPC conference in Madrid (2017). There is great diversity in the extent and type of palliative care provided in primary care by European countries. Primary care teams (PCTs) are well placed to encourage timely palliative care. We collected examples from different countries. We found numerous barriers influencing PCTs in preparing care plans with patients. We identified many facilitators to improve the organization of palliative care.

Primary Palliative Care Education Programs: Review and Characterization.

Primary palliative care (PPC) education programs have arisen in response to the recognition that all clinicians need to have a basic set of knowledge and skills to provide excellent care to all patients. PPC education programs appear to vary widely, making it difficult for potential learners to find the right program to fit their needs. We have cataloged and categorized a snapshot of PPC education programs across the United States to serve as a resource for those seeking training, and for educators interested in starting or optimizing such programs. Medical and commercial search engines (MSEs and CSEs, respectively) were used to generate a list of PPC education programs in the United States. Programs were contacted to supplement information available online, and then categorized based on intended learner, certification/degree conferred upon completion, and other characteristics. There was little overlap between the PPC education programs found through MSEs and CSEs. Programs found via CSEs varied with respect to intended learners, pedagogy, content, and cost. Among the minority of programs that confer a certification/degree upon completion, there is no consensus as to what these signify. The wide variety of PPC education programs is both a challenge to and strength of the field. We hope that this report will serve as a call to develop a standard PPC education taxonomy to help define essential components of all PPC programs, while also leaving sufficient room for programs to serve the unique needs of their local learners and patient populations.

Facilitators and Barriers to Interdisciplinary Communication between Providers in Primary Care and Palliative Care.

Community-based palliative care (CBPC) plays an integral role in addressing the complex care needs of older adults with serious chronic illnesses, but is premised on effective communication and collaboration between primary care providers (PCPs) and the providers of specialty palliative care (SPC). Optimal strategies to achieve the goal of coordinated care are ill-defined. The objective of this study was to understand the facilitators and barriers to optimal, coordinated interdisciplinary provision of CBPC. This was a qualitative study using a constructivist grounded theory approach. Thirty semistructured interviews were conducted with primary and palliative care interdisciplinary team members in academic and community settings. Major categories emerging from the data that positively or negatively influence optimal provision of coordinated care included feedback loops and interactions; clarity of roles; knowledge of palliative care, and workforce and structural constraints. Facilitators were frequent in-person, e-mail, or electronic medical record-based communication; defined role boundaries; and education of PCPs to distinguish elements of generalist palliative care (GPC) and more complex elements or situations requiring SPC. Barriers included inadequate communication that prevented a shared understanding of patients' needs and goals of care, limited time in primary care to provide GPC, and limited workforce in SPC. Our findings suggest that processes are needed that promote communication, including structured communication strategies between PCPs and SPC providers, clarification of role boundaries, enrichment of nonspecialty providers' competence in GPC, and enhanced access to CBPC.

An Innovative End-of-Life Nursing Education Consortium Curriculum That Prepares Nursing Students to Provide Primary Palliative Care.

Research has demonstrated that patients facing serious, life-limiting illnesses and their families benefit from receiving palliative care. Increasingly, however, specialty palliative care has limited resources. Prelicensure nursing students who are educated to provide primary palliative care to patients with serious illness and at the end of life can fill that gap. This article describes the development and implementation of an innovative online nursing curriculum that prepares students with essential primary palliative nursing knowledge and skills.

Abstract 262: Preferences for Primary versus Specialty Palliative Care Among Patients With Heart Failure

Background: More than 5 million people in the USA suffer from heart failure (HF). Palliative care (PC) is both a clinical subspecialty and overall approach to care that focuses on promoting seriously ill patients and their family’s quality of life. PC takes several forms, including consultation by a PC specialist, or attention to palliative domains by a non-PC specialist (aka “primary” PC). Despite guidelines calling for the integration of PC in HF, specialty PC remains underutilized. Patient preferences regarding primary vs specialty PC are unknown. Objective: To identify patient knowledge and perceptions regarding how primary and specialty PC could complement usual HF management, as well as barriers preventing PC utilization. Methods: We recruited individuals with NYHA class II-IV HF from general medicine wards and an outpatient advanced HF clinic, both at an academic quaternary care hospital. We conducted semi-structured interviews addressing: (1) patient-perceived physical, emotional, social, and decision-making needs; (2) perception, knowledge, and preferences regarding PC; (3) barriers and facilitators to PC. To understand patient preferences regarding primary vs specialty PC, in the interview guide, we conceptualized PC into 5 domains: physical, emotional, spiritual and social aspects of care, and advance care planning. For each domain, participants discussed unmet needs, and preferences about whether the needs would be best met by their existing cardiology team or a PC specialist. Two investigators independently analyzed data using template analysis, an inductive/deductive qualitative technique. Results: We interviewed 28 patients; 82% were white, 61% were >60 years, and 64% were male. 43% of participants had ejection fractions <30%, and 64% were of NYHA classes III or IV. Symptom burden was high and a source of dissatisfaction; yet, few believed that their disease management was suboptimal, often citing a sense of resignation that symptoms are inevitable in HF. We heard mixed and often incorrect understandings of PC (and its distinction from hospice). Once misperceptions of PC were corrected, respondents expressed variable preferences for specialty vs. primary PC. Proponents of primary PC cited trust and rapport in their existing clinicians, HF-specific expertise, convenience, and cost. Alternatively, participants preferring specialty PC involvement cited expertise in symptom management, addressing caregiver concerns, reduced time constraints, and a comprehensive non-HF-exclusive approach to care. Conclusion: We frequently identified limited and often incorrect understanding of PC. Though once corrected, patients articulated variable preferences for primary vs. specialty PC integration into their existing HF care. Research is needed to identify means of increasing primary and specialty PC delivery in HF in a manner that reflects patient preferences.

Relationship and the Effectiveness of Primary Palliative Care Education

Relationship and the Effectiveness of Primary Palliative Care Education

695 - A Successful Approach to Developing Primary Palliative Care Nurse Champions on a Blood and Marrow Transplant Unit

695 - A Successful Approach to Developing Primary Palliative Care Nurse Champions on a Blood and Marrow Transplant Unit

Outcomes of an Innovative 6-Week Standardized Residential Training Course for Physicians and Nurses to Provide Primary Palliative Care in India (S712)

•Feasibility to conduct a 6-week residential course in a developing country for physicians and nurses.•Knowledge improvement in major areas of palliative care. The National Program on Palliative Care (NPPC) by the Government of India has emphasized the need for training clinicians in providing palliative care (PC) with minimum of 6 weeks of residential training. However, there are limited studies on feasibility of such standardized training in PC offered to palliative care providers interested in transition to palliative care. To evaluate the feasibility, and change in the self-reported perception of knowledge in palliative care following a 6-week standardized residential training course (SRTC) for physicians and nurses to provide primary PC in India. A 6-week standardized residential type educational program, which combined didactics and bedside hands on palliative care training by PC specialists in 5 preselected centers in India. To be eligible licensed physicians and nurses should, (a) qualify in focused interview aimed to evaluate both interest and commitment to provide primary palliative care following the training, (b) Agree to complete all the required surveys. 46/53 (86%) completed the pre and post surveys. 50/53 (94%) participants completed the course and passed the certification exam. Median age (IQR) was 31 (27, 41). 53% were female and 53% were physicians. Median reported knowledge (1-5) for pain, fatigue, delirium, medical ethics were 4,3,2,2.5 before training vs 5 (P=0.001), 5 (P=0.001), 5 (P=0.001), 5 (P=0.001) after training respectively. All other core areas improved significantly. All participants noted satisfaction with faculty as high (5/5). Conducting a 6-week standardized residential training course in PC for physicians and nurses in India is feasible. There was a significant improvement in self-reported knowledge of all components of palliative care curriculum. Long term impact studies are needed.

First Responders: Educating Interdisciplinary Champions to Provide Primary Palliative Care (QI802)

First Responders: Educating Interdisciplinary Champions to Provide Primary Palliative Care (QI802)

Descriptive Analysis of Patient-Reported Symptoms and Associated Shared Care Plans from a Primary Palliative Care Intervention (CONNECT) for Patients with Advanced Cancer (S732)

Descriptive Analysis of Patient-Reported Symptoms and Associated Shared Care Plans from a Primary Palliative Care Intervention (CONNECT) for Patients with Advanced Cancer (S732)