Top 10 Tips Palliative Care Clinicians Should Know About Messaging for the Public.

When speaking to public audiences, palliative care advocates often reach for personal experiences of great meaning and significance in their own lives, and often distill those experiences to a key message. However, this approach may not be the most effective way to engage a public audience whose closest experience with palliative care is based on social media or third-hand stories. Research demonstrates that the lay public often starts with inaccurate assumptions about palliative care, including that it is only for people at end of life. These misunderstandings can lead people with serious illness to decline palliative care services that are backed by evidence and demonstrate real benefit. This phenomenon of "declines based on inaccurate assumptions" is widely seen in clinical practice and palliative care demonstration projects. Public messaging is an evidence-based approach to engage more effectively with the public when doing outreach for palliative care. The 10 tips provided are based on a multiyear and multiorganizational project focused on improving the messaging of palliative care for the public. As palliative care services are increasingly expanded and integrated into health systems, public messaging can provide a new approach for building partnerships with the public by offering messages that consistently meet their needs based on their current perceptions. Incorporating public-informed messaging strategies could enable palliative care clinicians and advocates to address the lay public with greater confidence and clarity about how palliative care can serve them, their families, and their communities.

What Patients and Caregivers Experience When They Receive Palliative Care: A Study Eliciting Metaphors That Could Shape Public Messaging.

Many patients who could benefit from Palliative Care do not receive services because of lack of awareness or misconceptions. This high level of public unfamiliarity combined with inaccurate beliefs equating Palliative Care with dying calls for public messaging designed to increase public familiarity and correct misconceptions. A barrier to widespread public messaging, however, is the scarcity of messages developed with empirical research in public perceptions of the lived experience of receiving palliative care. In this report, we describe qualitative research aimed at identifying the "deep metaphors" associated with palliative care, to provide an empirical foundation for further creative work. We interviewed 8 patients receiving palliative care and 8 caregivers using a qualitative method, Zaltman Metaphor Elicitation Technique, that is specially designed to reveal unconscious metaphors and socially shared associations that participants held about experiencing palliative care. Study participants likened the onset of serious illness as a massive disruption resulting in stunning losses with far-reaching consequences. What serious illness "took away" from them was a sense of certainty about where their lives were going, and these participants described experiencing (1) shame and embarrassment about what was happening to them; (2) a sense that no one was listening to them; (3) feeling lost and uncertain about what to do, feeling stuck; and (4) losing parts of their identity to illness. What they felt in need of, to counter what had been taken away, was (1) validation for what they were going through; (2) agency to determine their own quality of life and have input into their care; (3) guidance to access a network of resources; and (4) regeneration of their self-worth, resulting in a new version of their identity. This research provides guidance for message developers on frames, language, and visuals for future campaigns designed to create public interest in palliative care.

Public Messaging for Serious Illness Care in the Age of Coronavirus Disease: Cutting through Misconceptions, Mixed Feelings, and Distrust.

A year ago, we began a project designed to align public messages from 10 organizations involved in advance care planning (ACP), palliative care (PC), and hospice to increase public engagement. By public messaging, we are referring to a well-established evidence-driven method of disseminating information at scale that enables the public to take action to protect their health. Our project plan was upended by the coronavirus disease 2019 (COVID-19) pandemic-but we used the opportunity to conduct focus groups during the pandemic that, compared with focus groups conducted before the pandemic, provide an important portrait of public perceptions of serious illness care that can be used to design for greater public engagement. Our findings can be summarized in three observations. First, misunderstanding of ACP, PC, and hospice is wide ranging and deep. Second, COVID-19 evokes its own brand of confusion and ambivalence that is distinct from other serious illnesses. And third, distrust of the health care system has become the new normal. Despite these findings, our focus group participants strongly endorsed five messaging principles (1) talk up the benefits, (2) present choices for every step, (3) use stories that are positive and aspirational, (4) invite dialogue-more than once, and (5) invoke a new team-of people who matter, clinicians, medical institutions, and community organizations who are ready to help. After listening to 100-word stories describing real patient experiences with ACP, PC, and hospice, our focus group participants expressed interest and appreciation. But to improve public engagement broadly, we need to explain our work to the general public in a way that makes them want to know more.

Public Perceptions of Advance Care Planning, Palliative Care, and Hospice: A Scoping Review.

Background: Although access to advance care planning (ACP), palliative care, and hospice has increased, public attitudes may still be barriers to their optimal use. Purpose: To synthesize empirical research from disparate sources that describes public perceptions of ACP, palliative care, and hospice in ways that could inform public messaging. Data Sources: Searches of PubMed and other databases were made from January 2011 to January 2020. Study Selection: Studies reporting survey or interview data with the public that asked specifically about awareness and attitudes toward ACP, palliative care, or hospice were included. Data Extraction and Synthesis: Two reviewers independently screened citations, read full texts, and performed data abstraction. Twelve studies met inclusion criteria and included >9800 participants. For ACP, 80% to 90% of participants reported awareness, and a similar proportion considered it important, but only 10% to 41% reported having named a proxy or completed a written document. For palliative care, 66% to 71% of participants reported no awareness of palliative care, and those who reported awareness often conflated it with end-of-life care. However, after being prompted with a tested definition, 95% rated palliative care favorably. For hospice, 86% of participants reported awareness and 70% to 91% rated it favorably, although 37% held significant misconceptions. Limitations: A limited number of studies met inclusion criteria, and some were published in nonpeer reviewed sources. The studies reflect public perceptions pre-COVID-19. Conclusion: Consumer perceptions of ACP, palliative care, and hospice each have a distinct profile of awareness, perceptions of importance, and reports of action taking, and these profiles represent three different challenges for public messaging.

Asking questions of a palliative care nurse practitioner on a pancreatic cancer website.

OBJECTIVE: Increasing evidence demonstrates the benefits of online cancer interventions but very little about the needs of those with pancreatic cancer or interaction with online providers. Our study was done to (1) see how many people would visit a webpage where they could interact with a palliative care nurse practitioner (PCNP), (2) see how many would ask the PCNP questions, (3) determine the type of questions, and (4) obtain feedback regarding the usefulness of the webpage. METHOD: Mixed-methods descriptive design. RESULTS: There were 2174 visits to the webpage, and a total of 84 participants sent 110 questions/comments. Some 28 (33%) were people worried that they might have pancreatic cancer. Most questions (59, 53%) had to do with palliative care issues, with the largest subgroup (26, 23%) involving psychological concerns. A total of 39 completed an online survey and were relatives (20, 52%), or patients (17, 44%). They rated the webpage at 3.3/4 as being helpful at learning about the physical symptoms/treatments of pancreatic cancer, at 3.1/4 for learning about emotional issues, at 3/4 for learning about palliative care, at 2.8/4 for learning about hospice, and at 3.3/4 for reading other people's questions. SIGNIFICANCE OF RESULTS: The PCNP webpage was a helpful resource. Most asking questions were worried about having or getting pancreatic cancer. More research is needed into online providers, interventions, and conducting research online.

Communication education for pre-licensure nursing students: literature review 2002-2013.

OBJECTIVES: Effective communication skills are fundamental to good nursing care and required by certification bodies for nursing education. The purpose of this literature review was to update one done in 2002 of communication education to pre-licensure registered nursing students. That review concluded that it was unclear which interventions were most effective due to methodological and other quality issues. The goal of this review was to identify recent educational methods, frameworks, and evaluation tools and to assess the quality of this recent evidence. DESIGN: Literature review. DATA SOURCES: PubMed, CINAHL, and PsychINFO. REVIEW METHODS: Inclusion criteria were articles in English, 2002 to 2013, full text available, addressing nurse:patient communication, and educational interventions. Exclusion criteria were inter-professional interventions as they are not yet as widely available. Studies were evaluated using the Johns Hopkins Nursing Evidence-based Practice (JHNEBP) Rating Scale. This scale categorizes the levels of evidence and methodological quality. RESULTS: The search yielded 457 titles, 115 abstracts, and 38 articles. Twenty studies met inclusion and exclusion search criteria. They included a range of research designs, samples, and outcomes. In line with recent communication educational trends, the interventions all involved active learning. Using the JHNEBP scale, the quality of the 20 studies was low due to both research design and methodological issues. CONCLUSION: Despite the importance of communication in nursing education, the quality of evidence to support specific communication interventions continues to be low. Recommendations for future communication education research are to (1) explore the highest quality designs available and use randomization where possible; (2) more consistently use theoretical frameworks and their accompanying outcome measures; and (3) that tools be tested for evidence of reliability and validity.

Family-centered end-of-life care in the ICU.

Families of older adults are intricately involved in the end-of-life decision-making process for a family member with a serious illness in the intensive care unit (ICU) setting. However, families are not always as involved and as informed as they would like to be. Creating a culture that assesses family needs and supports families is an important component of family-centered care. There are several strategies that nurses and other members of the interdisciplinary team can use to promote family-centered end-of-life care in the ICU. Nurses can get to know the family by spending time talking with them, assessing them, seeking to understand their perspectives on their family member's condition, and discussing previously verbalized patient wishes for care. This article offers strategies nurses can use to help guide the family through the end-of-life decision-making process, support families as difficult and complex decisions are made in collaboration with the health care team, and prepare families for the dying process.

A qualitative and quantitative needs assessment of pain management for hospitalized orthopedic patients.

Despite advances in pain management, little formal teaching is given to practitioners and nurses in its use for postoperative orthopedic patients. The goal of our study was to determine the educational needs for orthopedic pain management of our residents, nurses, and physical therapists using a quantitative and qualitative assessment. The needs analysis was conducted in a 10-bed orthopedic unit at a teaching hospital and included a survey given to 20 orthopedic residents, 9 nurses, and 6 physical therapists, followed by focus groups addressing barriers to pain control and knowledge of pain management. Key challenges for nurses included not always having breakthrough pain medication orders and the gap in pain management between cessation of patient-controlled analgesia and ordering and administering oral medications. Key challenges for orthopedic residents included treating pain in patients with a history of substance abuse, assessing pain, and determining when to use long-acting vs short-acting opioids. Focus group assessments revealed a lack of training in pain management and the need for better coordination of care between nurses and practitioners and improved education about special needs groups (the elderly and those with substance abuse issues). This needs assessment showed that orthopedic residents and nurses receive little formal education on pain management, despite having to address pain on a daily basis. This information will be used to develop an educational program to improve pain management for postoperative orthopedic patients. An integrated educational program with orthopedic residents, nurses, and physical therapists would promote understanding of issues for each discipline.

Palliative care online: a pilot study on a pancreatic cancer website.

CONTEXT: Patients with pancreatic cancer and their families are candidates for palliative care given the physical, emotional, and existential aspects of this serious illness. However, they may not have access to it while pursuing aggressive treatment, or due to physical location or lack of awareness of these services. The Internet may offer a way to overcome these barriers as it is quickly becoming an important health resource and link between patients, families, and health care providers. OBJECTIVES: To determine 1) the number and geographic location of those visiting an interactive webpage where patients and families could access a palliative care nurse practitioner (PCNP); 2) the number and type of questions posted to the PCNP and whether those posting were patients or family members/other; and 3) to evaluate their experience with the PCNP webpage. DESIGN: Descriptive study. RESULTS: The PCNP webpage was added to the Johns Hopkins Pancreatic Cancer Center's website and was visited 707 times by 395 unique computer addresses/visitors over the eight-week study period. Forty-eight participants posted 55 questions or sent individual emails to the PCNP. Most questions (85%) had to do with physical issues related to pancreatic cancer and its treatment. Twenty participants completed an online survey. Most survey respondents found the PCNP website helpful, and easy to use, and recommended that the PCNP page be an on-going resource. CONCLUSION: This experience provides preliminary evidence that the Internet can be used to offer palliative care-specific information and support to patients and families dealing with pancreatic cancer.