Palliative Care Communication Research Articles

Barriers to initiating and implementing palliative and end-of-life care for children with life-limiting conditions: a mixed-methods study in a UK children’s hospital

BackgroundTo ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges...

Navigating chronic uncertainty: a theory synthesis for nursing communication in life-limiting illness

BackgroundDespite the proven benefits of early palliative care, patient communication regarding these services remains elusive. Therefore, this paper aims to (a) provide a focused literature review on nurse palliative care communication addressing chronic uncertainty in life-limiting illness (LLI), (b) define the Reconceptualization of Uncertainty in illness Theory and Problematic Integration Theory within a nursing Unitary Caring Science philosophical worldview and, (c) synthesize these theories and literature review into a unique theoretical framework for early palliative care communication in acute care nursing.MethodTurner’s theory synthesis methodology was combined with a PRISMA-style literature review. The literature search was conducted in July 2023 and updated in May 2024 using EBSCOhost, Pubmed, and PsychINFO databases. A second literature search was undertaken to identify applicable uncertainty theories in chronic or LLIs.ResultsThis theory synthesis highlights the interconnectedness of all facets of uncertainty for those living with severe LLI (personal factors, types of uncertainty, and the nursing communicatory process) and conceptualizes uncertainty communication as a series of events happening simultaneously, not simply a cause-and-effect process.DiscussionThe framework resulting from this synthesis encourages nurses’ holistic understanding of the complex nature of uncertainty in LLI, highlights the integral communicatory role nurses have in their patients’ health and wellness, and promotes further nursing-specific communication research. Future research on enabling nurse-initiated early palliative care communication and narrative communication techniques will support patients’ values and dignity throughout more than a single hospital stay but their entire disease trajectory.

Barriers and facilitators to early initiation of palliative care as perceived by nurses working on pneumology and nephrology, a descriptive qualitative study.

Initiation of palliative care early in the disease trajectory is beneficial for patients with a life-limiting disease. However, palliative care is still introduced rather late or not at all. Therefore, this study aims to explore barriers and facilitators to early initiation of palliative care as perceived by nurses working on pneumology and nephrology. A descriptive interview-based study was conducted from a critical realist perspective until data sufficiency was reached. Fifteen nurses presented and discussed a patient for whom palliative care was initiated too late. Template analysis was conducted to develop themes and subthemes. Five key themes were extracted: (1) communication, (2) fear, (3) personal beliefs about life and death, (4) ambiguity in terminology and (5) workload and time pressure. Barriers related to poor interdisciplinary communication were therapeutic obstinance, hierarchy, unawareness of the patient's wishes and fear of saying something inappropriate. Other barriers were patients' religious beliefs which often hindered the use of sedatives or morphine and led to discomfort and time restraints. A palliative support team in hospital and advance care planning (ACP) were enablers for early palliative care. This study started from a negative experience, leading to identification of a lot of barriers and only a few facilitators. The limited sample size and the restriction to two wards within one single hospital limit the diversity of perspectives and the generalisability of the findings. More attention is needed for ACP and interdisciplinary communication. Palliative care, including ACP, and interdisciplinary communication should be included in the basic curricula of all healthcare professional courses. Further research is needed to explore barriers and facilitators to early initiation of palliative care in other healthcare settings and patient populations. This is crucial in order to develop and implement sustainable interventions for specific groups of patients.

Tumor Is Not the Only Target: Ensuring Equitable Person-Centered Supportive Care in the Era of Precision Medicine.

Communication in oncology has always been challenging. The new era of precision oncology creates prognostic uncertainty. Still, person-centered care requires attention to people and their care needs. Living with cancer portends an experience that is life-altering, no matter what the outcome. Supporting patients and families through this unique experience requires careful attention, honed skills, an understanding of process and balance measures of innovation, and recognizing that supportive care is a foundational element of cancer medicine, rather than an either-or approach, an and-with approach that emphasizes the regular integration of palliative care (PC), geriatric oncology, and skilled communication.

Framework for Considering Primary and Subspecialty Palliative Care and Guiding Serious Illness Communication for Patients With Breast Cancer.

Palliative care is a comprehensive approach aimed at enhancing the quality of life of patients and their families living with serious illnesses such as breast cancer. This approach includes assessing and managing pain and other physical symptoms, attending to psychosocial and spiritual aspects of care, fostering effective communication and decision making, and providing support in coordinating care that upholds a person's values and preferences from the time of diagnosis throughout the illness trajectory. This type of care can be provided by palliative care specialists (ideally an interprofessional team) working alongside the oncology team, referred to as subspecialty palliative care. Conversely, the fundamental aspects of this approach, which we sometimes call primary palliative care, are provided by all clinicians caring for patients with breast cancer. Given that access to subspecialty palliative care can vary globally, especially in rural and resource-constrained settings, it is imperative for all oncology clinicians to receive training in the core components of palliative care. This study aims to provide a basic framework to recognize what the core primary palliative care skills are in routine oncology practice, to delineate basic serious illness communication strategies, and to introduce when to consider the integration of subspecialty palliative care into the care of patients with breast cancer.

Palliative care communication with stroke patients: a best practice implementation project.

Stroke patients frequently experience debilitating deficits, and some receive a terminal diagnosis. Palliative care services are introduced to prioritize care, with the goal of improving quality of life. However, palliative care communication (PCC) is often delayed or used inefficiently with stroke patients. This project aimed to promote PCC evidence-based practices (EBPs) with stroke patients. This project used the JBI Evidence Implementation Framework to improve compliance with PCC EBPs with stroke patients in a medical center in Mississippi, USA. Four EBPs were identified from a JBI evidence summary and used as audit criteria. A baseline audit was conducted to measure compliance of current practice with best practice. Barriers to EBPs were identified, improvement strategies were implemented, and a follow-up audit was conducted to determine compliance changes. The baseline audit revealed 53% to 80% compliance with the four EBPs. Barriers to EBPs included lack of health care professionals' knowledge regarding EBPs; lack of PCC, miscommunication, or delayed PCC with patients regarding hospitalization timeline and quality of life; and no standardized documentation or location for PCC within the electronic health record. Improvement strategies included a PCC education program for health care professionals and a concise statement and validation checkbox to the "progress note" in the electronic health record to promote daily PCC with patients. The follow-up audit revealed 20% to 34% compliance rate improvement with EBPs. Annual PCC training should be conducted for health care professionals. Implementing PCC through a multidisciplinary approach can promote more meaningful discussion and efficient decision-making, prioritizing patients' quality of life. http://links.lww.com/IJEBH/A174.

The COMFORT Model: Moving the Initiative Outside of the Academy

ABSTRACT Reflexive and prospective in nature, the creators of the COMFORT model describe experiences of moving this research outside of the academy. The COMFORT model represents the seven basic principles of healthcare provider communication: C – Connect, O – Options, M – Making Meaning, F – Family Caregivers, O – Openings, R – Relating, T – Team. The COMFORT initiative began as a call for change in healthcare communication education. Originally published as a final chapter in a volume on family and palliative care communication, it was the start of an extensive translational program of trainings and tools addressing healthcare provider communication.

Right-sizing interprofessional team training for serious-illness communication: A strength-based approach

ObjectivePalliative care communication skills help tailor care to patients' goals. With a palliative care physician shortage, non-physicians must gain these serious illness communication skills. Historically, trainings have targeted physician-only groups; our goal was to train interprofessional teams. MethodsWorkshops were conducted to teach palliative care communication skills and interprofessional communication. Participants completed surveys which included questions from the Interpersonal Reactivity Index, the Ekman Faces tool, the Consultation and Relational Empathy measure, open-ended questions about empathy, and measures of effective interprofessional practice. ResultsParticipants felt the workshop improved their ability to listen (p < 0.001), understand patients' concerns (p < 0.001), and show compassion (p = 0.008). It increased the perceived value of peer observation (p < 0.001) and ability to reflect (p = 0.02) during complex conversations. Different types of professionals adopted different communication goals, though all affirmed the importance of active listening. Participants felt they improved their ability to work within an interprofessional team. ConclusionsThe course effectively trained 71 clinicians, the majority non-physicians, in serious illness communication and interprofessional team communication skills, and could be reproduced in similar settings. InnovationWe adapted an approach common to physician-only trainings to diverse interprofessional groups, added a team-based component using Applied Improvisation, and demonstrated its effectiveness.

How can technology be used to support communication in palliative care beyond the covid-19 pandemic: a mixed-methods national survey of palliative care healthcare professionals

BackgroundDevelopments in digital health have the potential to create new opportunities for healthcare professionals support delivery of palliative care. Globally, many palliative care professionals used digital health innovations to support communication with staff, patients and caregivers, during COVID-19 pandemic. However, there is limited data about the views of palliative care professionals of using digital health to support communication during the pandemic. We aimed to describe how palliative care professionals used technology to support communication (multidisciplinary team working, education and with patients and family caregivers) during the COVID-19 pandemic.Method(s)UK based palliative care healthcare professionals completed an electronic questionnaire to describe their use of digital health, during the COVID-19 pandemic, to support (1) communication within the multidisciplinary team (MDT), (2) education and (3) to support communication with patients and carers.ResultsTwo hundred and thirty-four palliative care professionals participated. Most (n = 227, 97%) described an increase in their use of digital health, to support communication, since the start of the COVID-19 pandemic. We identified benefits and challenges for digital health communication, which we summarised into themes, including ‘a new way of working’, ‘developing a new approach to learning’ and ‘impacting care’.Conclusion(s)Since the pandemic, palliative care professionals have increased their use of digital health to support communication in clinical practice. We have identified facilitators and barriers for future practice. Further work should identify the levels of support needed for organisations to ensure that digital health interventions are meaningfully used to help palliative care professionals effectively communicate with patients, caregivers and staff.

A conceptual model of the nurse's role as primary palliative care provider in goals of care communication

ObjectiveNurses have opportunities to engage in goals of care conversations that can promote palliative care communication. The purpose of this study was to describe nurses' experiences in goals of care communication as summarized in the literature and to present a conceptual model of communication pathways for nurses. MethodsAn integrative review of the literature (2016–2022) addressing nurses' experiences in goals of care communication was conducted using PubMed, CINAHL, and PsychInfo databases. A total of 92 articles were retrieved. A total of 12 articles were included for this review after applying the inclusion and exclusion criteria. ResultsOf the 12 articles, the majority were qualitative studies (n = 8). Qualitative analysis of findings from all articles revealed three dominant themes: nurses' ambiguous role responsibilities, goals of care as end-of-life communication, and the need for nurse communication training. ConclusionThis article suggests an innovative conceptual model for advancing nurse communication about goals of care to facilitate primary palliative care. InnovationThe framework characterizes two communication pathways for Advanced Practice Nurses who direct goals of care discussions and Registered Nurses who support goals of care communication. The model informs future communication training aimed at supporting primary palliative care.

Communication in Palliative Care and About End of Life: A State-of-the-Art Literature Review of Conversation-Analytic Research in Healthcare

ABSTRACT I review conversation analytic research on healthcare interactions in palliative care, and end-of-life preferences and plans conversations in other settings. The review process drew on established systematic review methods. Twenty-two publications were included. Key themes were initiating and managing the topics of dying, of prognosis, and of advance care planning, and interactionally managing emotions. There is substantial, cumulative evidence about patterns and practices for initiating sensitive conversations, managing emotions, and indirectly referring to death. Two of 22 studies examined interactional consequences of companions accompanying patients, and two examined pain assessment. Current evidence is restricted: 21 of 22 studies were in secondary/tertiary care and all were in high-income countries, and most involved specialist physicians. Nevertheless, findings contribute to conversation analytic scholarship on delicacy, emotion in interaction, and indirect reference. Healthcare applications include contributions to training in communicating about sensitive topics and to policy on talking about dying. Data presented are in British English, U.S. English, Canadian English, Swiss-French, and Japanese.

VIRTUAL REALITY FOR PALLIATIVE CARE COMMUNICATION TRAINING: A NOVEL DISSEMINATION STRATEGY

Abstract Towards the end of life, 75% of older adults visit the emergency department (ED). During acute health decompensation, most older adults with serious illness (predicted survival of less than one year) do not have advance directives and are at risk of receiving care inconsistent with their goals. To deliver patient-centered care, palliative care communication skills are essential, especially during the shared decision-making for cardiopulmonary resuscitation (i.e., code status conversations). Facilitated by skilled faculty and trained actors playing the role of a seriously ill older adult in acute health decompensation, the traditional palliative care communication training combines role play and individual feedback to practice communication skills. These evidence-based, palliative care trainings have demonstrated to improve communication skills in trained clinicians with enduring skills 12-15 months later. However, these trainings take a minimum of four hours with highly trained faculty and professional actors to role play, which hinders wider dissemination. To improve nationwide dissemination of evidence-based practices in code status conversations, we have leveraged virtual reality technology to allow clinicians to experience in-person, palliative care communication training. In collaboration with a virtual reality company, a 360-degree view, virtual reality training content has been filmed in a real hospital environment. Using the same evidence-based, palliative care communication contents, clinicians in training can now experience the role play in a virtual reality environment in one hour instead of four. By leveraging virtual reality technology, evidence-based palliative care communication training can now be disseminated with much less institutional investment (e.g., training time, faculty resources, etc.).

Navigating Compassion: A Comprehensive Review of Palliative Care in Respiratory Medicine.

Palliative care has emerged as a crucial aspect of comprehensive healthcare, particularly in respiratory medicine. This review navigates the intricate landscape of palliative care in the context of respiratory diseases, including chronic obstructive pulmonary disease (COPD), idiopathic pulmonary fibrosis (IPF), and lung cancer. The exploration begins with a comprehensive examination of palliative care's definition, significance, and purpose in respiratory medicine. It progresses to understanding common respiratory diseases, their impact on patients' quality of life, and the nuances of disease progression and prognosis. Delving into the principles of palliative care, the review highlights the importance of a patient- and family-centered approach, emphasizing the multidisciplinary collaboration required for holistic care. Symptom management takes center stage, with a detailed exploration of dyspnea, cough, and pain, covering pharmacological and non-pharmacological interventions. The psychosocial and spiritual dimensions are then unveiled, recognizing the psychological impact of respiratory diseases and the significance of addressing spiritual needs with cultural sensitivity. Communication in palliative care is explored through breaking lousy news, advance care planning, and shared decision-making. The section acknowledges the complex considerations surrounding end-of-life care, including recognizing the end-of-life phase, establishing care goals, and withdrawing life-sustaining therapies. Recognizing the indispensable role of caregivers, the review underscores the importance of caregiver support. It delineates strategies for providing emotional and practical support alongside a crucial focus on self-care for caregivers who shoulder the responsibilities of providing palliative care. As the exploration concludes, the challenges in implementing palliative care in respiratory medicine are outlined, from late referrals to communication barriers. However, the review also envisions a future marked by innovation, with emerging approaches, such as telehealth and personalized medicine, offering promising avenues for improvement. Research gaps and areas for improvement are identified, emphasizing the need for a collaborative effort to enhance the quality of palliative care for individuals facing respiratory diseases. The review culminates in a call to action, urging early palliative care integration, investment in education and training, research initiatives, advocacy for accessible services, and collaboration across disciplines. By heeding this call, healthcare providers, researchers, and policymakers can collectively contribute to the evolution and enhancement of palliative care in the challenging landscape of respiratory medicine.

Communication Openings: A Novel Approach for Serious Illness Communication in Homecare.

Serious illness communication in homecare about hospice and/or palliative care transitions is lacking due to clinical culture. The purpose of the current study was to understand communication openings using COMFORT™, a palliative care communication model used to train nurses. Qualitative, focus group interviews with 31 homecare nurses were conducted. Data were transcribed verbatim and thematically analyzed using NVivo software, followed by hand-sorting. Four themes for communication openings for initiating discussions about potential hospice and/or palliative care transitions were identified: Organizational Openings (homecare appropriateness, eligibility requirements, and staffing); Patient Openings (patient physical decline, psychosocial changes, safety concerns, and denying/stopping care); Caregiver Openings (caregiver physical changes and patient readiness); and Nurse Openings (need for hospice, checking for prognosis understanding, increasing interprofessional care needs, and providing end-of-life care). This study extends the concept of communication openings in the COMFORT model. Further development of communication openings as part of COMFORT communication is needed in educational and intervention research. [Journal of Gerontological Nursing, 49(11), 33-41.].

Can Artificial Intelligence aid communication? Considering the possibilities of GPT-3 in Palliative care.

This article reviews the developments in artificial intelligence (AI) technologies and their current and prospective applications in endof-life communications. It uses Open AI's generative pre-trained transformer 3 (GPT-3) as a case study to understand the possibilities of AI-aided communication in Palliative Care. Open AI's GPT-3 was taken as a case study where responses were generated through the GPT-3 beta playground (Davinci engine) and were scrutinised by six mental health professionals (MHPs) working in a palliative care setting in India. They were tasked to evaluate the responses generated by the AI (the identity was not revealed until a part of the study was completed) in a simulated palliative care conversation with another MHP posing as a patient. The aim was to undermine whether the professionals were able to detect that the responses were indeed generated by a machine and did they approve or disapprove of the responses. The GPT-3 playground with the right prompts produced remarkable, often surprising texts and responses that imitated human interaction. However, glitches such as redundancy were noticed along with strongly held opinions in certain questions related to faith, death, and life after death. AI-assisted communication in palliative care could be used to train professionals in the palliative care field using it as a simulation in training. It could also be used as a therapeutic intervention for the purpose of engagement and philosophical dialogue after certain modifications. However, it would have its own limitations such as it cannot replace a human agent just yet.

Preferences and end of life care for residents of aged care facilities: a mixed methods study

BackgroundResidential aged care facilities is one of the most common places to deliver of end of life care. A lack of evidence regarding preferred place for end of life care for residents of aged care facilities impacts on delivery of care and prevents assessment of quality of care. This paper reports the preferences, current status of end of life care and enablers and barriers of care being delivered in line with the wishes of residents of participating aged care facilities.MethodsWe collaborated with six equally sized aged care facilities from the Greater Newcastle area, New South Wales, Australia. An audit of the quality of end of life care for residents was conducted by retrospective medical record review (n = 234 deceased patients). A retrospective review of emergency department transfers was conducted to determine the rate of transfer and assign avoidable or not. Qualitative focus group and individual interviews were conducted and analysed for barriers and enablers to end of life care being delivered in accordance with residents’ wishes.ResultsMost residents (96.7%) wished to remain in their residential aged care facility if their health deteriorated in an expected way. Residents of facilities whose model of care integrated nurse practitioners had the lowest rates of emergency department transfers and timelier symptom management at end of life. Family decision making influenced location of death (either supporting or preventing care in place of patient preference).Conclusion(s)To better provide care in accordance with a person’s wishes, aged care facilities need to be supported to enable end of life care insitu through integrated care with relevant palliative care providers, education and communication strategies. Family and community health and death literacy interventions should accompany clinical innovation to ensure delivery of care in accordance with residents’ preferences.

Students' learning in theory-based simulation: A socio-material study.

Simulation-based education (SBE) is crucial to prepare nursing students prior to their clinical learning experience. Theory-based simulation learning is increasingly important for analysing how students learn. This study describes and analyses how nursing students learn through simulation in the context of palliative care communication under a socio-material approach and explores the transfer of their knowledge and skills from simulation to clinical practice. Twenty-seven final-year nursing students in six groups participated in two simulated scenarios, followed by a debriefing and post-clinical focus groups to capture their reflections and learning. Fourteen of them joined the post-clinical focus groups after completing their clinical placements. Video recordings of the simulation, and the audio recordings from the debriefing, and post-clinical focus groups were transcribed and coded based on the human and non-human elements that were observed. These were triangulated with data collected through team participant observations, an analysis of the existing syllabi and curriculum, and a participant mapping exercise after the simulation. These various data sources illustrate how student learning and reflections took place. The three themes of student learning derived from the results and analysis were (1) students' expanded learning of health care communication through a socio-material approach in the context of palliative care; 2) students' discovery of the diverse and complex relations and interactions between humans and materials and (3) students' new perspectives on health care communication and the transfer of knowledge and skills through a socio-material approach in clinical practice. This study highlights how SBE can be further expanded using a socio-material approach to prepare students to learn beyond standardised and cognitively driven approaches and procedures. Student learning demonstrates that SBE may develop beyond high fidelity and standardisation to leave room for emergent learning and increased awareness in learning for students and teachers to optimise learning outcomes and competence.

Effective communication in palliative care from the perspectives of patients and relatives: A systematic review.

In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes an empathic care relationship. We explored the perspectives of patients with an advanced illness and their relatives on effective communication with health-care professionals. A systematic review was conducted. We searched Embase, Medline, Web of Science, CINAHL, and Cochrane for original empirical studies published between January 1, 2015 and March 4, 2021. In total, 56 articles on 53 unique studies were included. We found 7 themes that from the perspectives of patients and relatives contribute to effective communication: (1) open and honest information. However, this open and honest communication can also trigger anxiety, stress, and existential disruption. Patients and relatives also indicated that they preferred (2) health-care professionals aligning to the patient's and relative's process of uptake and coping with information; (3) empathy; (4) clear and understandable language; (5) leaving room for positive coping strategies, (6) committed health-care professionals taking responsibility; and (7) recognition of relatives in their role as caregiver. Most studies in this review concerned communication with physicians in a hospital setting. Most patients and relatives appreciate health-care professionals to not only pay attention to strictly medical issues but also to who they are as a person and the process they are going through. More research is needed on effective communication by nurses, in nonhospital settings and on communication by health-care professionals specialized in palliative care.

Palliative care or punting communication?

Palliative care or punting communication?

An Acoustical and Lexical Machine-Learning Pipeline to Identify Connectional Silences.

Context: Developing scalable methods for conversation analytics is essential for health care communication science and quality improvement. Purpose: To assess the feasibility of automating the identification of a conversational feature, Connectional Silence, which is associated with important patient outcomes. Methods: Using audio recordings from the Palliative Care Communication Research Initiative cohort study, we develop and test an automated measurement pipeline comprising three machine-learning (ML) tools-a random forest algorithm and a custom convolutional neural network that operate in parallel on audio recordings, and subsequently a natural language processing algorithm that uses brief excerpts of automated speech-to-text transcripts. Results: Our ML pipeline identified Connectional Silence with an overall sensitivity of 84% and specificity of 92%. For Emotional and Invitational subtypes, we observed sensitivities of 68% and 67%, and specificities of 95% and 97%, respectively. Conclusion: These findings support the capacity for coordinated and complementary ML methods to fully automate the identification of Connectional Silence in natural hospital-based clinical conversations.