Jahi McMath's story has been an important reference in medicine and ethics as the landscape of the understanding of death by neurologic criteria is shifting, with families actively questioning the once-firm criterion. Palliative care providers have a role in seeking understanding and collaborating with families and clinical teams to navigate the many challenges that arise when a medical team has determined that a child has died, and their parents disagree. In this case-based narrative discussion we consider the complexity of the family experience of brain death.
BACKGROUND: A large number of the hospice patients have been reported to be with symptoms of pain. Thus, managing the patient's pain is one aspect of hospice care provision. The delivery of pain care services could be facilitated through effective communication. However, little has been done to explore the interactional details of the delivery of pain care services in palliative care.
METHODS: Conversation analysis is a useful method to explore the interactional details of interaction by hospice care providers and terminally ill patients. Using the method of Conversation Analysis (CA), this study aims to demonstrate how the hospice care provider employs different types of interactional practices to address the patient's pain concerns. The data showed in this study are collected from the Alexander St website http://ctiv.alexanderstreet.com , an educational resource presenting a large collection of psycho-therapeutic videos.
RESULTS: In this study, an illustrative analysis is demonstrated to show the potential of conversation analysis for research on pain talk in palliative care. It has been shown that conversation analysis could contribute to unfolding the interactional details regarding "pain talk" in hospice care settings. Specifically, conversation analysis could provide a detailed description and interpretation of the conversational practices, which are used to construct hospice care provider participation in delivering pain talk. In addition, conversation analysis could also demonstrate the interactional resources by which patients disclose their experiences of physical or spiritual pain to the hospice care provider and the way how the hospice care provider responds to the patient's troubles talk or feelings talk.
CONCLUSIONS: This study identifies five types of interactional resources which are used to deal with the patient's pain concerns in hospice care setting. A conversation analytical study of pain talk in hospice care could provide a turn-by-turn description of how the hospice care provider communicates with the terminally ill patient in terms of the patient's pain concerns. The findings in this study could inform how the hospice care provider initiates, delivers and develops a pain talk with the terminally ill patient effectively.
BACKGROUND: A previous study found that care provided by a nurse practitioner (NP) during oncological or palliative care was highly regarded. These patients, however, were considered a special population due to suffering from life-threatening illnesses. It remains unclear whether the results are transferable to patients with chronic conditions. Patient's perceptions of the quality of NP care have reflected that it equals or exceeds that of physicians, but the root causes of these remarks remain unclear.
PURPOSE: To describe the difference in perception of NP care by patients suffering from chronic heart failure (CHF) or inflammatory bowel disease (IBD) in contrast with NP oncological or palliative care.
METHODOLOGICAL ORIENTATION: A qualitative study from a phenomenological perspective was conducted. Data were analyzed using Colaizzi's seven-step method and the Metaphor Identification Procedure.
SAMPLE: In 2018 and 2019, 16 outpatients receiving CHF or IBD care were interviewed.
CONCLUSIONS: Although chronic and life-threatening diseases may differentiate patients' perspectives, it can be generally stated that patients value NPs to be reliable, helpful, and empathic. Patients feel empowered, at peace and in control thanks to integrated care by dedicated experts.
IMPLICATIONS FOR PRACTICE: Outpatients highly appreciate the "communicator role" and "skilled companionship" performed by NPs, to fulfill their needs for attention to the "complete picture." Therefore, further consideration of these competencies is recommended.
BACKGROUND: In ageing Western societies, many older persons live with and die from cancer. Despite that present-day healthcare aims to be patient-centered, scientific literature has little knowledge to offer about how cancer and its treatment impact older persons' various outlooks on life and underlying life values. Therefore, the aims of this paper are to: 1) describe outlooks on life and life values of older people (= 70) living with incurable cancer; 2) elicit how healthcare professionals react and respond to these.
METHODS: Semi-structured qualitative interviews with 12 older persons with advanced cancer and two group interviews with healthcare professionals were held and followed by an analysis with a grounded theory approach.
RESULTS: Several themes and subthemes emerged from the patient interview study: a) handling incurable cancer (the anticipatory outlook on "a reduced life", hope and, coping with an unpredictable disease) b) being supported by others ("being there", leaving a legacy, and having reliable healthcare professionals) and; c) making end-of-life choices (anticipatory fears, and place of death). The group interviews explained how healthcare professionals respond to the abovementioned themes in palliative care practice. Some barriers for (open) communication were expressed too by the latter, e.g., lack of continuity of care and advance care planning, and patients' humble attitudes.
CONCLUSIONS: Older adults living with incurable cancer showed particular outlooks on life and life values regarding advanced cancer and the accompanying last phase of life. This paper could support healthcare professionals and patients in jointly exploring and formulating these outlooks and values in the light of treatment plans.
Despite the progressive nature of chronic obstructive pulmonary disease (COPD), its association of high morbidity and mortality with severe COPD, and the view that discussions between patients and clinicians about palliative care plans should be grounded in patients' preferences, many older patients do not receive timely end-of-life care (EOLC) discussions with healthcare professionals (HPs), potentially risking inadequate care at the advanced stages of the disease. The aim of this pilot study was to evaluate EOLC discussions and resuscitation issues as a representative and illustrative part within EOLC in older patients with COPD in the University Hospital Center Osijek, Slavonia (Eastern Region), Croatia, as such data have not yet been explored. The study was designed as cross-sectional research. Two groups of participants, namely, patients at least 65 years old with COPD and healthcare professionals, were interviewed anonymously. In total, 83 participants (22 HPs and 61 patients with COPD) were included in the study. According to the results, 77% of patients reported that they had not had EOLC discussions with HPs, 64% expressed the opinion that they would like such conversations, and the best timing for such discussion would be during frequent hospital admissions. Furthermore, 77% of HPs thought that EOLC communication is important, but only 14% actually discussed such issues with their patients because most of them felt uncomfortable starting such a topic. The majority of older patients with COPD did not discuss advanced care planning with their HPs, even though the majority of them would like to have such a discussion. EOLC between HPs and older patients with COPD should be encouraged in line with patients' wishes, with the aim to improve their quality of care by anticipating patients' likely future needs in a timely manner and thereby providing proactive support in accordance with patients' preferences.
BACKGROUND: Failure to deliver care near the end of life that reflects the needs, values and preferences of patients with advanced cancer remains a major shortcoming of our cancer care delivery system.
METHODS: A mixed-methods comparative effectiveness trial of in-person advance care planning (ACP) discussions versus web-based ACP is currently underway at oncology practices in Western Pennsylvania. Patients with advanced cancer and their caregivers are invited to enroll. Participants are randomized to either (1) in-person ACP discussions via face-to-face visits with a nurse facilitator following the Respecting Choices® Conversation Guide or (2) web-based ACP using the PREPARE for your care™ web-based ACP tool. The trial compares the effect of these two interventions on patient and family caregiver outcomes (engagement in ACP, primary outcome; ACP discussions; advance directive (AD) completion; quality of end-of-life (EOL) care; EOL goal attainment; caregiver psychological symptoms; healthcare utilization at EOL) and assesses implementation costs. Factors influencing ACP effectiveness are assessed via in-depth interviews with patients, caregivers and clinicians.
DISCUSSION: This trial will provide new and much-needed empirical evidence about two patient-facing ACP approaches that successfully overcome limitations of traditional written advance directives but entail very different investments of time and resources. It is innovative in using mixed methods to evaluate not only the comparative effectiveness of these approaches, but also the contexts and mechanisms influencing effectiveness. Data from this study will inform clinicians, payers and health systems seeking to adopt and scale the most effective and efficient ACP strategy in real-world oncology settings.
BACKGROUND/OBJECTIVES: To determine the impact of educational interventions, clinic workflow redesign, and quality improvement coaching on the frequency of advance care planning (ACP) activities for patients over the age of 65.
DESIGN: Nonrandomized before-and-after study.
SETTING: 13 ambulatory care clinics with 81 primary care providers in eastern and central North Carolina.
PARTICIPANTS: Patients across 13 primary care clinics staffed by 66 physicians, 8 physician assistants and 7 family nurse practitioners.
INTERVENTIONS: Interprofessional, interactive ACP training for the entire interprofessional team and quality improvement project management with an emphasis on workflow redesign.
MEASUREMENTS: From July 2017 through June 2018-number of ACP discussions, number of written ACP documents incorporated into the electronic medical record (EMR), number of ACP encounters billed.
RESULTS: Following the interventions, healthcare providers were more than twice as likely to conduct ACP discussions with their patients. Patients were 1.4 times more likely to have an ACP document included in their electronic medical record. Providers were significantly (p < 0.05) more likely to bill for an ACP encounter in only one clinic.
CONCLUSIONS: Implementing ACP education for all clinic staff, planning for workflow changes to involve the entire interprofessional team and supporting ACP activities with quality improvement coaching leads to statistically significant improvements in the frequency of ACP discussions, the number of ACP documents included in the electronic medical record and number of ACP encounters billed.
Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
BACKGROUND: Process evaluation addresses the implementation, mechanisms of impact, and context of participants in complex interventions. The STADPLAN study assesses the effects of conversations on advance care planning (ACP) led by trained nurse facilitators. The complex intervention consists of several components that may lead to various changes in attitude and behavior regarding personal ACP activities. With the process evaluation, we aim to assess how changes were achieved in the STADPLAN intervention.
METHODS: The planned process evaluation study will be conducted alongside a cluster-randomized controlled trial on ACP in home care services (HCS). Trained nurse facilitators will deliver the ACP intervention consisting of an information brochure and two ACP conversations. A logic model depicts the assumed change processes of the intervention: the educational program enables nurses to conduct ACP conversations with patients and their caregivers. Patients gain knowledge and reflect upon and engage in their own ACP. Caregivers better understand patients' wishes and feel reassured in their role as surrogates. Designation of a surrogate and communication on ACP are facilitated. We will assess the effects of the educational program with questionnaires and a focus group including all participating nurses. We will measure ACP engagement, and prevalence of advance directives in patients, and ask for their experiences with the intervention. We will conduct semi-structured interviews with caregivers about their expectations and experiences regarding ACP in general and the intervention. We will address context factors, e.g., basic characteristics of the HCS (such as ownership, number of clients, staff and qualification). Analysis will be based upon the logic model, integrating qualitative and quantitative data.
DISCUSSION: The comprehensive process evaluation will provide essential information on the feasibility of implementation strategies and the clinical relevance of a nurse-led ACP intervention in home care recipients and its generalizability and transferability to other settings.
BACKGROUND: Many people are dying from COVID-19, but consensus guidance on palliative care in COVID-19 is lacking. This new life-threatening disease has put healthcare systems under pressure, with increased need of palliative care provided to many patients by clinicians with limited prior experience in this field. Therefore, we aimed to make consensus recommendations for palliative care for patients with COVID-19 using the Convergence of Opinion on Recommendations and Evidence (CORE) process.
METHODS: We invited 90 international experts to complete an online survey including stating their agreement, or not, with 14 potential recommendations. At least 70% agreement on directionality was needed to provide consensus recommendations. If consensus was not achieved on the first round, a second round was conducted.
RESULTS: 68 experts (75.6%) responded in the first round. Most participants were experts in palliative care, respiratory medicine or critical care medicine. In the first round, consensus was achieved on 13 recommendations based upon indirect evidence and clinical experience. In the second round, 58/68 (85.3%) of the first round experts responded, resulting in consensus also for the 14th recommendation.
CONCLUSIONS: This multi-national task force provides consensus recommendations for palliative care for patients with COVID-19 concerning: advance care planning; (pharmacological) palliative treatment of breathlessness; clinician-patient communication; remote clinician-family communication; palliative care involvement in patients with serious COVID-19; spiritual care; psychosocial care; and bereavement care. Future studies are needed to generate empirical evidence for these recommendations.
Research results suggest that illness can undermine patients' dignity and that dignity can be understood as an experience formed in communion with others. The aim of this study was, therefore, to illuminate the meanings of lived experiences of dignity as an intersubjective phenomenon from the perspective of dyads in palliative care. The authors analyzed transcripts from interviews with nine dyads using a phenomenological-hermeneutical method. Within the contexts of the dyadic relationship and the dyadic-health care professional relationship, the authors' interpretation revealed two meanings based on the participants' lived experiences: "Being available," related to responding and being responded to in terms of answerability and we-ness, and "Upholding continuity," linked to feeling attached through the maintenance of emotional bonds and being connected through upholding valued activities and qualities in daily living. The authors further reflected on the meanings in relation to philosophically grounded concepts such as presence, objectification, dependence, and dyadic body.
AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
Objective: Communication between patients and end-of-life care providers requires sensitivity given the context and complexity involved. This systematic review uses a narrative approach to synthesise clinicians’ understandings of communication in end-of-life care.
Methods: A systematic, narrative synthesis approach was adopted given the heterogeneity across the 83 included studies. The review was registered prospectively on PROSPERO (ID: CRD42019125155]. Medline was searched for all articles catalogued with the MeSH terms “palliative care,” “terminal care” or “end-of-life care,” and “communication”. Articles were assessed for quality using a modified JQI-QARI tool.
Results: The findings highlight the centrality and complexity of communication in end-of-life care. The challenges identified by clinicians in relation to such communication include the development of skills necessary, complexity of interpersonal interactions, and ways in which organisational factors impact upon communication. Clinicians are also aware of the need to develop strategies for interdisciplinary teams to improve communication.
Conclusion: Training needs for effective communication in end-of-life contexts are not currently being met.
Practice Implications: Clinicians need more training to address the lack of skills to overcome interactional difficulties. Attention is also needed to address issues in the organisational contexts in which such communication occurs.
Background: Advance care planning (ACP) conversations are an important intervention to provide care consistent with patient goals near the end of life. The emergency department (ED) could serve as an important time and location for these conversations.
Objectives: To determine the feasibility of an ED-based, brief negotiated interview (BNI) to stimulate ACP conversations among seriously ill older adults.
Methods: We conducted a pre/postintervention study in the ED of an urban, tertiary care, academic medical center. From November 2017 to May 2019, we prospectively enrolled adults =65 years of age with serious illness. Trained clinicians conducted the intervention. We measured patients' ACP engagement at baseline and follow-up (3 ± 1 weeks) and reviewed electronic medical record documentation of ACP (e.g., medical order for life-sustaining treatment [MOLST]).
Results: We enrolled 51 patients (mean age = 71; SD 12), 41% were female, and 51% of patients had metastatic cancer. Median duration of the intervention was 11.8 minutes; few (6%) of the interventions were interrupted. We completed follow-up for 61% of participants. Patients' self-reported ACP engagement increased from 3.0 to 3.7 out of 5 after the intervention (p < 0.01). Electronic documentation of health care proxy forms increased (75%–94%, n = 48) as did MOLST (0%–19%, n = 48) during the six months after the ED visit.
Conclusion: A novel, ED-based, BNI intervention to stimulate ACP conversations for seriously ill older adults is feasible and may improve ACP engagement and documentation.
Background: Communication and shared decision-making (SDM) are essential to patient-centered care. Hospital-based palliative care with patients with limited health literacy (LHL) poses particular demands on communication. In this context, patients’ emotions and vulnerable condition impact their skills to obtain, understand, process and apply information about health and healthcare even more. If healthcare providers (HCPs) meet these demands, it could enhance communication. In this study, HCPs were interviewed and asked for their strategies, barriers and suggestions for improvement regarding communication and SDM with LHL patients in hospital-based palliative care.
Methods: qualitative interview study was conducted in 2018 in four Dutch hospitals with 17 HCPs—11 physicians and 6 nurses. Transcripts were analyzed using thematic analysis.
Results: In general HCPs recognized limited literacy as a concept, however, they did not recognize limited health literacy. Regarding SDM some HCPs were strong advocates, others did not believe in SDM as a concept and perceived it as unfeasible. Furthermore, five themes, acting as either strategies, barriers or suggestions for improvement emerged from the interviews: 1) time management; 2) HCPs’ communication skills; 3) information tailoring; 4) characteristics of patients and significant others; 5) the content of the medical information.
Conclusions: According to HCPs, more time to communicate with their patients could resolve the most prominent barriers emerged from this study. Further research should investigate the organizational possibilities for this and the actual effectiveness of additional time on effective communication and SDM. Additionally, more awareness for the concept of LHL is needed as a precondition for recognizing LHL. Furthermore, future research should be directed towards opportunities for tailoring communication, and the extent to which limited knowledge and complex information affect communication and SDM. This study provides first insights into perspectives of HCPs, indicating directions for research on communication, SDM and LHL in hospital-based palliative care.
The implantable cardioverter defibrillator (ICD) is effective in terminating life-threatening arrhythmias. However, in the last phase of life, ICD shocks may no longer be appropriate. Guidelines recommend timely discussion with the patient regarding deactivation of the shock function of the ICD. However, research shows that such conversations are scarce, and some patients experience avoidable and distressful shocks in the final days of life. Barriers such as physicians’ lack of time, difficulties in finding the right time to discuss ICD deactivation, patients’ reluctance to discuss the topic, and the fragmentation of care, which obscures responsibilities, prevent healthcare professionals from discussing this topic with the patient. In this point-of-view article, we argue that healthcare professionals who are involved in the care for ICD patients should be better educated on how to communicate with patients about ICD deactivation and the end of life. Optimal communication is needed to reduce the number of patients experiencing inappropriate and painful shocks in the terminal stage of their lives.
Background: Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as “places of death” as opposed to “places of life” meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC.
Methods: A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants.
Results: A total of 242 h of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us.
Conclusion: The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability.
Background: Understanding patients' goals and values is important to ensure goal-concordant care; however, such discussions can be challenging. Little is known about the impact of having these discussions on hospitalists.
Objective: To assess the impact on hospitalists of a system that reminds them to have serious illness conversations with their patients identified with potential unmet palliative needs.
Design: Two group cohort trial.
Setting/Subjects: Single academic center. Internal medicine hospitalist physicians, nurse practitioners, and physician's assistants.
easurements: Before the trial, all participants received serious illness conversation training. During the trial, hospitalists on intervention units received verbal notification when their recently admitted patients were identified using a computer algorithm as having possible unmet palliative needs. Hospitalists on the control unit received no notifications. At baseline and three months, hospitalists completed questionnaires regarding communication skill acquisition, perception of the importance of these conversations, and sense of the meaning gained from having them.
Results: Both groups had similar improvements in their self-reported communication skills and experienced a small decline in how important they felt the conversations were. Neither group perceived having the discussions as being affectively harmful to patients. The intervention hospitalists, over time, reported a slight reduction in the sense of meaning they achieved from the conversations.
Conclusion: Routinely informing hospitalists when their patients were identified as being at increased risk for unmet palliative needs did not increase the sense of meaning these providers achieved. It is likely the pretrial training accounted for many of the positive outcomes in communication skills observed in both arms of the trial.
Les uns et les autres ont des temps différents et des représentations très dissemblables du temps qui reste. Comment peuvent-ils se rencontrer ? Ce qui se passe entre le malade et celui qui prend soin de lui n'est pas une simple relation, laquelle n'exige qu'une coïncidence dans l'espace et un échange le plus souvent langagier. Ce qui se passe s'appelle une rencontre qui, en plus, exige que le rencontrant et le rencontré partagent ici et maintenant le même présent. Ce qui caractérise la patience, c'est la déprise de soi-même et de ce qui constitue le tissu de chaque être : le temps.
Une question éthique autour de ce qui s'engage dans le soin, son essence même : la rencontre de personnes prises dans un mouvement de l'un vers l'autre. Entre l'accélération pour les soignants et la décélération pour les soignés, comment retrouver un espace pour la relation ? Car si le temps apparaît souvent comme une impossibilité, on peut penser des oasis de décélération qui nous permettent de croire que nos identités sont ouvertes à de vastes champs de possibles.