PURPOSE: The Norwegian Health Personnel Act (HPA §10a) obliges health professionals to contribute to meeting minor children's need for information about their parents' illness and prognosis. Previous research has shown that many parents withhold information about illness and anticipated death from their children. This study explored main considerations for palliative health-care professionals in these situations, and how they negotiate conflicting considerations of confidentiality and child involvement.
METHOD: This qualitative exploratory study involved semi-structured interviews with 11 palliative health-care professionals. Hermeneutics informed the data analysis.
RESULTS: The health professionals' main considerations were sustaining patients' hope and building trust in the professional-patient relationship. Both concerns were grounded in respect for patient autonomy. The health professionals negotiated patient autonomy and child involvement in different ways, defined in the present analysis on a continuum ranging from granting full patient autonomy to going directly against patients' will.
CONCLUSIONS: The professional-patient relationship is the primary consideration in the health care context, and decision making on the degree of children's involvement happens in a dialogical process between health professionals and patients. Close professional-patient relationships might increase the emotional impacts on health professionals, who consequently might give greater relative weight to patients' will. We propose that procedures for initiating collaboration with professionals in the child's everyday life context help health professionals involving the child without threatening trust.
D'une certaine manière, on ne peut rejoindre l'autre en sa solitude sans sortir de la nôtre et ce qui se donne du premier coup d'oeil comme une possible limitation est, en fait, la meilleure voie qui nous soit accessible. Ce "lieu sans lieu" qui dit "je", qui relève de l'intime, peut être notre boussole intérieure : avec elle, nous reconnaissons l'appel à être, non pas le seul, mais un unique ; nous reconnaissons aussi notre manque fondamental qui ouvre au désir de l'altérité.
OBJECTIVE: Patients with advanced diseases and frail older adults often face decisions regarding life-prolonging treatment. Our aim was to provide an overview of the feasibility and effectiveness of tools that support communication between healthcare professionals and patients regarding decisions on life-prolonging treatments in hospital settings.
DESIGN: Systematic review: We searched PubMed, CINAHL, PsycINFO, Embase, Cochrane Library and Google Scholar (2009-2019) to identify studies that reported feasibility or effectiveness of tools that support communication about life-prolonging treatments in adult patients with advanced diseases or frail older adults in hospital settings. The Mixed Methods Appraisal Tool was used for quality appraisal of the included studies.
RESULTS: Seven studies were included, all involving patients with advanced cancer. The overall methodological quality of the included studies was moderate to high. Five studies described question prompt lists (QPLs), either as a stand-alone tool or as part of a multifaceted programme; two studies described decision aids (DAs). All QPLs and one DA were considered feasible by both patients with advanced cancer and healthcare professionals. Two studies reported on the effectiveness of QPL use, revealing a decrease in patient anxiety and an increase in cues for discussing end-of-life care with physicians. The effectiveness of one DA was reported; it led to more understanding of the treatment in patients.
CONCLUSIONS: Use of QPLs or DAs, as a single intervention or part of a programme, may help in communicating about treatment options with patients, which is an important precondition for making informed decisions.
OBJECTIVES: The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer.
METHODS: Semi-structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis.
RESULTS: Twenty-four patients and eight HCPs participated. Two overarching themes and five sub-themes emerged: Theme one-referral process: timing and triggers, responsibility. Theme two-engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care.
CONCLUSION: There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process.
AIMS AND OBJECTIVES: The aim was to explore how nurses experience compassionate care for patients with cancer and family caregivers in different phases of the palliative pathway.
BACKGROUND: Compassion is fundamental to palliative care and viewed as a cornerstone of high-quality care provision. Healthcare authorities emphasize that patients should have the opportunity to stay at home for as long as possible. There are, however, care deficiencies in the palliative pathway.
DESIGN: This study employed a qualitative design using focus groups and a hermeneutic approach.
METHODS: Four focus groups with three to seven female nurses in each group were conducted in Mid-Norway in 2018. Nurses' ages ranged from 28-60 years (mean age = 45 years), and they were recruited through purposive sampling (N = 21). Compassionate care was chosen as the theoretical framework. Reporting followed the COREQ guidelines.
RESULTS: Three themes expressing compassionate care related to different phases of the pathway were identified: (a) information and dialogue, (b) creating a space for dying and (c) family caregivers' acceptance of death.
CONCLUSIONS: This study showed that it was crucial to create a space for dying, characterized by trust, collaboration, good relationships, empathy, attention, silence, caution, slowness, symptom relief and the absence of noise and conflict.
RELEVANCE TO CLINICAL PRACTICE: The quality of compassion possessed by individual practitioners, as well as the overall design of the healthcare system, must be considered when creating compassionate care for patients and their family caregivers. Nursing educators and health authorities should pay attention to the development of compassion in education and practice. Further research should highlight patients' and family caregivers' experiences of compassionate care and determine how healthcare systems can support compassionate care.
Background: The growing trend in providing palliative care and end-of-life services has dictated that healthcare providers be adequately trained to care for people with serious illnesses, such as multiple sclerosis (MS) and neuromyelitis optica spectrum disorder (NMOSD). These progressive inflammatory diseases lead to physical, cognitive and emotional deficits and have exceptionally high care demands leading to high levels of distress. Because the impact on the delivery of patient care is influenced by the specialists' knowledge and comfort discussing end-of-life issues, it is concerning that interventions to address unmet palliative care needs in MS and NMOSD rarely include clinician-patient dyads.
Objectives: To evaluate the neurology clinicians' knowledge and level of comfort discussing palliative care and end-of-life issues.
Design: A cross sectional survey was conducted. The statistical analyses included frequencies, chi square statistics and logistic regression.
Setting/Subjects: 414 MS specialists answered an online anonymous survey. The survey was conducted using email distributions to MS professionals through the Consortium of MS Centers (CMSC), the International Organization of MS Nurses (IOMSN) and the UK Nurses' MS Organization.
Measurement: The "End of Life Professional Caregiver Survey" (EPCS) was used to collect data.
Results: The majority of the multidisciplinary professionals were female, white, nurses, and older than 40 years of age. 41% had their own advance directives and 57.6% had end-of-life basic training. There was a statistically significant association between end-of-life training or having advance directives and comfort discussing palliative care and end of life issues. Professionals that had basic end-of-life training and their own advance directives had higher comfort discussing code status, specific end-of-life issues, and advance directive planning.
Conclusions: Basic end-of-life training and having advance directives among MS professionals were associated with better communication of palliative care and end-of-life domains with patients and their care partners.
Background: A major goal of hospice care is to provide individually tailored emotional and spiritual support to caregivers of hospice patients.
Objectives: Examine the association between reported emotional support and caregivers' overall rating of hospice care, overall and by race/ethnicity/language.
Subjects: We analyzed survey data corresponding to 657,805 decedents/caregivers who received care from 3160 hospice programs during January 2017–December 2018.
Measurements: Linear regression models examined the association between caregiver-reported receipt of emotional and spiritual support (“too little” vs. “right amount” vs. “too much”) and overall rating of the hospice (0 vs. 100 rating). Interaction terms assessed variation in this association by race/ethnicity/language.
Results: “Too much” emotional support was less common than “too little,” except for caregivers of Hispanic decedents responding in Spanish. “Too little” support was strongly associated with lower hospice ratings for all groups (compared to “right amount” of support, p < 0.001). In contrast, the negative association between “too much” support and hospice rating was much smaller (p < 0.001) among caregivers of white and black decedents. “Too much” support was associated with more positive ratings among caregivers of Hispanic decedents (p < 0.001).
Conclusions: Receipt of “too much” support is a less common and much weaker driver of poor hospice ratings than receipt of “too little” support for all groups, and is not always viewed negatively. This suggests that for hospice evaluation, “too much” support should not be scored equivalently to “too little” support and that providing enough support should be a hospice priority.
BACKGROUND: Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment.
METHOD: In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life.
RESULTS: Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined.
CONCLUSION: Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life.
OBJECTIVE: Practitioners are often reluctant to engage in conversations that acknowledge patient's health concerns. This can affect patient and family carer psychological well-being. The Attitude to Health Change scales, adapted from the validated Adult Attitude to Grief scale, may have potential to address the psychological impact of illness and facilitate conversations in palliative care. To explore how health and social care professionals experience using the Attitude to Health Change Scales within hospice settings.
METHODS: Qualitative focus groups with practitioners currently using the Attitude to Health Change scales in three UK hospices. Two researchers conducted the interviews, developed the thematic framework and independently coded the transcripts using a framework analysis approach.
RESULTS: Three focus groups (n = 21 practitioners). The scale was used to assess and reassess levels of vulnerability and resilience to identify the need for support and to facilitate structured in-depth conversations. Factors that influenced scale implementation included the following: practitioner personal comfort and training; patient and family carer willingness to engage with the scales and having a practitioner "champion" within the organisation.
CONCLUSION: This exploratory work has identified the potential value of the scales for assessment and to facilitate conversations. Further research needs to incorporate the views of patients and family carers.
In March 2020, Montefiore Health System in the Bronx, New York, received an influx of adults who were critically ill with coronavirus disease (COVID-19). The Children’s Hospital at Montefiore (CHAM), a 130-bed facility attached to an adult hospital, accommodated adult patients in the PICU, inpatient wards, and post-anesthesia care unit. CHAM pediatric faculty and housestaff were deployed to serve as primary care physicians and subspecialists for these adults (up to 84 years old), anticipating up to 100 patients.
Among many challenges faced was the commitment by the pediatric faculty and staff to find a way to continue family-centered and compassionate care in the face of social distancing rules during the pandemic. Our goal was to preserve the patient’s humanity and their relationship to family and friends who were not permitted to visit. There is an ethical imperative to provide palliative care during a crisis when lives will be lost. As a result, we chose to rapidly expand our palliative care capabilities by training frontline medical providers and enlarging our pediatric palliative care presence to serve each adult admitted with COVID-19.
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.