OBJECTIVES: Family meetings (FMs) between clinicians, patients and family are recommended as a valuable communication and care planning method in the delivery of palliative care. However, there is a dearth of knowledge regarding FM characteristics, with few studies describing the prevalence, circumstances and content of FMs. The aims of this study were to: (1) measure the prevalence of FMs, (2) examine circumstance and timing of FMs, and (3) explore the content of FMs.
METHODS: A retrospective medical record audit was conducted of 200 patients who died in an Australian hospital of an expected death from advanced disease. Details of FMs were collected using an audit tool, along with patient demographics and admission data.
RESULTS: 33 patients (16.5%) had at least one FM during their inpatient stay. The majority of FMs occurred for patients admitted to an inpatient palliative care unit (59.5%) and were most commonly facilitated by doctors (81.0%). Patient attendance was frequent (40.5%). FM content fell into six categories: medical information, supportive communication behaviours of clinicians, psychosocial support for patients and families, end-of-life discussions, discharge planning and administrative arrangements.
CONCLUSIONS: Despite the benefits FMs confer, FMs appear to be infrequently used at the end of life. When FMs are used, there is a strong medical focus on both facilitation and content. Available FM documentation tools also appear to be underused. Clinicians are encouraged to have a greater understanding of FMs to optimise their use and adopt a proactive and structured approach to the conduct and documentation of FMs.
In November 2017, the Victorian Voluntary Assisted Dying (VAD) Act was passed enabling people with a progressive terminal illness to end their life voluntarily. Heated debate abounded including, to some extent within palliative care, which was also challenged with developing processes around the legislation enactment.
OBJECTIVE: In response, the lead author convened a series of meetings of palliative care physicians: 1. To share ideas about preparations being undertaken within services; and 2. To re-establish professional cohesion following the divide that the legislation had presented.
DESIGN: Setting/Participants: A series of three closed meetings were held between the legislation passage and its implementation, with all Victorian palliative care physicians invited to attend. Meetings were facilitated by an experienced psychiatrist from outside the field.
RESULTS: These meetings proved very valuable as physicians collectively sought to define and respond to challenges, simultaneously reflecting on the personal and professional implications for individuals and the field. Key areas raised including gauging institutional 'readiness' for the legislation through staff surveys; the educational role of palliative care staff of the legislation implications; communication skills training; the role (if any) of palliative care in the processes of VAD; and the perceptions of palliative care itself in health services and the community. It was during the processes of discussing challenges and sharing solutions that the attendees appeared to re-affirm their professional interconnections. A description of the key elements of these discussions may be useful to others who may yet face similar circumstances with the introduction of VAD legislation.
Objective: The aim of this study was to examine the effectiveness and efficiency of interprofessional case conferences on home-based end-of-life care to bridge perceptions gaps regarding ethical dilemmas among different healthcare professionals and analyze essential issues extracted the interprofessional discussions.
Patients and Methods: The participants could spend only a limited amount of time after their working hours. Therefore, we shortened and simplified each of three case scenarios so that the discussions do not last longer than 90 minutes. For the case conferences, we selected 3 cases, which entailed the following ethical dilemmas pertaining to home-based end-of-life care: refusal of hospital admission, passive euthanasia, and emergency transport. Participant responses were audio-recorded, transcribed, and analyzed using qualitative content analysis and Jonsen's four topics approach.
Results: A total of 136 healthcare professionals (11 physicians, 35 nurses, and 90 care workers) participated in the case conferences. The physicians, nurses, and care workers differed in their perceptions of and attitudes toward each case, but there were no interprofessional conflicts. Despite the short duration of each case conference (90 minutes), the participants were able to discuss a wide range of medical ethical issues that were related to the provision of appropriate home-based end-of-life care to older adults. These issues included discrimination against older adults (ageism), self-determination, an unmet desire for caregiver-patient communication, insufficient end-of-life care skills and education, healthcare costs, and legal issues.
Conclusion: The physicians, nurses, and care workers differed in their perceptions of and attitudes toward each case, but there were no interprofessional conflicts.
OBJECTIVE: This pilot study set out to evaluate the feasibility and efficacy of an interactive, peer-led, health engagement workshop to improve confidence and comprehension related to advance care planning (ACP) among young adults. Secondarily, this study evaluated if such workshops could promote ACP related behavior changes within this population.
METHODS: This observational cohort study utilized a repeated measures, mixed-method design. Six hour-long, in-person workshops were conducted with undergraduate students during meetings of university student organizations. Participants were evaluated across 3 mixed-method surveys, evaluating confidence, knowledge, and behaviors related to ACP prior to participation, directly after, and during a 2-week follow-up.
RESULTS: Workshop participation improved the average participant confidence and knowledge related to ACP as well as encouraged some participants to engage in discussions related to end-of-life care with friends and family. Alongside the impact of the workshops on knowledge and confidence, participants positively evaluated the design of the workshops through collected qualitative feedback.
CONCLUSION: These results are encouraging in assessing this population's willingness to learn about end-of-life care planning. The tools developed and the corresponding results should be used for further exploration of engaging the young adult population in ACP to promote improved healthcare outcomes.
OBJECTIVE: Our aim was to synthesise the available evidence surrounding the structure, processes and outcomes of family meetings in the paediatric palliative care literature.
METHODS: We undertook an integrative literature review informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The protocol was registered with PROSPERO (CRD42019138938). Electronic databases were systematically search using keywords and hand searching of reference articles and grey literature was also completed.
RESULTS: Ten empirical studies and five theoretical articles were included in the synthesis. Empirical studies provided more information about meeting structure, whereas theoretical articles more frequently described a desired process for planning and undertaking meetings. No articles identified how the success of a meeting was defined or made recommendations for doing so. Despite reports that family meetings are commonly occurring, few articles described outcomes from either the family or clinician perspectives.
CONCLUSIONS: Family meetings are essential communication strategies commonly used in paediatric palliative care, yet there is little guidance about how meetings should be organised and conducted, who should participate and when they should occur. The limited data available on the outcomes of family meetings suggest improvements are required to meet the needs of families. We present a framework that synthesises the available evidence. The framework offers an overview of the elements to consider when planning for and undertaking family meetings in paediatric palliative care and may be useful for both clinicians and researchers.
Family meetings are fundamental to the practice of palliative medicine and serve as a cornerstone of intervention on the inpatient palliative care consultation service. The COVID-19 pandemic disrupted the structure and process of in-patient family meetings, due to necessary but restrictive visitor policies that did not allow families to be present in the hospital. We describe implementation of telemedicine to facilitate electronic family (e-family) meetings to facilitate in-patient palliative care. Of 67 scheduled meetings and performed by the palliative care service, only 2 meetings were aborted for a 97% success rate of scheduled meetings occurring. On a five-point Likert-type scale, the average clinician rating of the e-family meeting overall quality was 3.18 (SD, 0.96). Of the 10 unique family participants that agreed to be interviewed, their overall ratings of the e-family meetings were high. Over 80% of respondent families participants reported that they agreed or strongly agreed that they were able to ask all of their questions, felt comfortable expressing their thoughts and feelings with the clinical team, felt like they understood the care their loved one received, and that the virtual family meeting helped them trust the clinical team. Of patients who were able to communicate 50% of family respondents reported that the e-family meeting helped them understand their loved one’s thoughts and wishes.
Background: Fetal malformations are diagnosed prenatally in nearly 3% of pregnancies, and [about] 1.2% are major malformations. After prenatal diagnosis, it is imperative to consider families' values and to support their decision-making process. Prenatal palliative care is a growing field mainly based on family conferences. The prenatal care setting is unique and differs from postnatal and adult care. There are no descriptions of family conferences in prenatal palliative care. The descriptions of themes that emerge from the prenatal care conference charts may guide professionals in this delicate task, and help determine the causes of suffering and identify family values before the birth of the infant.
Aim: To perform a content analysis of medical records of family conferences and to describe the main themes observed during prenatal palliative care follow-up after the diagnosis of a life-limiting fetal condition.
Design: This is a retrospective study of medical records of family conferences from a perinatal palliative care group, the GAI group, between May 2015 and September 2016.
Setting/Participants: Families with estimated perinatal mortality >50% and eligibility for follow-up at our tertiary fetal medicine center were enrolled. We included women who participated in at least one family conference with the GAI group and who had given birth at the clinic or delivered at another center and returned for the postnatal family conference.
Results: Fifty women met the inclusion criteria. Five main themes and 18 categories emerged from the charts and are described in detail. A model of follow-up in prenatal palliative care is proposed based on the themes and categories identified.
onclusions: This analysis may guide health professionals who seek to better identify family needs and values and organize follow-up during prenatal palliative care.
Objectives: Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers.
Methods: A longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys.
Results: In total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016–2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients’ death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: -44.04% and 95% CIs -75.65 to -12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: -0.35% and 95% CI -0.58 to -0.11 on IES and coefficient: -0.22% and 95% CI -0.40 to -0.05 on CES-D) among caregivers following the patients’ death. Caregivers’ who accepted the concept of palliative care had fewer psychological symptoms after patients’ death (coefficient: -3.29% and 95% CI -6.32 to -0.25 on IES and coefficient: -3.22% and 95% CI -5.24 to -1.20 on CES-D).
Conclusions: Palliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.
BACKGROUND: Family conferences (FCs) in the intensive care unit play an important role in reducing the psychological burden of patients' families at the end of life. However, no studies have clarified the specific roles and contributions of nurses related to FCs for terminally ill patients in critical care and their families.
AIMS AND OBJECTIVES: To clarify nurses' contribution to FCs for terminally ill patients in critical care and their families and examine the priority of each item.
DESIGN: A modified Delphi method was used.
METHODS: This study consisted of two phases. In phase 1, an initial list was developed based on a literature review, individual interviews, and a focus group interview. Phase 2 involved two rounds of the Delphi survey. Practitioners (N = 55) from hospitals across Japan were recruited to the Expert Panel for phase 2. They were asked to rate each nurse's contribution in terms of its importance using a 9-point Likert scale (1 being "not important at all" to 9 being "very important"). Fifty participants responded to round 1 of the survey, and 46 participants completed round 2. If at least 80% of the panellists chose an importance level of 7 or higher, the item was considered "important".
RESULTS: The 65 items of the potential list were classified into three domains: preparation (16 items), discussion and facilitating meaning during a FC (32 items), and follow up after a FC (17 items). The expert panel determined that, of 65 items, 49 items on the proposed list of nurses' contribution were considered important.
CONCLUSIONS: This study clarified nurses' contribution to FCs, with consensus on their importance by expert nurses.
RELEVANCE TO CLINICAL PRACTICE: This study could be useful for improving and ensuring the quality of nurses' contribution to FCs and promoting collaboration between nurses and other medical professionals.
Background: Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams.
Objective: This case discussion focuses on the care of patients and families surrounding family meetings to highlight the crucial role of the PCSW in (1) preparing the family; (2) participating in the provider meeting; (3) participating in the family meeting; and (4) following up after the meeting. The aim is to illuminate how the PCSWs can demonstrate their unique and essential skill set to medical teams and as a means of furthering the work of psychosocial clinicians throughout medical systems.
Conclusion: As the medical model continues to shift toward family-centered care, it is crucial for medical teams to optimize their partnership with patients and families. PCSWs can offer a trauma-informed biopsychosocial-spiritual lens that is instructed by continuity of care and exemplary clinical and rapport-building skills. PCSWs can play a critical role in optimizing communication, support, collaboration, and family-centered whole-person care.
Background: Family meetings are often conducted in palliative care, but there is no universal agreed or accepted model. A new model of Patient-Centered Family Meetings is proposed whereby the patient sets the agenda.
Aim: To seek palliative care clinicians' perceptions and experiences of Patient-Centered Family Meetings (“Meetings”) and their acceptability and feasibility in the inpatient specialist palliative care setting.
Design: A qualitative study used semistructured interviews. Theoretical and procedural direction was taken from grounded theory with thematic content analysis using the constant comparative method.
Setting/Participants: Interviews were conducted with clinicians (n = 10) at the intervention site who had participated in a Meeting.
Results: Four themes were identified: (1) a patient-set agenda gives patients a “voice”; (2) a patient-set agenda and the Meeting model enhances clinicians' understanding of patients and families; (3) the Meeting model was perceived to be acceptable; and (4) the Meeting model was perceived to be only feasible for selected patients.
Conclusion: Clinicians perceived that a patient-set meeting agenda with defined questions enhanced their knowledge of the patient's issues and their understanding of the patient and their family's needs. The patients' most important issues often differed from the clinicians' expectations of what might be important to individual patients. There were contrasting views about the acceptability and feasibility of these Meetings as standard practice due to clinician time constraints and the Meeting not being required or relevant to all patients. Given the perceived benefits, the identification of patients and families who would most benefit is an important research priority.
Chronic respiratory diseases are progressive and often life-limiting illnesses. Patients experience debilitating and troubling symptoms that impact on their quality of life. Despite this, there is under-recognition of patients who may be entering the final year of their life and require palliative care services. The Royal Wolverhampton NHS Trust in partnership with Compton Care has established chronic respiratory disease multidisciplinary team meetings and a combined respiratory and palliative care outpatient clinic to address these issues. This article presents the impact of this service, now in to its fourth year, of delivering palliative care services to patients with chronic respiratory disease.
Le Phare Enfants et Familles (Phare) est un organisme à but non lucratif qui oeuvre en milieu communautaire depuis vingt ans. Pour tenter d'approfondir les connaissances portant sur la prestation des soins palliatifs et de fin de vie (SPFV) en milieu communautaire, nous avons analysé notre expérience d'équipe. Parmi nos pratiques régulières, nous tenons une rencontre de débreffage à froid, c'est-à-dire de quelques jours à quelques semaines après chaque décès à la maison de soins palliatifs (MSP). Nous avons conduit 23 rencontres de débreffage au cours des quatre dernières années. Nous avons procédé à une analyse globale des thèmes abordés lors de chaque réunion, afin d'examiner l'expérience collective de l'équipe. Les thèmes principaux issus des rencontres des quatre dernières années ont été analysés et regroupés selon les défis et les succès rapportés par les participants.
[Extrait du résumé]
BACKGROUND: Family meetings in palliative care can enhance communication with family members and identify unmet needs. However, the patient's voice may not be heard.
METHODS: This pre and post-test quality improvement project was conducted from 2013-2014 and investigated a patient-centered family meeting, which is a different approach to palliative care family meetings, to determine its feasibility and acceptability for patients, family and the palliative care team. Newly admitted patients to an Australian in-patient specialist palliative care unit were invited to ask anyone they wished to join them in a meeting with the palliative care team and to identify issues they wished to discuss. Consenting inpatients were interviewed shortly after admission; participated in a family meeting and re-interviewed 2-3 days after the meeting. Family members provided feedback at the end of the meeting. A focus group was held with staff for feedback on this new approach for family meetings. Meetings were observed, documented and thematically analyzed.
RESULTS: Thirty-one newly admitted patients were approached to participate in a family meeting. Eighty-four percent had family meetings and the majority (96%) was attended by the patient. Thematic analysis revealed 69% of patient-centered meetings raised end-of-life concerns and 54% were "family-focused".
CONCLUSIONS: Patient-centered family meetings in palliative care were shown to be feasible and acceptable for staff, patients and family members. Many patients and families spontaneously shared end-of-life concerns. A patient-centered approach to family meetings that includes active patient involvement may provide additional and valued opportunities for patients and families to: express mutual concerns, deliver messages of comfort and appreciation, and prepare for death. Further investigation of this approach, including families' bereavement outcomes, is warranted.
BACKGROUND: A structured family meeting (FM) is recommended within 72 h of admission for trauma patients with high risk of mortality or disability. Multidisciplinary FMs (MDFMs) may further facilitate decision-making. We hypothesized that FM within three hospital days (HDs) or MDFM would be associated with increased use of comfort measures.
MATERIALS AND METHODS: We reviewed all adult trauma deaths at an academic level 1 trauma center from December 2014 to December 2017. Death in the first 24 h or on nonsurgical services were excluded. Demographics, injury characteristics, FM characteristics, and outcomes such as length of stay (LOS) were recorded. Early FM was defined as occurring within three HDs; MDFM required attendance by two or more specialty teams.
RESULTS: A total of 177 patients were included. Median LOS was 6 d (interquartile range 4-12). FMs were documented in 166 patients (94%), with 57% occurring early. MDFM occurred in 49 (28%), but usually occurred later (median HD 5 and interquartile range 2-8). Early FM was associated with reduced LOS (5 versus 11 d, P < 0.001), ventilator days (4 versus 9 d, P < 0.001), and deaths during a code (1.2% versus 13.2%, P < 0.001). MDFM was associated with higher use of comfort measures (88% versus 68%, P < 0.05). Of patients who transitioned to comfort care status (n = 130, 73.4%), code status change occurred earlier if an early FM occurred (5 versus 13 d, P < 0.001).
CONCLUSIONS: MDFM is associated with increased comfort care measures, whereas early FM is associated with reduced LOS, ventilator days, death during a code, and earlier comfort care transition.
BACKGROUND: Palliative simulation is a beneficial bridge between theory and practice; however, it can be emotionally laden. Often overlooked during a debrief session of a palliative simulation is ensuring that participants have the skills to process the feelings they may experience.
METHOD: The purpose of this mixed-methods concurrent triangulation study was to understand the perceived value and usefulness of debriefing in palliative simulation process feelings and emotions.
RESULTS: The simulation modality affects the intensity of feelings. A debriefer who is skilled in both debriefing simulation and coping with emotionally stressful situations allowed students to feel prepared to cope with their own feelings about palliative care. Having other students talk about their feelings in debriefing helped students to normalize their feelings.
CONCLUSION: The debriefing in palliative-based simulations requires additional considerations regarding modality and the skill set of the debriefer to adequately assist students to process feelings and emotions.
BACKGROUND: We sought to increase intensive care unit-family meeting (ICU-FM) documentation in the electronic health record in Veterans Affairs (VA) hospitals.
MEASURES: Primary outcomes were proportion of VA decedents with ICU-FM and Bereaved Family Survey-Performance Measure (BFS-PM) scores of "excellent".
INTERVENTION: Quality Improvement (QI) project, clinical champion and ICU-FM templates, were implemented in nine participating VA facilities. ICU-FMs and BFS-PM were determined in decedents between 2011-2018.
OUTCOMES: ICU-FM increased from 3% to 28% in participating vs. 5% to 6% in non-participating facilities over time. Participating facilities were 5-fold more likely to have ICU-FMs among ICU decedents (OR=5.69, [4.45-7.28]). Facility-wide excellent BFS-PM scores increased by 19% in participating vs. non-participating facilities at the end of the observation period (OR=1.19, [1.10-1.30] but no difference between groups was observed in patients who died in the ICU.
CONCLUSIONS: Increasing ICU-FMs is necessary but not sufficient to improve family-reported satisfaction following an ICU death.
PURPOSE: Family meetings in the medical intensive care unit can improve outcomes. Little is known about when meetings occur in practice. We aimed to determine the time from admission to family meetings in the medical intensive care unit and assess the relationship of meetings with mortality.
METHODS: We performed a prospective cohort study of critically ill adult patients admitted to the medical intensive care unit at an urban academic medical center. Using manual chart review, the primary outcome was any attempt at holding a family meeting within 72 hours of admission. Competing risk models estimated the time from admission to family meeting and to patient death or discharge.
RESULTS: Of the 131 patients who met inclusion criteria in the 12-month study period, the median time from admission to family meeting was 4 days. Fewer than half of patients had a documented family meeting within 72 hours of admission (n = 60/131, 46%), with substantial interphysician variability in meeting rates ranging from 28% to 63%. Patients with family meetings within 72 hours were 30 times more likely to die within 72 hours (32% vs 1%, P < .001). Of the 55 patients who died in the intensive care unit, 27 (49%) had their first family meeting within 1 day of death.
CONCLUSIONS: Family meetings occur considerably later than 72 hours and are often held in close proximity to a patient's death. This suggests for some physicians, family meetings may primarily be used to negotiate withdrawal of life support rather than to support the patient and family.
La tension entre les valeurs en conflit peut faire naître des désaccords au sein de l’équipe de soins. Face à un choix crucial, grave et irréversible, la déontologie n’est plus suffisante : elle doit être assortie d’une réunion d’éthique ad hoc. La délibération collégiale repose sur un “contrat moral” entre les membres de l’équipe qui s’engagent à respecter les principes de l’éthique et les règles de l’éthique de discussion, en tant que repères communément partagés.