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.
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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.
BACKGROUND: Evidence regarding the impact of early palliative family conferences (PFCs) and decision to withdraw life-sustaining treatment (DTW) on healthcare costs in an intensive care unit (ICU) setting is inconsistent.
METHODS: We retrospectively analyzed patients who died in an ICU from 2013 to 2016. PFCs held within 7 days after ICU admission and DTWs were verified by reviewing medical records and claims data. Comparisons were first made between patients with and without DTWs, and secondly, between DTW patients with and without PFCs within 7 days. Propensity score matching methods were used to examine the difference in costs between patients with and without DTWs and PFCs within 7 days.
RESULTS: Of the 579 patients included, those with DTWs (n = 73) had a longer ICU stay than those without (n = 506) (12.9 ± 7.1 vs. 8.4 ± 9.6 days, p < 0.001). The DTW patients were more likely to have a "do-not-resuscitate" order (p < 0.001) and PFCs within 7 days (p < 0.001) and had lower healthcare costs (USD 7358 ± 4116 vs. 8669 ± 9,535, p = 0.038). After matching, healthcare cost reduction for patients with DTWs, compared with those without DTWs, was USD 3467 [95% CI, 915-6019] (p < 0.001). Compared with DTW patients without PFCs within 7 days, the costs for DTW patients with PFCs within 7 days further reduced to USD 3042 [95%CI, 1358-4725] (p < 0.001).
CONCLUSIONS: Palliative family conferences held within 7 days after ICU admission with decisions to withdraw life-sustaining treatments significantly lowered healthcare costs.
This case study describes the involvement of a patient representative on a palliative care committee and outlines some of the issues that arose as her health deteriorated. A summary of the increasing involvement of patient representation within health care governance is provided, and some of the challenges raised by the case, many of which may be relatively unique to palliative care, are discussed. It is hoped that presentation of this fairly novel scenario provides other palliative care providers with the opportunity to consider their own processes and practices around managing a similar situation should it occur in their healthcare setting.
OBJECTIVE: Shared decision making is essential for patients and their families when facing serious and life-threatening diseases. This study aimed to evaluate the impact of patient-centred and family-centred care meetings (PFCCM) on intensive measures and resource utilisation during end-of-life (EOL) hospitalisation among terminally ill patients.
DESIGN AND SETTING: A retrospective cross-sectional study using electronic medical records was conducted in a tertiary referral medical centre in Taiwan.
PARTICIPANTS: We identified 6843 deceased patients with terminal illness who either received or did not receive PFCCM during EOL hospitalisation between January 2013 and December 2015.
PRIMARY AND SECONDARY OUTCOME MEASURES: Patients who were transferred to the intensive care unit (ICU). Those who underwent invasive or non-invasive mechanical ventilation, tracheostomy, haemodialysis and surgical intervention during the final hospitalisation were determined by the use of intensive care measures; secondary measures were individual total and daily medical expenditures. A generalised estimating equation (GEE) model was used to compare the differences between the two groups. OR and beta coefficients (ß) with 95% CI were estimated.
RESULTS: This study identified 459 patients (6.7%) who received PFCCM during EOL hospitalisation. Multivariate analyses showed that patients who received PFCCM were less likely to have ICU admissions (OR 0.44, 95% CI 0.34 to 0.57), undergo surgical interventions (OR 0.74, 95% CI 0.58 to 0.95) and invasive mechanical ventilation (OR 0.50, 95% CI 0.38 to 0.66) during the final hospitalisation, after adjusting for patient demographics, clinical conditions and year of admission. Additionally, a significant decrease in daily medical expenditures was observed in PFCCM patients (ß -0.18, 95% CI -0.25 to -0.12) than in non-PFCCM patients.
CONCLUSIONS: Patient-physician discussion through PFCCM is associated with less intensive care utilisation and daily medical expenditure during EOL hospitalisation in terminally ill patients.
Family meetings are important events in the care of hospitalized patients to ensure that patients and families understand what is happening medically, to support the patient and family emotionally, and to promote shared decision making.
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