But de l'étude : évaluer l'efficacité analgésique de l'injection de morphiniques par une chambre à cathéter implantable intrathécal pour les douleurs cancéreuses réfractaires.
Type d'étude : étude prospective expérimentale, mono centrique.
Matériel et méthode : nous avons inclus tous les patients de plus de 18 ans vus en consultation douleur, de mars 2015 à juin 2018 qui présentaient une douleur chronique d'origine cancéreuse. Ceux qui présentaient une contre-indication à la technique ou une injection-test non efficace non pas été inclus. Mise en place du cathéter intrathécal lombaire et administration de la morphine dont la posologie est fonction du résultat obtenu lors de l'injection-test. Les critères de jugements principaux sont : l'évaluation de l'intensité de la douleur par l'échelle visuelle analogique, et la qualité de vie des malades. L'analyse statistique a utilisé le logiciel Statistical Package for the Social Sciences.
Résultats : 61 patients étaient inclus dans l'étude, mais seulement 24 patients ont bénéficié d'un site implantable intrathécal. L'âge moyen à l'instauration de l'analgésie était de 55,45 ans plus ou moins 7,12 années. Le délai entre le diagnostic et l'implantation était de 3,61 ans en moyenne. La localisation du cancer primitif est essentiellement génito-urinaire et digestif, et la localisation des douleurs est essentiellement pelvi-péritonéale. On note que la douleur a chuté de 54,58 %, avec une nette amélioration de la qualité de vie. Un cas de fuite du liquide céphalorachidien, une infection locale au point de ponction, et un cas d'infection de la loge, qui ont répondu au traitement.
Conclusion : au terme de cette analyse, il fau bien reconnaître que l'analgésie intrathécale procure une analgésie de très bonne qualité, mais il existe une proportion non négligeable de complications, pour cela elle n'est proposée qu'aux patients qu'en dernier recours.
Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications.
Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis.
Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex.
Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included.
Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts.
Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.
Context: Programs identifying patients needing palliative care and promoting advance care planning (ACP) are rare in Asia.
Objectives: This interventional cohort study aimed to identify hospitalized patients with palliative care needs using a validated Palliative Care Screening Tool (PCST), examine the ability of the PCST to predict mortality, and explore effects of a pragmatic ACP program targeted by PCST on the utilisation of life-sustaining treatment during the last three months of life.
Methods: In this prospective study, we used PCST to evaluate patients’ palliative care needs between 2015 and 2016 and followed patients for 3 months. ACP with advance directives (AD) were systematically offered to all patients with PCST score =4.
Results: Of 47,153 hospitalized patients, 10.4% had PCST score =4. During follow-up, 2,121 individuals died within three months of palliative care screening: 1,225 (25.0%) with PCST score =4 and 896 (2.1%) with PCST score <4. After controlling for co-variates, PCST score =4 was significantly associated with a higher mortality within 3 months of screening (adjusted odds ratio [AOR], 6.86; 95% confident interval [CI], 6.16-7.63). Moreover, ACP consultation (AOR=0.78, 95%CI: (0.66-0.92) and AD completion (AOR=0.49, 95%CI: 0.36-0.65) were associated with a lower likelihood of receiving life-sustaining treatments during the last 3 months of life.
Conclusions: We demonstrated the feasibility of implementing a comprehensive palliative care program to identify patients with palliative care needs and promote ACP and AD in East Asia. ACP consultation and AD completion were associated with reduced utilization of life-sustaining treatments during the last 3 months of life.
BACKGROUND: End-stage renal disease (ESRD) patients have significant symptom burden. Reduced provider awareness of symptoms contributes to underutilization of symptom management resources.
METHOD: We hypothesized that improved nephrologist awareness of symptoms leads to symptom improvement. In this prospective, multicenter interventional study, 53 (age >65) ESRD inpatients underwent symptom assessment using the modified Edmonton Symptom Assessment System (ESAS) at admission and 1-week post-discharge. Physicians caring for the enrollees were asked if they felt their patients would die within the year, and then sequentially randomized to receive the results of the baseline survey (group 1) or to not receive the results (group 2).
RESULTS: Fifty-two patients completed the study; 1 died. Baseline characteristics were compared. For 70% of the total cohort, physicians reported that they would not be surprised if their patient died within a year. There was no difference in baseline scores of the patients between the 2 physician groups. Severity ratings were compared between in-hospital and post discharge scores and between physicians who received the results versus those that did not. Total ESAS scores improved more in group 1 (12.9) than in group 2 (9.2; p = 0.04). Among individual symptoms, there was greater improvement in pain control (p = 0.02), and nominal improvement in itching (p = 0.03) in group 1 as compared to group 2. There were 3 palliative care consults.
CONCLUSIONS: Our findings reinforce the high symptom burden prevalent in older ESRD patients. The improvement in total scores, and individual symptoms of pain and itching in group 1 indicates better symptom control when physician awareness is increased. Residual symptoms post hospitalization and low utilization of palliative care resources are suggestive of a missed opportunity by nephrologists to address the high symptom burden at the inpatient encounter, which is selective for sick patients and/or indication of inadequacy of dialysis to control these symptoms.
OBJECTIVE: To investigate the feasibility of using the Patient Dignity Question (PDQ) in a small rural hospice setting.
DESIGN: Prospective study.
SETTING: The 5-bed Algonquin Grace Hospice in Huntsville, Ont.
PARTICIPANTS: Nineteen patients who met the research criteria and who were admitted to the hospice from September 2015 to December 2016.
METHODS: Participants completed the Patient Dignity Inventory and modified versions of the Edmonton Symptom Assessment Scale and Integrated Palliative Care Outcome Scale before and after the PDQ interviews.
MAIN FINDINGS: While each of the 19 PDQ interviews was unique, there were many consistencies regarding accomplishments (eg, being a good parent), hopes (eg, one's need of being respected), and fears (eg, concerns about pets) that emerged from participants' stories. Hospice staff found the documents from PDQ interviews to be very valuable in their understanding of patients. Staff and patients unanimously wanted the program to continue. An unexpected benefit was the response of the patients' families who were deeply moved by the legacy documents, often sharing them following their family member's death.
CONCLUSION: The PDQ is a dignity-conserving intervention that serves as a meaningful end-of-life legacy document that benefits patients, staff, and families. Using the PDQ at the hospice helped patients feel truly heard, and increased caregivers' compassion and understanding of patients' needs.
Background: Timely identification of people who are at risk of dying is an important first component of end-of-life care. Clinicians often fail to identify such patients, thus trigger tools have been developed to assist in this process. We aimed to evaluate the performance of a identification tool (based on the Gold Standards Framework Prognostic Indicator Guidance) to predict death at 12 months in a population of hospitalised patients in South Africa.
Methods: Patients admitted to the acute medical services in two public hospitals in Cape Town, South Africa were enrolled in a prospective observational study. Demographic data were collected from patients and patient notes. Patients were assessed within two days of admission by two trained clinicians who were not the primary care givers, using the identification tool. Outcome mortality data were obtained from patient folders, the hospital electronic patient management system and the Western Cape Provincial death registry which links a unique patient identification number with national death certificate records and system wide electronic records.
Results: 822 patients (median age of 52 years), admitted with a variety of medical conditions were assessed during their admission. 22% of the cohort were HIV-infected. 218 patients were identified using the screening tool as being in the last year of their lives. Mortality in this group was 56% at 12 months, compared with 7% for those not meeting any criteria. The specific indicator component of the tool performed best in predicting death in both HIV-infected and HIV-uninfected patients, with a sensitivity of 74% (68–81%), specificity of 85% (83–88%), a positive predictive value of 56% (49–63%) and a negative predictive value of 93% (91–95%). The hazard ratio of 12-month mortality for those identified vs not was 11.52 (7.87–16.9, p < 0.001).
Conclusions: The identification tool is suitable for use in hospitals in low-middle income country setting that have both a high communicable and non-communicable disease burden amongst young patients, the majority under age 60.
OBJECTIVE: Delirium is a common complication in palliative care patients, especially in the terminal phase of the illness. To date, evidence regarding risk factors and prognostic outcomes of delirium in this vulnerable population remains sparse.
METHOD: In this prospective observational cohort study at a tertiary care center, 410 palliative care patients were included. Simple and multiple logistic regression models were used to identify associations between predisposing and precipitating factors and delirium in palliative care patients.
RESULTS: The prevalence of delirium in this palliative care cohort was 55.9% and reached 93% in the terminally ill. Delirium was associated with prolonged hospitalization (p < 0.001), increased care requirements (p < 0.001) and health care costs (p < 0.001), requirement for institutionalization (OR 0.11; CI 0.069-0.171; p < 0.001), and increased mortality (OR 18.29; CI 8.918-37.530; p < 0.001). Predisposing factors for delirium were male gender (OR 2.19; CI 1.251-3.841; p < 0.01), frailty (OR 15.28; CI 5.885-39.665; p < 0.001), hearing (OR 3.52; CI 1.721-7.210; p < 0.001), visual impairment (OR 3.15; CI 1.765-5.607; p < 0.001), and neoplastic brain disease (OR 3.63; CI 1.033-12.771; p < 0.05). Precipitating factors for delirium were acute renal failure (OR 6.79; CI 1.062-43.405; p < 0.05) and pressure sores (OR 3.66; CI 1.102-12.149; p < 0.05).
SIGNIFICANCE OF RESULTS: Our study identified several predisposing and precipitating risk factors for delirium in palliative care patients, some of which can be targeted early and modified to reduce symptom burden.
Background: Advance directives have been established as a legal document that ensures patients' wishes are followed if/when they cannot make medical decisions for themselves. The concept, advance directive, is rooted in the ethical principle of patient's autonomy. New York State recognizes three types of advance directives: New York State Health Care Proxy, Living Wills, and Do Not Resuscitate (DNR) order. A common misnomer in healthcare is the idea that advance directives are for the elderly or patients with terminal illness. As per New York State statutes, everyone older than 18-years-old should have an advance directive to avoid conflicts in times of crisis. It has been shown that most patients believe it is their physician's responsibility to initiate an advance directive discussion and residents are at the forefront of most health facilities.
Objective: To assess the knowledge and attitude of internal medicine residents towards advance directive and to improve residents' skills and confidence on advance directive discussion.
Design: We carried out a prospective study to assess the knowledge and attitude of the internal medicine residents towards advance directive to validate the need to implement didactic sessions and simulations. Results: Fifty out of the 75 internal medicine residents of Harlem Hospital Center participated in the study. Most of the responders indicated that they lacked sufficient knowledge in advance directive discussion and indicated that they were interested in didactic sessions and simulations related to how to help patients with advance directives.
Conclusion: Our study showed that most of the residents lacked sufficient knowledge in advance directives discussions and the importance of its incorporation into residency training education.
BACKGROUND AND AIM: Healthcare professionals working in palliative care are exposed to emotionally intense conditions. Scientific literature suggests Expressive Writing as a valid tool for the adjustment to traumatic events. For health workers, EW represents an important support to prevent Compassion Fatigue and Burnout. As literature showed that Compassion Satisfaction, Group Cohesion and the Organizational Commitment are protective factors able to counter the onset of Compassion Fatigue and Burnout, the aim of this study is evaluating the effect of Expressive Writing protocol in Palliative Care workers on Compassion Satisfaction, Group Cohesion and Organizational Commitment.
METHODS: A quasi-experimental quantitative 2x2 prospective study was conducted with two groups and two measurements. 66 professionals were included. Outcome variables were measured using: Organizational Commitment Questionnaire, Compassion Satisfaction Rating Scale, ICONAS Questionnaire, Questionnaire for the evaluation of EW sessions.
RESULTS: The parametric analysis through Student t test did not show statistical significance within the experimental group and between the experimental and control groups. One significant difference in the pre-intervention assessment of Normative Commitment t (gl 64) = -2.008 for p< 0.05, higher in the control group, disappeared in the post intervention evaluation. An improvement trend in all variables within and between groups was present, with a positive assessment of utility from the participants.
CONCLUSIONS: This intervention did not significantly impact outcome variables. It is however conceivable that by modifying the intervention methodology, it could prove effective. The positive evaluation by the operators, suggests to keep trying modelling a protocol tailored on Palliative Care professionals.
BACKGROUND: Decisions of withholding or withdrawing life-sustaining treatment are frequent in emergency departments (ED) and patients are often unable to communicate their wishes concerning end of life desires.
OBJECTIVE: To evaluate the participation of general practitioners (GPs) during the decision-making process of withholding or withdrawing life-sustaining treatments in ED.
DESIGN: Prospective observational multicenter study.
PATIENTS: We included patients for whom a decision of withdrawing or withholding life-sustaining treatments was made in ED. For each patient, we enrolled one general practitioner.
MAIN MEASURES: GPs were interviewed about their perception of end of life patient's management and the communication with ED and families.
KEY RESULTS: There were 109 potential patient participants. We obtained answers from 54 (49.5%) of the patient's associated GPs. Only 4 (7.4%) GPs were involved during the decision-making process of withholding or withdrawing life-sustaining treatments. Among GPs, 29 (53.7%) were contacted by family after the decision, most often to talk about their difficult experience with the decision. A majority (94%) believed their involvements in these decisions were important and 68% wished to "always" participate in end of life decisions despite the fact that they usually don't participate in these decisions. Finally, 66% of GPs believed that management of end of life in the emergency department was a failure and should be anticipated.
CONCLUSIONS: GPs would like to be more involved and barriers to GP involvement need to be overcome. We do not have any outcome data to suggest that routine involvement of GPs in all end of life patients improves their outcomes. Moreover, it requires major system and process-based changes to involve all primary care physicians in ED decision-making.
NIH TRIAL REGISTRY NUMBER: NCT02844972.
Background: Parenting a child with a serious life-threatening illness (SLTI) may impact parents' mental health. The protective association of social support with anxiety over time following an acute medical event has not been empirically tested in a sample of parents of children with oncologic and nononcologic serious illnesses.
Objective: To test the potential association of perceived social support with anxiety in parents of children with SLTIs over time.
Design: Prospective cohort study.
Setting/Subjects: Two hundred parents of 158 children in the Decision Making in Serious Pediatric Illness study, conducted at the Children's Hospital of Philadelphia.
Measurements: Parental anxiety and perceived social support were assessed using the Hospital Anxiety and Depression Scale (HADS) and the Social Provisions Scale (SPS). We performed bivariate linear regressions to test cross-sectional and longitudinal associations between the SPS and anxiety scores at baseline, 12 months, and 24 months.
Results: The average SPS total and subscale scores decreased significantly from baseline to 12 months, and increased from 12 to 24 months. The average HADS-Anxiety scores decreased significantly from baseline to 12 months, and remained stable at 24 months. Cross-sectionally, total SPS scores were negatively associated with anxiety scores at each time point. Longitudinally, SPS scores were associated with anxiety scores, although this association weakened in adjusted modeling.
Conclusions: Over a two-year period, higher levels of perceived social support were associated with lower levels of anxiety in parents of seriously ill children. Clinicians and researchers should work to optimize social support for families to improve parental mental health outcomes.
INTRODUCTION: Almost all patients with end-of-life cancer experience cancer-related fatigue; however, there are only a few known effective coping methods.
OBJECTIVES: We will conduct a prospective, multi-center, single-blinded randomized controlled study to evaluate the efficacy of acupuncture for cancer-related fatigue in patients with end-of-life cancer.
METHODS: We will enroll 120 patients with cancer hospitalized in a palliative care unit or receiving consultation from a palliative care team in four hospitals. We will add acupuncture treatment; specifically, contact needle therapy (CNT), consisting of an intervention per week period to the usual care. The primary outcome measure will be the Cancer Fatigue Scale (CFS) score while the secondary outcome measures will be the Numerical Rating Scale (NRS) score for fatigue, pain, and salivary amylase levels.
CONCLUSION: We will evaluate the possibility of using acupuncture therapy, that is, CNT, in relieving fatigue sensation in patients with advanced cancer.
TRIAL REGISTRATION: UMIN000028304, registered on July 21st, 2017; https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000032401.
PURPOSE: Many assert the need for home hospice care. However, limited research has shown its effectiveness. The authors of this study thus evaluated the effectiveness of a home hospice care pilot project regarding (1) early enrollment in hospice care, (2) efficient use of inpatient hospice resources, and (3) enabling terminally ill patients to stay at their preferred place of care.
METHODS: The authors conducted a nationwide prospective observational study. Patients were divided into home hospice care users (ever-users, n = 902) and inpatient-only hospice care users (never-users, n = 8210). Information about hospice service utilization was collected from a web-based registry system. Patients were registered if they started to receive the hospice service after providing written informed consent during the pilot project from March 2016-July 2017.
RESULTS: Most ever-users preferred to stay at home (84.0%), while never-users preferred hospital admission (66.9%). Most ever-users were enrolled in hospice by home care (78.9%) and used both home and inpatient care (72.4%). The overall duration of hospice care was significantly longer among ever-users than never-users (median 39 vs. 15 days, respectively; mean ± SD 59.6 ± 62.8 vs. 24.8 ± 32.1, respectively; p < .001). Participation in the pilot program improved bed utilization (p = .025) and turnover rate (p < .001) of inpatient hospice service.
CONCLUSIONS: Home hospice care enabled early enrollment in hospice services and provided a valid option to patients who wished to stay at home. Policy efforts to facilitate home hospice care are needed.
Background: Few studies have investigated water balance as a predictor of survival in cancer patients in the last days of life.
Objective: To examine the association between extracellular water (ECW), intracellular water (ICW), ratio of ECW to ICW (ECW/ICW), and survival in nonedematous and edematous patients with advanced cancer admitted to a palliative care unit.
Design: A prospective observational study.
Setting/Subjects: Patients with advanced cancer admitted to a palliative care unit.
Measurements: Upon enrollment, bioelectrical impedance analysis was used to assess ECW, ICW, and body composition. We conducted time-to-event analyses using the Kaplan-Meier method, log-rank test, and univariate and multivariate Cox regression analyses.
Results: A total of 190 of 204 patients who participated in this study had ICW and ECW measures available for analysis. The median survival was 10 days (95% confidence interval [CI] 9–12) days. The median ECW, ICW, and ECW/ICW were 18.9 L, 19.1 L, and 1.0 for 72 nonedematous patients, and 21.9 L, 20.1 L, and 1.1 for 118 edematous patients, respectively. In univariate Cox regression analysis, ICW =20 L was associated with a shorter survival in the nonedematous patients (hazard ratio [HR] 1.92, 95% CI 1.10–3.34, p = 0.02) and a longer survival in the edematous patients (HR 0.61, 95% CI 0.41–0.90, p = 0.01). In multivariable analysis, ICW (=20 L vs. >20 L) remained an independent prognostic factor in edematous patients (HR 0.64, 95% CI 0.43–0.95, p = 0.03).
Conclusions: Greater ICW was an independent predictor of poorer survival in cancer patients with edema in the last days of life.
BACKGROUND: Palliative Care (PC) is indicated in patients with functional dependency and advanced care needs in addition to those with life-threatening conditions. Older trauma patients have PC needs due to increased risk of mortality and poor long-term outcomes. We hypothesized that older trauma patients discharged alive with poor outcomes are not easily identified nor receive PC interventions.
METHODS: Prospective observational study of trauma patients 55 years or older. Patients with poor functional outcomes defined by discharge Glasgow Outcome Scale Extended (GOSE) 1-4 or death at 6-month follow-up were analyzed for rate and timing of PC interventions including goals of care conversation (GOCC), do-not-resuscitate (DNR) order, do not intubate (DNI) order, and withdrawal of life supporting measures. Logistic regression was performed for having and timing of GOCC.
RESULTS: Three hundred fifteen (54%) of 585 patients had poor outcomes. Of patients who died, 94% had GOCC compared with 31% of patients who were discharged with GOSE 3 or 4. In patients who died, 85% had DNR order, 18% had DNI order, and 56% had withdrawal of ventilator. Only 24% and 9% of patients with GOSE of 3 or 4, respectively, had DNR orders. Fifty percent of the patients who were dead at 6-month follow-up had GOCC during initial hospitalization. The median time to DNR in patients that died was 2 days compared with 5 days and 1 day in GOSE 3 and 4 (p = 0.046). Age, injury severity scale, and preexisting limited physiological reserve were predictive of having a GOCC.
CONCLUSION: The PC utilization was very high for older trauma patients who died in hospital. In contrast, the majority of those who were discharged alive, but with poor outcomes, did not have PC. Development of triggers to identify older trauma patients, who would benefit from PC, could close this gap and improve quality of care and outcomes.
Background: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers’ grief, quality of life and general health in relation to non-caregivers.
Aim: We aimed to determine how caregivers’ grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes.
Design: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points – once pre-death and three times post-death (3–4 months, 6–7 months and 9–10 months).
Setting/participants: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements.
Results: There were significant differences between the caregivers’ and comparisons’ grief, general health and quality of life at pre-death, 3–4 months and 6–7 months post-death, but not at 9–10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6–7 and 9–10 months post-death.
Conclusion: It took 9–10 months for the caregivers’ grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.
BACKGROUND: Earlier studies have demonstrated poor concordance between patients' advance care preferences and those endorsed by their surrogate health care decision makers in a medical setting. This study aimed to determine concordance in the perioperative setting among high-risk patients and to identify areas for improvement.
METHODS: This was a prospective cohort study set in a preoperative clinic for high-risk patients. Patients (>55 y) and their surrogates (dyads) were eligible for participation. Dyads were surveyed on the patient's desire for advance care preferences (cardiopulmonary resuscitation, mechanical ventilation, hemodialysis, artificial nutrition) and tolerance for physical disability, cognitive disability, and chronic pain. Concordance was defined as the surrogate correctly predicting patient preferences. Patients and surrogates were resurveyed for concordance 30 to 60 d after the index procedure.
RESULTS: A total of 100 dyads (200 subjects) completed the survey. Median patient age was 68 y. Most patients were white (87%) and had an American Society of Anesthesiologists score of III (88%). The majority of dyads (59%) reported prior conversations about advance care preferences. Concordance specifically for cardiopulmonary resuscitation was 84%. In all other domains, <60% of dyads achieved concordance. Prior conversations regarding advance care preferences did not improve concordance in univariable or multivariable analysis. In postoperative surveys, substantial improvement was found in all domains except mechanical ventilation and cardiopulmonary resuscitation.
CONCLUSION: In all domains except cardiopulmonary resuscitation, concordance was <60% in the preoperative setting and was not improved among dyads who reported prior conversations regarding advance care preferences. Discordance may limit patient autonomy by prolonging undesired interventions or terminating desired interventions prematurely.
Background: In 2014, the province of Alberta launched a campaign to promote public awareness of advance care planning (ACP) and its associated two-part documentation-a Goals of care designation (GCD, a medical order written by a health care practitioner detailing wishes for care) and a personal directive (PD, a document naming a surrogate decision maker). Notably, unlike the GCD, the PD can be self-initiated independent of a health practitioner.
Objective: Two years after the campaign, we aimed to assess knowledge and recall of participation in ACP among cirrhosis patients.
Design/Setting: Consecutive adult cirrhosis patients attending one of two specialty cirrhosis clinics in Edmonton, Alberta, were surveyed.
Results: Ninety-seven patients were included. Mean model for end-stage liver disease was 12. Although 97% of patients indicated it was extremely important to know the reality of their illness, only 53% understood that cirrhosis would affect their future quality of life. Thirty-three percent of patients had completed a PD and 14% had completed a GCD. Seventy-eight percent of patients believed a GCD was important to them and 85% preferred to complete it in an outpatient clinic setting. Only a minority of patients who had taken the initiative to complete a PD in the community also had a GCD.
Conclusions: Despite efforts to raise awareness of and educate Albertans about ACP, <20% of cirrhosis patients have a completed GCD. Additional strategic prioritization is required in both patients and providers to ensure that health practitioner-facilitated ACP is carried out as standard-of-care in all patients with cirrhosis.
BACKGROUND: Grieving and death rituals vary widely across cultures and are often influenced by geographical regions, religions, and local norms. Nursing rituals reflect the forms of cultural behaviour that assist in communicating traditional knowledge and practices. They help nurses maintain social order through cohesion and interaction.
AIM AND OBJECTIVES: Exploration of European and Middle Eastern intensive care nursing ceremonies and rituals surrounding care provided to patients after death has been carried out. The key question researchers asked was "Can you describe your practice of caring for a patient who has died?"
DESIGN: Prospective qualitative thematic analysis.
METHODS: This study used a prospective qualitative thematic analysis investigating nursing practice and rituals when caring for patients who have died in intensive care. The interviews were conducted face-to-face with nurses consenting to be interviewed for research purposes. During the interviews, researchers noted sentences and topics, which they later classified into categories and subcategories. The interview settings were international and national conferences, workshops, meetings, and seminars over a 2-year period. Thematic analysis was performed. This analysis allowed the researchers to understand and make sense of collective meanings and experiences of participants.
RESULTS: A total of 23 interviews with critical care nurses from 16 countries in Europe and Middle East were conducted. Through reflective and meaningful analytical interpretation, two main themes (with subthemes) emerged: sacredness and dignity. More similarities than differences among the nurses' experiences were found. Rituals included, opening a window, lighting a candle, blessing the deceased, and bereaving with the family.
CONCLUSIONS: Post-death ritual reflects local guidelines regulating the handling of the deceased body, culturally approved expressions of mourning, and acts to perform at specific times following death. Nursing rituals expressed here demonstrated the dignity, wherein nurses show towards the deceased and relationships between deceased and bereaved.
RELEVANCE TO CLINICAL PRACTICE: The investigators perceived nursing culture, beliefs, ceremonies, and rituals surrounding caring for patients who have died to be creative, spiritual, meaningful, and relevant for nurses.
BACKGROUND: Revascularization is the cornerstone in the treatment of patients with critical limb-threatening ischemia (CLTI). However, the 2-year mortality rate is up to 50% in these patients. Therefore, the clinical benefit of revascularization needs to be considered carefully. The question emerges if there are changes in quality of life (QoL) and health status (HS) in the end-of-life phase of CLTI in older patients.
METHODS: Patients with CLTI and an age of 70 years or older were included in a prospective observational cohort study. Treatment consisted of endovascular revascularization, surgical revascularization, or conservative therapy. The follow-up period was 2 years. Within this follow-up period, patients completed the following questionnaires at six specified time intervals: the WHOQOL-BREF and the SF-12. Patients who died within two years after inclusion were analyzed. Final scores were defined as the last measurement at end of follow-up or death.
RESULTS: 82 patients (42.1%) died during the 24-month follow-up. QoL and HS before death did not decrease with treatment (option: endovascular intervention, surgical revascularization, or conservative therapy).
CONCLUSIONS: Older patients with CLTI and a life expectancy less than 2 years had no differences in QoL and HS before death compared to their previous measurement. Except for the mental HS domain, no differences in the percentage of patients showing significant individual change in QoL and HS were found between the treatments. For clinicians, it is important to use patient-reported outcome measure when discussing treatment for older frail patients with CLTI in a shared decision-making process.