L'auteure présente l’oeuvre de Munch, peintre norvégien, dont les portraits, autoportraits et paysages sont marqués par la maladie, la mort, la souffrance et l’angoisse de la vie. Utilisant l’expressionnisme pour retranscrire ses émotions et se confronter à sa propre personnalité, l’artiste utilisait la symbolique des couleurs et introduisait dans ses toiles un langage codé ainsi que des motifs stylisés.
All medical care providers are legally and ethically bound to respect their patients' wishes. However, as patients lose decision-making capacity and approach end of life, their families or surrogates, who are confronted with grief, fear, self-doubt, and/or uncertainty, may ask physicians to provide treatment that contradicts the patients' previously stated wishes. Our work discusses the legal and ethical issues surrounding such requests and provides guidance for clinicians to ethically and compassionately respond—without compromising their professional and moral obligations to their patients.
Context: Patients with end-stage renal disease undergoing dialysis experience multiple concurrent symptoms. These symptoms cluster together and have negative impacts on patient outcomes. However, information on changes in symptom clusters over time is limited.
Objectives: This longitudinal study examined the stability of symptom clusters and their impacts on health-related quality of life and functional status over a period of one year.
Methods: Eligibility criteria were patients diagnosed with end-stage renal disease; had received dialysis consecutively for at least three months; and had given written informed consent. Dialysis Symptom Index, Kidney Disease Quality of Life 36, and Karnofsky Performance Status Scale were used to evaluate the impacts of symptom clusters and outcomes. Exploratory factor analyses and multiple regression analyses were used to determine symptom clusters and their associations with patient outcomes.
Results: Among the 354 recruited patients, 271 completed the 12-month assessment. Four symptom clusters were identified across the three assessments, namely, uremic, gastrointestinal, skin, and emotional. Within each cluster, the specific symptoms were varied. The uremic symptom cluster accounted for the largest amount of variability. Across the three assessments, a higher uremic cluster factor score was associated with poorer physical well-being, whereas a higher emotional cluster factor score was consistently associated with poorer mental well-being.
Conclusion: Symptoms in patients on dialysis clustered in relatively stable patterns. The four symptom clusters identified had consistent negative effects on various aspects of patients' well-being. Our findings suggest the need for ongoing symptom assessment and early recognition of symptoms that may contribute to adverse patient outcomes.
Au cours du siècle dernier, les réactions et processus de deuil ont de plus en plus été perçus et conceptualisés comme « a-normaux », c’est-à-dire pathologiques lorsqu’ils sont inhabituels, trop longs ou trop courts, trop intenses ou pas assez présents. Le deuil est souffrance (dolere étymologiquement) et notre société veut le bonheur, le contrôle et l’efficacité. Le deuil doit donc être « traité ». Pourtant, le deuil existe car il est le coût de l’attachement essentiel entre les êtres humains, attachement qui a été phylogénétiquement et ontologiquement sélectionné pour notre survie et notre développement. La perspective humaniste, centrée sur la personne et expérientielle, permet d’envisager les réactions et processus de deuil de manière plus compréhensive, humaine, idiosyncratique. Dans cet article, au-delà d’un bref retour sur les développements théoriques et empiriques dans ce domaine, je présenterai les éléments scientifiques permettant d’appuyer une perspective d’accompagnement centrée sur la personne que tout un chacun peut vivre de manière privée et/ou professionnelle. Basée sur les preuves scientifiques, celle-ci apparaît comme plus respectueuse des diversités intra- et interindividuelles, considérant la personne de manière holistique et intervenant par la relation de qualité à l’autre. L’aidant authentique, respectueux, empathique, flexible et chaleureux est amené à entreprendre un travail humanisant l’autre et le soin qu’il lui apporte tout en répondant aux critères sociétaux d’efficacité attendue.
Background: In patients with tetralogy of Fallot with the diminutive pulmonary arteries, we sometimes have to give up the complete intra-cardiac repair due to insufficient growth of the pulmonary arteries. We have carried out palliative intra-cardiac repair using a fenestrated patch.
Methods: Of all 202 patients with tetralogy of Fallot in our centre since 1996, five patients (2.5%) with the diminutive pulmonary arteries underwent palliative intra-cardiac repair using a fenestrated patch. Mean operative age was 1.8 years. Previous operation was Blalock-Taussig shunt in 4. At operation, the ventricular septal defect was closed using a fenestrated patch and the right ventricular outflow tract was enlarged. Follow-up period was 9.8 ± 2.6 years.
Results: There were no operative and late deaths. Fenestration closed spontaneously on its own in four patients 2.7 ± 2.1 years after the intra-cardiac repair with a stable haemodynamics; however, the last patient with the smallest pulmonary artery index had supra-systemic pressure of the right ventricle post-operatively. The fenestration was emergently enlarged. Systemic arterial oxygen saturation was significantly and dramatically increased from 83.5 to 94% after the palliative intra-cardiac repair, and to 98% at the long term. A ratio of systolic pressure of the right ventricle to the left was significantly decreased to 0.76 ± 0.12 at the long term. Now all five patients were Ross classification class I.
Conclusion: Although frequent catheter and surgical interventions were needed after the palliative intra-cardiac repair, this repair might be a choice improving quality of life with good results in patients with tetralogy of Fallot associated with the diminutive pulmonary arteries.
Introduction and Aim: Utilization of palliative care services in patients dying of end-stage liver disease (ESLD) is understudied. We performed a retrospective review of palliative care services among patients with ESLD unsuitable for liver transplantation (LT) at a tertiary care center.
Material and Methods: Deceased ESLD patients considered unsuitable for LT from 2007-2012 were identified. Patients were excluded if they received a transplant, had an incomplete workup, were lost to follow up or whose condition improved so LT was not needed. Of the 1,175 patients reviewed, 116 met inclusion criteria.
Results: Forty patients (34.4%) received an inpatient palliative care (PC) consultation and forty-one patients (35.3%) were referred directly to hospice. Thirty-three patients (28.4%) transitioned to comfort measures without PC consultation (median survival < 1 day). The median interval between LT denial and PC consultation or hospice was 28 days. Median survival after PC consult or hospice referral was 15 days. In conclusion, in a single center retrospective review of ESLD patients, palliative care services, when utilized, were for care at the very end of life. Without consultation, aggressive interventions continued until hours before death. We propose that ESLD patients could benefit from PC consultation at time of LT evaluation or based on MELD scores.
In the context of the end of life, many authors point out how the experience of identity is crucial for the well-being of patients with advanced disease. They define this identity in terms of autonomy, control, or dependence, associating these concepts with the sense of personal dignity. From the perspective of the phenomenology of embodiment, Kay Toombs and other authors have investigated the ways disease can impact on the subjective world of patients and have stressed that a consideration of this personal world can promote understanding and recognition of their experience. Based on the findings of qualitative studies of the perception of dignity and autonomy in patients at the end of life, this analysis assesses concepts such as being-in-the-world in illness, embodiment, lived body versus objective body or the gaze of the other from a Toombsian phenomenological perspective.
Advanced chronic obstructive pulmonary disease (COPD), is characterized by high morbidity and mortality. Patients with COPD and their families experience a range of stresses and suffering from a variety of sources throughout the disease's progression. COPD is the fourth leading cause of death in the world. It exists as a significant contributor to global morbidity and mortality, and it results in substantial economic and social burden. This review provides some key facts regarding disease burden and encourages clinician to familiarize themselves and use both conventional and palliative approach early in the disease progression for a better quality of life.
INTRODUCTION: Myocardial infarction (MI) remains a leading cause of mortality. Palliative care (PC) has recently expanded in scope to include noncancer-related conditions. There is little data available regarding the use of PC in critical MI patients.
METHODS: We used discharge data from the National Inpatient Sample for the years 2012 to 2014. We examined discharges with a primary diagnosis of MI. We measured the rate of PC referral, trend in utilization during the study period and possible predictors of PC utilization.
RESULTS: Among 1 667 520 discharges of those patients =18 years of age and with a primary diagnosis of MI, use of PC was seen in 2.5% of all patients and in 24% of patients who died. In a multivariable logistic regression, we found the presence of cancer, cardiogenic shock, dementia, stroke, hemiplegia, the use of circulatory support, and mechanical ventilation were associated with higher likelihood of PC referral. Palliative care referral increased during the study period, odds ratio of 1.18 per year (95% confidence interval: 1.14-1.21; P value <.001). Palliative care was not associated with prolonged length of stay.
CONCLUSION: Several comorbidities were associated with the use of PC, most notably the use of mechanical ventilation and the presence of metastatic cancer. There was a trend of increasing use of PC during the study period.
Non pas un livre sur le deuil, mais un livre sur le refus du deuil. Sous la forme du roman épistolaire - longue lettre qui défie la mort, ambitionne de prolonger la présence, cette Oraison fun est un grand livre baroque, à la fois portrait de la défunte et récit de ses luttes ; portrait d'un couple contraint par la maladie de vivre hors des normes l'intensité d'une union bousculant routines et conventions ; portrait de l'époque à travers celui de la faune cosmopolite des touristes arpentant les allées du Père Lachaise où repose Muriel, l'absente à jamais présente "au centre pile de solitude".
Dans une langue revendiquant sa hardiesse, l'écriture littéraire empoigne ici le deuil, l'humour, l'amour, la mort et ses lois. Refusant la fin sans issue, cette célébration rythme le pouls d'une vie d'outre-tombe.
Two million children experience sibling death annually and have problems that require clinical intervention although few receive such help. Effects on surviving siblings' mental health has been well documented, however their physical health has not. This study described surviving siblings' illnesses, treatments/health services at 2, 4, 6, and 13 months post-sibling death. The 132 children (76 girls, 56 boys, M 10.6 years, SD 3.43); 30% Hispanic, 51% Black, 26% White were recruited via hospital ICUs and published obituaries. Using a longitudinal design, parents reported types and numbers of surviving siblings' illnesses, treatments/health services, and dates post-sibling death. Most of the 207 illnesses and 674 treatments/health services occurred in the first 6 months post-sibling death. While girls had more illnesses (131) than boys (76) and Hispanic children had more illnesses than White or Black children, these differences were not statistically significant. Girls accounted for 66% of the treatments/health services and boys 34%. There was no significant difference in treatments/health service use by gender of the children (F = 1.00, p = .32). Hispanic children had significantly more treatments/health service use than Black children (F = 6.81, p = .002). Sibling death affects surviving siblings' physical health. Study data document the importance of monitoring the health, treatments and health service use of surviving siblings especially in the first 6 months after a sibling death, regardless of the child' s gender. On average, Hispanic children had greater health service use, which may warrant greater attention.
Venous thromboembolism (VTE) is both common and a potential contributor to symptom burden in patients receiving palliative and end-of-life care. Many of the VTE treatment and prophylaxis recommendations are drawn from data of clinical trials assessing conventional VTE and cancer-associated thrombosis that excluded patients receiving specialist palliative or hospice care. In this group, the epidemiology of VTE and associated outcomes, as well as the risks and benefits of treatment in keeping with a palliative approach are of growing clinical and research interest. This narrative review summarizes current knowledge and challenges in the management of thromboembolic disease in palliative care, highlighting the complexity of decisions surrounding VTE treatment and prophylaxis.
PURPOSE: We describe the frequency and timing of withdrawal of life-support (WLS) in moderate or severe hypoxic-ischemic encephalopathy (HIE) and examine its associations with medical and sociodemographic factors.
PROCEDURES: We undertook a secondary data analysis of a prospective multicenter data registry of regional level IV Neonatal Intensive Care Units participating in the Children's Hospitals Neonatal Database. Infants =36 weeks gestational age with HIE admitted to a Children's Hospitals Neonatal Database Neonatal Intensive Care Unit between 2010 and 2016, who underwent therapeutic hypothermia were categorized as (1) infants who died following WLST and (2) survivors with severe HIE (requiring tube feedings at discharge).
RESULTS: Death occurred in 267/1,925 (14%) infants with HIE, 87.6% following WLS. Compared to infants with WLS (n = 234), the survived severe group (n = 74) had more public insurance (73% vs 39.3%, P = 0.00001), lower household income ($37,020 vs $41,733, P = 0.006) and fewer [20.3% vs 35.0%, P = 0.0212] were from the South. Among infants with WLS, electroencephalogram was performed within 24 hours in 75% and was severely abnormal in 64% cases; corresponding rates for MRI were 43% and 17%, respectively. Private insurance was independently associated with WLS, after adjustment for HIE severity and center.
CONCLUSIONS: In a multicenter cohort of infants with HIE, WLS occurred frequently and was associated with sociodemographic factors. The rationale for decision-making for WLS in HIE require further exploration.
Advance care planning for persons with chronic kidney disease is under-utilized despite evidence it can improve care at the end of life. Motivational interviewing and Stages of Change Theory can help healthcare professionals elicit behavior change. This article outlines an approach to advance care planning using motivational interviewing with a healthcare coach to assist patients in expressing their unique values and wishes regarding care at the end of life. This Make Your Wishes About You (MY WAY) approach to advance care planning for patients with chronic kidney disease includes patient education material and a coach training curriculum freely available from the Coalition for Supportive Care of Kidney Patients.
Le clinicien propose de cerner par l'exemple la signification de la maladie dans la société contemporaine et mesure la valeur que chacun lui accorde dans son quotidien. La réflexion s'intéresse autant à la perception du domaine médical dans ses composantes humaines et thérapeutiques qu'à la condition physique et morale du patient, de l'annonce de la pathologie jusqu'à la mort.
BACKGROUND: End-stage kidney disease is associated with poor prognosis. Health care professionals must be prepared to address end-of-life issues and identify those at high risk for dying. A 6-month mortality prediction model for patients on dialysis derived in the United States is used but has not been externally validated.
AIM: We aimed to assess the external validity and clinical utility in an independent cohort in Canada.
DESIGN: We examined the performance of the published 6-month mortality prediction model, using discrimination, calibration, and decision curve analyses.
SETTING/PARTICIPANTS: Data were derived from a cohort of 374 prevalent dialysis patients in two regions of British Columbia, Canada, which included serum albumin, age, peripheral vascular disease, dementia, and answers to the "the surprise question" ("Would I be surprised if this patient died within the next year?").
RESULTS: The observed mortality in the validation cohort was 11.5% at 6 months. The prediction model had reasonable discrimination (c-stat = 0.70) but poor calibration (calibration-in-the-large = -0.53 (95% confidence interval: -0.88, -0.18); calibration slope = 0.57 (95% confidence interval: 0.31, 0.83)) in our data. Decision curve analysis showed the model only has added value in guiding clinical decision in a small range of threshold probabilities: 8%-20%.
CONCLUSION: Despite reasonable discrimination, the prediction model has poor calibration in this external study cohort; thus, it may have limited clinical utility in settings outside of where it was derived. Decision curve analysis clarifies limitations in clinical utility not apparent by receiver operating characteristic curve analysis. This study highlights the importance of external validation of prediction models prior to routine use in clinical practice.
BACKGROUND: Persons with cystic fibrosis (CF) experience high morbidity and mortality, yet little is known about their palliative care needs and how clinicians may address these needs.
OBJECTIVES: (1) To identify palliative care and advance care planning needs of patients with CF and their families; and (2) to identify clinicians' potential roles in meeting these needs.
METHODS: A mixed-methods study of adult patients (age =18 years) with moderate-to-severe CF [forced expiratory volume in the first second (FEV1) <65% predicted] were recruited from a CF Center. Semi-structured interviews (30-60 minutes) and questionnaires were administered in person or by phone. Grounded theory was used to analyze the interviews. Questionnaires were analyzed descriptively.
RESULTS: Forty-nine patients (FEV1 % range = 19%-63%) participated; the participation rate was 80% for eligible patients. Three main domains of palliative care needs were identified: (1) to be listened to, feel heard, and be "seen"; (2) understanding the context around CF and its trajectory, with the goal of preparing for the future; and (3) information about, and potential solutions to, practical and current circumstances that cause stress. In questionnaires, few patients (4.3%) reported talking with their clinician about their wishes for care if they were to become sicker, but mixed-methods data demonstrated that more than half of participants were willing to receive palliative care services provided those services were adapted to CF.
CONCLUSION: Patients expressed a need for and openness to palliative care services, as well as some reluctance. They appreciated clinician communication that was open, forthcoming, and attuned to individualized concerns.