Graeme M. Rocker

Decision-making in the ICU: perspectives of the substitute decision-maker

AbstractnObjective. To describe the substitute decision-makers perspectives related to decision-making in the intensive care unit (ICU) and to determine those variables associated with their overall satisfaction with decision-making.nDesign. Prospective, multicenter, cohort study.nSetting. Six Canadian university-affiliated ICUs.nPatients and participants. We distributed a validated, self-administered questionnaire assessing 21 key aspects of communication and decision-making to substitute decision-makers of ICU patients who were mechanically ventilated for more than 48xa0h.nIntervention. None.nMeasurements and results. A group consisting of 1,123 substitute decision-makers received questionnaires; 789 were returned (70.3% response rate). Respondents were most satisfied with the frequency of communication with nurses and least satisfied with the frequency of communication with physicians. In terms of overall satisfaction with decision-making, 560 (70.9%) of the respondents were either completely or very satisfied. The majority (81.2%) of respondents preferred some form of shared decision-making process. Factors contributing the most to satisfaction with decision-making included: complete satisfaction with level of health care the patient received, completeness of information received, and feeling supported through the decision-making process. Satisfaction with decision-making varied significantly across sites.nConclusions. In this multicenter observational study, we found that most substitute decision-makers for ICU patients wanted to share decision-making responsibility with physicians and that, overall, they were satisfied with their decision-making experience. Adequate communication, feeling supported, and achieving the appropriate level of care for their family member were key determinants of satisfaction with decision-making in the ICU.

Most critically ill patients are perceived to die in comfort during withdrawal of life support: a Canadian multicentre study.

PurposeMost deaths in intensive care units (ICUs) follow a withdrawal of life support (LS). Evaluation of this process including the related perspectives of grieving family members is integral to improvement of palliation in the ICU.MethodsA prospective, multicentre, cohort study in six Canadian university-affiliated ICUs included 206 ICU patients (length of stay ≥ 48 hr) who received mechanical ventilation (MV) before LS withdrawal. We recorded modes, sequence and time course of LS withdrawal and drug usage (4 hr before; 4–8 hr and 8–12 hr before death). We asked a specified family member to assess patient comfort and key aspects of end-of life care.ResultsMV was withdrawn from 155/206 (75.2%) patients; 97/155 (62.6%) died after extubation and 58/155 (37.4%) died with an airway in place. The most frequently used drugs and the cumulative doses [median (range)] in the four hours before death were: morphine 119/206, 24 mg, (2–450 mg); midazolam 45/206, 24 mg, (2–380 mg); and lorazepam 35/206, 4 mg, (1–80 mg). These doses did not differ among the three time periods before death. Of 196 responses from family members most indicated that patients were perceived to be either totally (73, 37.2%), very (48, 24.5%), or mostly comfortable (58, 29.6%). Times to death, morphine use and family members’ perceptions of comfort were similar for each type of change to MVConclusionsMost patients were perceived by family members to die in comfort during a withdrawal of LS. Perceptions of patient comfort and drug use in the hours before death were not associated with the mode or sequence of withdrawal of LS, or the time to death.RésuméObjectifLa plupart des décès qui surviennent dans les unités de soins intensifs (USI) suivent le retrait du maintien de la survie (MS). L’évaluation de cette situation, y compris les perspectives reliées à la peine des membres de la famille, est indispensable pour améliorer les soins palliatifs à l’USI.MéthodeUne étude de cohorte prospective multicentrique de six USI canadiennes d’affiliation universitaire comportait 206 patients de l’USI (séjour de = 48 h) qui ont reçu une ventilation mécanique (VM) avant le retrait du MS. Nous avons noté les modes de retrait du MS, leur séquence et leur évolution et l’usage de médicaments (4 h avant; 4–8 h et 8–12 h avant la mort). Nous avons demandé à un membre de la famille en particulier d’évaluer le confort du patient et les aspects clés des soins palliatifs.RésultatsLa VM a été retirée pour 155/206 (15,2 %) patients; 97/155 (62,6 %) sont décédés après l’extubation et 58/155 (37,4 %) avec une intubation en place. Les médicaments les plus utilisés et les doses cumulatives [médiane (valeurs extrêmes)] des quatre heures précédant le décès ont été: la morphine 119/206, 24 mg, (2–450 mg); le midazolam 45/206, 24 mg, (2–380 mg) et le lorazépam 35/206, 4 mg, (1–80 mg). Ces doses étalent similaires pour les trois périodes de temps avant la mort. Des 196 réponses des membres des familles, la majorité Indiquait que les patients semblaient bénéficier d’un confort total (73, 37,2 %), d’un grand confort (48, 24,5 %) ou d’un confort raisonnable (58, 29,6 %). Le temps précédant le décès, l’usage de morphine et la perception des membres de la famille sur le confort du patient ont été similaires pour chacun des types de modification apportée à la VM.ConclusionLa majorité des patients meurent sans souffrance pendant le retrait du MS selon l’évaluation des membres de leur famille. La perception du confort du patient et l’usage de médicaments pendant les heures qui précèdent la mort ne sont pas associés au mode ou à la séquence du retrait du MS ou à la période de temps avant la mort.

Palliative Care in Advanced Lung Disease: The Challenge of Integrating Palliation Into Everyday Care

The tendency toward either/or thinking (either cure or comfort) in traditional biomedical care paradigms does little to optimize care in advancing chronic illness. Calls for improved palliation in chronic lung disease mandate a review of related care gaps and current clinical practices. Although specialist palliative services have their advocates, adding yet another element to an already fragmented, often complex, care paradigm can be a challenge. Instead, we propose a more holistic, patient-centered approach based on elements fundamental to palliative and best care practices generally and integrated as needed across the entire illness trajectory. To support this approach, we review the concept of primary palliative care competencies, identify vulnerability specific to those living with advanced COPD (an exemplar of chronic lung disease), and describe the need for care plans shaped by patient-centered communication, timely palliative responsiveness, and effective advance care planning. A costly systemic issue in the management of chronic lung disease is patients increasing dependency on episodic ED care to deal with preventable episodic crises and refractory dyspnea. We address this issue as part of a proposed model of care that provides proactive, collaborative case management and the appropriate and carefully monitored use of opioids. We encourage and support a renewed primary care resolve to integrate palliative approaches to care in advanced lung disease that, in concert with judicious referral to appropriate specialist palliative care services, is fundamental to what should be a more sustainable systematic improvement in palliative care delivery.

New models of care for advanced lung disease

Abstract Chronic lung disease is growing in prevalence and patients are living longer with long-term illness and a high-symptom burden: as these diseases are so common there are now millions of affected individuals and their families living with the sequelae worldwide. This has profound effects on the individual concerned (who is often highly symptomatic with breathlessness), their family, and on health services. There is a growing recognition that the historical model of medical management aimed at the disease alone is not meeting patients needs and leading to high levels of unscheduled use of medical services at high financial cost and without health gain leading to further frustration for the patient. Service models for palliative care aimed at patients with a rapid deterioration from good health to death can also fail to meet the needs of this group. This paper examines new models of care for patients with advanced lung disease, outlining three services in some detail with a brief review of available evidence. It calls for new ways of evaluating the impact of such services.