Background End-of-life decision-making tools are used to establish a shared understanding among patients, families and healthcare providers about medical treatment and goals of care. This systematic review aimed to understand the availability and effect of end-of-life decision-making tools on: (i) goals of care and advance care planning; (ii) patient and/or family satisfaction and well-being; and (iii) healthcare utilization among racial/ethnic, cultural, and religious minorities. Methods A search was conducted in four electronic databases (inception to June 2021). Articles were screened for eligibility using pre-specified criteria. We focused on adult patients (aged ≥18 years) and included primary research articles that used quantitative, qualitative, and mixed-methods designs. Complementary quality assessment tools were used to generate quality scores for individual studies. Extracted data were synthesized by outcome measure for each type of tool, and an overall description of findings showed the range of effects. Results Among 14,316 retrieved articles, 37 articles were eligible. We found that advance care planning programs (eleven studies), healthcare provider-led interventions (four studies), and linguistically-tailored decision aids (three studies) increased the proportion of patients documenting advance care plans. Educational tools (three studies) strongly reduced patient preferences for life-prolonging care. Palliative care consultations (three studies) were strongly associated with do-not-resuscitate orders. Advance care planning programs (three studies) significantly influenced the quality of patient-clinician communication and healthcare provider-led interventions (two studies) significantly influenced perceived patient quality of life. Conclusion This review identified several end-of-life decision-making tools with impact on patient and family-related outcomes of care among ethnocultural minorities. Advance care planning programs, healthcare provider-led interventions and decision aids increased documentation of end-of-life care plans and do-not-resuscitate orders, and educational tools reduced preferences for life-prolonging care. Further research is needed to investigate the effect of tools on healthcare utilization, and with specific patient population subgroups across different illness trajectories and healthcare settings.
Introduction Patients requiring invasive mechanical ventilation via an artificial airway experience sudden voicelessness placing them at risk for adverse outcomes and increasing provider workload. Infection control precautions during the COVID-19 pandemic, including the use of personal protective equipment (eg, gloves, masks, etc), patient isolation, and visitor restrictions may exacerbate communication difficulty. The objective of this study is to evaluate the acceptability of a codesigned communication intervention for use in the adult intensive care unit when infection control precautions such as those used during COVID-19 are required. Methods and analysis This three-phased, prospective study will take place in a medical surgical ICU in a community teaching hospital in Toronto. Participants will include ICU healthcare providers, adult patients and their family members. Qualitative interviews (target n: 20–25) will explore participant perceptions of the barriers to and facilitators for supporting patient communication in the adult ICU in the context of COVID-19 and infection control precautions (phase 1). Using principles of codesign, a stakeholder advisory council of 8–10 participants will iteratively produce an intervention (phase 2). The codesigned intervention will then be implemented and undergo a mixed method acceptability evaluation in the study setting (phase 3). Acceptability, feasibility and appropriateness will be evaluated using validated measures (target n: 60–65). Follow-up semistructured interviews will be analysed using the theoretical framework of acceptability (TFA). The primary outcomes of this study will be acceptability ratings and descriptions of a codesigned COmmunication intervention for use during and beyond the COVID-19 PandEmic. Ethics and dissemination The study protocol has been reviewed, and ethics approval was obtained from the Michael Garron Hospital. Results will be made available to healthcare providers in the study setting throughout the study and through publications and conference presentations.
To use positive deviance to identify actionable processes of care that may improve outcomes and experience from the perspectives of prolonged intensive care unit (ICU) stay survivors and family members.Prospective qualitative interview study in two geographically distant settings: Canada (2018/19) and the United Kingdom (2019/20).Patient and family participant inclusion criteria comprised: aged over 18 years, ICU stay in last 2 years of over 7 days, able to recall ICU stay and provided informed consent. We conducted semi-structured in-person or telephone interviews. Data were analysed using a positive deviance approach.We recruited 29 participants (15 Canadian; 14 UK). Of these, 11 were survivors of prolonged ICU stay and 18 family members. We identified 22 actionable processes (16 common to Canadian and UK participants, 4 Canadian only and 2 UK only). We grouped processes under three themes: physical and functional recovery (nine processes), patient psychological well-being (seven processes) and family relations (six processes). Most commonly identified physical/functional processes were regular physiotherapy, and fundamental hygiene and elimination care. For patient psychological well-being: normalizing the environment and routines, and alleviating boredom and loneliness. For family relations: proactive communication, flexible family visiting and presence with facilities for family. Our positive deviance analysis approach revealed that incorporation of these actionable processes into clinical practice was the exception as opposed to the norm perceived driven by individual acts of kindness and empathy as opposed to standardized processes.Actionable processes of care important to prolonged ICU stay survivors and family members differ from those frequently used in ICU quality improvement (QI) tools.Our study emphasizes the need to develop QI tools that standardize delivery of actionable processes important to patients and families experiencing a prolonged ICU stay. As the largest healthcare professional group, nurses can play an essential role in leading this.
Purpose Few quality improvement tools specific to patients with persistent or chronic critical illness exist to aid delivery of high-quality care. Using experience-based co-design methods, we sought consensus from key stakeholders on the most important actionable processes of care for inclusion in a quality improvement checklist. Methods Item generation methods: systematic review, semi-structured interviews (ICU survivors and family) members, touchpoint video creation, and semi-structured interviews (ICU clinicians). Consensus methods: modified online Delphi and a virtual meeting using nominal group technique methods. Results We enrolled 138 ICU interprofessional team, patients, and family members. We obtained consensus on a quality improvement checklist comprising 11 core domains: patient and family involvement in decision-making; patient communication; physical comfort and complication prevention; promoting self-care and normalcy; ventilator weaning; physical therapy; swallowing; pharmacotherapy; psychological issues; delirium; and appropriate referrals. An additional 27 actionable processes are contained within 6 core domains that provide more specific direction on the actionable process to be targeted. Conclusions Using a highly collaborative and methodologically rigorous process, we generated a quality improvement checklist of actionable processes to improve patient and family-centred care considered important by key stakeholders. Future research is needed to understand optimal implementation strategies and impact on outcomes and experience.
In 2014, the Ministry of Health of Ontario, Canada, approved a program of public funding for specialist-prescribed mechanical insufflation-exsufflation (MI-E) devices for home use by individuals with neuromuscular respiratory insufficiency. Since 2014, 1,926 MI-E devices have been provided, exceeding device-use projections. Few studies describe the initial and ongoing education and support needs of home MI-E users and their family caregivers. This study aimed to explore the requirements of initial and ongoing education and support for MI-E device use, user confidence, and barriers and facilitators to home MI-E.
METHODS:
We conducted semi-structured interviews with new (< 6 months) and established (6–48 months) MI-E users and family caregivers. Device users rated their confidence on a numeric rating scale of 1 (not confident) to 10 (very confident).
RESULTS:
We recruited 14 new and 14 established MI-E users and caregivers (including 9 dyads), and we conducted 28 interviews. Both new and established users were highly confident in use of MI-E (mean ± SD scores were 8.8 ± 1.2 and 8.3 ± 2.1, respectively). Overall, the subjects were satisfied with their initial education, which consisted of a 1–2 h one-on-one session at home or in the clinic with a device demonstration and hands-on practice. Subjects viewed hands-on practice and teaching of caregivers as more beneficial than written materials. Ongoing support for device use was variable. Most subjects indicated a lack of specific follow-up, which resulted in uncertainty about whether they were using the MI-E device correctly or whether MI-E was effective. Facilitators to device utilization were ease of use, initial training, support from formal or informal caregivers, and symptom relief. Barriers were inadequate education on MI-E purpose, technique, and benefit; lack of follow-up; and inadequate knowledge of MI-E by nonspecialist health providers.
CONCLUSIONS:
The current model of home MI-E education at initiation meets user and caregiver needs. Better ongoing education and follow-up are needed to sustain the benefits through assessment of MI-E technique and its effectiveness.
Abstract Objective Adolescents receiving long‐term home mechanical ventilation (HMV) who survive into adulthood must transition to adult health care services. Lack of transition readiness is reported to result in poor health outcomes. The objective of this study is to explore longitudinally the pediatric‐to‐adult health care transition experience involving a transition program for adolescents receiving HMV including transition readiness, barriers, facilitators, and modifiable features. Design A prospective qualitative longitudinal interview study of adolescent and family caregiver dyads recruited through a pediatric‐to‐adult HMV transition program jointly established by two collaborating health centers: The Hospital for Sick Children and West Park Healthcare Centre in Toronto, Canada. Eligible dyads were interviewed at three time points: pretransition, transition, and 12‐months posttransition. Interviews were transcribed verbatim and analyzed using directed content analysis methods. Results Ventilator‐assisted adolescents (VAAs) and caregiver participants perceived a lack of transition readiness in their ability to manage health communication and coordination across multiple adult providers. Transition facilitators included early transition discussion, opportunities for VAAs to speak directly with HMV providers during appointments, receipt of print informational materials regarding adult services, and a joint pediatric‐adult team handover meeting. Modifiable transition barriers included lack of other specialist referrals, insufficient information about adult homecare service funding, and limited involvement of family doctors. Unresolved transition barriers resulted in perceptions of service fragmentation. Conclusions Although the pediatric‐to‐adult HMV transition program conferred benefits service fragmentation was perceived. Transition barriers may be overcome through early planning and staged transition with all specialists, community providers, and the family and adolescent working in collaboration.
Continuing professional development is an important means of improving access to effective patient care. Although pain content has increased significantly in prelicensure programs, little is known about how postlicensure health professionals advance or maintain competence in pain management.The aim of this study was to investigate Canadian health professionals' continuing professional development needs, activities, and preferred modalities for pain management.This study employed a cross-sectional self-report web survey.The survey response rate was 57% (230/400). Respondents were primarily nurses (48%), university educated (95%), employed in academic hospital settings (62%), and had ≥11 years postlicensure experience (70%). Most patients (>50%) cared for in an average week presented with pain. Compared to those working in nonacademic settings, clinicians in academic settings reported significantly higher acute pain assessment competence (mean 7.8/10 versus 6.9/10; P < 0.002) and greater access to pain specialist consultants (73% versus 29%; P < 0.0001). Chronic pain assessment competence was not different between groups. Top learning needs included neuropathic pain, musculoskeletal pain, and chronic pain. Recently completed and preferred learning modalities respectively were informal and work-based: reading journal articles (56%, 54%), online independent learning (44%, 53%), and attending hospital rounds (43%, 42%); 17% had not completed any pain learning activities in the past 12 months. Respondents employed in nonacademic settings and nonphysicians were more likely to use pocket cards, mobile apps, and e-mail summaries to improve pain management.Canadian postlicensure health professionals require greater access to and participation in interactive and multimodal methods of continuing professional development to facilitate competency in evidence-based pain management.Contexte: Le développement professionnel continu est un moyen important d’améliorer l’accès à des soins efficaces pour les patients. Bien que le contenu lié à la douleur ait augmenté de manière significative dans les programmes préalables à l’autorisation d’exercer, on sait peu de choses sur la façon dont les professionnels de la santé après licenciés améliorent ou maintiennent leurs compétences en matière de gestion de la douleur.Objectifs: Étudier les besoins, les activités et les préférences de développement professionnel continu des cliniciens canadiens en matière de gestion de la douleur.Méthodes: Enquête Web transversale d’auto-évaluation.Résultats: Le taux de réponse au sondage était de 57 % (230/400). Les répondants étaient principalement des infirmières (48 %), des diplômés universitaires (95 %), des employés en milieu hospitalier universitaire (62 %), avec ≥11 ans d’expérience après l’obtention du permis (70 %). La plupart des patients (> 50 %) pris en charge dans une semaine moyenne présentaient des douleurs. Comparativement à ceux qui travaillent dans des milieux non universitaires, les cliniciens en milieu universitaire ont signalé une compétence d’évaluation de la douleur aiguë significativement plus élevée (moyenne de 7,8/10 contre 6,9/10; P < 0,002) et un meilleur accès aux consultants en gestion de la douleur (73 % contre 29 %; P < 0,0001). La compétence d’évaluation de la douleur chronique n’était pas différente entre les groupes. Les principaux besoins d’apprentissage comprenaient la douleur neuropathique, la douleur musculo-squelettique et la douleur chronique. Les modalités d’apprentissage récemment achevées et préférées étaient respectivement informelles et basées sur le travail: lecture d’articles de journaux (56 %, 54 %), apprentissage indépendant en ligne (44 %, 53 %) et participation à des visites à l’hôpital (43 %, 42 %); 17 % n’avaient effectué aucune activité d’apprentissage de la douleur au cours des 12 derniers mois. Les répondants hors les médecins et ceux employés dans des milieux non universitaires étaient plus susceptibles d’utiliser des cartes de poche, des applications mobiles et des résumés par e-mail pour améliorer la gestion de la douleur.Conclusions: Les professionnels de la santé canadiens après l’obtention du permis d’exercice ont besoin d’un meilleur accès et d’une plus grande participation aux méthodes interactives et multimodales de développement professionnel continu pour faciliter la compétence en gestion de la douleur fondée sur des données probantes.
Ms. Manzoor and Dr. Redelmeier’s[1][1] CMAJ Humanities article on sexism in medical care introduces 7 strategies a female physician might employ when mistaken as a nurse by a patient in hospital. Although well intentioned, we believe the article perpetuates harmful gendered discourses about
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