James Downar

Perceptions of “futile care” among caregivers in intensive care units

Background: Many caregivers in intensive care units (ICUs) feel that they sometimes provide inappropriate or excessive care, but little is known about their definition of “futile care” or how they attempt to limit its impact. We sought to explore how ICU staff define medically futile care, why they provide it and what strategies might promote a more effective use of ICU resources. Methods: Using semi-structured interviews, we surveyed 14 physician directors, 16 nurse managers and 14 respiratory therapists from 16 ICUs across Ontario. We analyzed the transcripts using a modified grounded-theory approach. Results: From the interviews, we generated a working definition of medically futile care to mean the use of considerable resources without a reasonable hope that the patient would recover to a state of relative independence or be interactive with his or her environment. Respondents felt that futile care was provided because of family demands, a lack of timely or skilled communication, or a lack of consensus among the treating team. Respondents said they were able to resolve cases of futile care most effectively by improving communication and by allowing time for families to accept the reality of the situation. Respondents felt that further efforts to limit futile care should focus on educating the public and health care professionals about the role of the ICU and about alternatives such as palliative care; mandating early and skilled discussion of resuscitation status; establishing guidelines for admission to the ICU; and providing legal and ethical support for physicians who encounter difficulties. There was a broad consistency in responses among all disciplines. Interpretation: ICU physicians, nurses and respiratory therapists have similar and well-formed opinions about how to define and resolve medically futile care and where to focus future efforts to limit the impact of futile care in the ICU.

What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families

Background: The guideline-recommended elements to include in discussions about goals of care with patients with serious illness are mostly based on expert opinion. We sought to identify which elements are most important to patients and their families. Methods: We used a cross-sectional study design involving patients from 9 Canadian hospitals. We asked older adult patients with serious illness and their family members about the occurrence and importance of 11 guideline-recommended elements of goals-of-care discussions. In addition, we assessed concordance between prescribed goals of care and patient preferences, and we measured patient satisfaction with goals-of-care discussions using the Canadian Health Care Evaluation Project (CANHELP) questionnaire. Results: Our study participants included 233 patients (mean age 81.2 yr) and 205 family members (mean age 60.2 yr). Participants reported that clinical teams had addressed individual elements of goals-of-care discussions infrequently (range 1.4%–31.7%). Patients and family members identified the same 5 elements as being the most important to address: preferences for care in the event of life-threatening illness, values, prognosis, fears or concerns, and questions about goals of care. Addressing more elements was associated with both greater concordance between patients’ preferences and prescribed goals of care, and greater patient satisfaction. Interpretation: We identified elements of goals-of-care discussions that are most important to older adult patients in hospital with serious illness and their family members. We found that guideline-recommended elements of goals-of-care discussions are not often addressed by health care providers. Our results can inform interventions to improve the determination of goals of care in the hospital setting.

Using standardized family members to teach communication skills and ethical principles to critical care trainees

Objective:We sought to determine the effectiveness of standardized family members for improving communication skills and ethical and legal knowledge of senior intensive care unit trainees. Design:Multimodal evaluation of mixed-methods educational intervention. Setting:Postgraduate critical care medicine academic program. Subjects:Postgraduate subspecialty critical care medicine trainees. Intervention:Communication workshop featuring a short didactic session and four simulated family meetings using trained professionals as standardized family members. Measurements:Ethical and legal knowledge and comfort with communication (before and after the workshop) and communication skill (during the workshop). Main Results:Fifty-one postgraduate critical care medicine subspecialty trainees participated in the workshop over a 5-yr period. Ethical and legal knowledge and comfort scores improved significantly among trainees who participated in the workshop. Ninety percent of trainees felt that the workshop had met or exceeded their expectations and would recommend it to other trainees. Ninety-eight percent of trainees felt that the workshop had met the highest priority learning objectives they identified. Communication scores showed a trend towards improvement over the course of the workshop, although the improvements were not significant. Participants reflecting on the workshop >1 yr later overwhelmingly felt that it had prepared them for real communication challenges in training and practice. Conclusions:This workshop was effective for improving ethical and legal knowledge and comfort with communication among critical care medicine trainees. Participants overwhelmingly felt that it had met their learning needs and that it was an effective teaching tool that had prepared them for real communication challenges in training and practice. It could be used in a variety of contexts to address an often-neglected area of education.

Guidelines for the withdrawal of life-sustaining measures

BackgroundWithdrawal of life-sustaining measures is a common event in the intensive care unit yet it involves a complex balance of medical, legal and ethical considerations. Very few healthcare providers have been specifically trained to withdraw life-sustaining measures, and no comprehensive guidelines exist to help ensure clinicians deliver the highest quality of care to patients and families. Hence, we sought to develop guidelines for the process of withdrawing life-sustaining measures in the clinical setting.MethodsWe convened an interdisciplinary group of ICU care providers from the Canadian Critical Care Society and the Canadian Association of Critical Care Nurses, and used a modified Delphi process to answer key clinical and ethical questions identified in the literature.ResultsA total of 39 experienced clinicians completed the initial workshop, and 36 were involved in the subsequent Delphi rounds. The group developed a series of guidelines to address (1) preparing for withdrawal of life-sustaining measures; (2) assessment of distress; (3) pharmaceutical management of distress; and (4) discontinuation of life-sustaining measures and monitoring. The group achieved consensus on all aspects of the guidelines after the third Delphi round.ConclusionWe present these guidelines to help physicians provide high-quality end of life (EOL) care in the ICU. Future studies should address their effectiveness from both critical care team and family perspectives.

Changes in end of life care 5 years after the introduction of a rapid response team: A multicentre retrospective study

RATIONALE Rapid response teams (RRTs) are intended to stabilize deteriorating patients on the ward, but recent studies suggest that RRTs may also improve end-of-life care (EOLC). We sought to study the effect of introducing an RRT on EOLC at our institutions, and compare the EOLC care received by patients who were consulted by the RRT with that of patients who were not consulted by the RRT. METHODS Retrospective review of 450 consecutive deaths at 3 institutions. We compared demographic factors and EOLC received before (2005) and 5 years after (2010) the introduction of an RRT. We also compared these same factors for patients who died in 2010 with and without RRT consultation. RESULTS There were no differences in the proportion of patients who had Patient/Family Conferences or orders to limit life support on the ward between 2005 and 2010. Although the RRT was consulted for 30% of patients eligible to be seen by the RRT, the RRT was involved in only 11.1% of Patient/Family Conferences that took place on the ward. The prevalence of palliative care consultation and orders for opioids as needed was higher in 2010 than 2005, but those seen by the RRT were less likely to receive a palliative care consultation (30.2% vs. 55.9%), spiritual care consultation (25.4% vs. 41.3%) or an order for sedatives as needed (44.4% vs. 65.0%) than those who were not seen by the RRT. There was no change in the proportion of patients admitted to the ICU in 2010 compared with 2005, and multivariable logistic regression showed that the year of death did not influence the likelihood of ICU admission based on any comorbid or demographic factors. CONCLUSIONS The introduction of an RRT was not associated with significant improvements in EOLC at our institutions. However, almost 1/3 of dying patients were consulted by the RRT, suggesting that the RRT could play a role in facilitating improved EOLC for some inpatients.

The "surprise question" for predicting death in seriously ill patients: a systematic review and meta-analysis.

BACKGROUND: The surprise question — “Would I be surprised if this patient died in the next 12 months?” — has been used to identify patients at high risk of death who might benefit from palliative care services. Our objective was to systematically review the performance characteristics of the surprise question in predicting death. METHODS: We searched multiple electronic databases from inception to 2016 to identify studies that prospectively screened patients with the surprise question and reported on death at 6 to 18 months. We constructed models of hierarchical summary receiver operating characteristics (sROCs) to determine prognostic performance. RESULTS: Sixteen studies (17 cohorts, 11 621 patients) met the selection criteria. For the outcome of death at 6 to 18 months, the pooled prognostic characteristics were sensitivity 67.0% (95% confidence interval [CI] 55.7%–76.7%), specificity 80.2% (73.3%–85.6%), positive likelihood ratio 3.4 (95% CI 2.8–4.1), negative likelihood ratio 0.41 (95% CI 0.32–0.54), positive predictive value 37.1% (95% CI 30.2%–44.6%) and negative predictive value 93.1% (95% CI 91.0%–94.8%). The surprise question had worse discrimination in patients with noncancer illness (area under sROC curve 0.77 [95% CI 0.73–0.81]) than in patients with cancer (area under sROC curve 0.83 [95% CI 0.79–0.87; p = 0.02 for difference]). Most studies had a moderate to high risk of bias, often because they had a low or unknown participation rate or had missing data. INTERPRETATION: The surprise question performs poorly to modestly as a predictive tool for death, with worse performance in noncancer illness. Further studies are needed to develop accurate tools to identify patients with palliative care needs and to assess the surprise question for this purpose.

Using a Pocket Card to Improve End-of-life Care on Internal Medicine Clinical Teaching Units: A Cluster-randomized Controlled Trial

End-of-life care is suboptimally taught in undergraduate and postgraduate education in Canada. Previous interventions to improve residents’ knowledge and comfort have involved lengthy comprehensive educational modules or dedicated palliative care rotations. To determine the effectiveness of a cheap, portable, and easily implemented pocket reference for improving residents’ knowledge and comfort level in dealing with pain and symptom management on the medical ward. Cluster-randomized controlled trial conducted from August 2005 to June 2006. Medical clinical teaching units (CTUs) in 3 academic hospitals in Toronto, Canada. All residents rotating through the medical CTUs who consented to participate in the study. Residents at 1 hospital received a pocket reference including information about pain and symptom control, as well as 1–2 didactic end-of-life teaching sessions per month normally given as part of the rotation. Residents at the other 2 hospitals received only the didactic sessions. A 10-question survey assessing knowledge and comfort level providing end-of-life care to medical inpatients, as well as focus group interviews. One hundred thirty-six residents participated on 3 CTUs for a participation rate of approximately 75%. Comfort levels improved in both control (p < .01) and intervention groups (p < .01), but the increase in comfort level was significantly higher in the intervention group (z = 2.57, p < .01). Knowledge was not significantly improved in the control group (p = .06), but was significantly improved in the intervention group (p = .01). Greater than 90% of residents in the intervention group used the card at least once per week, and feedback from the focus groups was very positive. Our pocket card is a feasible, economical, and educational intervention that improves resident comfort level and knowledge in delivering end-of-life care on CTUs.BackgroundEnd-of-life care is suboptimally taught in undergraduate and postgraduate education in Canada. Previous interventions to improve residents’ knowledge and comfort have involved lengthy comprehensive educational modules or dedicated palliative care rotations.ObjectiveTo determine the effectiveness of a cheap, portable, and easily implemented pocket reference for improving residents’ knowledge and comfort level in dealing with pain and symptom management on the medical ward.DesignCluster-randomized controlled trial conducted from August 2005 to June 2006.SettingMedical clinical teaching units (CTUs) in 3 academic hospitals in Toronto, Canada.ParticipantsAll residents rotating through the medical CTUs who consented to participate in the study.InterventionResidents at 1 hospital received a pocket reference including information about pain and symptom control, as well as 1–2 didactic end-of-life teaching sessions per month normally given as part of the rotation. Residents at the other 2 hospitals received only the didactic sessions.Main Outcome MeasuresA 10-question survey assessing knowledge and comfort level providing end-of-life care to medical inpatients, as well as focus group interviews.ResultsOne hundred thirty-six residents participated on 3 CTUs for a participation rate of approximately 75%. Comfort levels improved in both control (p < .01) and intervention groups (p < .01), but the increase in comfort level was significantly higher in the intervention group (z = 2.57, p < .01). Knowledge was not significantly improved in the control group (p = .06), but was significantly improved in the intervention group (p = .01). Greater than 90% of residents in the intervention group used the card at least once per week, and feedback from the focus groups was very positive.ConclusionsOur pocket card is a feasible, economical, and educational intervention that improves resident comfort level and knowledge in delivering end-of-life care on CTUs.

Why do patients agree to a "Do not resuscitate" or "Full code" order? Perspectives of medical inpatients.

The majority of patients who die in hospital have a “Do Not Resuscitate” (DNR) order in place at the time of their death, yet we know very little about why some patients request or agree to a DNR order, why others don’t, and how they view discussions of resuscitation status. We conducted semi-structured interviews of English-speaking medical inpatients who had clearly requested a DNR or full code (FC) order after a discussion with their admitting team, and analyzed the transcripts using a modified grounded-theory approach. We achieved conceptual saturation after conducting 44 interviews (27 DNR, 17 FC) over a 4-month period. Patients in the DNR group were much older than those in the FC group, but they had broadly similar admission diagnoses and comorbidities. DNR patients reported much greater familiarity with the subject and described a more positive experience than FC patients with their resuscitation discussions. Participants typically requested FC or DNR orders based on personal, relational or philosophical considerations, but these considerations manifested differently depending on the participant’s preference for resuscitation. Most FC patients stated that would not want a prolonged period of life support, and they would not want resuscitation in the event of a poor quality of life. FC and DNR patients understood resuscitation and DNR orders differently. DNR patients described resuscitation in graphic, concrete terms that emphasized suffering and futility, and DNR orders in terms of comfort or natural processes. FC patients understood resuscitation in an abstract sense as something that restores life, while DNR orders were associated with substandard care or even euthanasia. Our study identified important differences and commonalities between the perspectives of DNR and FC patients. We hope that this information can be used to help physicians better understand the needs of their patients when discussing resuscitation.BACKGROUNDThe majority of patients who die in hospital have a “Do Not Resuscitate” (DNR) order in place at the time of their death, yet we know very little about why some patients request or agree to a DNR order, why others don’t, and how they view discussions of resuscitation status.METHODSWe conducted semi-structured interviews of English-speaking medical inpatients who had clearly requested a DNR or full code (FC) order after a discussion with their admitting team, and analyzed the transcripts using a modified grounded-theory approach.RESULTSWe achieved conceptual saturation after conducting 44 interviews (27 DNR, 17 FC) over a 4-month period. Patients in the DNR group were much older than those in the FC group, but they had broadly similar admission diagnoses and comorbidities. DNR patients reported much greater familiarity with the subject and described a more positive experience than FC patients with their resuscitation discussions. Participants typically requested FC or DNR orders based on personal, relational or philosophical considerations, but these considerations manifested differently depending on the participant’s preference for resuscitation. Most FC patients stated that would not want a prolonged period of life support, and they would not want resuscitation in the event of a poor quality of life. FC and DNR patients understood resuscitation and DNR orders differently. DNR patients described resuscitation in graphic, concrete terms that emphasized suffering and futility, and DNR orders in terms of comfort or natural processes. FC patients understood resuscitation in an abstract sense as something that restores life, while DNR orders were associated with substandard care or even euthanasia.CONCLUSIONOur study identified important differences and commonalities between the perspectives of DNR and FC patients. We hope that this information can be used to help physicians better understand the needs of their patients when discussing resuscitation.

The desirability of an Intensive Care Unit (ICU) Clinician-Led Bereavement Screening and Support Program for Family Members of ICU Decedents (ICU Bereave)☆

PURPOSE Many bereaved family members (FMs) of intensive care unit decedents experience symptoms of complicated grief (CG) or social distress, but there is no standard screening or follow-up for these individuals. We determined the desirability and need for an intensive care unit-based bereavement screening and support program for these FMs. METHODS We surveyed bereaved FMs to measure symptoms of CG, prolonged grief disorder, and social difficulties and the desire for support; and staff physicians and nurses at 2 teaching hospitals in Toronto, Canada, to determine comfort and interest in providing routine bereavement support. RESULTS We could not contact 69% of FMs largely because of inaccuracies in the patient record. Of the 64 who were contacted, 32 (50%) agreed to be surveyed a mean (SD) of 7.4 (2.2) months after the loss of their relative. Among eligible staff, 57 (61%) of 94 completed the questionnaire. Nine (28%) FMs met subthreshold criteria for CG or prolonged grief disorder, and 7 (22%) met criteria for social distress. Only 10 (31%) had received professional support for emotional symptoms, and 2 (6%) received professional assistance for their social difficulties. Fifty-eight percent supported routine screening, and 68% wanted to receive (or receive more) support. Fifty-five percent of FMs expressed a strong willingness to meet with the medical team to review events surrounding the death of the patient, which was the type of support that the health care staff were most comfortable providing. Most staff (85%) reported providing emotional support at the time of death, but few provided any support afterwards. Fifty-six (98%) of 57 would be willing to support or participate in a formal bereavement screening and support program. Respondents cited the need for training and dedicated time to carry out such a program. CONCLUSIONS An ICU-based bereavement screening and support program for FMs of ICU decedents is both needed and desirable, although there are important needs and barriers. Future studies should evaluate the effectiveness for such a program at improving outcomes among bereaved FMs.

Nonbeneficial treatment Canada: definitions, causes, and potential solutions from the perspective of healthcare practitioners*.

Objective:Many healthcare workers are concerned about the provision of nonbeneficial treatment in the acute care setting. We sought to explore the perceptions of acute care practitioners to determine whether they perceived nonbeneficial treatment to be a problem, to generate an acceptable definition of nonbeneficial treatment, to learn about their perceptions of the impact and causes of nonbeneficial treatment, and the ways that they feel could reduce or resolve nonbeneficial treatment. Design:National, bilingual, cross-sectional survey of a convenience sample of nursing and medical staff who provide direct patient care in acute medical wards or ICUs in Canada. Main Results:We received 688 responses (response rate 61%) from 11 sites. Seventy-four percent of respondents were nurses. Eighty-two percent of respondents believe that our current means of resolving nonbeneficial treatment are inadequate. The most acceptable definitions of nonbeneficial treatment were “advanced curative/life-prolonging treatments that would almost certainly result in a quality of life that the patient has previously stated that he/she would not want” (88% agreement) and “advanced curative/life-prolonging treatments that are not consistent with the goals of care (as indicated by the patient)” (83% agreement). Respondents most commonly believed that nonbeneficial treatment was caused by substitute decision makers who do not understand the limitations of treatment, or who cannot accept a poor prognosis (90% agreement for each cause), and 52% believed that nonbeneficial treatment was “often” or “always” continued until the patient died or was discharged from hospital. Respondents believed that nonbeneficial treatment was a common problem with a negative impact on all stakeholders (> 80%) and perceived that improved advance care planning and communication training would be the most effective (92% and 88%, respectively) and morally acceptable (95% and 92%, respectively) means to resolve the problem of nonbeneficial treatment. Conclusions:Canadian nurses and physicians perceive that our current means of resolving nonbeneficial treatment are inadequate, and that we need to adopt new techniques of resolving nonbeneficial treatment. The most promising strategies to reduce nonbeneficial treatment are felt to be improved advance care planning and communication training for healthcare professionals.