Angelo E. Volandes

Investing in Deliberation: A Definition and Classification of Decision Support Interventions for People Facing Difficult Health Decisions

This article provides an analysis of ‘decision aids’, interventions to support patients facing tough decisions. Interest has increased since the concept of shared decision making has become widely considered to be a means of achieving desirable clinical outcomes. We consider the aims of these interventions and examine assumptions about their use. We propose three categories, interventions that are used in face-to-face encounters, those designed for use outside clinical encounters and those which are mediated, using telephone or other communication media. We propose the following definition: decision support interventions help people think about choices they face; they describe where and why choice exists; they provide information about options, including, where reasonable, the option of taking no action. These interventions help people to deliberate, independently or in collaboration with others, about options, by considering relevantattributes; they support people to forecast how they might feel about short, intermediate and long-term outcomes which have relevant consequences, in ways which help the process of constructing preferences and eventual decision making, appropriate to their individual situation. Although quality standards have been published for these interventions, we are also cautious about premature closure and consider that the need for short versions for use inside clinical encounters and long versions for external use requires further research. More work is also needed on the use of narrative formats and the translation of theory into practical designs. The interest in decision support interventions for patients heralds a transformation in clinical practice although many important areas remain unresolved.

Video decision support tool for advance care planning in dementia: randomised controlled trial

Objective To evaluate the effect of a video decision support tool on the preferences for future medical care in older people if they develop advanced dementia, and the stability of those preferences after six weeks. Design Randomised controlled trial conducted between 1 September 2007 and 30 May 2008. Setting Four primary care clinics (two geriatric and two adult medicine) affiliated with three academic medical centres in Boston. Participants Convenience sample of 200 older people (≥65 years) living in the community with previously scheduled appointments at one of the clinics. Mean age was 75 and 58% were women. Intervention Verbal narrative alone (n=106) or with a video decision support tool (n=94). Main outcome measures Preferred goal of care: life prolonging care (cardiopulmonary resuscitation, mechanical ventilation), limited care (admission to hospital, antibiotics, but not cardiopulmonary resuscitation), or comfort care (treatment only to relieve symptoms). Preferences after six weeks. The principal category for analysis was the difference in proportions of participants in each group who preferred comfort care. Results Among participants receiving the verbal narrative alone, 68 (64%) chose comfort care, 20 (19%) chose limited care, 15 (14%) chose life prolonging care, and three (3%) were uncertain. In the video group, 81 (86%) chose comfort care, eight (9%) chose limited care, four (4%) chose life prolonging care, and one (1%) was uncertain (χ2=13.0, df=3, P=0.003). Among all participants the factors associated with a greater likelihood of opting for comfort care were being a college graduate or higher, good or better health status, greater health literacy, white race, and randomisation to the video arm. In multivariable analysis, participants in the video group were more likely to prefer comfort care than those in the verbal group (adjusted odds ratio 3.9, 95% confidence interval 1.8 to 8.6). Participants were re-interviewed after six weeks. Among the 94/106 (89%) participants re-interviewed in the verbal group, 27 (29%) changed their preferences (κ=0.35). Among the 84/94 (89%) participants re-interviewed in the video group, five (6%) changed their preferences (κ=0.79) (P<0.001 for difference). Conclusion Older people who view a video depiction of a patient with advanced dementia after hearing a verbal description of the condition are more likely to opt for comfort as their goal of care compared with those who solely listen to a verbal description. They also have more stable preferences over time. Trial registration Clinicaltrials.gov NCT00704886.

Health Literacy not Race Predicts End-of-Life Care Preferences

BACKGROUND Several studies have reported that African Americans are more likely than whites to prefer aggressive treatments at the end of life. OBJECTIVE Since the medical information presented to subjects is frequently complex, we hypothesized that apparent differences in end-of-life preferences and decision making may be due to disparities in health literacy. A video of a patient with advanced dementia may overcome communication barriers associated with low health literacy. DESIGN Before and after oral survey. PARTICIPANTS Subjects presenting to their primary care doctors. METHODS Subjects were asked their preferences for end-of-life care after they heard a verbal description of advanced dementia. Subjects then viewed a 2-minute video of a patient with advanced dementia and were asked again about their preferences. For the analysis, preferences were dichotomized into comfort care and aggressive care. Health literacy was measured using the Rapid Estimate of Adult Literacy in Medicine (REALM) and subjects were divided into three literacy categories: low (0-45, sixth grade and below), marginal (46-60, seventh to eighth grade) and adequate (61-66, ninth grade and above). Unadjusted and adjusted logistic regression models were fit using stepwise algorithms to examine factors related to initial preferences before the video. RESULTS A total of 80 African Americans and 64 whites completed the interview. In unadjusted analyses, African Americans were more likely than whites to have preferences for aggressive care after the verbal description, odds ratio (OR) 4.8 (95% confidence interval [CI] 2.1-10.9). Subjects with low or marginal health literacy were also more likely than subjects with adequate health literacy to have preferences for aggressive care after the verbal description, OR 17.3 (95% CI 6.0-49.9) and OR 11.3 (95% CI 4.2-30.8) respectively. In adjusted analyses, health literacy (low health literacy: OR 7.1, 95% CI 2.1-24.2; marginal health literacy OR 5.1, 95% CI 1.6-16.3) but not race (OR 1.1, 95% CI 0.3-3.2) was an independent predictor of preferences after the verbal description. After watching a video of advanced dementia, there were no significant differences in the distribution of preferences by race or health literacy. CONCLUSIONS Health literacy and not race was an independent predictor of end-of-life preferences after hearing a verbal description of advanced dementia. In addition, after viewing a video of a patient with advanced dementia there were no longer any differences in the distribution of preferences according to race and health literacy. These findings suggest that clinical practice and research relating to end-of-life preferences may need to focus on a patient education model incorporating the use of decision aids such as video to ensure informed decision-making.

Health Literacy, Health Inequality and a Just Healthcare System

Limited health literacy is a pervasive and independent risk factor for poor health outcomes. Despite decades of reports exhibiting that the healthcare system is overly complex, unneeded complexity remains commonplace and endangers the lives of patients, especially those with limited health literacy. In this article, we define health literacy and describe the empirical evidence associating health literacy and poor health outcomes. We recast the issue of poor health literacy from within the ethical perspective of the least well-off and argue that poor health outcomes deriving from limited health literacy ought to be understood as a fundamental injustice of the healthcare system. We offer three proposals that attempt to rectify this injustice, including: universal precautions that presume limited health literacy for all healthcare users; expanded use of technology supported communication; and clinical incentives that account for limited health literacy.

Improving Decision Making at the End of Life with Video Images

Background. Decision making at the end of life is frequently complex and often filled with uncertainty. We hypothesized that people with limited health literacy would have more uncertainty about end-of-life decision making than people with adequate literacy. We also hypothesized that video images would decrease uncertainty. Design. Before and after oral survey. Participants. Subjects presenting to their primary care physicians. Methods. Subjects were asked about their preferences for end-of-life care after they heard a verbal description of advanced dementia and were asked to rate the level of their uncertainty. Subjects then viewed a video of a patient with advanced dementia and were asked again about their preferences and uncertainty. Uncertainty was measured using the Decisional Conflict Scale with score ranges from 3 (high uncertainty) to 15 (no uncertainty). Health literacy was measured using the Rapid Estimate of Adult Literacy in Medicine, and subjects were divided into 3 literacy categories: low (0—45, 6th grade and below), marginal (46— 60, 7th—8th grade), and adequate (61—66, 9th grade and above). Results. A total of 146 patients completed the interview. Prior to the video, the average uncertainty scores for subjects with low, marginal, and adequate health literacy were 10.8, 12.4, and 13.5, respectively (P < 0.0001). After the video, the 3 groups had similar uncertainty about their decisions. The average uncertainty scores for subjects with low, marginal, and adequate health literacy were 13.6, 14.1, and 14.5, respectively (P = 0.046). Conclusions. Subjects with limited health literacy expressed more uncertainty about their preferences for end-of-life care than did subjects with adequate literacy. Our video decision aid improved end-of-life decision making by decreasing uncertainty regarding subjects’ preferences, especially for those with limited literacy.

The standard of caring: why do we still use feeding tubes in patients with advanced dementia?

A consensus among geriatricians, ethicists, and neurologists supports a palliative approach to the care of individuals with late-stage dementia. But ten years after the publication of the first large study demonstrating the lack of efficacy of percutaneous endoscopic gastrostomy (PEG) tubes in prolonging life for patients with advanced dementia, and seven years after the appearance of two articles in major medical journals arguing that tube feeding should no longer be the standard of care for individuals with advanced dementia, gastrostomy tubes remain commonplace in this population. One overlooked reason that many families and physicians continue to opt for artificial nutrition is that the case for feeding tubes is a moral one and not a scientific one. What may be at issue for families is how best to demonstrate caring, and caring is not readily amenable to empirical study. A better approach to family members who want feeding tubes for the demented is to acknowledge the symbolic value of nutrition for them and to seek an alternative means of satisfying the need to feed.

Assessing End-of-Life Preferences for Advanced Dementia in Rural Patients Using an Educational Video: A Randomized Controlled Trial

OBJECTIVE Few studies have evaluated the end-of-life preferences of elderly patients in rural communities and whether preferences are associated with level of health literacy. DESIGN Randomized controlled trial of a goals-of-care video decision aid of advanced dementia. PARTICIPANTS Elderly subjects (65 years or older) at a primary care clinic in rural Louisiana. METHODS Half of subjects heard a verbal description of advanced dementia and the goals of care; the other half heard the same verbal description and then viewed the video decision aid. End points were the preferred goal of care in advanced dementia: life-prolonging care (cardiopulmonary resuscitation [CPR], etc.), limited care (hospitalization but not CPR), or comfort care (symptom relief). The principal category for analysis was the difference in proportions of subjects preferring comfort care for each characteristic including randomization group and health literacy level. RESULTS Seventy-six subjects were randomized to the verbal (n = 43) or video (n = 33) arms of the study. Among subjects receiving the verbal description of advanced dementia and the goals of care, 31 (72%) preferred comfort; 5 (12%) chose limited; and 7 (16%) desired life-prolonging. In the video group, 30 (91%) preferred comfort; 3 (9%) chose limited; and none desired life-prolonging (χ(2) = 6.3, df = 2, p = 0.047). Factors associated with greater likelihood of opting for comfort included greater health literacy (unadjusted odds ratio [OR] 12.1; 95% confidence interval [CI], 2.4-62.6) and randomization to the video (unadjusted OR 3.9; 95% CI, 1.0-15.1). CONCLUSION Rural subjects with higher health literacy were more likely to want comfort care compared to those with lower levels of health literacy. Furthermore, subjects who viewed a video decision aid were more likely to opt for comfort compared to those who solely listened to a verbal description. These findings suggest that video can help elicit preferences and that interventions to empower such patients need to be designed in a manner that is sensitive to health literacy.

A Randomized Controlled Trial of a Cardiopulmonary Resuscitation Video in Advance Care Planning for Progressive Pancreas and Hepatobiliary Cancer Patients

BACKGROUND Cardiopulmonary resuscitation (CPR) is an important advance directive (AD) topic in patients with progressive cancer; however such discussions are challenging. OBJECTIVE This study investigates whether video educational information about CPR engenders broader advance care planning (ACP) discourse. METHODS Patients with progressive pancreas or hepatobiliary cancer were randomized to an educational CPR video or a similar CPR narrative. The primary end-point was the difference in ACP documentation one month posttest between arms. Secondary end-points included study impressions; pre- and post-intervention knowledge of and preferences for CPR and mechanical ventilation; and longitudinal patient outcomes. RESULTS Fifty-six subjects were consented and analyzed. Rates of ACP documentation (either formal ADs or documented discussions) were 40% in the video arm (12/30) compared to 15% in the narrative arm (4/26), OR=3.6 [95% CI: 0.9-18.0], p=0.07. Post-intervention knowledge was higher in both arms. Posttest, preferences for CPR had changed in the video arm but not in the narrative arm. Preferences regarding mechanical ventilation did not change in either arm. The majority of subjects in both arms reported the information as helpful and comfortable to discuss, and they recommended it to others. More deaths occurred in the video arm compared to the narrative arm, and more subjects died in hospice settings in the video arm. CONCLUSIONS This pilot randomized trial addressing downstream ACP effects of video versus narrative decision tools demonstrated a trend towards more ACP documentation in video subjects. This trend, as well as other video effects, is the subject of ongoing study.

Augmenting Communication and Decision Making in the Intensive Care Unit with a Cardiopulmonary Resuscitation Video Decision Support Tool: A Temporal Intervention Study

OBJECTIVE Effective communication between intensive care unit (ICU) providers and families is crucial given the complexity of decisions made regarding goals of therapy. Using video images to supplement medical discussions is an innovative process to standardize and improve communication. In this six-month, quasi-experimental, pre-post intervention study we investigated the impact of a cardiopulmonary resuscitation (CPR) video decision support tool upon knowledge about CPR among surrogate decision makers for critically ill adults. METHODS We interviewed surrogate decision makers for patients aged 50 and over, using a structured questionnaire that included a four-question CPR knowledge assessment similar to those used in previous studies. Surrogates in the post-intervention arm viewed a three-minute video decision support tool about CPR before completing the knowledge assessment and completed questions about perceived value of the video. RESULTS We recruited 23 surrogates during the first three months (pre-intervention arm) and 27 surrogates during the latter three months of the study (post-intervention arm). Surrogates viewing the video had more knowledge about CPR (p=0.008); average scores were 2.0 (SD 1.1) and 2.9 (SD 1.2) (out of a total of 4) in pre-intervention and post-intervention arms. Surrogates who viewed the video were comfortable with its content (81% very) and 81% would recommend the video. CPR preferences for patients at the time of ICU discharge/death were distributed as follows: pre-intervention: full code 78%, DNR 22%; post-intervention: full code 59%, DNR 41% (p=0.23).

Augmenting advance care planning in poor prognosis cancer with a video decision aid: a preintervention-postintervention study.

The authors tested whether an educational video on the goals of care in advanced cancer (life‐prolonging care, basic care, or comfort care) helped patients understand these goals and had an impact on their preferences for resuscitation.