Serious Choices: A Systematic Environmental Scan of Decision Aids and Their Use for Seriously Ill People Near Death
Seriously ill people near death face difficult decisions about life-sustaining treatments such as cardiopulmonary resuscitation and mechanical ventilation. Patient decision aids may improve alignment between patients’ preferences and the care they receive, but the quantity, quality, and routine use of these tools are unknown. We conducted a systematic environmental scan to identify all decision aids for seriously ill people at high risk of death facing choices about life-sustaining treatments, assess their quality, and explore their use in clinical settings. We searched MEDLINE, Google, and mobile application stores and surveyed experts. We included 27 decision aids in our scan. Concerning content, 14 of 27 decision aids for seriously ill people near death were for people with specific diseases and conditions (ie, advanced cancer or kidney disease); 11 concerned individual life-sustaining treatment decisions (ie, cardiopulmonary resuscitation or mechanical ventilation). Only two focused on more general care pathways (ie, life-sustaining intervention, palliative care, and hospice). Twenty-four of 27 decision aids presented options in a balanced way; 23 identified funding sources, and 19 of 27 reported their publication date. Just 11 used plain language. A minority, 11 of 27, listed evidence sources, five documented rigorous evidence-synthesis methods, six disclosed competing interests, and three offered update policies. Preliminary results suggest that few health systems use decision aids in routine patient care. Although many decision aids exist for life-sustaining treatment decisions during serious illness, the tools are deficient in some key quality areas.
© 2019 Society of Hospital Medicine
Characteristics of Included Decision Aids
Of the 27 decision aids we included in our review, 14 (52%) were tailored to seriously ill individuals with specific conditions. Eleven decision aids (41%) concerned specific life-sustaining treatments. Two decision aids concerned general treatment approaches, such as life-sustaining care versus palliative care (Table 1).
The decision aids were of variable length and approach. Some were text only, while others were image heavy. The mean length of decision aids was 19 pages, while the median length was 10 pages. Included decision aids offered interventions meant to return patients to health, as well as palliative interventions and comfort care.
Notably, most of the decision aids we included in our review (25 decision aids; 93%) were freely available online. Three (11%) were not. Seventeen (63%) decision aids were developed in the U.S., eight (30%) in Canada, two (7%) in Australia, and one (4%) in the Netherlands (in Dutch, translated using Google Translate). Additionally, there were 22 potentially eligible decision aids that we could not access to review and therefore could not include.
Quality of Included Decision Aids
The overall correlation of scores between the two reviewers was high (0.85). Agreement was high for both reviewers for all categories (balanced 90%, K = 0.0; outcome probabilities 86%, K = 0.7; publication date 93%, K = 0.8; update policy 93%, K = 0.7; funding sources 96%, K = 0.8), except the category concerning the rigor of the decision aid development process (66%, K = 0.2) and the evidence sources used (79%, K = 0.6) categories.
The quality of the decision aids was high in some categories. Of 27 decision aids, most presented options in a balanced way (24, 89%) and identified funding sources (23, 85%). They also reported publication dates most of the time (19, 70%). Readability of the included decision aids was mixed. The average readability grade level was 7.5, with a low score of 4.1 and a high score of 10.7. Eleven decision aids (41%) had readability levels less than seventh grade (Table 2). Thirteen had plain language, including video decision aids that we agreed used plain language.
The decision aids also had consistently low scores in some categories. Of 27, only 11 listed their evidence sources (41%), 11 reported a rigorous evidence-synthesis method (41%), six stated their competing interests (22%), and three offered an update policy (11%). There were no notable differences in the quality of the decision aids in each of the three category types (condition-specific, treatment-specific, general).
Use of Included and Excluded Decision Aids (exploratory)
We received 60 of 187 responses to our key informant survey. We asked every respondent if they were aware of any relevant decision aids. Of the 60 respondents, 45 (75%) said they were aware of decision aids, but only 38 (63%) offered the names of potential tools. Twenty-six respondents (43%) said they were aware of institutions that used the decision aids in routine and sustained care. Twenty-four respondents (40%) offered names of organizations, but most of the suggestions concerned decision aids that did not qualify for inclusion in our review or care that was not routine or sustained. In this preliminary use estimation, we found evidence for the use of only three decision aids or similar tools in routine care, two of which we included in our review.
