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
People often do not receive the kind of care they want at the end of their lives.1,2 Although most people say they do not wish to have aggressive interventions if they are dying,3-5 nearly one in five dies in the hospital and one in seven dies in the intensive care unit (ICU), where aggressive care is usually provided.6 Coming demographic shifts will put this phenomenon in relief. The US Census Bureau estimates the number of people over age 85 will balloon to 20 million by 2050.7
A proposed strategy for reducing this mismatch is to expand shared decision making for people facing life-sustaining treatment decisions.8-10 Patient decision aids are tools that help people make informed healthcare decisions in light of their values and preferences, facilitating shared decision making.8,11 Decision aids can take many forms: paper-based, audio/video-based, or online. They can be intended for the clinical encounter (used in partnership with a physician, nurse, or other clinician), independent patient use, or peer-to-peer use.8 In a 2017 review, Stacey and colleagues found that patient decision aids improve knowledge, clarify values, encourage more active decision making, and improve risk perception, across a variety of treatment and screening decisions.12 They also concluded that decision aids might help people make decisions that are more aligned with their values, without affecting health outcomes negatively. 12
The number of available patient decision aids for people making life-sustaining treatment choices during serious illness near death is currently unknown. A 2014 review of all advanced care planning decision aids, including those for people who are healthy and people who are seriously ill, found 16 published studies in the peer-reviewed literature that tested patient decision aids for advanced care planning, but they did not systematically search the Internet and query key informants.13
Given the frequency of serious illness and death in hospital settings, awareness of potentially useful tools, their quality, and their use may be of interest to practicing hospitalists. This awareness may inform their decision making around whether or not to use decision aids in their own practice.
METHODS
Study Aims and Design
With our systematic environmental scan, we aimed to identify all decision aids available to seriously ill people near death facing choices about life-sustaining treatments, developed by both academic researchers and private organizations. We set out to articulate their quality and the degree to which they are used.
Protocol
We developed four research questions to address our study objectives. Our questions were as follows: (1) What English-language patient decision aids are available? (2) What are the characteristics of these patient decision aids? (3) What is the quality of these patient decision aids, including readability? (4) What organizations use these patient decision aids in routine care (exploratory)? 14-16 See protocol: doi: 10.1007/s40271-017-0268-2.17
