Designing a content-enriched
advance directive document
Examining Standard Advance Directives
In order to create a truly effective and comprehensive advance direct, it was necessary to fully understand the limits and problems that needed to be overcome. Thus, the first step taken was to comprehensively review of all relevant literature available on the topic. This ultimately required the review of more than 6,000 articles drawn from medical journals, legal journals, ethics literature, and the popular press, along with a review of all statutes from every state in the Union and four major U.S. territories.
From the literature review it was learned that current advance directives have been heavily and extensively criticized by an overwhelming majority of medical researchers for being too limited, too vague, and too confusing in design. Further, current documents tend to ignore the needs of patients and families and focus instead on the medical and legal aspects of advance decision-making.
The review also shed crucial light on ways that advance directives could be improved. Key to this was a long-overlooked approach here dubbed the "outcomes information" perspective.
Numerous studies revealed that the public's greatest need in making any serious medical decision is information on the expected long-term outcomes of a condition or situation. This finding stands in stark contrast to current advance directives, which largely ignore long-term outcomes. Instead, they focus on the specific medical treatments and procedures that might be used or rejected. The result has been to bypass the very heart of the issue from the public's perspective.
The “Outcomes” Perspective
Specifically, numerous studies on medical decision-making have confirmed that “patients desired information focusing more on expected outcomes than on medical processes” (Pfeifer, etal, '94). This finding was so important that it reemerged again and again, emphasizing that “patients are focused on the outcomes of end-of-life care, in contrast to the processes of such care,” and that “issues of death and disability outweighed concerns about endotracheal tubes and cardiopulmonary resuscitation, which the physicians often talked about instead” (Pfeifer, etal, '94).
Similarly, in qualitative analyses of interviews with senior adults it was reported that they were “concerned primarily with the outcomes of serious illness rather than the medical interventions that might be used, and defined treatments as desirable [only] to the extent they could return [them to]...valued life activities” (Rosenfeld, KE '00). The researchers thus concluded, “These finding suggest that advance directives and physician-patient discussions that focus on acceptable health states and valued life activities may be better suited to patients’ end-of-life care goals than those that focus on specific medical interventions such as cardiopulmonary resuscitation.”
Numerous others researchers agreed. For example, one physician- researcher notes that, “Patients retrospectively report wanting information about the...impact of the disease on themselves, their families, and their careers” instead of the technical information they usually receive (Quill, TE '00). Another physician described typical decision-making conversations as “woefully inadequate” specifically because they do “not discuss prognosis.” Yet another researcher notes that, “emphasis on a ‘...condition’ distracts from what should be the more important issue of weighing the benefits and burdens of ‘any’ medical treatment in regard to the total well-being of the whole patient, rather than on a particular [treatment or] disorder” (Silverman, H, etal, '92).
Further Outcomes-Content Considerations
Pursuing "outcomes" in the process of treatment decision-making also adds greater balance and meaning to the typical patient-doctor information exchange. As put by another researcher, “...patients are fully capable of knowing and expressing their wishes with respect to [the] conditions under which they would prefer not to be kept alive and...physicians, through their training and experience, are best able to understand which treatments...best meet their patients’ wishes” (Schneiderman, LJ, etal, '92).
Thus, this perspective recognizes that only doctors can and should select specific medical treatments. In like manner, however, no one is more capable than the individual in determining the kinds of ‘health outcome’ conditions he or she is willing to live with. Loosely paraphrased, one theorist put it this way, “No one can say, by virtue of professional training, which health conditions an individual would be willing to live with any more than they could know whether or not that person might enjoy a long walk in the rain” (Ackerman, F '91).
Finally, outcomes oriented advance directives better empower representative agents and proxies, who find it both easier to extrapolate treatment choices from the perspective of health care outcomes than when preoccupied with the immediate burdens and benefits of the treatment weighed alone (Pearlman, RA '94).
Applying the Outcomes Solution
In recognition of findings such as these, some researchers attempted to design basic "outcomes-oriented" advance directives. However, their efforts were severly hampered by the same problems that plagued most existing advance directives: The documents remained too limited in scope and content, were too imprecise, too confusing, etc. In addition, their early efforts also poorly identified choice "thresholds" -- typically eliciting only vague responses about "values" or relative "importance" as related to uncertain outcomes, instead of asking the essential questions about continuing or stopping life-sustaining treatments in the face of expected end results.
Building upon these early efforts, Lifecare researchers more faithfully established threshold standards, and more widely and comprehensively explored the full range of patient choices, desires and needs. Following this, essential medical, legal, and statutory content was then embedded and interwoven to produce valid and content-compliant advance directives.
Confirming the Solution Through Direct Research
In follow-up research, the results were remarkable. A properly constructed and enhanced outcomes-oriented advance directive out-performed all other advance directives styles (including the most popular documents available today) in direct comparative decision-making tests. The outcomes- oriented advance directive inspired significantly greater confidence in all participants (patients, agents, physicians, etc), but it also led to more frequent recognition and refusal of highly burdensome and futile treatments, and to significantly greater decision-making concurrence (i.e., making the same treatment choice) between individuals and their agents/proxies. (Complete research reports, data tables, and relevant statistical analyses can be found in the text, "Strengthening Advance Directives", available through the Professional Resources section of this website.)
Using the findings from our painstakingly extensive literature review, a tentative advance directive document, focused on outcomes, was then created and submitted to experts in the field of advance planning. These experts included: 1) medical professionals (physicians, nurses, and others including geriatricians, intensivists, palliative care and hospice practitioners, emergency medicine practitioners, first-repsonders, etc); 2) elder law attorneys; 3) medico-legal administrators; 3) bioethicists; 3) medical sociologists; 4) clergy (from numerous denominations); etc.
Refinements in content were made on advice of these many specialists and professionals.
Next, the Lifecare directive was reviewed by 507 research participants (including many members of the general public, not just professionals) for measures of completeness, accuracy, ease of use, readability, etc. At this juncture:
1. 91.0% indicated the directive included all key issues necessary to address.
2. 81.8% wanted to use it as their own directive (with or without additional changes).
3. 74.9% indicated that this directive would make medical-choice discussions easier.
4. 77.2% responded that this directive should be encouraged for general use.
The study participants and focus groups provided considerable additional feedback, which was then incorporated.
The newly enhanced version was then reviewed by an additional 180 research participants, and final improvements were made in the document. The following data was obtained from these participants:
1. 95.9% (vs. 91.0%) indicated the directive included all key issues necessary to address.
2. 96.3% (vs. 81.8%) wanted to use it as their own directive.
3. 89.3% (vs. 74.9%) indicated that this directive would make medical choice discussions easier; and,
4. 95.5% (vs. 77.2%) felt that this directive should be encouraged for general use.
Finally, an additional 400 participants were recruited for direct comparative testing of the new advance directive with other popular/commonly used documents.
Three comparative advance directives were selected (a medical-check-list format document; a popular wishes-based narrative document; and, a state-standard document with content common to most states). A control group (no directive assigned) was also included.
To operationalize the process, all participants consisted of couples who identified themselves as primary decision-makers for each other. Each was randomly assigned to a group -- i.e., to a given advance directive version or to no directive at all. Those with advance directives assigned completed them jointly -- the "patient" completing the document for themselves, and the "proxy" copying out all the patient's choices and instructions on their own copy of the same assigned directive. Discussion was, of course, encouraged. The "control" group utilized discussion only, as best they could independently contrive it.
Confidence measures were then obtained, regarding participants' confidence that the directive used (or a discussion only) was adequate, that the "patient's" wishes would be honored, that the proxy would understand and honor wishes, and that the process was sufficient for physicians to honor the wishes expressed/represented, etc.
After this process was completed, the "patients" and "proxies" were entirely separated from one another. Then, all were presented with eight medical decision-making scenarios.
Once treatment decisions were made (the "patients" for themselves, and the "proxies" in behalf of the "patient"), and while still separated, the same confidence measures were gain obtained (in light of the actual decision-making experience). Then the pairs were brought back together.
On ALL measures, the Lifecare directive either met or exceeded the performance of every other document tested. Further, among those with "some or any college education" it far out performed the other documents used, providing: greater (or equal, in the case of the check-list format) actual decision-making accuracy; greater confidence in wishes being known, followed by the proxy, and followed by physicians; and, much greater rates of refusal of known burdensome medical treatments.
From these findings, it has been determined that the Lifecare Advance Directive is a superior comprehensive advance planning document, worthy for use by the general public.
The final step was to create a "scoring" mechanism for each state's directive. In this way, individuals making choices leaving them at high risk of burdensome treatment and protracted suffering (i.e., falling more than 1 full standard deviation from the overall scoring norm) can be quickly identified and provided with any additional information needed or desired. We hope this will be useful in establishing far more effective advance directive education programs in the future.
All this information and much more can be found in the 355-page text "Strengthening Advance Directives" which can be obtained in the "Books" section of the website shopping cart. With more than 900 key footnotes, it is an invaluable resource for those who wish to read more on this important topic.
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