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What Are the Potential Challenges or Limitations of Advance Directives?
Despite the prevailing belief among many healthcare providers and policymakers that advance directives are a necessary part of end-of-life planning, their usefulness has become controversial in recent years. Since 1991, […]
Despite the prevailing belief among many healthcare providers and policymakers that advance directives are a necessary part of end-of-life planning, their usefulness has become controversial in recent years. Since 1991, when Congress passed the Patient Self-Determination Act, all Americans over the age of 18 have been encouraged to create an advance directive to ensure that their wishes about medical decisions are honored when they cannot speak for themselves. But in the ensuing decades, problems with the implementation of these documents have been widespread – so much so that many healthcare professionals question whether they do more harm than good.
The biggest problem with Advance Directives, critics claim, is their very nature — that is, they are prepared well in advance of the kinds of healthcare crises they are created to address. Very few people have the knowledge and foresight to anticipate every kind of medical issue they may one day face or how much or how little treatment they might want to address each one. Although these decisions may seem cut and dried on paper, in the real world they are fraught with nuance, and even the most specific directives rarely address every scenario that may arise. This ambiguity is often complicated by the wishes of the next of kin, who often don’t know or disagree about what the patient’s wishes would be under the circumstances at hand. As Dr. Sean Morrison, a palliative care physician at Mt. Sinai in New York writes in an opinion piece titled “Advance Directives/Care Planning: Clear, Simple, and Wrong”
“Preferences that patients express when they are well or in hypothetical scenarios typically do not reflect the complexity, emotion, or interpersonal elements of real-time decision making. Adaptation to physical (and cognitive) disability, desire to live to see a future event (e.g., a wedding, bar mitzvah), or fear of death when the hypothetical becomes real, all can influence real-time decision making in a way that cannot be accounted for in advance.”
Hence, healthcare providers are often left to “read between the lines” or guess what the patient might actually want.
Another factor complicating the effectiveness of advance directives is advancements in medical technology and pharmaceuticals. A person creating an advance directive today has no way of knowing what kind of life-extending or even curative measures might be available even a year from now. A decision to forgo life-sustaining treatment if they have a certain “terminal” condition such as cancer would make no sense if curative treatment for that condition is available at the time a health crisis occurs. Additionally, new treatments might become available that were unknown at the time the directive was made, leaving healthcare providers no way of knowing if those treatments are something the patient might want in real time. In these gray areas, physicians need to rely on their own judgment and that of surrogates, whose goals and values may or may not reflect those of the person who is ill.
Other barriers to effective advance care planning are mostly operational. Some examples include:
- The patient created an advance directive, but no one in the family knows where it’s kept.
- The person changed their advance directive several times but didn’t destroy the old copies, leaving providers confused about how to proceed
- The person named as the healthcare proxy objects to the instructions in the directive and/or claims the patient verbally told them they had changed their mind
- The directive is vague, ambiguous or contradictory
- “Incompetent revocation,” in which a conscious patient in a questionable mental state verbally rescinds the instructions in the directive
In all of these scenarios, the healthcare team and surrogates may be left with more questions than answers, in which case, the advance directive can do more harm than good.
Sources
“The Patient Self-Determination Act. A matter of life and death”. American Academy of Physician Assistants. https://pubmed.ncbi.nlm.nih.gov/10141946/
“Advance Directives/Care Planning: Clear, Simple, and Wrong”. Journal of Palliative Medicine. https://www.nationalacademies.org/documents/embed/link/LF2255DA3DD1C41C0A42D3BEF0989ACAECE3053A6A9B/file/D37FC8DBC5686185BFEE6670CFCB09E92EB378653DCF?noSaveAs=1
