In this, Part 3 of my review of Professor Thaddeus Pope’s paper about the legal issues surrounding unwanted life-sustaining medical treatment (LSMT), I focus on problems with advance directives (ADs).
Twenty years ago, I recognized the inadequacy of the descriptions and choices allowed by AD forms provided in state legislation. A client brought to my attention a decision chart developed by physicians at Harvard Medical School. I liked it, used it, and encouraged others to do so as a supplement to their own ADs. More recently, other decision aids have been developed at Harvard and elsewhere to make decisions about end-of-life medical care more explicit.
Although most people do not use even their state-approved AD forms, those who do operate under the false assumption that they are limited to those forms. They are not. The Supreme Court has made clear that we have both a common law and constitutional right to determine the extent of our own medical treatment. The state forms can be supplemented, though many physicians will be uninterested or reluctant to read such supplements. Some may think that they are not bound by the decisions explained in supplements. This is one of the reasons all of us must have a competent, assertive surrogate to advocate for the decisions we express in ADs and their supplements.
Professor Pope points out that as many as half of physicians seem unfamiliar with the structure of ADs in use in their state and misunderstand or are confused by them. Others, of course, perhaps 20% in some research, would ignore patient instructions and physician orders about CPR found even in a DNR order!
The usual advice is to talk with your physician about your medical decisions. Yet, in my experience, it is nearly impossible to do so in any meaningful way: It is unlikely that my primary care physician will be around when I lack mental capacity and am near the end of life–one point that my AD would be triggered. Of course, it will be triggered at any time I lack mental capacity, whether near the end of life or earlier.
One almost unbelievable outcome referenced by Professor Pope comes from a study done in 34 states, with more than 700 physicians. The level at which ADs are misunderstood by medical professionals is staggering–
78% of clinicians misinterpreted advance directives, thinking that the presence of an advance directive automatically means that the patient is DNR.
About the same number of physicians “assumed that patients with a DNR order means ‘do not treat.’ In reality, DNR refers only to CPR and not to other medical interventions.”
When the validity of an AD is legitimately in question, it is both permissible and ethical to ignore the presumably invalid AD. Likewise, if it is unclear whether an AD covers the current medical situation, a physician should seek clarification from the patient’s surrogate decision-maker, always seeking to carry out the wishes of the patient, not the doctor’s or surrogate’s preference.
Another common problem with ADs is that they are vague, using phrases like “heroic measures” or “extraordinary treatment.”
Still another complication is that often an AD describes a triggering event, such as “terminal condition,” “irreversible condition,” or permanent loss of consciousness, and the physician can’t determine if that circumstance has occurred. Then, the physician is required to act using “reasonable medical standards,” which could involve consulting other physicians or a bioethics committee for the institution where care is being provided.
In other cases, doctors are justified in ignoring an AD when the patient’s medical condition is not covered in the AD; i.e., it is different from the the ones contemplated by the patient when the AD was made. Further, when the life-threatening condition, such as cardiac arrest, is caused by the medical procedure itself, physicians often override a DNR order or AD.
Professor Pope suggests that generally “clinicians do not honor treatment refusals linked to suicide attempts” because of the possibility that the attempt is linked to a mental illness that may have impaired the patient’s judgment.
If a patient has more than one surrogate, usually when two or more family members are present and the patient has failed to name an individual surrogate, there may be conflicting decisions by the surrogates. In such situations, a physician is justified in waiting for consensus, or until clarification about the patient’s wishes has been received.
Sometimes, on the other hand, the conflict results from one surrogate’s unwillingness to follow the clear directions of the patient. If the authority of a supposed surrogate is in question, this too may cause the physician to balk at providing certain treatments or withdrawing treatments. If the surrogate is not acting in accord with the clear directions of the patient, or the surrogate is inserting his or her own values into a treatment decision, the physician has grounds to ignore the surrogate. Professor Pope explains–
Surrogates are agents of the patient (principal). They must act in accordance with the patient’s wishes or, where those are unknown, in accordance with the patient’s best interests.
There are also times when a clinician may override a decision of a patient because the patient lacks decision-making capacity. At other times, in considering a decision about LSMT, whether made in an AD or contemporaneously with providing LSMT, the clinician has reason to believe the patient’s decision is not fully informed enough to satisfy the criterion of “informed consent” because it “does not reflect [the patient’s] values and preferences” that have been clearly stated previously.
It is important for a patient or surrogate (as well as clinical personnel) to make sure ADs are actually in the patient’s official record; otherwise, a patient’s decision about LSMT may not be honored.
Three other causes of failing to honor a patient’s end-of-life treatment decisions involve the training and attitude of the medical provider. Physicians are trained to do what they believe is in the patient’s best interests. This goal may conflict with what the patient wants, and the clinician’s paternalism may prevail.
Sometimes a patient’s decisions regarding end-of-life care run counter to the physician’s moral views, usually leading to LSMT that the patient does not want. In other cases, unwanted treatment is provided because it is a financial benefit to the physician or the medical facility where care is provided. Professor Pope notes “Health care providers are routinely charged with fraudulently administering unwanted treatment in order to maximize revenues.”
In Part 4, I will discuss Professor Pope’s research on why clinicians perceive that ignoring a patient’s preferences about end-of-life care carries little risk for them.
