In a recent essay, I argued that changes in technology and culture have precipitated fears among some elderly that their deaths will "come too slowly and too late." They not only fear dying, as we all do, they also fear living too long.
Although fear at the thought of our dying may feel unavoidable, it's a bad basis from which to make end-of-life decisions. It tends towards two extreme mindsets, either "treat-me-at-all-costs" or "give-me-a-hasty-exit". These mindsets correspond to the two paradigmatic problems in end-of-life care: overtreatment and premature refusal.
Advance directives such as living wills were introduced forty years ago to deal with the problem of overtreatment. The idea was originally proposed by the Euthanasia Society of America (ESA). A lawyer for the ESA, Luis Kutner, published an article in 1969 proposing the development of a new type of document that he referred to as a "living will" [1]. He argued that since patients who are in possession of their cognitive faculties have the right to refuse medical treatments, this implies that they also have a right to designate in advance the refusal of future treatments. This refusal would be codified on a document formally revoking consent to treatment. The revocation would limit physicians from taking further actions of certain kinds on behalf of sustaining patients' lives.
Kutner proposed that the document be conceived along the lines of a revocable or conditional trust: the patient's body is the property held in trust (or the res ); the patient is the grantor and beneficiary; and the doctor/hospital is the trustee. Doctors exercise guardianship over a patient's body by virtue of the patient's advanced consent to treatment. The patient's decision to refuse treatment limits what authority health care providers (the trustees) may exercise over his or her body.
The first living will (LW) statute in the US was passed in California in 1976. Over the next decade LW laws were passed in many other states. In 1990, Congress passed the Federal Patient Self-Determination Act that required all healthcare facilities to offer patients the option of completing a LW (or other type of advance directive [AD]).
Unfortunately, the problem of overtreatment still exists. When doctors lack information on patient preferences, and fearing malpractice concerns, they tend to err on the side of administering more treatments than necessary or even appropriate. This can lead to physical suffering for patients, anxiety and distress for loved-ones, and discouragement of other providers such as nurses. LWs seem to promise relief from the problem of overly aggressive medical care being imposed against our wishes.
And yet LWs have one damning weakness. They lack the specificity needed to make the best possible in-the-moment-of-need medical decisions at a vulnerable stage of life. They direct that in the event of a serious and irreversible disability, life should not be prolonged. Most formats use the general statement (or something to the effect) "remove or withhold all life-sustaining medical treatments." Some formats mention in particular cardio pulmonary resuscitation (CPR) and artificially administered food and water.
This generality poses the danger of ambiguous or premature refusal. A single short document cannot take into consideration all the possible health contingencies that a person might face in the future . Family members and healthcare providers are thus left with the burden of interpreting the document in relation to situations never foreseen by the patient.
Moreover, according to Catholic teaching, the refusal of life support is only morally licit when the treatment options are either futile (i.e., do not offer reasonable hope of benefit) or in the judgment of the patient are excessively burdensome. Futile or burdensome forms of care are called "extraordinary" (or "disproportionate") treatments. If a life-sustaining treatment offers a reasonable hope of benefit and is not excessively burdensome, i.e., it is "proportionate" to its ends, it is called "ordinary". Catholic moral teaching on end-of-life care is very clear: we have a moral obligation to accept ordinary treatments [2]. Most LWs make no reference to the categories of "extraordinary" and "ordinary". But the advanced decision to refuse life-sustaining care would only be morally licit if we had moral certitude in advance that the treatment we elect to forgo would be an "extraordinary" treatment in the future. In some cases we may have this knowledge. But in many if not most instances the knowledge necessary to securing such moral certitude is opaque to us.
Further, LWs provide an ambiguous expression of intention. They rarely distinguish between a person's intent to forego treatment for the sake of being free from futile and/or burdensome procedures and forgoing treatment for the sake of dying (i.e., with a suicidal intent).
Finally, because of their generality, LWs are subject to wide interpretation. For example, does "remove or withhold all life-sustaining treatments" mean that doctors should withhold antibiotics if the person begins suffering from a secondary infection? Some formats specify that doctors are not to intubate (insert a tube into the trachea or esophagus), or not to sustain life on a ventilator. But what if a patient could recover if doctors induced a temporary coma and put a patient on a ventilator for a week? What if intubation was necessary for an interim procedure? Should doctors refuse? What should families do in this case? What effective direction does the document give?
How can persons achieve the benefits that LWs promise (i.e., of avoiding paternalistic and overly aggressive medical care) without making themselves vulnerable to the problems of ambiguous or premature refusal?
My recommendation is for persons over the age of 40 to appoint and authorize someone they trust to make medical decisions on their behalf that are consistent with good morals. They can do this by executing a legal document called a healthcare durable power of attorney (HCPA) .
Their proxy (called an "agent") is authorized to make decisions only in the event of temporary or permanent incapacitation. The agent is authorized to request and review medical records, consult with the patient's healthcare providers, order the administration, withholding or withdrawal of life-sustaining procedures, and make all other relevant healthcare decisions.
Using a HCPA avoids unrealistic predictions about the future of our health. It places critical decision-making power in the hands of someone we trust, who know us and who has our interests in mind, and who can prudently reflect on the possible contingencies in light of our core principles.
My colleague, William E. May, offers helpful advice on how to choose a health care agent in his text, Catholic Bioethics and the Gift of Human Life [3]. For more information on executing a HCPA, and to obtain a sample document, see the Patients Rights Council [4].