Davis - Ethics at the end of life : new issues and arguments

Medical patients, under ordinary circumstances, are free to make their own choices about how to be treated (or not to be treated). A cancer patient, for example, is free either to accept or to refuse life-extending chemotherapy, based, for example, on their own view of how to weigh length of life versus quality of life. Or consider the following case:

Ozzie is diagnosed with a disease that is easily cured with a blood transfusion, but fatal without a transfusion. Ozzie is a devout Jehovahs Witness, and thus believes that accepting blood transfusions is contrary to Gods commands; he therefore refuses the transfusion, knowing full well that he will die.

The widely accepted view is that Ozzie ought to be allowed to refuse the transfusion, regardless of whether others view that decision as wrongheaded or seriously harmful to Ozzie; the law in the United States and most other developed nations follows suit, giving Ozzie the legal right to refuse treatment.

When patients are unable to make their own choices, however (due, e.g., to dementia, delirium, unconsciousness, or mental illness), someone else must make medical decisions on their behalf. In those cases, various questions arise about how such decisions ought to be made. In particular, we want to know who should make those decisionswho should be the surrogate decision-makeras well as how surrogates should go about making the relevant decisionsthat is, on which criteria they should base their decisions.

Standard practice has it that patients, if they wish, may designate a particular person to be their surrogate should they become unable to make decisions (such a person is sometimes called a proxy or agent). The official legal designation or document is usually called a medical power of attorney or a power of attorney for health care. If such a designation has not been made, then ones next of kin becomes the surrogate; individual states have particular orderings for who is to be the surrogatethe top three are usually (1) spouse, (2) parents, and (3) adult children.

But even if it is clear who is or ought to be the surrogate decision-maker, there is still the question of how that person ought to go about making the often momentous, life-and-death decisions he or she will be faced with. Presumably, the surrogate should not be allowed to make any decision he or she wantsbut how should the surrogate decide? For example, should the surrogates decision be based purely on whats in the patients best intereststhat is, what best promotes the patients welfare or well-being? That might mean, for example, giving Ozzie the transfusion if he is unable to make his own decisionafter all, it is plausible that continuing to live would be in Ozzies best interests. Or should the decision be based on the patients desires and values , even when they conflict with the patients welfare? Acting in accordance with Ozzies values would mean not giving him the transfusion, and allowing him to die. According to the standard view, surrogates should try to glean what the patient would want if she were competent, and act accordingly (e.g., via instructions for treatment that the patient provided prior to becoming incompetenteither verbally or documented in a living willor based on an inference from what the surrogate knows of the persons values, the so-called substituted judgment principle). But is that standard view correct, or does it suffer from philosophical or ethical problems? If the standard view is problematic, then what is the correct principle for surrogate decision-making? These are some of the questions that will be addressed in this chapter.

A good place to begin answering these questions is with the moral principle of respect for autonomy and its application in the medical domain. Respect for the patients autonomy, or self-determination, is a guiding principle in medical ethics. According to widely accepted views, patients have a strong prima facie right to make their own medical decisions. That right, however, is conditional upon the patients decision-making competence (roughly, having a certain degree of understanding and rationality), in the following way: a decision made while incompetent is considered to be non-autonomous , and thus the principle of respect for autonomy does not require us to honor such a choice. At the same time, it is still considered possible to respect or violate the autonomy of some incompetent medical patientsspecifically, those who have been competent in the past . (Those who have never been competent, on the other hand, have no autonomy to either respect or violatein that case, the widely accepted view is that such patients should be treated based on what best promotes their well-being.) There is some controversy, however, about how we respect the autonomy of the incompetent, and thus how, on the prevailing view, surrogate decision-makers ought to decide for the incompetent. There is debate, that is, about the theory that correctly explains how to respect incompetent patients autonomy. And theory matters, because different theories will license different actionsthe decision that is made for a particular incompetent patient may hinge on which theoretical framework is applied to the case. At no time is this more important than at the end of life, when decisions about forgoing and discontinuing life-sustaining treatment are prevalent.