Mark Miller, C.Ss.R., Ph.D.
Recently I was admitted to a hospital for a minor bit of day surgery. In the midst of the questions that a young clerk asked me in preparation for admittance, I was handed an ‘Informed Consent’ form. As a specialist in medical ethics, I was well aware of the issues around informed consent for any patient receiving medical care. I was not, however, prepared for the low-key paperwork approach to which this critical issue was reduced.
‘Informed consent’ is one of the foundations of modern health care. Not too many years ago medical decisions were assumed to be the prerogative of the physician or surgeon. After all, the doctor was supposed to know what medical treatment was needed by the patient and was assumed therefore to be able to make the proper call, as it were. Thirty years ago, a large majority of doctors, for example, would not tell a patient that he or she had terminal cancer. This was a form of paternalism—the doctor knows best—which was considered acceptable at the time.
However, as medical treatment progressed, particularly through the advent of new technology and drugs, physicians found themselves able to provide many kinds of treatment, some of which would prove only marginally beneficial to a patient. Furthermore, there were times, usually after a patient succumbed despite a rigorous course of treatments, when surviving family members began to wonder if some, or all, of the treatment should have been done at all. Even some patients, while being treated, began to question what was being done to them.
A series of court challenges in the United States and Canada succeeded in re-ordering the physician-patient relationship. Patients who were dying, for example, of lung cancer, found themselves hooked up to ventilators which did their breathing for them. When the discomfort of the ventilator was such that the patient asked for it to be stopped, most physicians refused on the grounds that they would be charged with murder for turning off the machine that kept the patient alive. It was not uncommon then for such patients to feel that they were trapped by the very technology that was supposed to help them but could do no more than prolong their dying and, often, their agony.
To make a long story short, such patients affirmed the right for all of us to refuse any medical treatment at any time, provided we are competent to do so. (That is a legal right. When is the right time to do such a thing is a moral issue.) If a physician or nurse treats a person against his or her will, that health care worker is guilty of assault.
Since most of us go to doctors when we are in need, we might think it rather odd to refuse treatment. Nonetheless, Jehovah’s Witnesses believe that a blood transfusion will keep them from entering heaven and hence refuse what the rest of us take for granted, even in life-threatening situations. The law respects this religious freedom and choice. And all of us may, at one time or another, find that we are faced with refusing a treatment that is either inappropriate or too burdensome, often at the end of our lives.
When individuals are dying and the dying cannot be reversed, treatment decisions become less what medicine can do than what medical care ought to do. Highly invasive surgeries or drug regimens, or even routine uses of ventilators, nutrition and hydration tubes, or antibiotics may well do nothing more than make a person’s dying process an excruciating ordeal. The spiritual process of dying may itself be invaded by a manhandling of a body that is dying anyway. Palliative care, or comfort care, for the dying acknowledges this need to make decisions about allowing a person to die without certain invasive treatments.
The response of the world of medicine to the rights of patients to make their own treatment decisions has been to establish a routine of ensuring informed consent for treatment. Since consent is essential for the doctor to begin treatment (except in emergencies where an unconscious or traumatized patient is assumed to want treatment), part of the admittance protocol is a document asking for written or signed consent to any procedure. This document is needed for minor, routine investigations (from day surgery to the injection of a dye for tests) or for serious, highly invasive treatments (such as cancer surgery or transplants).
In practice, there is no question that the more serious the treatment option, the more carefully a physician or surgeon must explain the procedure to the patient. For, ultimately, it is not just the treatment (which the doctor knows), but the consequences of the treatment (which the patient must live with) which are essential to weighing the benefits and the burdens incurred in accepting the proposed treatment.
What most of us do not realize is that every medical intervention has risks and potentially dire consequences. Surgery, for example, carries unknown, but statistically relevant risks (both debilitating and mortal) from reactions to the anaesthesia, to multiple organ failure, to infection, to human error. Fortunately, modern surgery has been developed to the point where these risks are often tiny, like one in 10,000. However, if you are the one…it can be pretty devastating.
Patients are thus challenged today to take responsibility for what is done to them. Obviously, most of us cannot assess the technical need for or aspects of a particular surgery or treatment. We do depend upon the doctor’s explanation and advice. However, we can ask questions until we do in fact understand what is being proposed and why. That is the key to informed consent. We need to get all the information that will assure us that this is the best option. Of course, one can simply rely on the doctor. But that is to turn over our responsibility somewhat unfairly to the specialist. Morally, we should seek to be comfortable (i.e., mentally prepared) with any proposed course of treatment for two reasons: first, being informed usually brings the patient on side in the treatment (and attitude is often a great part of the battle); and, second, the doctor works with the patient instead of paternalistically for the patient in seeking the best course of action.
Often times there do not seem to be many alternatives to a particular treatment for an ailment. Either the doctor intervenes or the sufferer puts up with the consequences. But there are also consequences to the doctor’s intervention. And there are sometimes unexplored alternatives unless the right questions are asked. The notion of informed consent, while it is sometimes used as little more than a legal protection for the medical personnel, is really an invitation for the patient to be involved in his or her care. It is a challenge to move from being a passive recipient to being a cooperating chooser.
It also means that we have to be realistic about letting go of the myth of all-knowing medicine. To acknowledge the risks—which is what doctors always must do—is to recognize the limitations of medicine, the mortality of the human being, and the unknown factors or potential flaws that may accompany any human choice.
Giving a truly ‘informed consent’ may also help believers turn more understandingly to prayer—for who can know what the right decision is in the mystery of one’s future? Nonetheless, together with the doctors (the informers), we make the best choice we can, for we cannot be exempt from the responsibility of making decisions.