“I don’t want to be treated”, Alice Nuvo said in the scenario 6. She is a woman who was diagnosed with pancreatic cancer and that has a very low percentage of survival for another year, even with the best treatment. “Just give me something to control the pain and let me go home”- she said.
In this scenario we will talk about autonomy, which is typically defined as “self-determination” and refers to the ability of competent individuals to make decisions over their own lives. In order for autonomy to be meaningful, a competent individual’s decisions should be respected even when those decisions conflict with what others believe to be reasonable.
Over the last few decades, respect for autonomy has come to be recognized as a fundamental principle of Bioethics. In general, a patient’s autonomy should be respected even if the patient decides not to follow a doctor’s or health care team’s advice. Respect for autonomy has helped to redefine the physician-patient relationship as patients have become more active participants in making health care decisions. Traditionally, the physician played a more “paternalistic” role in that he/she would largely decide for the patient what the best course of action would be. But now days the patient should not be coerced into making a health care decision, meaning that the patient should not be forced against his/her wishes into making a choice. The patient’s decision must be voluntary.
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The basic starting point for ethical analysis in health care, is the encounter between the patient and the health care professional. This relationship is shaped by the goals of that encounter, both the goals that health care professional has and the goals that the patient has. The goals of medicine, which guide the goals of all health care professionals, are: to prevent, cure, slow down or arrest the development of an illness; to stabilize a satisfactory condition; or to relieve the distressing symptoms of illness. It is important to note that these goals are more than simply seeking a cure, and are certainly not focused on seeking to preserve or prolong life at all costs. It is also important to recognize that it is not necessarily possible to meet all of these goals all of the time. The other person in the encounter is the patient, who also has her or his own goals, both health and broader goals in life, as well as values and preferences. Each person forms her or his own conception of what is a good life. This means each person has the freedom to act to put the choices that arise from that conception into effect. Everyone else must respect the space a person needs in which to do this. This is the basis of autonomy. However, autonomy is not an end in itself, but a means whereby a person takes responsibility for her or his own life. In health care, autonomy can be expressed in this way: the patient is the source of the health care professional’s right to treat her or him. More specifically the patient has the right to choose to accept or refuse treatment that is offered or choose between different options. The important thing to remember is that the patient will consider her or his goals in life, will act upon her or his values and preferences as well as the medical facts in making such a decision, and all of these must be respected. In many situations the patient’s decision is not questioned. Decisions have been challenged when the choice does not seem reasonable to the health care professionals or others, generally it is challenged by questioning the competence of the patient, which we are not going to question in this particular case of Alice Nuvo.
A patient’s decision to accept or refuse life-sustaining treatment needs to come out of a reflection on the usefulness and reasonableness of such treatment. Treatment has to be reasonable, this means that it has to be effective and that the benefits need to be in proportion to the burden for the patient of undergoing the treatment. There are two aspects of the refusal of life-sustaining treatment. The goals of medicine establish the purposes of treatment. It is not always possible to meet all of the goals, and at times may only be possible to relieve the distressing symptoms of illness. It is not a goal of medicine to prolong the dying process. The second aspect of any decision to forgo treatment is the patient’s right to choose whether or not to accept such treatment, even if the treatment has a reasonable chance of being effective.
A person who is terminally ill is someone for whom there is no further curative treatment, like Alice Nuvo has no further CURATIVE treatment. Therefore, the only goal that it may be possible to meet is that of relieving symptoms. However, the point at which treatment is ceased and the decision made to forgo resuscitation varies with each patient. One person may wish to remain alive long enough to see a grandchild married. Another person may wish to spend the last weeks of life with close family members without suffering the debilitating side effects of chemotherapy. “I’d rather spend the remaining time with my husband and two daughters then die in the peace, instead of puking up my guts in some hospital” – Alice Nuvo said.
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After all this being said, the fact that refusal of any life-sustaining treatment is not to be equated with a slow, passive suicide, the person is not choosing to die. Rather she or he is choosing other goals, in line with her or his conception of a good life. In each case death is accepted as a foreseen, possible side effect of such a choice, but it is not directly chosen.
Decisions regarding life-sustaining treatment are complex. Such decisions made by patients are based on a balancing of the benefits and burden of any such treatment and will include the goals, values and preferences that the patient has.
But sometimes doctor thinks patient is making the wrong decision, how far should he go to try to persuade her or him to accept the treatment? Patient autonomy does not allow the health care provider to make the decision for the patient, but it does allow providers to educate the patient. It requires of health care providers that they respect patients by providing accurate and complete information that gives patient understanding of positive and negative sides of treatment.
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