Medical ethics, the discipline of evaluating the merits, risks and social concerns of activities in the field of medicine, often refers to four principles of healthcare ethics that should be considered when making a decision:
- Autonomy: The right of an individual to choose among various options of treatment free of coercion
- Beneficence: The obligation to provide therapy with intent of doing good for the individual
- Non-maleficence: Providing therapy without intent of causing harm. Since all interventions have risks, the basis of this is to minimize the potential risks and avoidable harms
- Social justice is the provision of therapies realizing that all resources in a society are limited and not everything is available to everyone
- Distributive justice occurs when interventions are provided as equitably as possible
Although informed consent and advance directives are often associated with hospice services and end-of-life care, ideally all adults should consider the implications if they were unable to speak for themselves, at any age and for any reason. What would they want? What do they need to know? Who would they want to speak for them? It should be discussed by all parties involved and put in writing.
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Informed Consent—The Right to Accept or Refuse Treatment
Medical ethics’ informed consent doctrine is an implementation of the ethical principle of autonomy. It confers two separate and connected rights on patients:
- The right to receive adequate information to make an intelligent choice about whether to accept or refuse a proposed treatment
- The right to refuse medical treatment for any reason, including quality of life, based on the specific individual’s judgment
To be considered legally valid, refusal of treatment must be the informed decision of the patient after they have received all information material to making such a decision.
The right to refuse treatment was legally affirmed for the first time in the 1976 case of Karen Ann Quinlan, who in her early 20s suffered irreversible anoxic brain damage resulting in a persistent vegetative state (PVS). When physicians refused to honor the wishes of the family, the New Jersey Supreme Court stated that an individual had the right to refuse treatment and supported the concept of representative decision-making when the patient is medically incompetent.
The Genesis of Advance Directives
- The 1980s case of Nancy Cruzan, a Missouri woman who fell into a PVS after an anoxic brain injury, established the standard of “clear and convincing evidence” of a patient’s wishes and served as the genesis for advance directives and the state and federal laws defining them.
- The Missouri Supreme Court, upheld by the US Supreme Court, found that a surrogate’s treatment decisions must be based on clear and convincing evidence of what the patient would have wanted.
- This also was the first time that the US Supreme Court addressed end-of-life medical decision-making in the light of the Constitution and established a right to refuse medical treatment.
Healthcare Surrogate Standards in Decision-Making
A healthcare surrogate, who has the legal authority to make decisions for an incompetent patient, may be determined in several ways:
- Patient-designated surrogate: through a power of attorney
- Judicially designated surrogate: appointed by a judge and known as a “court-appointed guardian”
- Statutorily designated surrogates: family members and other persons, in order of priority, who are authorized to make medical decisions for an incompetent patient
Since both the legal and ethical goal of informed consent is to protect patient autonomy, the surrogate must determine what the patient’s treatment wishes are, not what treatment is best for the patient in the surrogate’s opinion. The legal standard regarding the degree of certainty the surrogate should have regarding the decisions made differs from state to state.
Other standards for surrogate decision-making include:
- Subjective or “Clear and Convincing Evidence” standard: The surrogate should be virtually certain that this is what the person would have wanted
- Substituted Judgment standard: Courts have ruled that simply because a surrogate was a patient’s mother, she would know what he wanted even though he had never expressed any views on the subject
- Best Interest standard: In the absence of any clear knowledge of what the patient would have wanted, the surrogate is empowered to decide what he or she believes is in the best interests of the patient
Medical ethics is couched in legal terms, but was founded on and exists as a reasoned guide for what actions others can take when the patient is no longer able to speak for themself.