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Case example
Ms. Tina Cartrette is a 28-year-old woman with severe intellectual disability (also known as cognitive disability or mental retardation). Ms. Cartrette also has cerebral palsy and a seizure disorder. She has been a resident of a long-term care facility since she was 5 years old, and has never been able to sit up, walk, talk, dress, or bathe herself. Ms. Cartrette is fed through a tube inserted directly into her stomach. She has been hospitalized five times in the past year for urinary tract infections, which, in her case, cause high fever and seizures.
When Ms. Cartrette reached the age of 18, she was declared legally incompetent, and her mother, Ms. Diane Arnder, was appointed to serve as her legal guardian. Ms. Arnder lives in a distant city; she calls the residential care facility regularly to check on Ms. Cartrette and visits her daughter about twice a year.
Twelve days ago, Ms. Cartrette was hospitalized once again with a high fever and uncontrolled seizures. She received IV antibiotics and medications to control her seizures, but the medications led to respiratory depression, and, with Ms. Arnder’s consent, Ms. Cartrette was intubated, placed on a mechanical ventilator, and transferred to the Medical Intensive Care Unit (MICU). She remains in the MICU on ventilator support. Dr. Friedland, Ms. Cartrette’s attending physician, has discussed her treatment options with Ms. Arnder. Dr. Friedland told Ms. Arnder that continuing ventilator support could make Ms. Cartrette permanently ventilator-dependent, but removal of the ventilator would probably result in her death. After discussions with her husband and her pastor, Ms. Arnder has requested that the ventilator be withdrawn, explaining that she does not want to see her daughter suffer any longer. Most of the members of Ms. Cartrette’s treatment team (including Dr. Friedland, several nurses, and a social worker) are willing to honor this request, but one of the residents disagrees. He points out that Ms. Cartrette is neither terminally ill nor unconscious, and he asserts that she should not simply be allowed to die. How should the team proceed?1
The moral issue, and the available options
As noted in Chapter 8, a patient’s lack of decision-making capacity is a generally recognized exception to the legal and moral duty to obtain the patient’s informed consent to medical treatment. If a patient is unable to make a treatment decision, health care professionals obviously cannot rely on such a decision to guide their actions. How, then, should professionals determine what care to provide for these patients? Even though patients who lack decision-making capacity cannot make choices at a particular time, they may have expressed preferences about medical treatment in the past, and they may regain the ability to make treatment choices in the future. How, if at all, should a person’s past preferences and the prospect of future choices guide his or her treatment in the present? Patients without decision-making capacity cannot express or actively pursue their interests, but they still have important interests. How, and to what extent, should health care professionals identify and promote those interests? These questions highlight the moral significance of making treatment decisions for incapacitated patients. Several potential options for addressing these situations can be identified and evaluated, as follows:
Option 1: no consent, no treatment!
A simple, but generally unsatisfactory option would be to conclude that, because no informed consent can be obtained from the patient, no treatment can be provided. This option would provide maximal respect for the patient’s physical privacy, understood as freedom from invasion of a person’s body or personal space without that person’s permission, but such respect for privacy would come at a very high price. The price, failure to provide medical treatments that can prevent grave harm to the person and can greatly enhance the person’s welfare, seems disproportionately high in comparison to the value of protecting personal privacy, whenever the need for treatment is unambiguous.
Option 2: wait for the patient to regain decision-making capacity!
Many different conditions (e.g., delirium, intoxication, and depression) can interfere with a person’s ability to make decisions, and the loss of decision-making capacity may be temporary. When this is the case, and when medical treatment can be delayed without causing significant harm, waiting until the patient regains capacity and then securing the patient’s informed consent to a proposed treatment is a morally attractive solution. This option enables the health care provider to honor the patient’s autonomous choice and provide beneficial treatment. This option is available, however, only when loss of decision-making capacity is temporary. If loss of capacity is permanent, waiting for a patient to regain capacity will be endless, and this option will be identical to option 1 above. If the loss of capacity is not permanent but of long duration, and treatment is urgently needed, delay will result in serious harm to the patient.
Option 3: let the physician decide!
A third option would be to allow physicians to make treatment decisions on behalf of their patients who lack decision-making capacity. Several good reasons can be offered in support of this option. Their training and experience enables physicians to identify and evaluate the likely outcomes of treatment alternatives, and physicians pledge to act for the benefit of their patients. Still other reasons, however, count against giving this authority to physicians. Very often, the physician caring for a patient with a serious injury or illness that has rendered the patient incapable of making treatment choices is a hospitalist or other specialist who has never met the patient before. In these circumstances, the physician will have no prior knowledge of the patient’s values, preferences, or goals, and so will not be able to base treatment decisions on that information. Even if the physician did know the patient before he or she lost decision-making capacity, the physician’s values and interests may be significantly different from those of the patient. The physician, for example, may place a high priority on life prolongation, but the patient may prefer to forgo life-prolonging treatment in order to ease the burden of caregiving on her family. These reasons suggest that reliance on physicians may not be the best option for making treatment decisions when patients lack decision-making capacity.
Option 4: identify a surrogate decision-maker!
This option proposes that we identify and authorize a third party, called a surrogate decision-maker, to make treatment decisions on behalf of incapacitated patients. Like patients who retain decision-making capacity, this surrogate decision-maker can confer with the patient’s physician or other health care professionals about the patient’s condition and treatment alternatives, and can use that essential information to guide his or her treatment decision. Unlike most physicians, who do not have detailed knowledge of their patients’ wishes, goals, and values, the surrogate decision-maker can, at least ideally, be someone who knows the patient very well and who is willing and able to make treatment decisions based on that knowledge of the patient. This fourth option appears to be most likely both to honor the patient’s own preferences and to achieve the best treatment outcome. Choice of this option raises an important further question: Who should serve as surrogate decision-makers?
Who should serve as surrogate decision-makers?
I suggested above that an optimal surrogate decision-maker for an incapacitated patient is someone who knows the patient well, who is willing to take on this responsibility, and who will make decisions based on knowledge about the patient’s present situation and about the patient’s values and preferences. Who is, in fact, most likely to have all of these characteristics? Early commentators concluded that the patient’s next of kin, or another close family member, is generally the most appropriate surrogate decision-maker.2 This conclusion was based on the belief that a close family member is best situated to know the patient well and is most likely to care for and about the patient. Choosing a family member as the patient’s surrogate also respects family privacy and shared responsibility within the family unit. Not all patients have close family members, however, and the law has long provided mechanisms for appointment of legal guardians to make decisions on behalf of patients judged incompetent in a court proceeding. Over the past two decades, many jurisdictions have also enacted laws enabling persons to designate a person of their own choice to serve as their surrogate decision-maker, or “health care agent,” should they lose decision-making capacity. Patients can make this designation by means of a document called a “health care power of attorney.” This document is discussed in more detail in Chapter 15, “Advance care planning and advance directives.”
For many years, physicians in the United States had some discretion in choosing which family member to recognize as surrogate decision-maker. In recent years, however, most US states have enacted statutes that create a hierarchical list of persons authorized to serve as surrogate decision-makers for patients who lack decision-making capacity.3 In 2007, for example, the state of North Carolina revised its informed consent statute by adding the following hierarchy of surrogates:
1. a health care agent appointed by the patient via a health care power of attorney
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