AD: Advance Directive
When is a surrogate decision-maker needed?
Patients who are at risk of losing decision-making capacity include hospitalized patients, patients with some types of psychiatric illness (such as depression and schizophrenia) and cognitive impairment (such as dementia, delirium, and strokes), residents of nursing homes or assisted living facilities, and patients who are approaching the end of life. However, merely being in one of these categories does not automatically indicate that an individual is incapable of making his/her own decisions. An evaluation of a patient’s decision-making capacity (discussed later in this chapter) can determine whether a patient can make a specific decision. Patients with decision-making capacity sometimes voluntarily defer decision-making to loved ones. This is an ethically and legally acceptable action. The literature has identified that patients from certain ethnic and immigrant groups and older patients are more apt to delegate decision-making.
What are the limits of surrogate decision-making?
Regional differences exist with regard to the decisions that surrogates are allowed to make. In California, surrogates cannot make decisions about whether or not a patient receives electro-convulsive therapy. In North Dakota, surrogates cannot make decisions about sterilization or abortion. In New York State, surrogates cannot make decisions about stopping artificial nutrition and hydration unless there is “clear and convincing evidence” of a patient’s preferences.3 States are variable regarding the descriptions of the abilities of surrogate decision makers; these specifications can be found in the state codes and laws, often searchable online. Clinicians also can contact the risk manager of their facility to obtain guidance on the specifics of each state’s surrogate decision-maker statutes.
The Case – Part 2
Mrs. Smith’s children understand the need for transfer of her care to an intensive care unit and initially agree to continue medical care with the goal of getting her back to her pre-operative state. Four days later, she is still in the intensive care unit with delirium. She is unable to participate in her own care, and she develops aspiration pneumonitis. At this time, she is supported with supplemental oxygen, however the family is told that she may need to be intubated. The orthopedic surgeon also notes purulent drainage from the wound and feels the need to re-explore the wound in the operating room. The patient’s family begins to disagree about what to do. They do not agree on whether she would want to be reintubated.
How should surrogates make decisions?
As determined by law, surrogate decision-makers can make their decisions on two bases: substituted judgment or best interests. The preferred is the substituted judgment standard, in which the surrogate makes the decision s/he believes the patient would have made. If the surrogate does not have enough familiarity with the patient’s care preferences, s/he then makes a decision using the best interests standard, that is, making the decision that is in the patient’s best interests. Both of these standards are intended to be used based on the surrogate’s knowledge and understanding of the patient’s interests, values, and preferences.
How do surrogates make decisions?
Although surrogates are expected to make decisions based on substituted judgment or best interests, there is evidence in the literature that surrogates factor their own beliefs and preferences into the medical decisions they make for loved ones. One study of experienced surrogate decision makers found that surrogates make decisions in different ways.4 Most surrogates relied, in part, on the substituted judgment standard and made decisions based on their knowledge of their loved one’s preferences or thresholds of “living versus existing;” and a small percentage (10%) of the surrogates relied on written documents, such as the patient’s living will. Another small group (18%), deferred decision-making to someone more experienced, such as a clinician family member. The third group based decisions on a sense of shared values with their loved one, which they believed obviated the need to formally discuss care preferences with their loved one. The final group was made up of 28% of surrogates who made decisions based on their own personal values and/or preferences, not necessarily those of their loved one.
There is not clear consensus amongst ethics experts as to whether it is ethically permissible for family members to incorporate their personal values and preferences into decisions they make for their loved ones. Some ethics experts have espoused the principle of relational autonomy which recognizes that the patient is not the only stakeholder in a medical decision.5
In favor of relational autonomy is evidence that patients are concerned about burdening loved ones and surrogates will often be the ones most affected by decisions made for incapacitated patients.6 For example, if Mrs. Smith’s children decide that she would not want to be reintubated and she dies as a result of this decision, they then have to live with the emotional and psychological implications of this decision. On the other hand, if they decide that she would want to be reintubated and hospital care continued, she might have a prolonged hospital course and recovery period that might have financial implications for her children. While no one would condone making these decisions on the basis of personal gain or loss, relational autonomy asks surrogates and clinicians to consider a broad interpretation of what decision is best.
The Case – Part 3
After much discussion, Mrs. Smith’s older son convinces her two daughters that she would want life-sustaining treatment continued. He argues that she opted for the hip replacement to improve her quality of life and that she was not ready to die. Her daughters assert that she would not want prolonged mechanical ventilation, and would not want to be dependent on others indefinitely, but eventually agree to a time-limited trial of continued care in the intensive care unit.
What if the surrogate isn’t making decisions that appear to be what the patient would have wanted?
When a surrogate’s decision seems to diverge from a patient’s known preferences, medical teams may find it challenging to decipher whether the decision stems from family beliefs/needs or from more dubious motives. In most cases, deviations from patient’s preferences result from surrogates’ authentic love for the patient, not malice. For example, family members may opt for more aggressive care for a terminally ill loved one than the patient would have wanted because they have not yet come to terms with their loved one’s grim prognosis. However, some family members may have ulterior motives behind their decisions. Asking family members to explain the reasons for their decisions may help. Ethics and palliative care consultants can also help evaluate these difficult situations.
If there is clear evidence of a patient’s preferences, such as in a living will, which the surrogate isn’t honoring, and the medical team doesn’t believe that the surrogate’s reasons for disregarding the patient’s preferences are acceptable, then the medical team may consider taking the case to court. At least three cases have involved discordance between the patient’s preferences in their living will and the opinions of the patient’s legal decision-maker (the cases of Dorothy Livadas in New York in 2008, Hanford Pinette in Florida in 2004, and Doris Smith in Louisiana in 2004). In all cases, the living will trumped the legal decision-maker. Prior to taking a potential case to court, the medical team and/or ethics consultants should consider whether the patient would have allowed the surrogate leeway in implementing his/her preferences and whether taking the case to court might have serious adverse effects on the surrogate(s) and/or patient’s family.
Related posts:
Informed consent and the pediatric patient
Communitarian values in medical decision-making: Native Americans
Ethical considerations in interventional pain management
Conflicts of interest in research funding
Physician conscientious objection in anesthesiology practice
Opioid therapy in addicted patients: background and perspective from the US
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