Module 7: Surrogate Decision
Upon completion of this module, the resident should be able to:
- Describe the "substituted judgment" and the "best interests" standards for surrogate decision making and identify the circumstances in which one, rather than the other, is valid.
- Describe populations of patients for whom surrogate decision making is appropriate and needed.
- Describe the generic "hierarchy" of surrogate decision makers
Module: 7 / Surrogate Decision Making
The patient is a 69-year-old male with metastatic cancer of the prostate. Early on in the course of his treatment, he told his urologist that if his cancer was not responsive to treatment and continued to advance, and if the risks and burdens of continued treatment began to outweigh its benefits, he would rather receive palliative and comfort care only. The patient is now contending with metastases of the cancer to his brain, his mentation has been adversely affected, and he no longer possesses decision making capacity. He has not recorded the wishes he expressed to his urologist in a written advance directive and his wife is now insisting that the urologist continue aggressive treatment of the patient’s cancer.
With regard to the preceding scenario, imagine that the patient is a widower and his family consists of two adult twin sons, both 32-years of age. One son insists that the patient continue to receive aggressive treatment; the other son insists that the patient’s wishes—which were never expressed to the urologist—be honored and that the patient receive palliative and comfort care only.
Surrogate decision making refers to the process of making health care decisions on behalf of patients who lack the capacity to make decisions themselves. Such patients may be
- Infants or children whose lack of decision making capacity is developmental
- Individuals who have never had – and never will have – decisional capacity due to congenital or acquired impairments
- Individuals who once had the capacity to make decisions but have lost this capacity
Module 6 on valid decision making described the three fundamental components of decisional capacity: (1) the ability to understand or comprehend information, (2) the ability to reason about that information against the background of a set of relatively stable values, and (3) the ability to communicate preferences. A patient who does not possess any one of these three fundamental components lacks decisional capacity.
It is the physician’s responsibility to determine whether the patient possesses decision making capacity. If the patient lacks decision making capacity, it is also the physician’s responsibility to identify the appropriate surrogate decision maker. The physician should do so, utilizing the following general guidelines:
- If a court has intervened in decision making on behalf of the patient by appointing a guardian for this express purpose, that court-appointed individual is the legally and morally valid decision maker.
- If the patient is an infant or child, the usual decision maker is a parent or the parents. (Module 8 focuses on decision making for pediatric and adolescent patients.)
- If the patient is an adult, s/he may have designated an individual as his/her surrogate or proxy decision maker utilizing a written health care proxy designation. This individual designated by the adult patient with decisional capacity is the appropriate decision maker in the event that the patient loses decisional capacity.
- If the patient has not designated a surrogate or proxy decision maker, the laws of every state and the District of Columbia specify a hierarchy of individuals to be used in identifying the appropriate surrogate decision maker (with each individual possessing a relative degree of priority in the hierarchy). Thus, it is critical that every physician be familiar with the laws of his or her jurisdiction of practice. In general, however, the hierarchy is as follows: (1) a court appointed decision maker on behalf of the patient; (2) a proxy designated by a patient who once had decision capacity; (3) the patient’s spouse (or domestic partner, in jurisdictions that recognize such a status); (4) an adult child of the patient; (5) a parent of the patient; (6) an adult sibling of the patient; (7) nearest living relative or close friend of the patient.
As described in Module 6, it is the physician’s responsibility to assess the decision making capacity of patients – as well as surrogate decision makers. Decisional capacity is one requirement for surrogate decision making. Another requirement for a morally valid surrogate decision maker is that he or she be free of obvious conflicts of interest.
There are two widely recognized, ethically valid standards for surrogate decision making, the “substituted judgment” standard and the “best interests” standard:
- The substituted judgment standard: the “judgment” referred to in this standard is the patient’s own judgment of what modes of treatment and care are consistent with his or her preferences and values. In other words, in using the substituted judgment standard, the surrogate decision maker does not “substitute” his or her own preferences and values with regard to the choice of a course of treatment or care; he or she relies on the patient’s own expressed preferences and values. This assumes that the surrogate decision maker has some knowledge of the patient’s preferences and values. Such knowledge can be gained in one or more of several ways: (a) through an oral or written advance directive; (b) through indirect remarks indicative of the patient’s preferences and values; or (c) through extrapolation of other known characteristics of the patient (i.e., beliefs). The first way—(a)—offers the most reliable guidance; the second way—(b)—is less reliable, albeit defensible, especially if more than one individual can attest to the patient’s preferences and values in this manner; the third way—(c)—is the least reliable, but may be defensible if the surrogate decision maker has had a long and intimate knowledge of the patient.
- The best interests standard: When there is no information, whatsoever, about the patient’s preferences and values with respect to treatment and care, the best interests standard is utilized by the surrogate decision maker. To invoke and appropriately utilize this standard, the surrogate decision maker must communicate and work collaboratively with treating clinicians. To determine what treatment(s) would be in the patient’s best interests requires accurate information about the patient’s diagnosis, the prognosis (with and without treatment), the reasonable goals of care in light of the diagnosis and prognosis, and the treatment alternatives that are appropriate means to realizing the goals of care. Given the diagnosis, prognosis, and goals of care, the surrogate decision maker asks, Which course of treatment and care would be of greatest benefit to the patient? Moreover, the benefit to be achieved is net benefit, which can only be determined and weighed in the broader context of a patient’s goals of care and not with respect to a specific treatment. For example, treating pneumonia in an otherwise healthy patient would yield a net benefit to the patient: the pneumonia could be cured. Treating pneumonia in a patient who is dying may not yield a net benefit to the patient.
Case One: The patient is 52-year old male who is suffering from end stage renal disease; he suffers from a congenital form of mental retardation. His physician has suggested that he might benefit from kidney transplantation. His elderly parents, however, are conflicted about the question of whether or not to authorize the transplant for a variety of reasons. What are the best interests of this patient?
Case Two: The patient is a 70-year old woman with metastatic cancer of the bladder. In addition to her cancer, she has also suffered a debilitating stroke. Her husband, also 70-years of age, insists that she had indicated to him on several occasions that she would not want aggressive treatment in the event that she was suffering from multiple ailments. Her adult daughters, however, insist that their father—who never “got along” with his wife—simply wishes to be free of her and that they know that their mother would want to continue to fight.
With case one, does the fact that this patient is mentally retarded materially affect the determination of his best interests? What short- and long-term considerations should be brought to bear on the determination of his best interests?
With case two, how would you go about determining whether the husband is a “morally valid” surrogate decision maker? How would you assess the daughters’ claims about their mother’s preferences and values?
The following links are all useful, general resources for surrogate decision making. To find links specific to your state jurisdiction, search the web using “surrogate decision making + the name of your state.”