1.Consent and refusal
4. Surrogate decision-making
Elizabeth K. Vig, Allen Gustin and Kelly Fryer-Edwards
The Case – Part 1
Ethel Smith, an 80 year-old widowed woman, is admitted for elective total hip replacement. She has a history of well-controlled diabetes and hypertension, but is otherwise healthy. Her functional status has declined because of hip pain. Preoperatively, she is cognitively intact. Her surgery proceeds uneventfully; however, she develops postoperative delirium in the recovery room. Her medical team decides that she should be transferred to an intensive care unit for support and monitoring. They schedule a meeting with her three children to discuss her condition. During this meeting, her family states that she never designated any family member to act as her decision-maker.
Who is the legal decision-maker?
As long as Mrs. Smith has decision-making capacity, she can make her own medical decisions. Surrogates do not become legal decision makers until a patient loses decision-making capacity. Many places (including 44 of the United States) have laws identifying a hierarchy of legal surrogates. Different states vary in who is included in the hierarchy, but the order is often as follows: Court appointed guardian, Durable Power of Attorney for Healthcare (DPOA), spouse, adult children, parents, and adult siblings. Five states include attending physicians in this hierarchy. In Mississippi, the “owner, operator, or employee of a residential long term care institution” is included in the hierarchy. In Texas, a “member of the clergy” is included.
If there are multiple people within a category, such as Mrs. Smith’s three children, in the US they all have equal legal standing as decision-makers. The legal decision-maker is not automatically the oldest, smartest, or most involved child. When there is not agreement between the surrogates within a category, some states require consensus, while others only require a majority opinion.
Many European countries have autonomy-based models of decision-making for competent patients, and hierarchies for surrogate decision-making for incapacitated patients that are similar to that in the US. A recent review of laws of eight European countries (Belgium, Denmark, England, France, Germany, the Netherlands, Spain and Switzerland) showed that all recognize the autonomy of competent patients to make medical decisions. All except France recognize the legally binding power of written advance directives. Decisional powers of family members, close friends, and family doctors vary from country to country. Similarities and differences are summarized in Table 4.1.1
A Durable Power of Attorney for Healthcare is a legal document in which individuals can designate one or more individuals whom they want to make decisions on their behalf if they lose decision-making capacity. There are some exceptions to this, such as some documents from the State of California that allow the DPOA to make decisions even if the patient retains decision-making capacity.
Patients usually want their families to make decisions for them if they lose the ability to make their own decisions. In one study, older patients explained that the reason they chose a given surrogate decision maker was because that person was the person they felt closest to (33%), the person who understood them the best (26%) and the person who was geographically the closest (17%).2
A living will is a type of advance directive in which an individual expresses his/her preferences for care in future health states. Most of these documents are not very specific, but can be used by the family and the patient’s healthcare team in order to guide decisions when the patient can no longer express preferences.
Table 4.1. Surrogacy in medical decisions for incapacitated patients in eight European countries, 2009
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 interestsstandard, 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.6For 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.
How accurate are surrogate estimates of patient preferences?
Numerous studies have investigated the accuracy of surrogates’ estimates of their loved ones’ preferences.7In these studies, patients fill out a questionnaire identifying their care preferences in numerous health states, and their preferred surrogate decision-makers estimate their care preferences in these same states. Surrogates’ accuracy in estimating patient preferences is then calculated. A review of these studies found that surrogates correctly estimated their loved ones’ preferences 68% of the time. Of note, clinicians are less accurate than family members in estimating patient preferences.
The Case – Part 4
After 9 days, Mrs. Smith remains unable to recognize her children, appears delirious, and is still intubated in the intensive care unit. Mrs. Smith’s son remarks to the ICU nurse, “I realize that there’s not much we can do but wait, and I hate to see her suffer, but I think we need to keep things going for now because I need to have something that I can live with.”
What are the burdens of decision-making on surrogates?
Patients recognize how their illness, caregiving needs, and need for decision-making may impose stress on their loved ones. In previous research, many different types of patients have expressed concern about burdening their loved ones with their illness and needs. In order to lessen the burden on loved ones, many patients allow their loved ones some degree of leeway in how strictly to follow their preferences. For example, a patient may prefer not to remain on a ventilator for an extended period of time, but also may recognize that his/her surrogate decision-maker may need time to get comfortable with making the decision to withdraw care. Patients may recognize this and agree to remain on the ventilator temporarily.
Additionally, it is stressful both to have a loved one who is seriously ill and to make life or death decisions for that loved one. The literature on the after-effects of caregiving and surrogate decision-making is becoming more extensive. In studies from France8 and the US9, families who made decisions for a loved one in an intensive care unit were found to have anxiety, depression, and even symptoms of PTSD up to six months after their loved one was discharged from that unit.
There are some data from the perspective of surrogate decision-makers on what clinicians could have done to make decision-making easier for them. In one study, surrogates reported that decision-making was easier when clinicians were available to answer their questions, gave them frank information about chances of recovery and prognosis, made treatment recommendations, and treated them with respect.10 When too many clinicians were involved, decision-making was harder for surrogates. When the medical team can frame their recommendations in terms of the patient’s known values and preferences, such a recommendation can be a strong guide and support for the surrogate. That is, the team can help shift the burden of owning the decision from the surrogate to the patient (e.g., just enacting his/her wishes for him/her) or to the disease state (e.g., there is little more we can offer that will help her).
The Case – Part 5
After 2 weeks, Mrs. Smith’s aspiration pneumonitis and her delirium show signs of improvement. She is still intubated, but her confusion begins to wane. She now recognizes her children. She has periods where she is quite lucid and other periods where she is still quite confused. She probably would benefit from a tracheostomy in the operating room, but her clinicians don’t know if they should ask Mrs. Smith or her family to make this decision.
How do we determine if a patient can make his/her own medical decisions?
The team needs to assess Mrs. Smith’s decision-making capacity. Unlike competence, which is determined in a court of law, decision-making capacity is determined by a clinician. Psychiatrists and psychologists aren’t the only clinicians who can evaluate decision-making capacity – any physician can determine whether a patient has decisional capacity.
Decision-making capacity is made up of four decision-making abilities: understanding, appreciating, reasoning, and choosing. Though she may be intermittently delirious, Mrs. Smith may still be capable of making some decisions, especially when her mental status is clearest. For example, Mrs. Smith may be able to designate one of her children as her Durable Power of Attorney for Healthcare, but at the same time, she may not be able to make more complex decisions such as whether or not to undergo an additional surgical procedure.
When assessing whether Mrs. Smith can make the decision about a tracheostomy, her medical team would want to talk to her when she is most alert and lucid. They first would want to assess herunderstanding of her condition and the decision at hand. The team should review her condition, the need for a tracheostomy, and the risks, benefits, and alternatives to the procedure. They might ask Mrs. Smith to repeat this information back in her own words – by writing, or indicating her preference on a tablet or computer screen, for example. Next, her appreciation should be assessed. Does she realize that the decision will affect her body? For example, if she is in denial about how sick she has been and her continued need for mechanical ventilation at night, she might not appreciate why a tracheostomy is needed. The team next would want to ask Mrs. Smith to indicate her treatment choice and the reasons for that choice. Her reasons should be consistent with her beliefs and values. Her choice should follow this reasoning and be stable over time. If she changes her mind when she is more confused, but then reverts to her previous choice when less confused, the choice voiced when she is less confused should be honored.
After assessing a patient’s decision-making abilities, the clinician uses his/her judgment to determine if the patient has decision-making capacity. Patients do not need to have all four abilities present to have decisional capacity. The clinician determines how much of each ability needs to be present for capacity to be present, and may vary the requirements depending on the decision at hand. In other words, when assessing a patient’s decision-making capacity, the evaluation will be more stringent if the consequences of the decision are more serious and irreversible, such as the decision to withdraw life-sustaining treatment.
• It may be possible to prevent confusion about the appropriate surrogate by asking all hospitalized and preoperative patients with decision-making capacity to identify their preferred surrogate decision maker(s) early in their hospital stay.
• Most patients are concerned about burdening loved ones and allow their surrogates some leeway in interpreting and implementing their care preferences.
• Surrogates estimate loved one’s preferences with moderate accuracy. When they choose treatment plans that seem to be contrary to a patient’s preferences, it is more often because of love than malice. Ethics and palliative care consultants can help evaluate apparent discrepancies.
• Disagreement between surrogates about the “best” plan of care happens often. Although surrogates are expected to interpret a patient’s preferences, they may have trouble putting their own preferences aside. Clinicians may need to investigate the reasons for each surrogate’s opinion when there is disagreement and try to refocus the discussion from each party’s interest to a general discussion of the patient’s life and values.
• Decision-making capacity is assessed by evaluating patients’ abilities to (1) understand information about their condition and treatment options; (2) appreciate that the decision at hand will affect them; (3) explain their reasoning; and (4) arrive at a choice consistent with their values and beliefs or a discussion of the patient’s life and values.
1* Lautrette, A., Peigne, V., Watts, J., et al. (2008). Surrogate decision makers for incompetent ICU patients: a European perspective. Curr Opin Crit Care, 14(6), 714–19.
2 Cohen-Mansfield, J., Rabinovich, B.A., Lipson, S., et al. (1991). The decision to execute a durable power of attorney for health care and preferences regarding the utilization of life-sustaining treatments in nursing home residents. Arch Intern Med, 151(2), 289–94.
3 In re Westchester County Medical Center, 72 NY 2d 517 (1988)
4* Vig, E.K., Taylor, J.S., Starks, H., et al. (2006). Beyond substituted judgment: how surrogates navigate end-of-life decision-making. J Am Geriatr Soc, 54(11), 1688–93.
5* Verkerk, M.A. (2001). The care perspective and autonomy. Med Health Care Philos, 4(3) 289–94.
6* Stewart, A.L., Teno, J., Patrick, D.L., and Lynn, J. (1999). The concept of quality of life of dying persons in the context of health care. J Pain Symptom Managem, 17(2), 93–108.
7* Shalowitz, D.I., Garrett-Mayer, E., and Wendler, D. (2006). The accuracy of surrogate decision makers: a systematic review. Arch Intern Med, 166(5), 493–7.
8* Azoulay, E., Pochard, F., Kentish-Barnes, N., et al. (2005). Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med, 171(9), 987–94.
9* Anderson, W.G., Arnold, R.M., Angus, D.C., and Bryce, C.L. (2008). Posttraumatic stress and complicated grief in family members of patients in the intensive care unit. J Gen Intern Med, 23(11),1871–6.
10* Vig, E.K., Starks, H., Taylor, J.S., et al. (2007). Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others. J Gen Intern Med, 22(9), 1274–9.
Beauchamp, T.L. and Childress, J.F. (1994). Principles of Biomedical Ethics. 4th edn. Oxford, UK: Oxford University Press.
Buchanan, A.E. and Brock, D.W. (1990). Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge, UK: Cambridge University Press.
Grisso, T. and Appelbaum, P. S. (1998). Assessing Competence to Consent to Treatment. A Guide for Physicians and Other Health Care Professionals. New York: Oxford University Press.