Mrs. Erickson lives in a long-term care facility. At 72, she has hypertension, mid-stage Alzheimer disease, and aortic stenosis complicated by congestive heart failure. It has become challenging to manage her fluid balance on an outpatient basis. When she was admitted to the inpatient teaching service from the dementia unit of her care facility with acute decompensation due to heart failure, an echocardiogram indicated that her aortic stenosis had progressed to a severe stenosis stage, and she was admitted to the hospital. Mrs. Erickson is able to interact with caregivers intermittently and is able to participate in her activities of daily living (ADLs), although she requires assistance with all of them.
Mrs. Erickson has a 15-year-old advance directive in which she indicated that, should she not be able to make decisions about her care, she wanted the benefit of all available medical interventions to preserve her life. At the time the advance directive was prepared, Mrs. Erickson had mild hypertension that was fairly well controlled with dietary changes, and no signs of Alzheimer disease. She was living alone and working full-time and named her only daughter as the person with durable power of attorney for health care.
Shortly after Mrs. Erickson entered the care facility seven years ago, her daughter died, so that now her 19-year-old granddaughter, Caitlin, is her next of kin. Caitlin was not mentioned in Mrs. Erickson’s advance directive, and she says that she and her grandmother have never discussed end-of-life care.
After a thorough presentation of Mrs. Erickson’s history and status by the intern of the team, the attending physician suggested offering her an aortic valve replacement as a therapeutic option. This sparked lengthy discussion among the team members, who finally decide to discuss the options with Caitlin. The resident on the team, Dr. Marx, felt ill at ease about the prospect of surgery. Even though the patient clearly indicated that she wanted all interventions, Dr. Marx thought that, if she could make this decision in her current state of health, she would choose not to pursue this route.
Caitlin came in for the discussion of the risks and benefits of various options. After hearing what the team has to say, she sighed. “This is a really tough decision. Frankly, I’m not sure what to do. Do you think surgery is the best option?”
Dr. Marx does not know how to respond; the patient has a clear clinical need for surgery and previously indicated that she wanted everything done to preserve her life. Yet he believes she would not choose that option in her current state of health.
At the outset, this might appear like a straightforward situation of implementing what the patient has specified in her advance directive, but critical elements of this case raise ethical dilemmas for both the care team and Mrs. Erickson’s granddaughter. Firstly, it is important to note that Mrs. Erickson’s advance directive was prepared 15 years ago, when her medical condition consisted only of mild, well-controlled hypertension. More importantly, she is reported to have been significantly more independent and capable then than at the present. Secondly, while we are informed that the granddaughter, Caitlin, is her next of kin, Caitlin and her grandmother have not discussed end-of-life care, so her lack of awareness of Mrs. Erickson’s goals and values is of concern.
Guidelines and Recommendations
Decision-making capacity. It is paramount to first determine whether Mrs. Erickson has the capacity to make a decision regarding her treatment. This is critical, because advance directives or surrogate decision makers come into play only if the patient lacks capacity. Miller and Marin’s formulation for determining decision-making capacity consists of the following questions: (a) Do the history and physical examination confirm that the patient can communicate a choice? (b) Does the patient understand the essential elements of an informed consent? (c) Can the patient assign personal values to the risks and benefits of an intervention? (d) Can the patient manipulate the information rationally and logically? (e) Is the patient’s decision-making capacity stable over time ?
While individual clinicians may vary in the specific questions they ask a patient, it is recommended that the elements of understanding, appreciation, reasoning, and expressing a choice be covered for each decision made, for a person may have the capacity to make one decision but not another . Although cognitive impairment impacts one’s ability to understand and express, it does not automatically preclude decision-making capacity. Sessums and colleagues demonstrated that the mini-mental status exam (MMSE) correlates with capacity or incapacity only in extreme scores . Palmer and colleagues identified the ability to conceptualize, initiate, and perseverate on a thought as key factors indicating capacity to appoint a proxy, while memory was a significant predictor of capacity to consent to a neurosurgical clinical trial .
We recommend first discussing her medical situation thoroughly with Mrs. Erickson. This ought to include details of her medical condition, the goals of treatment, description of the available treatment options, the prognosis of her condition in the case of each treatment option, the chances of success and risks involved in the case of each treatment modality, the expected quality of life related to each option offered. She should be allowed the opportunity to ask questions. After this discussion, the next step would be assessing Mrs. Erickson for her capacity to make a decision regarding whether or not she wants to undergo aortic valve replacement. If an attending physician determines that Mrs. Erickson has the capacity to make a decision regarding the proposed surgery, the decision she makes at this time should be honored, irrespective of whether it is consistent with the advance directive. This would be served best in a multidisciplinary team meeting, with her granddaughter present, if Mrs. Erickson desires. It would also be good to revisit Mrs. Erickson’s advance directive now if she possesses the capacity to do so.
Should Ms. Erickson be deemed to lack capacity, we recommend following the hierarchical decision-making procedure proposed by Buchanan and Brock, in which the advance directive follows patient decision making and is followed by substituted judgment and best interest in subsequent steps .
Advance directive. The directive came into being with the primary objective of protecting individual autonomy. The document’s title, its constituent parts, and the procedure by which it is prepared vary from state to state. It broadly consists of two parts and may document a person’s wishes about life-sustaining treatment (living will), choice of a surrogate decision maker (durable power of attorney for health care), or both.
Mrs. Erickson has an advance directive in which she specified that she would like to receive all available medical interventions. However, there is no mention of whether the advance directive has been discussed, revisited, or modified since its formulation. Anticipating future medical situations and predicting what one’s preference at that time might be are challenging. One study found that preferences about life-sustaining treatments changed in one-third of individuals over a two-year period . Gready and colleagues have discussed that most individuals do not have insight and awareness into how their preferences change over time and may not modify the advance directives to reflect these changes .
One could assume that following what Mrs. Erickson stated in her advance directive would be the clearest way of respecting her autonomy. However, the age of the document and the disparities in her medical and functional status between the time her advance directive was drawn up and the present raise important questions about whether her best interests would indeed be served by uncritically following the document. Another factor that merits consideration is whether the directive covers the current clinical situation. For example, although directives of “do not resuscitate” and “do not intubate” are considered similar by clinicians, individual patients might not view them as the same. For this reason, it is appropriate to involve the family in the patient’s care, even if the advance directive is unambiguous.
Smith and colleagues proposed a framework for striking a balance between previously expressed preferences and what might serve best interests at the present time. The factors they considered were how emergent the clinical situation is, the risk-benefit ratio of implementing versus withholding interventions, how well the advance directive fits the situation, the leeway provided by the patient to the surrogate for overriding the advance directive, and the team’s assessment of how well the surrogate represents the patient’s best interests . Jonsen and colleagues recommended decision making based on four broad themes, namely, the medical indications, respect for patient autonomy, quality of life, and contextual factors, including but not limited to religious, financial, and legal considerations .
Based on the approach recommended by Smith and colleagues, we can state that our patient is faced with an important clinical problem, but one that is not an emergency and that affords the opportunity for careful deliberation. An advance directive is present but is an ambiguous fit with the current circumstances. We do not know of any leeway provided in the directive. The granddaughter, although identified as the next of kin, is young and has not engaged in end-of-life discussions with her ailing grandmother. Of note, whether and to what extent a surrogate decision maker can override what has been stated in the advance directive depend on state law.
Surrogate decision making. If a patient lacks decision-making capacity and the applicability of the directive is dubious, a surrogate decision maker’s input may help in developing an accurate reflection of the patient’s wishes. There are two approaches to surrogate decision making, namely “substituted judgment” and “best interest.” In “substituted judgment,” the surrogate “reports on” his or her knowledge of the patient’s preferences and values . The “best interest” principle requires a surrogate to make a decision based on what he or she believes would best serve the patient’s interests and well-being . Of note, Braun and colleagues emphasize that the best interest principle should not presume that continuing life-sustaining treatment would necessarily serve a patient’s best interest and encourage that a holistic approach to the patient’s well-being be adopted .
If it is determined that Caitlin is making a decision, her feelings related to decision making should be discussed, for they can have an impact on whether the decision best serves the patient in question. Fritch and colleagues demonstrated that surrogate decision making is influenced by patient factors (input at the present time, past knowledge of values and best interest) and surrogate factors (the use of surrogate’s own wishes as a guide, religious beliefs, the surrogate’s own interests, family consensus, and feelings of obligation and guilt) . The physician should be open to have an ongoing conversation with Caitlin throughout the course of Mrs. Erickson’s treatment.
The medical community will be faced with an increasing number of such ethical dilemmas in the future, with the simultaneous advancement in technology to prolong life and the increase in the prevalence of individuals with dementias. As physicians, we will be serving our patients well by having discussions on advance directives early and revisiting them regularly. We also recommend that all physicians familiarize themselves with the federal and state statues on decision making and involve consultation liaison psychiatry, the ethics team, or hospital’s legal counsel, if needed, in complicated cases.
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