In our framework of five factors (); the importance of each factor will vary for each patient and situation. We analyze how each factor relates to the case presented. The framework is not meant to reduce complex decisions into a simplistic algorithm, but to ensure that key issues are considered.
A Framework for Weighing Previously Expressed Preferences vs. Best Interests
This framework relies on conversations between the physician and the surrogate to ascertain the patient’s values and thinking during advance care planning, and as such is most appropriate for cases where a surrogate is available. If a surrogate is not available, factors beyond the scope of this paper, such as the clarity of previously expressed wishes or the presence of an appointed conservator, will need to be considered and an ethics committee or consultant may need to be involved.
First, is the clinical situation an emergency that allows no time for deliberation? If so, as in a cardiopulmonary arrest, clinicians should immediately determine if the patient’s previously expressed wishes have been translated into actionable orders, such as a Do Not Attempt Resuscitate (DNAR) order. The Physician Orders for Life-Sustaining Treatment (POLST), now legally recognized in 12 states including California and New York,10
was designed to provide physician’s orders to direct emergency responders, particularly for nursing home residents. This brightly colored form may contain DNAR orders that are valid across all health care settings. In the absence of a clear DNAR order or immediate, clear, and unambiguous input from the legally recognized surrogate decision maker however, clinicians should initiate cardiopulmonary resuscitation. In contrast to orders such as the POLST or a DNAR, some advance directives or living wills may contain vague language that requires time for interpretation. For example, an advance directive stating life-sustaining measures are not desired in the case of a terminal illness does not definitively imply that a patient would not want attempted resuscitation in all circumstances, and interpretations of the word “terminal” will vary. However, most clinical situations, such as with Ms. Stevens, allow at least some time for deliberation and discussion.
Second, overriding previously expressed preferences should be considered in light of the benefits and burdens of the proposed intervention and its alternatives. The physician needs to ascertain key medical information and advice from specialists, discuss with the surrogate the clinical situation in terms she can understand, and invite questions. In this case, in order to consider whether to override Ms. Stevens’ wish not to return to the hospital, the benefits and burdens of hospital transfer and surgery need to be evaluated. On the one hand, the risks of surgery are increased due to Ms. Stevens’ age, aortic stenosis, and dementia. On the other hand, surgical options are likely to give her the greatest chance of resuming her walks in the garden, decrease pain after the post-operative period, and later allow daily care such as bathing and toileting without pain. To clarify the medical benefits and risks of surgery, Dr. Green might ask a surgical consultant: what is the probability of restoration of function for Ms. Stevens following surgery? What is her likelihood of perioperative death? With this information, the physician and daughter can be guided by Ms. Stevens’ underlying goals and values. For instance, if the possibly of restoration of function is low or if the patient’s aortic stenosis is critical, the burdens of surgery may outweigh the benefits for Ms. Stevens. However, for some patients a substantial risk of death is acceptable in light of the potential to maintain quality of life.
Third, the physician and surrogate must consider how well the previously expressed wishes fit the situation at hand and how clearly they were expressed. Dr. Green should explore with the surrogate the values and goals behind Ms. Stevens’ and the surrogate’s preference for avoiding the hospital. Honoring Ms. Stevens’ underlying values and goals may paradoxically lead to decisions that conflict with her previously specified treatment preferences. Yet respecting her values and goals may be more ethically defensible than following literally previously stated preferences in an advance directive that were meant to apply to different circumstances.2,8,11
In this case, Ms. Stevens decided to stay out of the hospital after watching a close friend with severe Alzheimer’s dementia develop a bloodstream infection and spend a week on a ventilator before dying. Ms. Stevens was clear that in such circumstances, being comfortable and avoiding a long ICU stay before dying was her top priority. Ms. Stevens had never considered the possibility of a hip fracture. Dr. Green can point out that after hip surgery, Ms. Stevens’ hospitalization and ICU stay would likely be brief, in contrast to her friend’s experience. Dr. Green could suggest that rather than following the exact words on her mother’s advance directive that concerned radically different circumstances, hospitalization and surgery may honor Ms. Stevens’ underlying goal to remain comfortable and give her the best opportunity to maintain mobility. Should the surgery not turn out as hoped, the plan of care could be re-assessed. If Ms. Stevens’ were suffering, comfort care could be offered while she was allowed to die peacefully.
Fourth, the degree of leeway granted by the patient to a surrogate to override her previously stated wishes may help guide decisions. Because many patients want their loved ones to have some flexibility to adapt decisions to unforeseen circumstances,12–14
physicians should discuss leeway with patients during advance care planning.2
In one study, 39% of patients would grant no leeway, while 31% would grant complete leeway.15
Currently only a few advance directive forms capture patient preferences for leeway.16–18
Because all future clinical circumstances cannot be anticipated, it is desirable for patients to choose a surrogate they can trust to interpret their values and goals for clinical situations that had not previously been considered, such as in this case.19
However, this paper goes beyond this work to suggest how prior decisions about leeway should be taken into account when a clinical decision needs to be made for a patient who has lost decision-making capacity.
To be sure, allowing leeway carries ethical risks as well as benefits. Advance directives were created to allow patients a form of extended autonomy in states of future mental incapacity. Leeway might be seen as an erosion of that autonomy and as unwarranted paternalism for a patient who cannot object. However, if a patient grants their surrogate leeway ahead of time, this decision can also be considered an extension of their autonomy that should be honored.
Knowing the amount of leeway a patient has granted a surrogate can be very helpful. Consider if Ms. Stevens had told her daughter, “Don’t send me to the hospital, under any circumstances. I’ve been there enough and I never want to go back. Please, please do this, no matter what is happening to me.” The physician and daughter, guided by this preference, may decide to start a hospice approach in the nursing home. However, suppose Ms. Stevens had allowed her daughter leeway by saying, “I don’t want to go back to the hospital and die unconscious on a breathing machine, like my friend. But I trust you to make the right decision when the time comes.” In this situation, pursuing hip surgery would be consistent with the patient’s values. Having leeway, the daughter would not feel bound by the advance directive to withhold treatments that she believes in her mother’s best interest.
Unfortunately, until leeway is routinely incorporated into advance care planning conversations and advance directive forms, most patients will not have discussed leeway. Surrogates often cannot accurately describe how much leeway patients would want to grant surrogates if they lacked decision-making capacity.12,19
The absence of documented preferences for leeway does not necessarily close the door to overriding previously expressed preferences if it is in the patient’s best interest to do so. However, the reasons for doing so need to be stronger than if leeway had been previously granted. What is known about the patient’s previous values and goals needs to provide a compelling reason to modify specific written directives. For Ms. Stevens, a reasonable case can be made that surgery is in her best interests and consistent with her goal of being comfortable, and her daughter’s view that Ms. Stevens would want her quality of life maximized by maintaining mobility under these circumstances.8
Finally, it is important to consider how well the surrogate is representing the patient’s best interest. Ms. Stevens’ daughter might regard surgery and rehabilitation as much more burdensome than the clinician does,3
because her mother often objects to routine nursing care, complains that her freedom is being abused, and calls the staff names.20,21
In some cases, the surrogate may be so overwhelmed by their own emotional needs that they may act in their own interests rather than those of the patient. Consider if the daughter had said, “I just can’t bear losing my mother. I can’t let her go.” In this case, rather than trying to “convince” the daughter of what is in the patient’s best interest, Dr. Green would need to first address the surrogate’s angst and anticipatory grief.22
Only after this acknowledgement would clinician then discuss how the patient’s mother would want to be treated under her current circumstances. These two discussions may not be able to be completed in one conversation, because the surrogate may need time to process their emotions and the clinical information.
In rare cases, the surrogate may have a strong conflict of interest, such as a stated desire to receive the patient’s pension or an inheritance. In these cases the clinician might seek an ethics consultation or contact adult protective services, and depending upon the situation, may need to seek a court order to authorize or withdraw treatments. Having mixed motivations alone does not warrant a call to adult protective services, however. There needs to be some evidence of biased decision-making, such as not acknowledging countervailing considerations, or framing decision solely in terms of what is best for surrogate, not the patient. Having mixed motivations alone does not warrant a call to adult protective services, however. There needs to be some evidence of biased decision-making, such as not acknowledging countervailing considerations, or framing decision solely in terms of what is best for surrogate, not the patient.
There are helpful suggestions for words that physicians would use in these conversations.1,8,23
Physicians should use open-ended questions and empathic comments that respond to the emotional stress surrogates experience. Doctors should help surrogates deliberate by summarizing their statements about the patient’s values and linking those values to the decisions at hand.24
Furthermore, doctors should offer to make a recommendation based on the patient’s values. About 40% of surrogates, however, prefer not to receive a recommendation.25
Our proposed framework can also be used for patients who are “full code”, as in the case example below.