When an adult patient lacks the capacity to make her or his own healthcare decisions, the clinical team turns to a surrogate decision-maker (typically a family member) to assist in making decisions that protect and promote the interests of the patient. However, requests by a surrogate that may not be in the patient's best interest may make the clinical team uncomfortable. In this article, a bioethicist, Michael Deem, and a clinical nurse and hospital education coordinator, Jennifer Stephen, discuss such a situation as described in the following query submitted by a reader.
I was recently involved in the care of a patient, who was ventilator-dependent, in the ICU. Prior to being admitted to the hospital, the patient lived in a long-term-care facility and her quality of life was poor. The physicians involved in the patient's care had an in-depth discussion with the family regarding the patient's clinical status and potential for death if she were removed from the ventilator. Upon discussion with the family, it was decided that they wanted to palliatively extubate and withdraw care on the following Monday.
A few days later, the family called and wanted the palliative extubation pushed back a few more days. When asked why, they stated that they had not received the patient's Social Security check for the month and they needed the money to bury her. The family made it very clear that the patient was still to remain a full code until otherwise stated. Of note, the patient couldn't go back to the long-term-care facility because the family had cancelled any remaining payments. The hospital's ethics team was consulted.
Keeping the patient alive and cared for in the ICU setting so the family can receive one last check seems wrong and unethical. What is the right thing to do in this situation?
Michael Deem (MD): Bioethicists often say that good ethics begins with good facts. In this particular case report, the clinical facts are not fully described. However, the clinical team made a prudent decision in calling for an ethics consultation, given what appears to be their uncertainty over whether to respect the family's modified request for treatment.
Jennifer Stephen (JS): Frontline nurses frequently care for patients and families with challenging and complex life situations. Optimal care often requires interprofessional dialogue and collaborative problem solving. The clinical team would be remiss not to explore and take advantage of organizational resources, such as clinical ethics consultation services. In addition, case managers can advise the team about long-term-care services for which the patient may qualify. Social workers may be aware of financial assistance and other resources that could support the financial burden of a funeral.
MD: Agreed. An important dimension of patient advocacy is willingness to seek additional advice and resources when clinical cases pose ethical and practical challenges. While we do not have the benefit of knowing how the clinical ethicist conducted this ethics consultation, we can consider the sorts of questions the ethicist might want to ask the clinical team before determining which ethically permissible options remain. From a clinician's perspective, which clinical details would you like to see filled in before approaching the ethics of this case?
JS: From a clinical point of view, several data points regarding the patient's background are missing that could inform the current situation. What were the patient's living conditions in the long-term-care facility? What is the definition of a poor quality of life? Who made these judgments? In my experience, a difference in perception often exists among clinical providers, family, and the patient. If the patient required ventilatory support, did she have an advance directive or physicians' orders for life-sustaining treatment (POLST) drafted prior to a decline in her physical and mental health? Having one of these documents at hand would provide some direction for the desired interventions rather than relying solely on what the family and care team determine the patient would have preferred or what is in the patient's best interest.
MD: You raise a number of important background questions that should be addressed before considering the more immediate ethical issues surrounding the family's requests. While the case report does not state that the patient lacks decisional capacity (the ability to understand and deliberate over health information and then reach an informed decision about care), we can assume the patient is decisionally incapacitated and does not have an advance directive or POLST to guide the decision-making process. When a patient lacks decisional capacity, it is appropriate to seek a surrogate decision-maker—typically a family member—to assist the clinical team in deciding appropriate treatment options. Together, they should aim to make decisions that respect the dignity of the patient and reflect to some degree what they believe the patient would prefer or desire.
JS: Assessment is key in critical care nursing practice. In this situation, clinical signs such as ventilator dependence and poor clinical status are concerning indicators of the patient's health status. However, some critical care nurses may believe that these signs are not sufficient to justify a decision to extubate. Clinical indicators such as vital signs, lab results, and physiologic monitoring and testing can provide a clearer picture of the patient's clinical status and risk of imminent death. Some critical care nurses may even desire a declaration of brain death before feeling comfortable with a recommendation for withdrawal of ventilatory support.
MD: You really underscore how important the details surrounding the patient's admittance to the ICU are to an ethical analysis of the case. Without them, it is difficult to discern why a discussion about extubation was initiated with the family. One area of caution for clinicians, especially in critical care and end-of-life care contexts, is the making of “quality-of-life” judgments. While clinicians have the expertise to make evidence-based judgments regarding, say, a patient's pain experiences, the progression of a particular health disorder, or the probability that a particular intervention will provide a benefit, they do not have any special competence to make judgments about the more subjective aspects of a patient's experience of her or his life. Clinicians, then, should generally avoid “quality-of-life” judgments when they are not based on good clinical evidence. We also do not know why the clinical team proposed extubation as an option to the family. The case report informs us only that there was a discussion about the “potential for death” after extubation. Does the patient have a terminal diagnosis, or does the clinical team expect imminent death? That a patient has a terminal diagnosis does not alone justify terminal extubation. But additional considerations would be relevant to a decision about whether to extubate. Is the patient's death imminent despite ventilatory support? Is the patient facing rapid and irreversible decline? Is ventilatory support excessively burdensome for the patient (for example, because the endotracheal tube is causing serious or recurring infection)?
We might also encourage some investigation into whether the patient had voiced preferences or goals for care before or during her time in the long-term-care facility. This is especially important in critical care and end-of-life care contexts, in which we should aim to make decisions that both respect the dignity of the patient and reflect to some degree what we believe the patient would prefer or desire.
Let us assume for the sake of our discussion that there is ethical justification for extubation along the lines we have been considering—either the patient is in irreversible decline toward death, or death is imminent and the ventilator is excessively burdensome to the patient. From a nursing perspective, how would you assess the family's change in request for treatment?
JS: As a nurse, my commitment is first to the patient. This commitment is enshrined in the American Nurses Association's Code of Ethics.1 Collaboration with the family is a natural and expected practice action; however, in this situation, I am challenged to decide if the family has the patient's best interests in mind.2 Which should be more important in guiding the decision: the value of the patient's health status or the financial status as described by the family? Is it in the patient's best interests to delay extubation knowing that if the patient's condition deteriorates during that period, she would have to endure a full code? The family's request to prolong intubation has definite clinical implications for the patient.
MD: You have steered us to what seems to be the main ethical concern expressed in this case report. The clinical team's concern seems to center on the family's modified request that the patient remain intubated and in full code until the family receives the patient's last Social Security installment. Why might a clinician worry about the reasons that a surrogate offers for a decision? In this case, it seems that the clinical team was initially prepared to defer to the family's decisional authority and balked only after the family modified their request. What might be the concern: the request itself, or the reason the family provided for making the request?
JS: That is difficult to determine. Both might be of concern depending on the perspective of the team member. The critical care nurse may be concerned that the change in the decision was an indication that the family lacked complete and accurate information to make an informed decision. If this is the case, the team would need to provide additional information to the family. Other considerations include the legal and institutional feasibility of the request. The critical care nurse might consider whether the new request aligns with the hospital's policy. However, based on the family's expression of the reason for the decision change, the critical care nurse may conclude that the request was not due to a lack of knowledge; rather, the request was financially driven. In any case, the clinical team and the clinical ethicist should assess whether the request was in the best interest of the patient.
MD: Agreed. Perhaps the team might be concerned that the family is requesting inappropriate treatment. The team might worry that continuing aggressive life-sustaining treatment would be an excessive burden for the patient, and the clinical team is likely in the best position to determine the degree of physiologic burden the patient might endure.
Perhaps it is not so much the request itself that troubles the clinical team, but rather the expressed reason or motivation behind the request. Does the family's desire to receive the Social Security installment render the request ethically problematic? In similar cases where extending aggressive care results in some harm to the patient, the family may offer reasons that justify maintaining this direction of care. For example, suppose that the family's new request was motivated by a desire for an out-of-town family member to have enough time to travel to the hospital and say “goodbye” to the patient. Unless extending the life-sustaining treatment would clearly produce significant harm to a dying patient, maintaining an aggressive direction of care might be ethically justified despite providing no obvious health benefit to the patient. One might argue that the value of the family uniting at the death of the patient is itself a benefit for the family and patient that should be promoted, despite reservations on the team's part.
Returning to our case, is there a reason to think that respecting the family's request would result in inappropriately using the patient as a mere means to some benefit for the family alone? Would this be grounds for objecting to the family's stated reason for their request?
JS: One might question the family's intent, considering the cancellation of payment to the long-term-care facility in contrast to the request to continue care and intubation. It would be helpful to know the nature of this cancellation—whether it was a matter of the family not anticipating a return to the nursing home after extubation, the inability to pay, or possibly an action by a third party, such as the long-term-care facility refusing to continue care. If stable but mechanically ventilated, could the patient return to the long-term-care facility or an appropriate lower level of care?
Nurses, of all clinicians, interact most with patients and families and may witness family conversations and actions indicating the family's intent. The nurse may be privy to relevant information that requires advocacy on the patient's behalf.
MD: It is possible that the family does not really intend to use the Social Security installment for the posthumous benefit of a suitable burial for the patient. Such a conflict of interest would certainly undermine the family's decisional authority, which is why ethicists insist that a surrogate's decision be weighed along with the patient's interests and well-being. But absent clear evidence of a conflict of interest in the family's decision-making, the clinical team should not balk simply because of the expressed reason for extending aggressive care. The reasons or motivations of surrogate decision-makers are secondary ethical considerations to the primary concern for the patient's interests and well-being. The clinical team is just not in a position to scrutinize the family's motivations or determine the value the patient would have placed on the family having the finances for proper burial.
We should provisionally conclude that the team ought to respect the family's request if there is no clear evidence that the family has a conflict of interest, that the family has demonstrated a pattern of decision-making that lacks regard for the patient's well-being, or that honoring the request would significantly harm the patient. Experiencing some uneasiness with the family's change of mind is not itself sufficient ground to question whether the family is properly disposed to make a care decision for the patient.
However, surrogate decisional authority is not absolute. The team should not only monitor the patient's condition and discomfort throughout these “few more days,” but also seek to revisit the decision if the patient is clearly and significantly being harmed by the family's decision. The team should also reconsider the decision if the family requests additional time on ventilatory support beyond a “few more days” or if there is clear negligence on the family's part. In these latter instances, it might be ethically permissible to challenge or even override the family's decision.