A 15-year-old girl is scheduled to undergo an upper lobectomy to debulk metastatic Ewing sarcoma. The anesthesiologist recommended placement of a thoracic epidural catheter to provide postoperative analgesia. The patient did not want a needle to be placed near her spine. She was terrified that the procedure would be painful and that it might paralyze her. Although the anesthesiologist reassured her that sedation and local anesthesia would make the procedure comfortable, she remained vehemently opposed to the epidural procedure. The parents spoke privately to the anesthesiologist and asked for placement of the epidural after she was asleep. They firmly believed that this would provide optimal postoperative analgesia and thus would be in her best interest. Experts discuss the pros and cons of siding with the patient or parents.
Ethical dilemmas in adolescent medicine frequently are focused on the teenager’s emerging autonomy and decisional capacity. These issues become pressing when doctors and parents recommend one course of treatment and the teenager strongly prefers another. Such disagreements can arise along the spectrum of disease acuity and treatment burden. In this month’s Ethics Rounds, we present a case in which the disagreement is focused on which type of anesthesia would be best for a teenager with cancer. Experts in anesthesiology and bioethics analyze the clinical and ethical factors that go into making decisions about whether doctors and parents have the right to override a teenager’s choice of treatment.
A 15-year-old girl was scheduled to undergo an upper lobe lobectomy to debulk metastatic Ewing sarcoma. Postoperative pain, if not treated adequately, may compromise breathing and result in atelectasis and postoperative pneumonia.
The anesthesiologist met the patient, her parents, and a grandfather in the preoperative care area. All were anxious in anticipation of the major surgery. The anesthesiologist explained the components of the general anesthetic and discussed placement of a thoracic epidural catheter to provide postoperative analgesia. With the patient’s anxiety, the parents and grandfather concurred both that an epidural was a good idea and that the safest way to place the epidural would be after she was sedated but still cooperative. The patient was vehemently opposed to this plan. She did not want any needles stuck in her back.
Exploring the reasons for her refusal revealed that she did not want a needle to be placed near her spine. She was concerned that such a procedure might paralyze her. The anesthesiologist explained that paralysis was highly unlikely. She seemed to remain fixated on paralysis. She also was terrified that the procedure would be painful. Although the anesthesiologist reassured her that sedation and local anesthesia would make the procedure comfortable, she remained vehemently opposed to the epidural procedure despite the rarity of spinal cord injury complications, a promise to halt the procedure if it was too painful, and her parent’s entreaties that emphasized improved comfort postsurgery.
The parents drew the anesthesiologist aside and asked for placement of the epidural after she was asleep, even against their daughter’s emphatic objection. They firmly believed that this would provide optimal postoperative analgesia and would be in her best interest because the child had experienced severe postoperative pain after her previous primary tumor resection.
Ivor Berkowitz, MD, Comments
This case raises issues of how we should obtain permission for anesthesia in an adolescent and whether there should be limits to surrogate decision-making on the basis of an adolescent’s stated preferences. Parents are responsible for decision-making and for giving their permission for surgical and anesthesia procedures. They are expected to make decisions together with the involvement of their teenagers unless the teenager’s decision is manifestly harmful to the teenager’s well-being. Both the American Society of Anesthesia1 and the American Academy of Pediatrics2,3 support the principle that children “should participate in decision-making” together with their parents at a level “commensurate with their development,” in collaboration with their physician, and that “they should provide assent to care whenever reasonable” to acknowledge their self-interest and self-determination.2 The extent to which a child participates in their medical care and the validity of their assent depend on the age of the child, their emotional and cognitive development, and the level of interest in their health care. An approximation of the expected extent of the child’s involvement has been suggested by the Rule of 7’s. Children <7 years lack decision-making capacity, and parental permission alone is sought. Between ages 7 and 14 years, children show increasing interest in their health care decisions. They are more mature and more analytic in their understanding of increasingly complex medical issues. For these patients, parental permission and age-appropriate patient assent should be required. Adolescents between 14 and 17 years of age are expected to have a more advanced degree of abstract thinking and the ability to do complex reasoning.4 Yet, impulse control and the appreciation of long-term consequences of their decisions may not develop for another decade.2–4 Once children reach age 14, they should be actively incorporated into the permission process together with their parents. As long as their capacity for decision-making is adequate, their assent must be obtained. We should only override their decision to refuse a therapy when risks of refusing the procedure are substantial.
In this case, the encounter with the anesthesiologist in the preoperative area has engendered conflict and contention. The 15-year-old patient objects to the recommendation that a thoracic epidural catheter be placed primarily for postoperative pain management. The advantages of epidural pain relief have been explained to the patient and family. The patient remains adamant in her refusal. She does not want a needle to be placed in her back.
I would explore with the patient the reasons for her concern. Has she heard of anyone with such complications or is this fear derived from talking with other patients on the floor during past hospitalizations? Perhaps her conviction concerning the largely unlikely risk of neurologic damage from the epidural needle is a reflection of not yet developed executive function and impulse control, the mark of adolescent brain development. Psychological determinants might also be operative. I would reassure her that the procedure under sedation with local anesthesia would be discontinued if she were in pain, and I would even offer to place the epidural after anesthesia had been induced when she would be completely unconscious.
Throughout this conversation, I would be aware of a key feature of most patients’ interactions with their anesthesiologists. The anesthesiologist is likely a stranger who the patient is meeting for the first time. There has been no time for a trusting therapeutic relationship to develop. I would seek the help of her long-standing oncologist or favorite nurse or social worker. They might help her gain greater insight as to the postoperative benefits of the epidural, even if her parents and grandfather, strong advocates of epidural analgesia, failed to do this. I would also present the option of other forms of regional anesthesia, such as a paravertebral or erector spinae nerve block, with catheter insertion, procedures that are also effective for postthoracotomy pain relief but that do not violate the spinal canal. She may reject these options too because they also involve the insertion of a needle in the back but not in the spine.
If the patient persists in her refusal, what are the anesthesiologist’s options? We should recognize that discussions with the goal of informing the patient can become inappropriately manipulative and may seem coercive. If she remains opposed to the epidural placement, the anesthesiologist is faced with an ethical and medical conundrum and is required to make a challenging decision. Is it appropriate to override her wishes, either by telling her that her objection would be overruled or by surreptitiously placing the epidural when she is asleep, claiming that her parents were acting in her best interest to avoid inadequate pain relief and resulting respiratory compromise resulting in direct harm? The decision to deny and disregard her developing autonomy and expressed preference will depend on the balance between the benefits of the procedure, namely, good pain control with less compromise of postoperative pulmonary function, and disrespecting the patient’s evolving autonomy and her trust in the medical system.
This patient has a disease that will require ongoing treatment. That seems to be a crucial aspect of the case. She will be interacting with the medical system, physicians, nurses, and therapists for her cancer therapy in the future. We would all pay a price down the road for not being truthful or respectful to her now. But all patients will likely have interactions with the health care system in the future. We would not be able to expect this patient, or anyone, to trust us ever again if we betray that trust now. That sacrifice of future trust might be worth it if the risks of refusing the epidural were serious. But they are not. We have other ways to control her pain. Those other methods should be used in this case. Her refusal of an epidural should be respected.
Robert D. Truog, MD, and Thomas J. Mancuso, MD, Comment
In our view, it would be wrong to place an epidural catheter in this young woman against her clearly expressed objections.
In caring for adults or mature adolescents, anesthesiologists prefer to place thoracic epidurals in awake or lightly sedated patients because they can better determine if the catheter is correctly positioned. Pediatric anesthesiologists regularly place thoracic epidural catheters in infants and young children after the induction of general anesthesia. This practice is well established because the risk of complications from this procedure is low compared with the benefits of better postoperative pain management and reduced postoperative respiratory complications.
Although an epidural would be medically beneficial, it is not medically necessary for the procedure to be successful. Postoperative analgesia could be provided with acetaminophen, nonsteroidal antiinflammatory drugs in many cases, and opioids, preferably via a patient-controlled analgesia device. These techniques are regularly employed when epidurals are not feasible, and indeed the control that she would have with a patient-controlled analgesia device could be appealing to her.
Because she is a minor, the ultimate legal authority to consent rests with her parents, who are obligated to make decisions on behalf of their children that best promote their child’s overall welfare. Given that the physicians have recommended an epidural and because the parents and grandparent all agree, why not just obtain their consent for the epidural to be placed under general anesthesia and proceed with the case?
If she were a younger child, perhaps <∼12 years of age, this is likely what would happen. In addition, if the situation were life-threatening and the intervention would be life-saving, then the consent of the parents would outweigh any objections that the patient might have. But at 15 years of age and with a procedure that is not absolutely necessary, we need to ask whether it is appropriate to obtain her assent before performing the procedure. If this were a research study, at this age, her assent would be an absolute requirement for her to be a research participant. But in the clinical context, no such regulations exist. Instead, doctors must decide whether assent is necessary or whether, instead, the parents’ requests ought to override the teenager’s refusal. Such decisions are necessarily context dependent.
Minors have 2 legal pathways for refusing treatment against the wishes of their parents. The first depends on whether they are legally emancipated. The criteria for emancipation are defined by state law, but they commonly include elements such as being in the armed forces or living independent from their parents. These criteria would not apply to this patient. The second is whether a judge determines her to be a “mature minor,” such that, in the opinion of the judge, she has reached her decision on the basis of sound and mature reasoning and, therefore, has the legal authority to refuse the procedure. Although mature minor laws also vary by state, this pathway would be at least a theoretical option in this case. Nevertheless, we believe there are sufficient reasons to respect her refusal of the procedure without requiring legal intervention.
Alyssa M. Burgart, MD, MA, and Danton Char, MD, Comment
Many anesthesiologists will find this case familiar: a patient who challenges a recommended plan and family members who hope to influence the patient’s decision, even to the point of requesting that clinicians act against a patient’s expressed wishes once anesthetized. This case highlights anesthesiologists’ need for knowledge of adolescent rights. It also illustrates the vital role of effective communication in anesthesiologists’ practice, especially in navigating family disagreement with an adolescent treatment refusal.
Anesthesiologists have a short period of time to build trust. During this time, they must communicate the range of anesthetic options, provide education for an informed decision, and navigate the social, emotional, and cognitive aspects of the shared decision-making process with adolescent patients and their parents. This case discussion illustrates these challenges. A discussion with this teenager and her parents would necessarily include discussion of the risk that epidural placement may be difficult or unsuccessful and its coverage incomplete, necessitating alternative pain management strategies. Although an epidural provides superior postthoracotomy pain relief and is protective against postoperative pneumonia,5 the relative benefit has decreased considerably with improved systemic analgesics and the rise of other regional anesthetic techniques.6 It might be worth asking this patient whether she would be amenable to a regional anesthetic still involving a needle but placed while she is under general anesthesia and not into her spinal column. Choosing to manage pain with systemic medications (which may happen anyway if the epidural does not work) is also safe. Reasonable adult patients have declined epidural placement in similar situations. Clinicians should not conflate treatment refusal with unreasonableness, irrationality, or lack of capacity for decision-making.
As neurotypical children age and their capacity for complex decisions increases, we move away from a best-interest approach based primarily in parental decision-making. We honor children’s developing autonomy by increasing the degree to which we include and rely on them for health care decisions.7 Generally, we should presume that 15-year-olds have the intellectual capacity to participate in complex assent and consent discussions unless they demonstrate otherwise. Also, increasing decision participation and autonomy improves self-care and resilience in pediatric patients who, like this adolescent, are facing chronic illness and cancer.8 Parents and physicians should seize opportunities to empower teenagers’ active participation in decision-making, especially as they near full legal consent authority.
The age at which adolescents have a legal right to consent to general medical care or situation-specific care differs across states.9 In states where adolescents have health care decisional autonomy for reproductive care, pregnant teenagers independently consent or refuse neuraxial anesthesia for delivery. Anesthesiologists and parents would not be permitted to override a valid refusal in such a context. However, even if this patient’s parents retain the legal authority to consent on her behalf, she retains the ethical right to assent. The American Academy of Pediatrics tells us, “Dissent by the pediatric patient should carry considerable weight when the proposed intervention is not essential and/or can be deferred without substantial risk.”3 The bar to justify overriding her refusal should be high.
Is it permissible to override an adolescent patient’s refusal of an elective procedure that has a risk of being unsuccessful and has serious (albeit rare) complications? The primary concern in the clinical discussion above appears to be with the risks to the patient if she does not have adequate pain relief. However, we must also seriously consider the risks to the patient if an epidural is placed while she is unconscious, against her clearly expressed refusal. It is certainly a violation of her bodily integrity and privacy. How can we simultaneously promote free consent for adolescents in other physical interactions, such as sex,10 and then flagrantly override her in a different scenario in which a stranger will touch her and she will be unable to protect herself? We can learn lessons from cases in obstetrics in which valid refusals of women were overridden,11 leading to significant, long-lasting emotional and psychological trauma, a warranted distrust of health care providers, and avoidance of future care. Any complication from the procedure will add further insult. Anesthetizing a patient capable of complex cognitive decision-making and then overriding her refusal of an elective procedure when safe alternatives exist is unacceptable.
Does the patient’s refusal stem from lack of insight due to her immaturity? The development of the brain’s reward and control system is known to affect adolescent decision-making.12 Adolescents differ from psychiatric patients in numerous ways. However, even in recent studies of psychiatric patients who refused indicated medication treatment, refusal more often stemmed from adverse experiences or reasonable concerns of harmful side effects than lack of insight due to their psychiatric illness.13 Ascribing this patient’s wishes to poor insight should be the conclusion only after excluding all others.
This case highlights the importance of empathetic communication in stressful conversations. The information-delivery approach is familiar to physicians but may miss important emotional cues, especially in young adults with cancer.14 The patient’s severe postoperative pain after her previous surgery may have been traumatizing, coloring her feelings about this surgery and anesthetic. Active exploration of the patient’s previous experience with surgery and pain control, as well as her current goals and expectations, can help more clearly frame the perioperative conversation.15 Additionally, simple methods, such as a “tell-back,” can be used to assess what the patient has gathered from a clinical conversation and identify knowledge gaps.16
The surgeon, with whom the patient likely has a previous relationship, is an important stakeholder not mentioned in this case. In a study of 762 patients, when a surgeon also recommended an epidural, the percentage of patients willing to accept it increased from 64% to 78.5%.17 Such results highlight the importance of the patient-surgeon-anesthesiologist triad and how clinicians may support each other in communicating complex information.
Lastly, when adolescents decline clinical recommendations, it is important that clinicians ensure they do not feel abandoned or left to suffer. Although it may be inconvenient and outside the normal anesthetic workflow, the patient should know that if she initially refuses the epidural and later experiences poorly controlled pain, she can still request an epidural.
John D. Lantos, MD, Comments
The parents, in this case, seem to clearly have their daughter’s best interest at heart. They understand her fears. They want to protect her from pain. They likely think that when she wakes up, she will be grateful to them for looking out for her interests and overriding her stated concerns. The doctors might be tempted to agree. But to do so would be wrong. If the teenager was refusing a life-saving procedure and seemed to be doing so for irrational reasons, a stronger case could be made that she lacked decisional capacity. This decision is not like that. She is choosing one effective form of treatment over another on the basis of her hopes, fears, values, and preferences. All the experts agree: her wishes must be respected.
All authors contributed to the design, drafting, and review of the manuscript and approved the final manuscript as submitted.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.