Pediatric Discharge From the Emergency Department Against Medical Advice

A two-month-old African American infant presents to the emergency department (ED) with a one-day history of fever to 38.6°. The infant’s mother, an administrative assistant at a local elementary school, is upset that the day care provider had not notified her of the fever before pick-up. Previously healthy, the infant was born term and his vaccinations are up to date. He is alert, responsive to physical examination, and breastfeeding well. He is breathing comfortably on room air with normal oxygen saturations. His blood draw took 2 attempts and then an additional attempt after the specimen clotted. Resultant complete blood cell count and procalcitonin were reassuring, indicating a low risk of a serious bacterial infection. Blood culture was also obtained.

The ED nurse attempts to catheterize the infant to obtain a urine specimen. During unsuccessful attempts, she mutters “this is why baby boys should be circumcised.” Suddenly the crying infant begins to urinate, but the nurse is unable to catch it in the collection cup. She tells the mother to breastfeed and that she will come back in an hour to try again. The frustrated mother states that she is willing for the nurse to place a bag but will not allow another catherization.

The physician introduces himself and initially expresses empathy, describing himself as a father who would be likewise upset with the circumstances for his child. He states that urinary tract infections (UTIs) represent a common cause of serious bacterial infection in this age group, making urinalysis a key component in a full fever workup. He adds that the infant has “aged out of automatically requiring cerebrospinal fluid.” The mother voices her concern about the upsetting aspects of care, including repeated blood draws and catheterization attempts, both of which have caused her infant substantial pain. The infant’s mother requests that a bag be used instead. The physician discourages this approach as “not the gold standard.”

The mother attributes her son’s fever to “new day care germs,” again asking to skip the urinalysis; her older son had fevers at this same age and his pediatrician did not request a urine sample. Inwardly ruminating about the ever-present prospect of a malpractice suit, the physician explains his concern for undiagnosed fever in infants, describing a recent episode when he discharged a seemingly well-appearing infant home from the ED and the infant returned in urosepsis. The mother requests a list of symptoms that warrant immediate return, and emphasizes her willingness to see her pediatrician the next morning and drive back to the ED sooner, if needed.

The physician reiterates his concern, explaining that an undiagnosed UTI could herald an unappreciated structural anomaly, which could lead to long-term renal damage. This resonates with the mother, because her own father is on dialysis. She offers to permit an ultrasound of her infant’s urinary tract, seeing this as noninvasive compared with repeating the catheterization. The physician clarifies that potential chronic issues are not medically relevant at this time but that catheterization is imperative.

Frustrated, the infant’s mom asks under what circumstances they could skip the catheterization. The physician states that he would consider discharge without urinalysis if her son were circumcised, citing lower UTI rates with circumcised male infants and concluding that urinalysis is essential for thorough workup. The infant’s mother states that none of her 3 sons are circumcised, nor have any ever had a UTI.

The mother then picks up the diaper bag and expressively states her intention to go home because it is getting late and a neighbor is watching her other children. She expresses frustration about already being in the ED “for five hours with too many needle sticks and cath pokes.” The physician apologizes for the wait but describes the catheterization plan as nonnegotiable for the infant’s safety and states that if the mom leaves now, she will be required to sign out against medical advice (AMA). The physician leaves the room and loudly tells the nurse “if the angry mother in room 7 refuses cath she’ll need to sign AMA,” which the patient’s mother overhears through the examination room door.

Is requiring the parent to sign DAMA an ethically justifiable discharge plan?

The mother and ED physician do not disagree about whether harm should be avoided, but rather about what evaluation and treatment is in his best interest. Their perspectives are informed by their lived experiences: the mother’s by her health care experiences with her older sons and the physician’s by his experience with other patients. The best interest for the child is to protect his well-being and safety, which requires integrating developmental and relational considerations into the clinical considerations. Multiple attempts of painful procedures may compete with the child’s developmental best interest of comfort and sense of his caregiver’s protective presence. Current interests (health, safety, social concern for child care for the patient’s siblings, and exhaustion) and future interests (pending medical bill and formation of family’s trust in health system) should be considered by the care team. The ways in which race, gender, and power dynamics may add bias or influence provider perceptions of best interest deserve additional consideration.¹ 

Clinically, this case warrants an accurate appraisal of harms and benefits to the child. UTI represents the second-most common serious bacterial infection in this age cohort,²  but a meta-analysis of 14 studies of febrile infants showed that the pooled prevalence of UTI in his age cohort is low.³  There is an approximately threefold relative decreased risk of UTI among circumcised boys^3,4 ; however, additional risk factors such as previous UTI, temperature elevation and duration, ill appearance, and other potential fever sources (eg, rhinorrhea and cough) factor into the diagnosis likelihood ratio.⁵  In this case, a UTI is possible but not highly likely. With ready access to return to health care, death or long-term negative medical consequences from a UTI would be unlikely in this clinical case.

Professional practice standards, including evidence-based guidelines that align with safe assessment in this clinical scenario,^6,7  can guide medical management and foster fairness across settings, avoid the confusion this mother experienced because of its contrast with her older son's fever workup, and help prevent individual practitioners' availability bias⁸  (such as this provider’s memory of the infant who returned with urosepsis) from creeping into medical decisions.

Additional harms of the encounter should be considered: relational, in jeopardizing therapeutic trust; familial, in siblings now with a neighbor being separated from their routines for an extended time in the setting of delayed care; developmental, in the infant’s exposure to painful procedures without adequate consideration of soothing interventions; financial, in the mother’s health care coverage not fully reimbursing the ER visit; and psychological, in systematic perpetuation of judgment against an African American mother.

Several sources of stigmatization arise in this case: the family choice about circumcision, the labeling of the mother as angry, and DAMA as a potentially racialized approach to conflict resolution. In this case, the nurse’s preference for nontherapeutic male circumcision may add further bias. Although there are some health benefits to circumcision, established clinical practice guidelines state that those benefits “are not great enough to recommend routine circumcision for all male newborns.”⁹  Circumcision remains a choice highly influenced by culture, individual preferences, and access to insurance, with lower incidence in African American families and a higher incidence among those with private insurance.^10,11  In this scenario, the physician labeled the mother as “angry” rather than reasonably reframing her concerns as “caring” or “advocating.” This interpretation of her behavior adds further stigma or racialized dehumanizing from the care team. The demand that patients or their caregivers sign a form documenting DAMA disproportionately burdens African Americans,^12,13  as does Child Protective Services (CPS) reporting,¹⁴  with resultant perception of disrespect or unfair treatment.¹⁵ 

Although the mother and physician disagree about her son’s best interests, her position is reasonable and voiced with emotion and clarity. She seeks consistency in care for her son, expresses willingness to monitor closely and return whenever needed, and demonstrates insight into the real risks associated with fever in an infant. Although the physician may not believe that this course of action is in the patient’s best interest, this is not a sufficient basis for intervention. Referral to CPS is not predicated on failure to do what is in the child’s best interest but on harm. Relevant factors include (1) the refusal places the child at imminent, significant risk of serious harm; (2) the intervention is anticipated to prevent this harm; (3) a less intrusive but equal benefit alternative is not available; and (4) the benefits of the intervention outweigh the harm of restricting parental decision-making or choice.¹⁶  Based on his risk factors and clinical presentation, obtaining a bag specimen with less reliable results or discharging with close follow-up do not place this infant at imminent and significant risk of serious harm.

Pediatricians have a duty to protect children. Sometimes, a parent’s request for discharge represents medical neglect or risks harm, at which time discharge is not a safe option, hence safety and survival can justify overriding parental decisions. In this scenario, however, unnecessary suffering may be endured and a therapeutic relationship may be harmed by not considering alternatives such as a bagged urine specimen or omission of urine with a safe plan for return to care and close follow-up for this relatively low-risk infant.

DAMAs, in which a patient leaves the hospital before a clinically specified and physician-recommended endpoint, are associated with worse health and health services outcomes.¹⁷  Although they are a relatively low-frequency epidemiological phenomenon occurring in ∼1.5% of all pediatric inpatient discharges,¹⁸  they generate an outsized frustration for many health care professionals and families.

DAMAs are a particularly useful phenomenon to scrutinize if we conceptualize them as an extreme representation of the more general challenges when patients or parents disengage or disagree with health care providers. In some cases, a DAMA serves as a physician’s formalized solution to a conflict over treatment planning. What makes these encounters unique is not the presence of disagreement in a clinical relationship but rather the potential for stigmatization of that conflict and challenges to productively negotiate. This stigma includes both the application of the DAMA label, which can propagate bias in the medical record, and the use of a patient’s or surrogate’s signature on a DAMA form that formalizes and documents the disagreement.¹⁹ 

This formalization is problematic for a number of reasons. First, there is no clear regulatory or clinical consensus about what constitutes a DAMA, which leads to low-value care marked by variability in clinical practice and insufficient transparency.²⁰  This variability is particularly important because adult patients with a DAMA report decreased willingness to return for care, in part mediated by stigma and blame from their treatment team.¹⁵ 

Second, this formalization of disagreement is neither patient- nor family-centered. Although the DAMA form is a widespread clinical practice and may be motivated by a perceived protection against malpractice, it has never been established as an evidence-based risk communication tool nor has it been shown to reduce liability or advance patient care. Moreover, the form is inconsistently applied across the spectrum of care (eg, it is not routinely used in the outpatient setting when care is declined), and often uses stigmatizing and contractual language and requests for waivers of liability that can misinform and undermine the voluntariness of informed consent.^21,22 

Fundamentally, requesting a parent’s signature to decline recommended care upends the role and process of informed consent, which is that a family caregiver is acting on their right to decline a treatment of the child until such time as they assert their right to accept it. Therefore, requiring a parent’s signature simply to decline a recommended treatment or procedure is inconsistent with the ethical principles of informed consent and further stigmatizes the process.

Even with due consideration of the above position, thoughtful and committed clinicians may have reasoned rationales for designating discharges as DAMA and using an AMA form. Rather than simply being a bureaucratic exercise, the disagreements in a DAMA process often require clinicians to spend significant time and effort engaging the patient and family in discussions about their health and the benefits of further hospitalization. A clinician’s recommendation for hospitalization often originates from and is motivated by a deep professional obligation to promote a patient’s well-being. Other clinicians may be constrained by institutional policy that requires specific DAMA processes when patients and families disagree about continued hospitalization. In these cases, clinicians can advocate for discharge practices and policies that do not interfere with fulfilling the promise of patient- and family-centered care.

Decisions about hospital discharge, like any other clinical decision in which there is a discussion of family preference-sensitive options, should be guided by the model of shared decision-making. Shared decision-making is a process by which physicians explicitly compare the medically acceptable options using evidence-based risks and benefits and elicit the family’s preferences and interests to help decide together which option is best.

Although physicians can still clearly recommend the option that in their professional judgment best promotes the patient’s health (eg, urinalysis to complete the fever workup), families have diverse values and preferences that may make other medically acceptable options preferable to them. In this case, the clinician should identify and present the fullest possible range of available treatment options that are in accord with broadly accepted standards of medical practice. If leaving the hospital without further evaluation poses a serious and imminent harm to the child, then the physician has to consider whether such a choice constitutes medical neglect, and draw in the appropriate resources to assist in promoting the child’s safety.

A physician can begin by asking what the “good enough” options are given the circumstances, the clinical uncertainty, and the disagreement at hand. Would accommodating the parent’s choice to bring the child home constitute neglect or violate a clear, authoritative medical standard? This may help move from an ethically problematic DAMA to saying “I recommend your child undergo a repeat catheterization because I think that it will give us the most information to keep your child safe, but I can tell you care about your son and I want be helpful. Let’s work together to find a treatment plan your family can live with.”

From a legal perspective, signed DAMA forms are a variation on informed consent documents. Both are mainly reserved for fairly consequential decisions, and both serve 2 main purposes: (1) to reinforce for patients the physician's description of risks and benefits and, in the process, to solemnize the importance of the decision; and (2) to serve as evidence in case the patient later contests the adequacy of those disclosures.

Neither document is fool-proof for the latter purpose. A signed form is simply evidence that a conversation happened, nothing more. A consent form signed by a half-sedated patient being wheeled into the operating room provides little support for the adequacy of the physician's disclosures. A signed DAMA is of limited value if the patient had inadequate opportunity to discuss reasons for resisting medical recommendations or to evaluate alternatives. In both situations, physicians need to enter a careful note in the medical record explaining medical recommendations and their supporting reasons plus, when the patient declines, his or her expressed concerns and any efforts to resolve the problem.

As with informed consent and patients’ acceptance or refusal of proposed treatment, patients in the ED cannot be legally required to sign a DAMA form and, notwithstanding providers' right to urge them to remain and be treated, patients are free to depart at will (barring, eg, a temporary psychiatric hold or the like).

Moreover, when patients decline recommendations in settings outside the ED they are rarely required to sign a document other than, for example, for pediatric vaccine refusal.²³  The physician simply notes the decision and reasoning in the medical record. Accordingly, patients and parents may feel that an ED demand to sign a DAMA treats them as an adversary. DAMA can thus exacerbate the very conflict that needs a more amicable resolution.

In this scenario, malpractice fears likely shadow the physician’s thinking. But a distinction is needed. Does he fear committing malpractice, or being sued for malpractice? If he truly believes foregoing urinalysis constitutes serious malpractice, and that significant and irreversible harm may occur, then he should contact CPS. But that is not at stake here. Rather, he fears unfair litigation if mother leaves and the infant fares poorly. That fear is largely misdirected. Patients most commonly sue, not for an adverse outcome, but from anger: often, the anger of feeling disrespected or dismissed. Good communication, rather than heightened testing, is the more effective preventive for malpractice suits.

Hence, as this mother and physician spiral downward as adversaries, collaborative problem-solving would be a far superior approach, and it will require serious conflict resolution strategies. Fundamentally: we cannot effectively solve a problem until we know what, really, the problem is; we will not understand a problem until the parties are willing to share their underlying concerns; and forging an effective, durable resolution requires focusing on the problem, rather than on each other.

All this requires building mutual trust. Somewhere in the past, “Trust me – I'm a doctor” and “I'm his mother so I know what's best” sufficed to elicit trust. These mantras are now insufficient. Here, the two come together as strangers. For the mother, this doctor's recommendation inexplicably differs from a previous doctor's under similar circumstances. For the physician, this mother's resistance to further catheter attempts feels too close to a previous negative experience.

The physician needs to earn the mother's trust because, unless the need for catheter is dire enough to warrant CPS or police, the mother is in fact free to leave, albeit now with a bad experience that may jeopardize her future willingness to seek care. Reciprocally, the mother needs to earn the physician's trust because his willingness to forego further catheter attempts requires that he believe she is able and willing to respond appropriately if symptoms worsen.

Building that trust requires both to actually listen to each other, not merely maintain polite silence while thinking up one's next retort. When people feel genuinely heard, they are far more willing to negotiate. That listening begins with eliciting parties' underlying needs and worries, as distinct from their overt demands.

The mother’s likely concerns include sparing her son further pain; wondering why this doctor's demand does not match previous experience; deciding whether she can still trust the day care; worrying about the neighbor minding the other children; fearing that the ED staff regard her under a negative stereotype (eg, “angry Black woman”); and fearing they will call CPS if she does not relent.

The physician’s likely concerns include recollections of other parents who seemed appropriate but failed to monitor as required; fear of lawsuit; recognition that clinical practice guidelines improve health care overall, even if not in every instance; and perhaps resentment of parents who challenge his medical judgment.

Specifically, listening actively requires repeating back a good summary of what the other person has said, inquiring further about that message, and acknowledging the value of what the other has shared. It says, “I'm really paying attention, and it matters to me that I understand where you're coming from.”

Beyond this, collaborative problem-solving requires that we “focus on the problem, not the people.”²⁴  Here, both are “focusing on the people” as each wonders why the other is so obstinate and unreasonable. Focusing instead on the problem(s) requires pinpointing key risks to avoid and outcomes to achieve; identifying diverse avenues by which those objectives might be accomplished; and discerning what actions, by whom, will be needed for each such avenue to succeed. Here, the key problems include either ruling out infection now or ensuring deterioration will be quickly detected; minimizing further distress for the infant; limiting adverse impacts on others such as neighbors and other family members; and so on.

Once they have genuinely listened to each other and identified the specific problems to be addressed, mother and physician might agree to any of several options: one more catheter attempt, this time by someone with greater experience or expertise; or mother leaves after committing to phone the ED with a progress report at a specified time, alongside agreement that she will return immediately on specified indications; or some other approach that will minimize the chance of surprise urosepsis while permitting the mother to safeguard the infant and minimize his pain even while honoring her broader needs as a mother who needs to minimize imposition on neighbors while caring for her entire family.

The nurse overhears the patient’s mother then calling the neighbor, clarifying that she is trying to get home to her other children because she knows her neighbor is late for a night shift and requesting child care for a pediatrician follow-up appointment the next day. The physician continues to insist that the mother sign a DAMA form, which would be scanned into the infant’s medical record. He then documents clearly in his encounter note that the benefits, potential harms, and alternatives to discharge without urine specimen were described to the parent who left without his medical endorsement.

This case’s social dynamics are complex. The mother is very reasonable, the nurse allowed her frustration to show, and the physician’s justification is insufficient. The nurse and physician’s actions may also be influenced by implicit bias. One can nonetheless imagine variations in which the infant might be at a significantly greater risk of death or serious disability, but not at sufficient risk to constitute medical neglect. The provider might try to engage in shared decision-making, acknowledge the mother’s emotions, and identify medically acceptable alternatives that address her underlying interests without success. The question then becomes whether asking her to sign a DAMA form is likely to improve or exacerbate the situation; will asking her to sign the form help her better understand the implications of the decision and change her mind, or will it further alienate her, making it less likely that she will seek medical attention for her son if his condition worsens or when he becomes ill in the future? Although the answer to this question is very context dependent, in many cases, the potential risks of asking her to sign a DAMA form may outweigh the potential benefits.

AMA

against medical advice

CPS

Child Protective Services

DAMA

discharge against medical advice

ED

emergency department

UTI

urinary tract infection