SCCM Resource Library-Families Are Often Adversaries, Putting Personal Needs Above the Child's Best Interests

Video Transcription

Thank you for joining the session today to consider the family's role in medical decision-making for critically ill children.  My name is Erin Pickett, and I'm a pediatric intensivist and ethicist at the Ann and Robert H. Lurie Children's Hospital of Chicago and Northwestern University Feinberg School of  Medicine. I'll be discussing how families are often adversaries, putting personal needs above the child's best interests.  I have funding from the NIH-NICHD to work on research related to disparities in engagement of diverse populations in research, and from the Health Resources Administration to work  on education and social determinants of health, neither of which is related to today's discussion. I have no other conflicts of interest or disclosures to report.  I'll be discussing families from the standpoint of two cases that Dr. Madrigal also will be considering from a different perspective.  If you've seen her presentation, you'll recall the first case is about a young infant, Emily,  a nine-month-old admitted to the PICU with severe traumatic brain injury, rib fractures, and retinal hemorrhages. Her parents have been her only noted caregivers.  Given her injuries, DCFS referral was made early in her course and took custody. Police have been involved in investigating the parents.  Emily didn't show signs of improving during her first two weeks of PICU care, prompting an examination to assess for death by neurologic criteria.  On the apnea portion of this exam, she made inefficient but definitive respiratory efforts.  Following evaluation, a team meeting was held with the medical team, DCFS, and the parents. At that meeting, the team shared that many families could elect for redirection of care  in this situation, while others might choose continued mechanical support. DCFS indicated they would defer to the parents for end-of-life decision-making.  The parents elected to pursue tracheostomy and mechanical ventilation and G2 placement. Medical team members have expressed concern about the parents' role in decision-making  and Emily's expected quality of life. Mom shares in other interviews with the team that she has experienced a spinal cord injury  in the past for which she recovered, despite a grim prognosis. She also reports a large supportive family and recognition that Emily's life will now  be limited, but she wants to love and support her, even with required technology. She reports being, quote-unquote, unfazed by technologies, but she admits that she has  not met anyone with a tracheostomy ventilator or G2. Her goals are to get Emily home to her extended family, stating, I know she's in there, and  even if she never smiles or talks, she deserves love and support. She reports that she would accept her child however she is.  Her grandmother tells her, as long as there's life, there's hope. We'll love that baby no matter what.  So there are some key questions that arise in Emily's case, which highlights the epitome of a situation in which families are set up to be adversaries with the clinical team rather  than collaborators. Where the parents are the only caregivers for an injured child, the likelihood that  one or both parents is responsible for the child's injury increases significantly. In these situations, clinical teams find themselves struggling with questions, including should  the parents who are suspected of perpetrating a child's injury be permitted to participate in medical decision-making for that child?  And do the parents' self-interest in avoiding their potential for more aggravated criminal charges impair their ability to participate in decision-making?  The core question is really, can parents in this situation make decisions that are in the child's best interests?  Gregorian et al. studied the empirical question of what actually happens with children who suffer traumatic brain injury from non-accidental versus accidental causes.  They found that contrary to their expectations, having non-accidental trauma as the etiology  for brain injury actually increased the odds for withdrawal of life-sustaining therapies, suggesting that decision-makers were not making decisions to use life-sustaining therapies  in order to avoid aggravated criminal charges. We're still left with the question then, if parents are making these decisions, can they make them in the best interest of the child?  And in order to answer those questions, we have to understand what conceptions are of the best interest standard and whether parents in this situation can be appropriately making  decisions under those formulations. There are two broadly accepted formulations of the best interest standard.  The first was formulated by Buchanan and Brock in 1989, which indicated that the best interest standard was acting to promote maximally the good of the individual.  And when he presented his standard in 1997, Professor Koppelman indicated that state intervention  should only occur when parental decision-making falls below a certain threshold, where they should aspire to promote the maximal good, but their decisions should not be touched  if they were above this threshold. Another formulation of the best interest standard indicates that it should balance benefit and  burden, and that the standard is met if a reasonable person weighing relevant factors could demonstrate a net balance of benefit for a given intervention.  In this formulation, state intervention only occurs when no reasonable parent could have weighed the same considerations and come to a similar conclusion of net benefit over burden.  You can see that these two standards can result in different outcomes for parents that may be making decisions or clinical teams that may be considering decisions under them.  If one is working to promote maximally the good of the individual, there's only a singular best outcome that can result in this maximal good.  However, if one is working under the formulation of balancing burden and benefit, then this standard can be met with multiple good enough outcomes.  Sometimes when the clinical team is operating under one standard and the parent is operating  under another, we come to different potential outcomes that each is advocating for, generating tension where it appears that the family is adverse to the clinical team.  If these weren't enough, others have advocated for different conceptions of the best interest standard.  Gillum advocated for a zone of parental discretion, which is the ethically protected space where  parents can legitimately make decisions for their children, even if these decisions are suboptimal for those children, meaning not absolutely the best for them, but above a  certain threshold. Lainey Ross advocated that parents owe a positive duty to respect their children by providing  for goods and liberties that permit them to develop, and a negative duty not to violate their basic interests.  This negative component reflects a threshold below which the state could intervene if parents were making decisions that fell below meeting those basic needs.  Otherwise, under Dr. Ross's formulation, there is parental discretion for good enough decisions.  Finally, Doug Diekma argued for a harm principle that the state should only intervene when the balance of burden and benefit tips to where the burden is greater than benefit.  And here, parents should not be allowed to make decisions. But if parents are above this threshold, then they should be granted wide latitude in their decision making.  Each of these formulations accommodate multiple possible outcomes where taking into account others' interests would be permissible.  It's important to recognize these different formulations because they argue that ethically, it can be appropriate for parents or others involved in the decision making process to  bring in the interests of others into that decision making framework, as long as a reasonable person could say that the benefit to burden ratio was in the favor of benefit for the  option chosen. Others have argued that the best interest standard doesn't capture all ethical ways  to consider decision making for children who have severe neurologic impairment, as is the case in the situation we're faced with in Emily's case.  Under a relational potential standard, Whiteman has built on the work of Eris in arguing that  the presence or absence of the ability to form relationships with others should be determinative in medical decision making.  Eris initially required a threshold level of cognition in order to qualify for having that relationship with others.  Whiteman has argued that the capacity for caring relationships to form, even if apparently one-sided, bears consideration in medical decisions.  Under this formulation, threshold cognition is not a requirement, and as long as harms to the child, such as pain, are limited and avoided, preserving caring relationships can  be worthwhile if one side of the relationship desires to pursue that continued relationship. So applied to the case here, if the parent would want to continue their relationship  to their child with continued mechanical support, even if the child was unable to reciprocate  in that relationship, the relational potential standard would argue that one could ethically justify that continued support as long as harms to the child were minimized.  So returning to our case and reflecting on these different decision-making standards, it's clear that the majority of decision-making standards leave room for parental incorporation  of factors that are beyond the child's self-serving interests. That is, most theories do not rely on a single maximizing principle with one possible outcome.  And even if many reasonable parents would choose to forgo life-sustaining therapies in this situation, some reasonable parents may choose to continue them.  And so these parents, even where there is suspected involvement in the injury of the child, may be making a reasonable decision that another reasonable parent could make  to pursue continued life-sustaining therapies. In fact, we've argued that parents should not be excluded from decision-making, even  if their decisions or their motivations could be perceived as adversarial in cases of non-accidental trauma.  There's a presumption in these cases that the parent's ability to choose in the best interest of the child is undermined when they're the suspected perpetrators.  However, if the parents are not decision-makers and decision-making falls to the state, state  decision-making under their parent's patriae function may not result in a different outcome. Many times in these cases, the state, when forced to make a decision about whether to  terminate or continue life-sustaining measures, will lean towards preservation of life. And so relying on the state for involvement in these cases does not necessarily result  in the same decision that a clinical team might recommend. Furthermore, the AAP recommends continued involvement of the parents and preserving  whatever parent-child relationship exists will tend towards allowing the consideration of multiple different options for the child when the interests of the parents, as well  as the parent's perspective on the interests of the child, are included in that decision-making process.  In these cases, where there is a concern that parents are acting as adversaries, petitioning  the court to appoint a guardian ad litem can be helpful to identify the specific interests of the child and to advocate that they are provided for in the decision-making process.  It's important to recognize that in these cases, while it may be difficult to yield toward parental decision-making, particularly with severely neurologically expected to be  severely neurologically impaired patients, that there is known discordance between clinicians and parents or patients' perceptions on quality of life with neurologic disability.  82% of physicians would not want to be kept alive in chronic unresponsive wakefulness syndrome or a vegetative state, whereas 70% of physicians would not want to be kept alive  in a minimally conscious state. However, patient families often choose to continue life-sustaining medical treatment  in these circumstances, and discordance in these views often leads to the family being perceived as an adversary when really it reflects a difference in values and opinions between  the clinical team and the parent. And for preference-sensitive decisions that are subject to values, leaning more towards  parental decision-making is important where this can be argued to be a reasonable outcome that someone would choose for this child.  It's important to recognize that any time preference-sensitive decisions come into play, the potential for bias to play a role is there.  And so, clinicians may have biases against disabilities, but also could have bias against particular sociodemographics or religious groups or cultural practices that could lead  to families who advocate for these practices being perceived as adversarial to the clinical team.  Families can also appear as adversaries when they refuse recommended care for a patient. So a second case helps us to consider this situation.  Carl, if you'll recall if you watched Dr. Madrigal's presentation, is a 21-year-old with history of complex congenital heart disease, chronic respiratory failure, who has had a  tracheostomy, is G-tube dependent, and has cognitive delay, who was admitted to the cardiac  intensive care unit following an out-of-hospital unwitnessed cardiac arrest, thought to be secondary to an initial respiratory arrest from tracheostomy occlusion.  He had an unknown downtime, and although there was return of spontaneous circulation by EMS, he demonstrated severe brain injury on presentation to the cardiac intensive care unit.  After a several-week hospitalization, the team is preparing for Carl's discharge. His needs now include full-time ventilation and full assistance for activities of daily living.  His ability to cooperate and assist with these functions, which he was doing prior to this admission, has been lost.  The medical team explores discharge options and is advocating to discharge Carl to a long-term  care facility, expressing that they feel it will be difficult for his mother, who is also his legal guardian, to continue to perform all of the care that he needs.  His mother has completed a 24-hour stay in the hospital and insists that Carl will be better at home with her, as she has had other family members who have been in long-term  care facilities and suffered untoward events. The medical team, however, questions whether Carl's best interests can possibly be served at home.  In this case, as in the last one, it's appropriate to start by asking the question, what is the appropriate decision-making standard for this patient, and is the family acting  in a way that forwards this decision-making standard?  For individuals who are over 18 years old, which Carl is, who had previously reached capacity, meaning that they had gotten to the age of capacity and they had enough cognitive  capabilities to express their preferences, a substituted judgment standard would be used. In this standard, we would ask, what would the individual have wanted if they were able  to articulate a preference in this situation? For those who are over 18 years old, who have either never reached capacity or who  have lost capacity and whose wishes are unknown, then the best interest standard still applies.  So in Carl's case, he had significant cognitive delay and never reached full capacity for  decision-making, which would place his standard for decision-making as the best interest standard.  Recall, however, that when Carl's clinical team and his mother are considering what is in his best interest, the team may be guided by trying to find the singular best interest  of maximization of good for Carl, while his parent, his mother, may be weighing the different factors in different disposition options and deciding that the balance of benefits and  burdens is best met with Carl being at home. When she holds this viewpoint and the team holds a viewpoint of wanting to proceed with  a singular best outcome, her approach is going to necessarily be seen as adversarial. However, in trying to meet this approach, Carl's parent may be trying to exercise what  she believes to be being a good parent for her son reflects. Dr. Tessie October and colleagues examined themes reflective of being a good parent from  parents of children who were hospitalized in the Pediatric Intensive Care Unit, finding 12 key themes, which are demonstrated on this slide.  They also asked parents how clinical teams could help them achieve their good parent role and the parental desire to be allowed to parent their child by assisting in daily  care activities was the only new theme that emerged from their work building on prior work of what it means to be a good parent.  In the current case, Carl's mother's desire to want to continue to care for her child at home may motivate and fulfill her role in being a good parent by caring for her child  and performing those activities of daily living. It also may allow her to meet other good parent ideals, such as staying by her child's side,  even if it is not in the situation that promotes Carl potentially living as long as possible  if there's a higher likelihood of complications occurring at home, or of her being unable to perform all of the care that Carl requires.  And so while her approach at first may appear adversarial, for her, it may be reflecting her desire to be a good parent to Carl.  All of the situations in which questions arise between parents either refusing or demanding  care and more on the side of demanding care that clinical teams feel might be inappropriate, the question of how physicians should balance their obligation towards stewardship with  caring for the individual patient comes up. And physicians and clinical teams may experience this tension quite sharply when they feel  families are insisting on care, they do not feel as beneficial to the patient. When families pursue or request these treatments that cannot achieve their stated goals, then  it's important for clinical teams to be transparent about the fact that the family's goals can't  be achieved through the methods that they are requesting, and the treatment should be discouraged from the physician team, recognizing that ultimately, the decision making may still  rest with the parent. The joint statement made by several critical care and the Thoracic Society organizations  addresses how to respond to requests for potentially inappropriate treatments in intensive care,  laying out several steps for resolving conflicts that may occur when early discussions and transparency about whether certain approaches can meet the goals of families is not, does  not direct families in a way that seems to be in the best interest of the child and reflective of adequate stewardship of resources.  These cases as well, in which parents insist on potentially inappropriate care, challenge the bedside nurses and other care providers who spend much time with these patients, which  could lead to difficulty with staffing of primary nurses for patients that may have an impact on that child's overall care in the PICU, and can also result in significant  moral distress for nurses and other care providers. In responding to moral distress, it's been noted that it's important to not only describe  the phenomenon occurring, but to specifically test actions and find solutions that will prevent care that's deemed futile, which we now refer to as potentially inappropriate,  as well as to protect and defend nurses from the pain and powerlessness and participation in such care that appears to be harming the patient.  I think steps towards meeting these goals include permitting nurses to abstain from cases in which they feel the care may not be appropriate for the child, provided that  that child has adequate care that is able to be provided by alternative nursing staff. Additionally, paying particular attention to responding to pain and addressing pain  of or harms to the child, if there are requests for continued mechanical support is critically important to reducing distress on the part of providers.  We talk often in pediatrics about the role for shared decision-making in helping families to make decisions.  Douglas Opel laid out a four-step framework for shared decision-making in pediatrics, but this starts with the first question of, does the decision include more than one potentially  reasonable option? If it does not, then shared decision-making is not necessarily a tool that is indicated  or will be helpful, and the discussion has to be more about whether that one option ought to be pursued or not.  When there is more than one medically reasonable option, then one can turn, depending on how  preference-sensitive the decision is, towards whether the decision will be more guided by the parent or directed by the clinical team.  It's important, however, when clinicians are playing a role in shared decision-making with families in these situations to recognize that conflict really generally only arises  when the parent disagrees with the clinical team assessment. Parents are often perceived as advocates when they agree with the recommendations of the  clinical team and adversaries when they disagree, but we have to recognize that clinical team assessments may be influenced by biases, values, preferences, and other interests  such as stewardship. When conceptualizing the parent approach, clinical teams must attempt to mitigate those  biases, values, and preferences that are not directly involved in objective assessment  of the patient likelihood of benefit and burden, instead deferring to parent values and preferences,  understanding these, and helping the family to work towards assessing whether those goals can be met or not.  Rather than perceiving the parent as adversary, the clinical team should work to understand whether the seemingly adversary behaviors of a parent are really reflective of other  parental goals for their child. Thank you for your participation in today's session. I'm happy to answer any questions.

Video Summary

In this session, Dr. Erin Pickett discusses the role of families in medical decision-making for critically ill children. She presents two cases that highlight situations where families may be seen as adversaries rather than collaborators with the clinical team. The first case involves a young infant with severe injuries whose parents are suspected of causing the harm. Despite concerns from the medical team, the parents choose to pursue aggressive treatment. The second case involves a 21-year-old with complex medical needs whose mother insists on caring for him at home, against the recommendation of the medical team. Dr. Pickett explores different decision-making standards, such as the best interest standard and the relational potential standard, and emphasizes the importance of including parents' perspectives and values in decision-making. She also acknowledges the potential for bias and suggests ways for clinical teams to address conflicts and moral distress. Ultimately, she argues that parents should not be excluded from decision-making, even in difficult cases.

Asset Subtitle

Ethics End of Life, Pediatrics, Patient and Family Support, 2022

Asset Caption

Children with medical complexity have an increased risk of experiencing adverse health outcomes related to multiple comorbidities, the complicated nature of their care, and frequent interactions with the healthcare system. Parents of these children are often the strongest advocates for their medical care. However, sometimes the parents' desires are in direct conflict with the medical team's opinion with respect to medical interventions required, meaningful and purposeful outcomes, quality of life, and end-of-life decisions. This session will discuss the challenges when parents and the medical team disagree on a patient's best interests.

Meta Tag

Content Type Presentation

Knowledge Area Ethics End of Life

Knowledge Area Pediatrics

Knowledge Area Patient and Family Support

Knowledge Level Intermediate

Knowledge Level Advanced

Membership Level Select

Tag Medical Legal Issues

Tag Pediatrics

Year 2022

Keywords

families

medical decision-making

critically ill children

adversaries

collaborators

clinical team

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