SCCM Resource Library-Parents Are Advocates and Their Opinions Supersede Medical Team Decisions

Video Transcription

Hello, good morning. My name is Vanessa Madrigal and I'm an attending in the Division of Pediatric  Critical Care Medicine at Children's National Hospital in Washington, DC. I'm also the Director  of the Ethics Program and Chair of the Clinical Ethics Committee. I am arguing today that  parents are advocates and their opinions supersede the medical team decisions. I have no conflicts  of interest. Some images were taken from the internet. No copyright infringement as  far as I'm aware. Let's focus first on parents are advocates and why they make the best advocates.  Parents are experts. They possess unique knowledge that enables them to recognize subtle changes  in behavior or temperament before even the most expert clinician. They have experience with  previous illness and are often found at the child's bedside. For families of children with  chronic illness and particularly those with neurologic impairment, they know their children  and their abilities to communicate their baseline behaviors and how those might be different from  other children. Parents make decisions in context. In context with their belief systems,  their values, and other family members. And often parents advocate for time. Time to see what  happens. Time to cope. Time to wrap their brain around this tragic outcome. Time to find meaning  for their ultimate loss or the many losses along the way. Parents hold an internal definition of  being a good parent. Good empirical data shows that parents have a lot of variation on what they  think being a good parent is all about. And if you don't ask, you won't know. Some parents describe  that being faithful and having a spiritual connection is important for being a good parent. Others report making informed and unselfish decisions in the child's best interest  is important. Some say remaining at the child's bedside, teaching the child to make good decisions,  or advocating for the child with staff and promoting child's health is important. Many parents agree that making sure my child feels loved is at the top of the list. And depending  on what their definition is, they may make decisions based on those internal definitions.  Perhaps they'll say yes to any intervention offered. Or perhaps they'll speak in hopeful language, even when and especially when the team makes it clear that they have lost hope.  I argue here today that parents make the best advocates because they have the best interest  of their child in mind. We place broad authority on parents for deciding what is best for their  children. We sometimes call it parental autonomy, and it's better phrased as parental authority,  and a modification from the four principles of bioethics from Beecham and Childress. And that  makes practical sense. Most children do grow up to have similar values as their parents,  though we often recognize that it is not absolute. And there are common examples we speak of with  refusal of blood products in life-threatening situations or in the case of child abuse are often discussed. So when is it justifiable or is it ever justifiable to override parental  authority when making decisions for a child when the medical team and the parents disagree  about what's in the child's best interest? And what I'll argue here today is even in some of  the most extreme cases that test our support for parental authority, we still have room for  parent advocacy superseding the medical decisions or the medical team's decisions. And we'll illustrate  here in a couple of cases that create somewhat of an artificial dichotomy for the purposes of this exploration. Emily is a nine-month-old female. She's admitted to the pediatric ICU  after a severe traumatic brain injury. She's also noted to have several rib fractures and retinal hemorrhages and has imaging that is consistent with severe neurologic injury.  Following two weeks, she still has no signs of improving her neurologic function,  and she qualifies for an exam for death by neurologic criteria. During this exam to  assess for death by neurologic criteria, Emily makes respiratory efforts. The parents are described  as the only caregivers, and the team learns that Child Protective Services has custody,  but the parents are still at the bedside and CPS defers to parents for end-of-life decision-making.  After a long conversation with the medical team where they were described the choices as some  loving parents in this situation allow for natural death and withdraw technical support,  and other loving parents choose technologies and life-sustaining therapies, the parents elect to  a tracheostomy and mechanical ventilation and G-tube placement. After this decision is made,  the team members express moral distress. They are worried that Emily is suffering. They are  concerned Emily will have a poor quality of life. They're also concerned about life-sustaining therapies, and they are not in the child's best interest. They're also concerned about  what is motivating the parents in this decision-making. Is it guilt, shame, or the threat of worse criminal charges? The three most important words in medicine,  tell me more. We learned from mom that she had a spinal cord injury about five years ago. She was  actually told at that time that she would never walk again and never have children again. She had  a lot of faith and worked very hard and shares that she beats the odds. We also learned from both  parents that say, I know she's in there and even when she never smiles or talks again, even if she  never smiles and talks again, she deserves our love. We will accept her and love her as she is. Parents share that Emily is also part of a large supportive family. Presumably,  if the parents lose custody, Emily will likely be able to go to another family member and receive  the support and love from an extended family. One of those extended family members is actually  present at many of the family meetings. This particular grandmother says, as long as there's  life, there is hope and we will love that baby no matter what. What do we learn about some of  the things that they're sharing with us? This doesn't dismiss the concerns that the decisions  are made out of guilt or shame or being overwhelmed or because of the fear of criminal charges, but  they also tell a different story. These parents would have possibly come to the conclusion of  tracheostomy and ventilation, even if Emily were to have had a neurologic outcome from some other  etiology, say an MBA or a stroke or an infection. Emily has a large family and decisions are being  made in the context of that family. We also learn from these conversations that there might be some  trust issues. Mom had shared before that she'd had her spinal cord injury and she had been given a  prognosis and it was a prognosis that was incorrect and she was able to overcome that poor  prognosis. Trauma-informed care shares with us and acknowledges the need to understand patient  life experiences in order to deliver effective care. We often talk about it in the context of  adverse child experiences or ACEs, but it can also be in the context of interfacing with the  healthcare team. How many times do we hear, they told me that my child is going to die, but here  we are. This understanding can help know where the family is coming from when they're making  medical decisions. In this particular case, what are these parents saying are in the child's best  interest and what are they thinking about? Why are they choosing to continue life-sustaining  treatments for Emily? They could be based on one of three hopes. First, maybe they hope and believe  that Emily might have a meaningful neurologic recovery. Two, they believe that Emily's quality  of life will be good enough even with profound disability. The three, they fear the criminal  implications for themselves if Emily were to die. One important take-home here is that we cannot  assume that these parents are not acting in Emily's best interest. Will continuing life-sustaining  therapies cause Emily harm? Perhaps. Is this harm acceptable under different conditions? For  example, the other etiologies we spoke of before, infection, stroke, we would offer those same  choices to those families. Would life-sustaining therapies allow any opportunity for Emily to  improve or give the family time? The American Academy of Pediatrics supports a decision on  life-sustaining medical treatment for a critically ill child injured as the result of abuse should  be made using the same criteria as those used for any critically ill child. They support  compassionate communication and even when the medical team might not agree with and even when  the neurodevelopmental impairments may be profound regardless of the cause, nature, and extent of  the child's injuries and the ongoing court proceedings, the parents and guardians should be treated with respect, compassion, and due consideration of privacy. Parent or guardian of  an abused child may have conflict of interest when decisions are being made and face legal  charge changes. If a physician suspects that a parent or guardian is not acting in a child's best interest, further review and consultation should be sought. A guardian ad litem is  recommended who will represent the child's interest regarding life-sustaining medical  therapies and should be appointed in all cases in which a parent or guardian may have a conflict  of interest. A few words on guardian ad litems. They are not the ultimate decision-makers. They  serve as an unbiased and compassionate advocate for the child's best interest. In most states,  the guardian collects information about the child's medical status, reviews law relevant  to the circumstances, and makes a recommendation to the judge. Ultimately, the judge makes the  final decision regarding withdrawal of life-sustaining therapy as in this case. Importantly, a guardian  ad litem remains a neutral party. Remember, the medical team may also not be the best advocate.  We are often shown to be quick to judge disability and poor neurologic outcomes.  People might think of an abandoned, bed-bound child and worry about taxpayer burden.  And we should recognize that prognosis is not always accurate. We place a lot of value judgments  about what defines good quality and meaningful life, and we place value in the life of child  based on those assessments. Increasing evidence shows that hypothetical positions the clinicians  make would change if they found themselves in the same position. We recognize increasingly  the disability paradox, where disabled individuals report high quality of life against all odds.  So here I'm trying to make the case that certainly the team should obtain guidance and outside counsel when there's a concern for conflict of interest. But even here,  in the most extreme circumstances, there is a role for parents as advocates and for recognizing that  their opinions might supersede medical team decisions. In this next case, we need Carl, a 21-year-old male. He has complex congenital heart disease and chronic respiratory failure  with a tracheostomy, G-tube dependence, and cognitive delay. He has an out-of-hospital unwitnessed cardiac arrest, believed to be secondary to a tracheostomy occlusion.  He has an unknown downtime. He has return of spontaneous circulation and was obtained by EMS.  He has severe brain injury, although his other organ systems recover in some time, and the team is preparing for discharge. His discharge needs are now full-time ventilation  and full assistance for all activities of daily living. His ability to cooperate and assist  has been lost. The team is advocating for discharge for Carl to a long-term care facility.  Mom has completed a 24-hour stay and insists that Carl will be better at home.  Let's examine these positions a little bit more closely, but the bottom line is that the team  and the mom is stuck. The care team feels that it will be very difficult for his mother to perform  all of the care needs. They have a realistic outlook on how difficult and challenging her  situation will be. It would give Carl the best chance to optimize health and prevent and mitigate  future illness for him to go to a long-term care facility. Risks of infection and death  bed sores and airway and ventilation complications are real. Mom's position is she has had relatives  who were neglected at similar facilities and fears that this will happen to Carl.  Also, visitation is not guaranteed. In the era of COVID-19, there have been many shutdowns of  visitation to similar facilities, and she very much worries about not being able to be there, advocate for him, and be part of his daily care.  She reports understanding the risk of taking Carl home and is willing to accept it.  So, here we discuss what's in Carl's best interest and who gets to decide.  Best interest often reports weighing the benefits and burdens of a decision,  and the standard provides sometimes insufficient guidance for decision-making regarding children because it does not reflect what we actually use, medical providers and the courts.  Specific issues with best interest include it's ill-defined and inconsistently appeal to and applied, it's unreasonably demanding and narrow, and it fails to respect the family.  The bottom line is the medical lens alone is not adequate to help make these decisions.  Let's weigh medical harms with the harms to Carl and his mom.  The harm principle is advocated by ethicists as a better way of analyzing the different decisions, and Doug Dekema described eight questions that you can use to help in guidance  when making a decision about overriding parental authority.  But let's here describe the harms to Carl and his mother a little bit more thoroughly.  Carl may be without his closest connection and strongest advocate for small periods of time or perhaps an extended period of time. Suboptimal care at some long-term facilities  is not a manufactured concern. He may deteriorate and die without allowing his mother to be at his  bedside. We should not assume that Carl's new neurologic deficits make him unable to experience  the comfort of his mother's presence. We do not have the proof that he will be physically  harmed at home despite anticipated challenges. Carl lived with his mother, and she has beaten  the odds to raise him to adulthood with relatively few complications. Mom has demonstrated extraordinary  commitment and competence in managing Carl's health. She is exquisitely attuned to Carl's  well-being. He is the center of her life, and despite the expected difficulties of providing care at home, it is not clear that mom could not rise to meet the challenges as she has  consistently done in the past. It is reasonable to assume that the worst thing that could happen  to this mom would be for her not to be with her son when he dies. Here, I've tried to shape the  argument that parents are advocates and their opinions supersede medical team decisions,  including with Carl and his mom. The medical team's concerns are warranted.  Here's where the question of time may help us out. A time-limited trial at home  could be warranted, and a plan for close follow-up and robust attempt to optimize conditions at home with outpatient appointments being made ahead of time  may help us understand what life is like at home now for Carl and his mom after these changes.  By way of conclusion, I'd like to share about the Courageous Parent Network. This was a non-profit started by a bereaved mother that has parent and provider voices available with  web-based collections and videos, blogs, podcasts, and printable guides. There was a publication  recently in Pediatrics by Blythe Lord, who was that bereaved parent with Wynne Moore, Chris Feutner, and others, that described the important lessons learned.  The power of stories for validation, healing, and understanding, an opportunity to extend the reach of pediatric palliative care through provider education and skill building,  meet critical importance of parent-provider advocacy collaboration. This network is terrific for not just parents, but also for all of us, and for all of us who are  not just parents, but also providers. I share here some references that I used during this presentation, and I thank you so much for your attention and your time,  and look forward to answering any questions.

Video Summary

In this video transcript, Vanessa Madrigal, a pediatric critical care specialist and director of the Ethics Program at Children's National Hospital, argues that parents are the best advocates for their children. She emphasizes that parents have unique knowledge and experience with their child's health, and their decisions are often made in the context of their values and beliefs. Madrigal highlights the importance of recognizing and respecting parents' internal definition of being a good parent. She presents two cases to illustrate the complex decision-making process when the medical team and parents disagree about what is best for the child. Madrigal asserts that even in extreme cases, parents' opinions should supersede medical team decisions, and that outside guidance and counsel should be sought in cases of conflict. She concludes by mentioning the Courageous Parent Network, a resource for parents and providers that promotes collaboration and understanding in pediatric care.

Asset Subtitle

Patient and Family Support, Pediatrics, 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 Patient and Family Support

Knowledge Area Pediatrics

Knowledge Level Intermediate

Knowledge Level Advanced

Membership Level Select

Tag Ethics and End of Life

Tag Pediatrics

Year 2022

Keywords

parents as advocates

unique parental knowledge

values and beliefs in decision-making

respecting parents' definition of good parenting

parental opinions vs medical team decisions

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