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Medical Decision-Making in Foster Care: Considerations for the Care of Children With Medical Complexity
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Medical Decision-Making in Foster Care: Considerations for the Care of Children with Medical Complexity Rebecca Seltzer MD, MHS , Jessica C. Raisanen MSPH , Trisha da Silva MD, MPH , Pamela K. Donohue ScD , Erin P. Williams MBE , Jennifer Shepard BSN, MBA , Renee D. Boss MD, MHS PII: DOI: Reference:
S1876-2859(19)30502-9 https://doi.org/10.1016/j.acap.2019.11.018 ACAP 1449
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Academic Pediatrics
Received date: Accepted date:
3 June 2019 28 November 2019
Please cite this article as: Rebecca Seltzer MD, MHS , Jessica C. Raisanen MSPH , Trisha da Silva MD, MPH , Pamela K. Donohue ScD , Erin P. Williams MBE , Jennifer Shepard BSN, MBA , Renee D. Boss MD, MHS , Medical Decision-Making in Foster Care: Considerations for the Care of Children with Medical Complexity, Academic Pediatrics (2019), doi: https://doi.org/10.1016/j.acap.2019.11.018
This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier Inc. on behalf of Academic Pediatric Association
Medical Decision-Making in Foster Care: Considerations for the Care of Children with Medical Complexity Rebecca Seltzer MD MHSa,[email protected], Jessica C. Raisanen MSPHb, Trisha da Silva MD MPHc, Pamela K. Donohue ScDa,c, Erin P. Williams MBEd, Jennifer Shepard BSN MBAa, Renee D. Boss MD MHSa,b a
Johns Hopkins University School of Medicine, Baltimore, Maryland; Berman Institute of Bioethics, Baltimore, Maryland c Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland d Columbia University Vagelos College of Physicians and Surgeons, New York, New York b
*
Correspondence Author: Rebecca R Seltzer, M.D., M.H.S., Division of General Pediatrics and Adolescent Medicine, Department of Pediatrics, Johns Hopkins University School of Medicine, David M Rubenstein Child Health Building, 200 N Wolfe Street, Room 2060, Baltimore, MD 21287, office: 443-287-8947 Keywords: foster care; medical decision-making; shared decision-making; children with medical complexity Abbreviations: CMC-Children with medical complexity, SDM-Shared decision-making , FCFoster care, PCP-Primary care physician, DFPS-Department of Family and Protective Services Short title: Medical Decision-Making for Children in Foster Care Abstract word count: 249 Main text word count: 3829 Funding: Dr. Seltzer was supported by the U.S. Department of Health and Human Services (HHS) under HRSA T32HP10025. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. The funding source had no role in the study design; collection, analysis, or interpretation of data; the writing of this article; or the decision to submit this article for publication. Conflicts of interest: The authors have no conflicts of interest relevant to this article to disclose.
Abstract Objective: To explore how medical decision-making for children with medical complexity (CMC) occurs in the context of foster care (FC).
Methods: Together with a medical FC agency, we identified 15 CMC in medical FC and recruited eligible care team members (biological and foster parents, medical FC nurses, caseworkers in medical FC/ child welfare, and pediatricians) for each child. Semi-structured interviews were conducted, and conventional content analysis was applied to transcripts. Results: 58 interviews were completed with 2-5 care team members/child. Serious decisionmaking related to surgeries and medical technology was common. Themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child’s interests: the majority of respondents stated that the foster parent represents the child’s best interests, while the child welfare agency should have legal decision-making authority, and 4) Perceived barriers: serious medical decision-making authority is often given to individuals who spend little time with the child. Conclusion: Medical decisions for CMC can have uncertain risk/benefit ratios. For CMC in FC, many individuals have roles in these nuanced decisions; those with ultimate decision-making authority may have minimal interaction with the child. Pediatricians can assist by clarifying who has legal decision-making authority, facilitating team communication to promote truly informed consent, and serving as a resource to decision-makers. Further research should explore how to adapt the traditional model of shared decision-making to meet the needs of this population.
What’s new This novel data provides insight into the protocols, processes, and challenges of decision-making for children with medical complexity in foster care. The dispersion of care and decisional
authority across many individuals differs from the traditional physician-parent model of shared decision-making.
Introduction There is a growing population of children with medical complexity (CMC), who receive care from multiple subspecialists, have functional limitations, and are often dependent on
medical technology.1-3 Due to their medical fragility, clinicians and families caring for CMC are faced with serious medical decisions about surgeries, invasive tests, and advance care planning. Typically, pediatricians engage with parents to make these decisions under the assumption that parents care for their child and can represent their best interests in the context of their family structure and values.4 Shared decision-making (SDM) is an interactive process where families and clinicians review, consider, and together agree on a treatment plan.5 SDM has been shown to improve parent knowledge and reduce decisional conflicts.6 Pediatricians are taught to collaborate with parents in SDM for all types of decisions, from routine to complex choices that lack clear riskbenefit ratios.5,7 But what does SDM look like when biological parents are not the individuals who are, or will be, caring for a child? Of the nearly 440,000 children in foster care (FC) in the US, an estimated 10% are medically complex.8,9 CMC who enter FC often require specialized medical FC with foster parents who receive additional training to meet the child’s individualized needs.10,11 We have previously shown that CMC in FC are at risk of remaining there for extended periods of time.12 Therefore, many medical decisions occur in the context of FC. Pediatricians must be able to facilitate decision-making and ensure proper consent is obtained for these patients. Very little is known about decision-making for CMC in FC—who is authorized to make decisions, what is the process, how are the child’s interests represented, what challenges arise? While legal guidelines exist, they can only partly guide the nuanced process of decision-making. We designed this qualitative study to address gaps in knowledge and assist pediatricians, across settings and specialties, in their care of CMC in FC.
Methods In collaboration with a state-wide medical FC agency, we identified a convenience sample of 15 CMC placed through their medical FC program and recruited up to 6 care team members for each child. Care team members interact with the child and/or are responsible for some aspect of their care, as previously described.13 Eligible participants included Englishspeaking foster parents, biological parents, child welfare caseworkers from the agency that has custody of the child, medical FC caseworkers and nurses from the medical FC agency that places the child, and primary care physicians (PCP). Participants on the care team for multiple children were eligible to be interviewed more than once to capture their experiences with each child. Semi-structured interviews were conducted in person or by telephone. Interview questions were tailored to care team member role and were drawn from literature regarding medical FC, pediatric medical decision-making, and pediatric medical complexity. Participants were asked about medical decision-making for children in FC in general and for the child specifically in their care (Table 1). Interviews were audiotaped and transcribed; participants received a copy for fact checking prior to analyses. Conventional content analysis was applied to interview transcripts.14 The authors initially coded transcripts individually, then met to discuss and compare codes. Any coding discrepancies were resolved as a group. Codes representing similar content were grouped into code families. Code families were then sorted and grouped into discreet themes that accounted for the relationships between the code families. Study approval was obtained from the Institutional Review Board and the state Social Services Administration. All participants provided informed consent. Results
Interviews were completed with 2 to 5 care team members (median=4) for each child. Due to overlap of care team members among the 15 children, 37 participants completed 58 interviews (15 medical FC caseworker interviews, 14 medical FC nurse interviews, 13 foster parent interviews, 12 child welfare worker interviews, 3 PCP interviews, and 1 biological parent interview). These children had a history of multiple procedures and surgeries that involved serious decision-making: Gastrostomy tube placement (n=13 children), hip surgery (n=3), ventriculoperitoneal shunt surgery (n=3), tracheostomy surgery (n=2), scoliosis surgery (n=2), cardiac catheterization (n=2), tendon release surgery (n=1), skin grafting (n=1), laser surgery (n=1), multi-organ transplantation (n=1), and cardiac surgery (n=1). Participants noted the need for decision-making/consent for anesthesia for additional diagnostic studies, such as MRIs and sedated hearing tests. Code status discussions were mentioned for 2 children. Ongoing team discussions included decisions about tracheostomy, colostomy, bone marrow transplant, and cardiac surgery. Additional data about medical, social, and placement characteristics for these 15 children has been previously published.13 The following themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child’s interests, and 4) Perceived barriers. Illustrative quotations below were edited for anonymity and clarity. Protocol of decision-making for CMC in FC Participants explained that decision-making authority is determined by the details of the court order, which pediatricians should review and are obligated to follow. If the biological
parents’ rights have not been terminated in court, then they retain authority to make medical decisions for their child. Often, courts grant limited guardianship to the child welfare agency, which allows them to share decision-making authority with the biological parent(s). When determining who is authorized to make a decision, the seriousness of the decision also matters (i.e., routine care vs. surgery vs. end-of-life care).
The foster parent is able to make basic decisions, make arrangements for appointments, also able to make referrals if need be. Just basic medical care. The bio parents usually come into play when there needs to be a surgery and there is anesthesia involved. So [his biological father] signs the paperwork for that. If for whatever reason he’s not available to do that, then [child welfare agency] signs. -Medical FC caseworker, child 3
For serious decisions made by the child welfare agency, there is a chain of command from the caseworker to supervisors to the director. If there is disagreement amongst parties (i.e., doctors, parents, child welfare) regarding a medical decision, the case is presented in court.
[If] there's a discrepancy where the doctor’s saying this surgery or this situation needs to be addressed, and the parents are completely against it, and the [child welfare] department is not against it, we would go to court. -Child welfare caseworker, child 11 Process of decision-making for CMC in FC
With so many different people involved in the child’s care team, the participants describe how information about a medical decision gets passed along from clinician to foster parent to various care team members via word of mouth or written communication before ultimately reaching the person legally authorized to make the decision. This can result in situations where the clinician never speaks directly with the authorized decision-maker.
The foster parent and the orthopedic doctor [discussed the surgery]. Then the foster parent relayed the information to us and gave us the documentation we needed to explain the surgery. And then that information was given to [the child welfare worker], who got in touch with the father, and it was discussed with him. And then he signed off on the surgery and for the anesthesia. -Medical FC caseworker, child 3
Participants describe how making a medical decision for CMC in FC is often a team decision. Care team members without legal authority contribute to decisions as informants, information gathers, and educators. Though many team members are involved in the decisionmaking process, they often rely on the doctors’ recommendation.
I think everybody in her care team plays a role in making those decisions, at least initially in discussing it, even if they're not signing the paperwork. -Child welfare caseworker, child 15
I'm involved in the discussions about certain treatments, but at the end of the day, we really just leave it up to the medical professionals. We trust their judgment -Medical FC caseworker, child 4
With the decision-making process dispersed among so many people, there can be delays in reaching a decision. Delays can occur if the legal decision-maker(s) are unavailable or team members disagree about the options. Such delays can negatively impact the child’s well-being.
You can't get a hold of [the child welfare agency] every time you need to. You can't get a hold of bio parents every time you need…Why should the child sit in limbo, needing a procedure, while you're waiting to get information from people? -Foster parent, child 12 People involved in caring for him were very clear that he needed a Gastrostomy-tube and his parents, who really had no responsibility regarding providing his care, really were insisting that he did not … it took a few months of a lot of back and forth and it took the court giving consent for procedure power into the hands of [child welfare agency], in order to get him scheduled for that surgery. -Medical FC nurse, child 11 Representing the child’s interests in decision-making Aside from the legal guidelines about who can make decisions, we wondered who participants thought should be allowed to make medical decisions and who could best represent the child’s interests (Figure 1).
In response to “who should be allowed to make medical decisions,” most responses (78%, n=45) named the child welfare agency; either solely (n=25) or in addition to other team members (n=20). The biological parent and foster parent were each named in 29% (n=17) of responses.
I believe as long as the parents are involved and [child welfare agency] is involved and [the parents’] rights have not been terminated then I believe that that is their right. I think that it is set up the way that it should be. Medical FC caseworker, child 5
His foster mom should have all the medical decision-making power because she has been involved with his care from day 1. She knows his care backwards, forwards. She is incredibly competent and cares very deeply about this child. PCP, child 7
In response to “who can represent the child’s interests most accurately?” 86% (n=50) of responses named the foster parent(s); either solely (n=37) or in addition to other care team members (n=13).
The foster mom because she knows him. She knows everything about him. She knows when he's happy, when he's sad, when something's bothering him. She knows him more than anybody else. -Medical FC nurse, child 3
It's a collaboration of people. I think that everybody on this team is really, really pro this child and really trying to do what's best for this child. -Child welfare caseworker, child 13
As noted above, there were discrepancies between who most participants believed should be legally allowed to make decisions vs. who best represents the child’s interests. For example, while all 13 foster parent interviews stated that they represent the child’s best interests, only 3 stated that they should be allowed to make serious decisions. Reasons given for this discrepancy included legality, liability, and foster parents’ temporary role.
Until the parental rights are terminated, I think it should be the [child welfare] worker and the bio parents. Legally, you wouldn't want the foster parents to be sued for anything on the decision-making. -Medical FC nurse, child 4 I don't think that I should make life-changing decisions for a child that's not biologically mine…I just don't think that we, as foster parents, should be taking that on, because we are foster parents. Foster parents are supposed to be temporary. -Foster parent, child 3
Perceived barriers to meaningful decision-making for CMC in FC Participants described barriers to meaningful decision-making, including how those with legal authority to make serious medical decisions often spend little time with the child (Figure 2).
These remote decision-makers may have little insight into the child’s lived experience of their illness. His [biological] parents are invited to all the appointments and stuff, but from what I hear they don’t show up. The person that’s there all the time is his foster parent. -Medical FC caseworker, child 8 I think you want the best decision made for the child, so whoever's making those decisions needs to be very informed on what that child's needs are and why you're making whatever decision you're making. Child welfare caseworker, child 15
Biological parents are described as variably involved in their child’s life. Those with consistent involvement are perceived to have a meaningful role in medical decisions. Most biological parents in this cohort were not actively involved and, though they may retain legal authority, are not perceived as meaningful decision-makers. Advance care planning can be particularly challenging in this context.
[The biological parents] pretty much understand what her issues are, and they were always there for the surgeries that she’s had in the past. -Foster parent, child 6 Bio parents are not always educated or in the best frame of mind to make these decisions, and if it's the case of abuse, then there is reason they're in care in the first place, and they probably aren't capable of making these decisions. -Child welfare caseworker, child 1
[The biological parents] wrote on a piece of paper that he was to have no CPR and they signed it. It got put in his chart and followed him around for 10 years. No surgeons would address his medical needs because he was no CPR…The child welfare agency lost touch with the parents…we had to go to court and get that paper rescinded by a judge. -PCP, child 15
Discussion While all children in FC are classified as a population with special health care needs15, there are unique considerations regarding care for those who are more medically complex. Due to their multiple medical conditions and intensive daily care needs, CMC face frequent medical decisions. These can range from routine decisions (ie. feed adjustments) to serious decisions complicated by medical ambiguity (ie. treatment escalation) that depend on patient and family preferences. For CMC not in FC, such decisions are shared between clinicians and parents, incorporating parents’ values about their child’s quality of life and best interests.7 It is important for pediatricians to also understand how decision-making occurs for CMC in FC. This study provides deeper insight into the protocols, processes, and challenges of decision-making for CMC in FC. It highlights how traditional models of SDM between parent and physician do not align with the legal and practical context of FC, creating potential gaps in meaningful decisions about surgeries, medical technologies, and advance care planning. Table 2 includes key questions/ steps to consider when navigating decision-making for children in foster care. Pediatricians who care for CMC should be aware that the person accompanying the child during appointments or hospitalizations is often not the legal decision-maker. Authority to make medical decisions depends on the court order and the seriousness of the decision. Clinicians can
determine who is authorized to make a specific decision by consulting with the hospital/clinic social worker or the child welfare caseworker. Such information should be clearly documented and updated over time in the child’s medical record, so that the medical team is aware of how decision-making should proceed. Pediatricians must recognize that, in addition to the person/entity with legal authority, multiple individuals are involved in the decision-making process. The dispersion of decisionmaking amongst team members means the clinician may not interact directly with the person authorized to make the ultimate decision. This system may be adequate for children in FC who need only routine medical care, but it can compromise the comprehensive counseling that clinicians are obligated to provide to those making high-stakes decisions. Rather than depending on the care team’s “game of telephone” to transmit information about the risks and benefits of a therapy, clinicians should make an effort to arrange care team conferences where all relevant parties can share information and reach consensus.16,17 As our participants discussed that delays in decision-making were largely due to difficulty reaching authorized decision-makers and conflicting opinions among decision-makers, effective care team conferences could also reduce some of these delays. Pediatricians should also recognize the weight that their recommendation can have for CMC in FC. Despite the involvement of many team members in the decision-making process, participants often viewed the clinician’s recommendation as “the decision.” While relying on a clinician’s expertise when faced with serious medical decisions is not unique to children in FC18,19, there is less potential for meaningful SDM if the caregiver at the bedside is not also the authorized decision-maker. Under the traditional model of SDM, clinicians are reliant on the parent(s) to voice their opinion and incorporate their goals for their child into the decision-
making process.5 This is less likely to occur for children in FC where the dispersion of care and decisional authority across many individuals may preclude emergence of one strong voice that represents the child. Pediatricians should be careful with the language they use when discussing treatment options, especially those without a clear risk/benefit ratio, as explaining a possible treatment option may be passed on to team members as “the doctor’s recommendation.” Under this structure, SDM may be unintentionally replaced with a model of physician authority/paternalism. Rather, the physician should ensure that the legal decisionmaker is not simply agreeing with their recommendation, but truly understands the risks, benefits, alternative options, and long-term impacts for the individual child. The informed consent process can be incorporated into the care team conferences. We typically expect a meaningful proxy decision-maker to be the person who spends the most time with the child, and subsequently has the richest understanding of the child’s medical needs and quality of life.4,20 But as noted in Figure 2 this rarely occurs for CMC in FC. Rather, the most serious decisions are made by individuals who typically spend little time with the child. Because CMC may remain in the child welfare system for much, if not all, of their childhood and require ongoing decisions about treatment escalation, there is a need to better align legal and meaningful decision-makers.12,21 One option is to grant legal status for decision-making to individuals who can more meaningfully represent the child’s best interests. This can occur via a court order that grants limited guardianship for medical decision-making to an adult who is a stable presence in the child’s life, such as a long-term medical foster parent or relative caregiver. The Department of Family and Protective Services (DFPS) in Texas is one example of an agency that actively designates an individual (i.e., foster parent, caseworker, relative) as the medical consenter to
make medical decisions for each child in the custody of DFPS.22 The medical consenter is required to attend annual trainings, attend all medical visits, stay in regular contact with DFPS regarding the child’s medical care, and consult with DFPS prior to giving consent for more invasive procedures and surgeries.22 Of note, such medical consenters are not able to consent to end-of-life decisions22; so authority for the most serious decisions remains separated from the person that has the most understanding of the child’s medical care. The American Academy of Pediatrics recommends that ethical and medical decisionmaking, including foregoing or limiting life-sustaining medical therapies, for children in foster care is guided by the same principles as for other children.23 This is complicated by the fact that legal decision-makers (ie. child welfare agency) for the child may lack familiarity and experience in making such decisions23, which can result in a discomfort or bias against limiting therapies. There is a need for structured protocols to be in place between the child welfare, legal, and medical systems when the question of life-sustaining medical therapies arises for CMC in foster care. Several states have detailed policies that can serve as examples.24-26 Medical team members and hospital ethics committees can serve an important role in providing guidance in such complex situations. For states that utilize guardian ad litems to represent the child’s best interests in court, they can play a crucial role when serious decisions arise and there is uncertainty about how to proceed or concern that the legal decision-maker has an inherent conflict of interest (e.g. a mother’s decision regarding withdrawal of life sustaining therapies would have implications for criminal abuse charges against her in court).23,27 Legal decision-makers should gain a better understanding of the challenges faced by CMC. Pediatricians across disciplines can partner with child welfare agencies and the legal system more broadly to educate them about the unique needs of CMC (i.e. common medical
conditions, advance care planning). There is also a need for experiential learning by spending time with the children on whose behalf they are making serious decisions (e.g., learning about the child’s intensive daily care needs and quality of life). PCPs and pediatric subspecialists could encourage legal decision-makers to be present at doctor’s appointments or more actively engage them in direct conversations about the child’s care. While our cohort of children was small, we were able to incorporate the perspectives of multiple team members who are involved in different aspects of the decision-making process for each child. This study has its limitations, including challenges recruiting biological parents and PCPs, which limits their important perspectives. The MFC agency lacked contact information for over half of the biological parents and 2 parents who agreed to participate did not follow through with multiple scheduled interview times, which reaffirms some of the challenges described when attempting to contact parents for decision-making. In regard to low PCP recruitment, 1 declined and the remainder did not respond to multiple recruitment attempts, potentially due to professional time constraints and our inability to specify the name of the child in our emails/ phone messages (in order to protect the child’s identify). In a future study, it would be beneficial to include the perspectives of judges, lawyers, and non-PCP providers (i.e. pediatric specialists, surgeons, anesthesiologists), who participants described as being part of the decision-making process. The study was conducted in one state; laws and practices regarding medical decisionmaking for children in FC may vary nationally and should be further explored. Conclusion Medical decision-making can be a challenge for all CMC, where the risk/benefit ratio for a given decision may not be clear. SDM is always a nuanced process whereby parents and clinicians work together to agree upon a decision that is in the individual child’s best interest.
For CMC in FC, where decision-making is dispersed among many individuals and the legal and meaningful decision-maker may not align, there is an added layer of complexity. In these situations where the traditional model of SDM does not fit, pediatricians must understand the decision-making protocols, practices, and challenges that are unique to this population. Once a pediatrician identifies that a patient is in FC, they can assist the decision-making process by clarifying who is legally authorized to make serious decisions, facilitate care team conferences with all relevant care team members to avoid delays in care, and serve as a resource to decisionmakers who may not be familiar with the needs of CMC in general or the specific needs of the individual child. Further research should explore how to adapt the traditional model of SDM to meet the needs of this population.
Acknowledgements: Thank you to Dr. Kathryn Neubauer and Dr. Silvana Barone for their assistance with data analysis. This work was supported by the U.S. Department of Health and Human Services (HHS) under HRSA T32HP10025 (Rebecca Seltzer). This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.
Table/Figure Legends: Table 1: Semi-Structured Interview Guide Script for Questions Related to Medical DecisionMaking Table 2: Key Considerations when Faced with Non-Routine Decisions for a Child in Foster Care Figure 1: Participant Responses to Questions Related to Decision-Making for Children in Foster Care Figure 2: Contact with Child vs. Decision-Making Authority
References
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medical complexity cannot be cared for by their families? Pediatr Res. 2016;79(1):191-196. 12. Seltzer RR, Johnson SB, Minkovitz CS. Medical complexity and placement outcomes for children in foster care. Child Youth Serv Rev. 2017;83:285-293. 13. Seltzer RR, Raisanen, JC, Williams, EP, et al. Exploring Medical Foster Care as a Placement Option for Children with Medical Complexity. Hosp Pediatr. 2019 Sep; 9(9): 697-706. 14. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288. 15. Szilagyi MA, Rosen DS, Rubin D, et al. Health Care Issues for Children and Adolescents in Foster Care and Kinship Care. Pediatrics. 2015;136(4):e1142-1166. 16. Fox D, Brittan M, Stille C. The Pediatric Inpatient Family Care Conference: a proposed structure toward shared decision-making. Hosp Pediatr. 2014;4(5):305-310. 17. Fineberg IC, Kawashima M, Asch SM. Communication with families facing life-threatening illness: a research-based model for family conferences. J Palliat Med. 2011;14(4):421-427. 18. Meert KL, Thurston CS, Sarnaik AP. End-of-life decision-making and satisfaction with care: parental perspectives. Pediatr Crit Care Med. 2000;1(2):179-185. 19. Brinchmann BS, Forde R, Nortvedt P. What matters to the parents? A qualitative study of parents' experiences with life-and-death decisions concerning their premature infants. Nurs Ethics. 2002;9(4):388-404. 20. Kopelman L. Using the Best-Interests Standard in Treatment Decisions for Young Children. In: Miller G, ed. Pediatric Bioethics. Cambridge: Cambridge University Press; 2009:22-37. 21. Seltzer RR, Dodge RAB, Boss RD. Medical Decision Making for Medically Complex Children in Foster Care: Who Knows the Child's Best Interests? J Clin Ethics.29(2):139-144. 22. Texas Department of Family and Protective Services. Form 2085-B, Designation of medical
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Figure 1: Participant Responses to Questions Related to Decision-Making for Children in Foster Care
100%
Percent of Participant Responses*
90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Foster parent
Biological parent
MFC agency Child welfare agency
Doctor
Whole team
Who do you think should be allowed to make medical decisions for this foster child? Who do you think is able to represent this foster child’s best interests most accurately? *Percentages add to more than 100% as some participants named multiple individuals/agencies in their response
Figure 2: Contact with Child vs. Decision-Making Authoritya
a
Frequency of contact with child is based off of study participants’ description of the roles and interactions of the various care team members with a particular child, which has been previously published in more detail 13. Error bars represent the range of participant responses regarding frequency of contact (i.e. some biological parents never saw their child, while others saw their child at weekly visits). Spectrum of decision-making authority was based on study participants’ description of their role and the role of other care team members in decision-making.
Table 1: Semi-Structured Interview Guide Script for Questions Related to Medical Decision-Making 1) What is your understanding about who is legally allowed to make medical decisions for children in foster care? 2) Who do you think should be legally allowed to make medical decisions for children in foster care? 3) Who is allowed to make medical decisions for this foster child? 4) Who do you think should be allowed to make medical decisions for this foster child, and why? 5) What role, if any, do you have in making medical decisions for this foster child? a.
If making any type of medical decision, then ASK: What types of medical decisions are you responsible for making for this foster child?
b.
Do you feel prepared in making such decisions for this foster child?
6) Have any serious medical decisions had to be made for this foster child while he/she was in your care?
By serious, we mean things like procedures, surgeries, significant changes in medical care needs or equipment. We do not mean routine things like doctor visits, vaccines, blood work, or management of the common cold. a. If YES i. Could you tell me more about that? ii. Who was involved in the discussions about this decision? iii. Is there anyone else that you think should have been involved? iv. Were there any conflicts in reaching a decision? b.
v. Who was responsible for making the ultimate decision? If No Any other experiences, either positive or challenging, related to medical decision-making for other medical foster care children you have cared for that you would like to share?
7) Who do you think is able to represent this foster child’s best interests most accurately? *If response here is different than response earlier regarding who should be able to make medical decisions, then ask: 7a) You mentioned that _(fill in person/s)__ is the person who can represent the child’s best interests, but earlier you said that __(fill in person/s)__ is who should make medical decisions. Can you explain why these are not the same people?
Table 2: Key Considerations when Faced with Non-Routine Decisions for a Child in Foster Care
What is the seriousness/uncertainty of decision under consideration? o e.g. Anesthesia for MRI vs. surgery for tracheostomy vs. withdrawal of care Confirm with hospital/clinic social worker or child welfare worker the following: o Have parental rights been terminated for the biological parents? If no, then biological parents typically retain medical decision-making rights and should be involved in discussions. o What is stated in the court order regarding decision-making authority for this child? A copy of court order should be reviewed and placed in medical record Once legal decision-maker(s) is confirmed, document information in the medical record: o The name and contact information for all legally authorized decision-makers should be documented, in addition to the order they should be contacted. e.g. “Contact biological mom first at [phone number]. If biological mom unable to be reached in [set amount of time], then contact child welfare worker at [phone number]. If child welfare worker cannot be reached in [set amount of time], then contact the child welfare agency supervisor/director at [phone number], etc.” Avoid the “game of telephone” between care team members o Ensure that the person(s) authorized to make medical decisions/ provide informed consent on behalf of the child is directly counseled by medical team about the risks, benefits, long-term impacts, and alternatives of the medical decision at hand. o Identify and seek input from other team members (i.e. foster parent, medical foster care nurse) that are actively involved in the child’s care and can speak to the child’s best interests. If there is any uncertainty about the decision at hand, invite these individuals, the legal decision-maker(s), and any relevant medical team members to
take part in a physician-facilitated care team conference. If team members cannot reach consensus on a decision, despite a care team conference where all information can be collectively discussed, then consider involvement of a hospital ethics or legal consult.
Medical Decision-Making in Foster Care: Considerations for the Care of Children with Medical Complexity Rebecca Seltzer MD, MHS , Jessica C. Raisanen MSPH , Trisha da Silva MD, MPH , Pamela K. Donohue ScD , Erin P. Williams MBE , Jennifer Shepard BSN, MBA , Renee D. Boss MD, MHS PII: DOI: Reference:
S1876-2859(19)30502-9 https://doi.org/10.1016/j.acap.2019.11.018 ACAP 1449
To appear in:
Academic Pediatrics
Received date: Accepted date:
3 June 2019 28 November 2019
Please cite this article as: Rebecca Seltzer MD, MHS , Jessica C. Raisanen MSPH , Trisha da Silva MD, MPH , Pamela K. Donohue ScD , Erin P. Williams MBE , Jennifer Shepard BSN, MBA , Renee D. Boss MD, MHS , Medical Decision-Making in Foster Care: Considerations for the Care of Children with Medical Complexity, Academic Pediatrics (2019), doi: https://doi.org/10.1016/j.acap.2019.11.018
This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier Inc. on behalf of Academic Pediatric Association
Medical Decision-Making in Foster Care: Considerations for the Care of Children with Medical Complexity Rebecca Seltzer MD MHSa,[email protected], Jessica C. Raisanen MSPHb, Trisha da Silva MD MPHc, Pamela K. Donohue ScDa,c, Erin P. Williams MBEd, Jennifer Shepard BSN MBAa, Renee D. Boss MD MHSa,b a
Johns Hopkins University School of Medicine, Baltimore, Maryland; Berman Institute of Bioethics, Baltimore, Maryland c Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland d Columbia University Vagelos College of Physicians and Surgeons, New York, New York b
*
Correspondence Author: Rebecca R Seltzer, M.D., M.H.S., Division of General Pediatrics and Adolescent Medicine, Department of Pediatrics, Johns Hopkins University School of Medicine, David M Rubenstein Child Health Building, 200 N Wolfe Street, Room 2060, Baltimore, MD 21287, office: 443-287-8947 Keywords: foster care; medical decision-making; shared decision-making; children with medical complexity Abbreviations: CMC-Children with medical complexity, SDM-Shared decision-making , FCFoster care, PCP-Primary care physician, DFPS-Department of Family and Protective Services Short title: Medical Decision-Making for Children in Foster Care Abstract word count: 249 Main text word count: 3829 Funding: Dr. Seltzer was supported by the U.S. Department of Health and Human Services (HHS) under HRSA T32HP10025. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. The funding source had no role in the study design; collection, analysis, or interpretation of data; the writing of this article; or the decision to submit this article for publication. Conflicts of interest: The authors have no conflicts of interest relevant to this article to disclose.
Abstract Objective: To explore how medical decision-making for children with medical complexity (CMC) occurs in the context of foster care (FC).
Methods: Together with a medical FC agency, we identified 15 CMC in medical FC and recruited eligible care team members (biological and foster parents, medical FC nurses, caseworkers in medical FC/ child welfare, and pediatricians) for each child. Semi-structured interviews were conducted, and conventional content analysis was applied to transcripts. Results: 58 interviews were completed with 2-5 care team members/child. Serious decisionmaking related to surgeries and medical technology was common. Themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child’s interests: the majority of respondents stated that the foster parent represents the child’s best interests, while the child welfare agency should have legal decision-making authority, and 4) Perceived barriers: serious medical decision-making authority is often given to individuals who spend little time with the child. Conclusion: Medical decisions for CMC can have uncertain risk/benefit ratios. For CMC in FC, many individuals have roles in these nuanced decisions; those with ultimate decision-making authority may have minimal interaction with the child. Pediatricians can assist by clarifying who has legal decision-making authority, facilitating team communication to promote truly informed consent, and serving as a resource to decision-makers. Further research should explore how to adapt the traditional model of shared decision-making to meet the needs of this population.
What’s new This novel data provides insight into the protocols, processes, and challenges of decision-making for children with medical complexity in foster care. The dispersion of care and decisional
authority across many individuals differs from the traditional physician-parent model of shared decision-making.
Introduction There is a growing population of children with medical complexity (CMC), who receive care from multiple subspecialists, have functional limitations, and are often dependent on
medical technology.1-3 Due to their medical fragility, clinicians and families caring for CMC are faced with serious medical decisions about surgeries, invasive tests, and advance care planning. Typically, pediatricians engage with parents to make these decisions under the assumption that parents care for their child and can represent their best interests in the context of their family structure and values.4 Shared decision-making (SDM) is an interactive process where families and clinicians review, consider, and together agree on a treatment plan.5 SDM has been shown to improve parent knowledge and reduce decisional conflicts.6 Pediatricians are taught to collaborate with parents in SDM for all types of decisions, from routine to complex choices that lack clear riskbenefit ratios.5,7 But what does SDM look like when biological parents are not the individuals who are, or will be, caring for a child? Of the nearly 440,000 children in foster care (FC) in the US, an estimated 10% are medically complex.8,9 CMC who enter FC often require specialized medical FC with foster parents who receive additional training to meet the child’s individualized needs.10,11 We have previously shown that CMC in FC are at risk of remaining there for extended periods of time.12 Therefore, many medical decisions occur in the context of FC. Pediatricians must be able to facilitate decision-making and ensure proper consent is obtained for these patients. Very little is known about decision-making for CMC in FC—who is authorized to make decisions, what is the process, how are the child’s interests represented, what challenges arise? While legal guidelines exist, they can only partly guide the nuanced process of decision-making. We designed this qualitative study to address gaps in knowledge and assist pediatricians, across settings and specialties, in their care of CMC in FC.
Methods In collaboration with a state-wide medical FC agency, we identified a convenience sample of 15 CMC placed through their medical FC program and recruited up to 6 care team members for each child. Care team members interact with the child and/or are responsible for some aspect of their care, as previously described.13 Eligible participants included Englishspeaking foster parents, biological parents, child welfare caseworkers from the agency that has custody of the child, medical FC caseworkers and nurses from the medical FC agency that places the child, and primary care physicians (PCP). Participants on the care team for multiple children were eligible to be interviewed more than once to capture their experiences with each child. Semi-structured interviews were conducted in person or by telephone. Interview questions were tailored to care team member role and were drawn from literature regarding medical FC, pediatric medical decision-making, and pediatric medical complexity. Participants were asked about medical decision-making for children in FC in general and for the child specifically in their care (Table 1). Interviews were audiotaped and transcribed; participants received a copy for fact checking prior to analyses. Conventional content analysis was applied to interview transcripts.14 The authors initially coded transcripts individually, then met to discuss and compare codes. Any coding discrepancies were resolved as a group. Codes representing similar content were grouped into code families. Code families were then sorted and grouped into discreet themes that accounted for the relationships between the code families. Study approval was obtained from the Institutional Review Board and the state Social Services Administration. All participants provided informed consent. Results
Interviews were completed with 2 to 5 care team members (median=4) for each child. Due to overlap of care team members among the 15 children, 37 participants completed 58 interviews (15 medical FC caseworker interviews, 14 medical FC nurse interviews, 13 foster parent interviews, 12 child welfare worker interviews, 3 PCP interviews, and 1 biological parent interview). These children had a history of multiple procedures and surgeries that involved serious decision-making: Gastrostomy tube placement (n=13 children), hip surgery (n=3), ventriculoperitoneal shunt surgery (n=3), tracheostomy surgery (n=2), scoliosis surgery (n=2), cardiac catheterization (n=2), tendon release surgery (n=1), skin grafting (n=1), laser surgery (n=1), multi-organ transplantation (n=1), and cardiac surgery (n=1). Participants noted the need for decision-making/consent for anesthesia for additional diagnostic studies, such as MRIs and sedated hearing tests. Code status discussions were mentioned for 2 children. Ongoing team discussions included decisions about tracheostomy, colostomy, bone marrow transplant, and cardiac surgery. Additional data about medical, social, and placement characteristics for these 15 children has been previously published.13 The following themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child’s interests, and 4) Perceived barriers. Illustrative quotations below were edited for anonymity and clarity. Protocol of decision-making for CMC in FC Participants explained that decision-making authority is determined by the details of the court order, which pediatricians should review and are obligated to follow. If the biological
parents’ rights have not been terminated in court, then they retain authority to make medical decisions for their child. Often, courts grant limited guardianship to the child welfare agency, which allows them to share decision-making authority with the biological parent(s). When determining who is authorized to make a decision, the seriousness of the decision also matters (i.e., routine care vs. surgery vs. end-of-life care).
The foster parent is able to make basic decisions, make arrangements for appointments, also able to make referrals if need be. Just basic medical care. The bio parents usually come into play when there needs to be a surgery and there is anesthesia involved. So [his biological father] signs the paperwork for that. If for whatever reason he’s not available to do that, then [child welfare agency] signs. -Medical FC caseworker, child 3
For serious decisions made by the child welfare agency, there is a chain of command from the caseworker to supervisors to the director. If there is disagreement amongst parties (i.e., doctors, parents, child welfare) regarding a medical decision, the case is presented in court.
[If] there's a discrepancy where the doctor’s saying this surgery or this situation needs to be addressed, and the parents are completely against it, and the [child welfare] department is not against it, we would go to court. -Child welfare caseworker, child 11 Process of decision-making for CMC in FC
With so many different people involved in the child’s care team, the participants describe how information about a medical decision gets passed along from clinician to foster parent to various care team members via word of mouth or written communication before ultimately reaching the person legally authorized to make the decision. This can result in situations where the clinician never speaks directly with the authorized decision-maker.
The foster parent and the orthopedic doctor [discussed the surgery]. Then the foster parent relayed the information to us and gave us the documentation we needed to explain the surgery. And then that information was given to [the child welfare worker], who got in touch with the father, and it was discussed with him. And then he signed off on the surgery and for the anesthesia. -Medical FC caseworker, child 3
Participants describe how making a medical decision for CMC in FC is often a team decision. Care team members without legal authority contribute to decisions as informants, information gathers, and educators. Though many team members are involved in the decisionmaking process, they often rely on the doctors’ recommendation.
I think everybody in her care team plays a role in making those decisions, at least initially in discussing it, even if they're not signing the paperwork. -Child welfare caseworker, child 15
I'm involved in the discussions about certain treatments, but at the end of the day, we really just leave it up to the medical professionals. We trust their judgment -Medical FC caseworker, child 4
With the decision-making process dispersed among so many people, there can be delays in reaching a decision. Delays can occur if the legal decision-maker(s) are unavailable or team members disagree about the options. Such delays can negatively impact the child’s well-being.
You can't get a hold of [the child welfare agency] every time you need to. You can't get a hold of bio parents every time you need…Why should the child sit in limbo, needing a procedure, while you're waiting to get information from people? -Foster parent, child 12 People involved in caring for him were very clear that he needed a Gastrostomy-tube and his parents, who really had no responsibility regarding providing his care, really were insisting that he did not … it took a few months of a lot of back and forth and it took the court giving consent for procedure power into the hands of [child welfare agency], in order to get him scheduled for that surgery. -Medical FC nurse, child 11 Representing the child’s interests in decision-making Aside from the legal guidelines about who can make decisions, we wondered who participants thought should be allowed to make medical decisions and who could best represent the child’s interests (Figure 1).
In response to “who should be allowed to make medical decisions,” most responses (78%, n=45) named the child welfare agency; either solely (n=25) or in addition to other team members (n=20). The biological parent and foster parent were each named in 29% (n=17) of responses.
I believe as long as the parents are involved and [child welfare agency] is involved and [the parents’] rights have not been terminated then I believe that that is their right. I think that it is set up the way that it should be. Medical FC caseworker, child 5
His foster mom should have all the medical decision-making power because she has been involved with his care from day 1. She knows his care backwards, forwards. She is incredibly competent and cares very deeply about this child. PCP, child 7
In response to “who can represent the child’s interests most accurately?” 86% (n=50) of responses named the foster parent(s); either solely (n=37) or in addition to other care team members (n=13).
The foster mom because she knows him. She knows everything about him. She knows when he's happy, when he's sad, when something's bothering him. She knows him more than anybody else. -Medical FC nurse, child 3
It's a collaboration of people. I think that everybody on this team is really, really pro this child and really trying to do what's best for this child. -Child welfare caseworker, child 13
As noted above, there were discrepancies between who most participants believed should be legally allowed to make decisions vs. who best represents the child’s interests. For example, while all 13 foster parent interviews stated that they represent the child’s best interests, only 3 stated that they should be allowed to make serious decisions. Reasons given for this discrepancy included legality, liability, and foster parents’ temporary role.
Until the parental rights are terminated, I think it should be the [child welfare] worker and the bio parents. Legally, you wouldn't want the foster parents to be sued for anything on the decision-making. -Medical FC nurse, child 4 I don't think that I should make life-changing decisions for a child that's not biologically mine…I just don't think that we, as foster parents, should be taking that on, because we are foster parents. Foster parents are supposed to be temporary. -Foster parent, child 3
Perceived barriers to meaningful decision-making for CMC in FC Participants described barriers to meaningful decision-making, including how those with legal authority to make serious medical decisions often spend little time with the child (Figure 2).
These remote decision-makers may have little insight into the child’s lived experience of their illness. His [biological] parents are invited to all the appointments and stuff, but from what I hear they don’t show up. The person that’s there all the time is his foster parent. -Medical FC caseworker, child 8 I think you want the best decision made for the child, so whoever's making those decisions needs to be very informed on what that child's needs are and why you're making whatever decision you're making. Child welfare caseworker, child 15
Biological parents are described as variably involved in their child’s life. Those with consistent involvement are perceived to have a meaningful role in medical decisions. Most biological parents in this cohort were not actively involved and, though they may retain legal authority, are not perceived as meaningful decision-makers. Advance care planning can be particularly challenging in this context.
[The biological parents] pretty much understand what her issues are, and they were always there for the surgeries that she’s had in the past. -Foster parent, child 6 Bio parents are not always educated or in the best frame of mind to make these decisions, and if it's the case of abuse, then there is reason they're in care in the first place, and they probably aren't capable of making these decisions. -Child welfare caseworker, child 1
[The biological parents] wrote on a piece of paper that he was to have no CPR and they signed it. It got put in his chart and followed him around for 10 years. No surgeons would address his medical needs because he was no CPR…The child welfare agency lost touch with the parents…we had to go to court and get that paper rescinded by a judge. -PCP, child 15
Discussion While all children in FC are classified as a population with special health care needs15, there are unique considerations regarding care for those who are more medically complex. Due to their multiple medical conditions and intensive daily care needs, CMC face frequent medical decisions. These can range from routine decisions (ie. feed adjustments) to serious decisions complicated by medical ambiguity (ie. treatment escalation) that depend on patient and family preferences. For CMC not in FC, such decisions are shared between clinicians and parents, incorporating parents’ values about their child’s quality of life and best interests.7 It is important for pediatricians to also understand how decision-making occurs for CMC in FC. This study provides deeper insight into the protocols, processes, and challenges of decision-making for CMC in FC. It highlights how traditional models of SDM between parent and physician do not align with the legal and practical context of FC, creating potential gaps in meaningful decisions about surgeries, medical technologies, and advance care planning. Table 2 includes key questions/ steps to consider when navigating decision-making for children in foster care. Pediatricians who care for CMC should be aware that the person accompanying the child during appointments or hospitalizations is often not the legal decision-maker. Authority to make medical decisions depends on the court order and the seriousness of the decision. Clinicians can
determine who is authorized to make a specific decision by consulting with the hospital/clinic social worker or the child welfare caseworker. Such information should be clearly documented and updated over time in the child’s medical record, so that the medical team is aware of how decision-making should proceed. Pediatricians must recognize that, in addition to the person/entity with legal authority, multiple individuals are involved in the decision-making process. The dispersion of decisionmaking amongst team members means the clinician may not interact directly with the person authorized to make the ultimate decision. This system may be adequate for children in FC who need only routine medical care, but it can compromise the comprehensive counseling that clinicians are obligated to provide to those making high-stakes decisions. Rather than depending on the care team’s “game of telephone” to transmit information about the risks and benefits of a therapy, clinicians should make an effort to arrange care team conferences where all relevant parties can share information and reach consensus.16,17 As our participants discussed that delays in decision-making were largely due to difficulty reaching authorized decision-makers and conflicting opinions among decision-makers, effective care team conferences could also reduce some of these delays. Pediatricians should also recognize the weight that their recommendation can have for CMC in FC. Despite the involvement of many team members in the decision-making process, participants often viewed the clinician’s recommendation as “the decision.” While relying on a clinician’s expertise when faced with serious medical decisions is not unique to children in FC18,19, there is less potential for meaningful SDM if the caregiver at the bedside is not also the authorized decision-maker. Under the traditional model of SDM, clinicians are reliant on the parent(s) to voice their opinion and incorporate their goals for their child into the decision-
making process.5 This is less likely to occur for children in FC where the dispersion of care and decisional authority across many individuals may preclude emergence of one strong voice that represents the child. Pediatricians should be careful with the language they use when discussing treatment options, especially those without a clear risk/benefit ratio, as explaining a possible treatment option may be passed on to team members as “the doctor’s recommendation.” Under this structure, SDM may be unintentionally replaced with a model of physician authority/paternalism. Rather, the physician should ensure that the legal decisionmaker is not simply agreeing with their recommendation, but truly understands the risks, benefits, alternative options, and long-term impacts for the individual child. The informed consent process can be incorporated into the care team conferences. We typically expect a meaningful proxy decision-maker to be the person who spends the most time with the child, and subsequently has the richest understanding of the child’s medical needs and quality of life.4,20 But as noted in Figure 2 this rarely occurs for CMC in FC. Rather, the most serious decisions are made by individuals who typically spend little time with the child. Because CMC may remain in the child welfare system for much, if not all, of their childhood and require ongoing decisions about treatment escalation, there is a need to better align legal and meaningful decision-makers.12,21 One option is to grant legal status for decision-making to individuals who can more meaningfully represent the child’s best interests. This can occur via a court order that grants limited guardianship for medical decision-making to an adult who is a stable presence in the child’s life, such as a long-term medical foster parent or relative caregiver. The Department of Family and Protective Services (DFPS) in Texas is one example of an agency that actively designates an individual (i.e., foster parent, caseworker, relative) as the medical consenter to
make medical decisions for each child in the custody of DFPS.22 The medical consenter is required to attend annual trainings, attend all medical visits, stay in regular contact with DFPS regarding the child’s medical care, and consult with DFPS prior to giving consent for more invasive procedures and surgeries.22 Of note, such medical consenters are not able to consent to end-of-life decisions22; so authority for the most serious decisions remains separated from the person that has the most understanding of the child’s medical care. The American Academy of Pediatrics recommends that ethical and medical decisionmaking, including foregoing or limiting life-sustaining medical therapies, for children in foster care is guided by the same principles as for other children.23 This is complicated by the fact that legal decision-makers (ie. child welfare agency) for the child may lack familiarity and experience in making such decisions23, which can result in a discomfort or bias against limiting therapies. There is a need for structured protocols to be in place between the child welfare, legal, and medical systems when the question of life-sustaining medical therapies arises for CMC in foster care. Several states have detailed policies that can serve as examples.24-26 Medical team members and hospital ethics committees can serve an important role in providing guidance in such complex situations. For states that utilize guardian ad litems to represent the child’s best interests in court, they can play a crucial role when serious decisions arise and there is uncertainty about how to proceed or concern that the legal decision-maker has an inherent conflict of interest (e.g. a mother’s decision regarding withdrawal of life sustaining therapies would have implications for criminal abuse charges against her in court).23,27 Legal decision-makers should gain a better understanding of the challenges faced by CMC. Pediatricians across disciplines can partner with child welfare agencies and the legal system more broadly to educate them about the unique needs of CMC (i.e. common medical
conditions, advance care planning). There is also a need for experiential learning by spending time with the children on whose behalf they are making serious decisions (e.g., learning about the child’s intensive daily care needs and quality of life). PCPs and pediatric subspecialists could encourage legal decision-makers to be present at doctor’s appointments or more actively engage them in direct conversations about the child’s care. While our cohort of children was small, we were able to incorporate the perspectives of multiple team members who are involved in different aspects of the decision-making process for each child. This study has its limitations, including challenges recruiting biological parents and PCPs, which limits their important perspectives. The MFC agency lacked contact information for over half of the biological parents and 2 parents who agreed to participate did not follow through with multiple scheduled interview times, which reaffirms some of the challenges described when attempting to contact parents for decision-making. In regard to low PCP recruitment, 1 declined and the remainder did not respond to multiple recruitment attempts, potentially due to professional time constraints and our inability to specify the name of the child in our emails/ phone messages (in order to protect the child’s identify). In a future study, it would be beneficial to include the perspectives of judges, lawyers, and non-PCP providers (i.e. pediatric specialists, surgeons, anesthesiologists), who participants described as being part of the decision-making process. The study was conducted in one state; laws and practices regarding medical decisionmaking for children in FC may vary nationally and should be further explored. Conclusion Medical decision-making can be a challenge for all CMC, where the risk/benefit ratio for a given decision may not be clear. SDM is always a nuanced process whereby parents and clinicians work together to agree upon a decision that is in the individual child’s best interest.
For CMC in FC, where decision-making is dispersed among many individuals and the legal and meaningful decision-maker may not align, there is an added layer of complexity. In these situations where the traditional model of SDM does not fit, pediatricians must understand the decision-making protocols, practices, and challenges that are unique to this population. Once a pediatrician identifies that a patient is in FC, they can assist the decision-making process by clarifying who is legally authorized to make serious decisions, facilitate care team conferences with all relevant care team members to avoid delays in care, and serve as a resource to decisionmakers who may not be familiar with the needs of CMC in general or the specific needs of the individual child. Further research should explore how to adapt the traditional model of SDM to meet the needs of this population.
Acknowledgements: Thank you to Dr. Kathryn Neubauer and Dr. Silvana Barone for their assistance with data analysis. This work was supported by the U.S. Department of Health and Human Services (HHS) under HRSA T32HP10025 (Rebecca Seltzer). This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.
Table/Figure Legends: Table 1: Semi-Structured Interview Guide Script for Questions Related to Medical DecisionMaking Table 2: Key Considerations when Faced with Non-Routine Decisions for a Child in Foster Care Figure 1: Participant Responses to Questions Related to Decision-Making for Children in Foster Care Figure 2: Contact with Child vs. Decision-Making Authority
References
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medical complexity cannot be cared for by their families? Pediatr Res. 2016;79(1):191-196. 12. Seltzer RR, Johnson SB, Minkovitz CS. Medical complexity and placement outcomes for children in foster care. Child Youth Serv Rev. 2017;83:285-293. 13. Seltzer RR, Raisanen, JC, Williams, EP, et al. Exploring Medical Foster Care as a Placement Option for Children with Medical Complexity. Hosp Pediatr. 2019 Sep; 9(9): 697-706. 14. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288. 15. Szilagyi MA, Rosen DS, Rubin D, et al. Health Care Issues for Children and Adolescents in Foster Care and Kinship Care. Pediatrics. 2015;136(4):e1142-1166. 16. Fox D, Brittan M, Stille C. The Pediatric Inpatient Family Care Conference: a proposed structure toward shared decision-making. Hosp Pediatr. 2014;4(5):305-310. 17. Fineberg IC, Kawashima M, Asch SM. Communication with families facing life-threatening illness: a research-based model for family conferences. J Palliat Med. 2011;14(4):421-427. 18. Meert KL, Thurston CS, Sarnaik AP. End-of-life decision-making and satisfaction with care: parental perspectives. Pediatr Crit Care Med. 2000;1(2):179-185. 19. Brinchmann BS, Forde R, Nortvedt P. What matters to the parents? A qualitative study of parents' experiences with life-and-death decisions concerning their premature infants. Nurs Ethics. 2002;9(4):388-404. 20. Kopelman L. Using the Best-Interests Standard in Treatment Decisions for Young Children. In: Miller G, ed. Pediatric Bioethics. Cambridge: Cambridge University Press; 2009:22-37. 21. Seltzer RR, Dodge RAB, Boss RD. Medical Decision Making for Medically Complex Children in Foster Care: Who Knows the Child's Best Interests? J Clin Ethics.29(2):139-144. 22. Texas Department of Family and Protective Services. Form 2085-B, Designation of medical
consenter. https://www.dfps.state.tx.us/Child_Protection/Medical_Services/Medical_Consenter.asp. Published 2011. Accessed May 10, 2019. 23. Weise KL, Okun AL, Carter BS, et al. Guidance on Forgoing Life-Sustaining Medical Treatment. Pediatrics. 2017;140(3). 24. Texas Department of Family and Protective Services. Child Protective Services Handbook: End of Life Medical Decisions. https://www.dfps.state.tx.us/handbooks/CPS/Files/CPS_pg_x11200.asp#CPS_11720. Published 2017. Accessed November 10, 2019. 25. Minnesota Department of Human Services. Policy on Allow Natural Death/Do Not Resuscitate (AND/DNR) or Other End-of-life Care Orders for Children Under Guardianship of the Commissioner. https://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&Revi sionSelectionMethod=LatestReleased&dDocName=dhs16_170173. Published 2019. Accessed November 10, 2019. 26. West Virginia Department of Health and Human Services, Bureau for Children and Families. Foster Care Policy: Section 5.7 Consents. https://dhhr.wv.gov/HealthCheck/fostercare/Documents/Foster%20Care%20Policy%20Chafee% 20Updates%206-1-18.pdf. Published 2018. Accessed November 22, 2019. 27. Mann PC, Weiss EM, Seltzer RR, Dodge RAB, Boss RD, Lantos JD. Child Abuse, Incarceration, and Decisions About Life-sustaining Treatment. Pediatrics. 2018;142(6).
Figure 1: Participant Responses to Questions Related to Decision-Making for Children in Foster Care
100%
Percent of Participant Responses*
90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Foster parent
Biological parent
MFC agency Child welfare agency
Doctor
Whole team
Who do you think should be allowed to make medical decisions for this foster child? Who do you think is able to represent this foster child’s best interests most accurately? *Percentages add to more than 100% as some participants named multiple individuals/agencies in their response
Figure 2: Contact with Child vs. Decision-Making Authoritya
a
Frequency of contact with child is based off of study participants’ description of the roles and interactions of the various care team members with a particular child, which has been previously published in more detail 13. Error bars represent the range of participant responses regarding frequency of contact (i.e. some biological parents never saw their child, while others saw their child at weekly visits). Spectrum of decision-making authority was based on study participants’ description of their role and the role of other care team members in decision-making.
Table 1: Semi-Structured Interview Guide Script for Questions Related to Medical Decision-Making 1) What is your understanding about who is legally allowed to make medical decisions for children in foster care? 2) Who do you think should be legally allowed to make medical decisions for children in foster care? 3) Who is allowed to make medical decisions for this foster child? 4) Who do you think should be allowed to make medical decisions for this foster child, and why? 5) What role, if any, do you have in making medical decisions for this foster child? a.
If making any type of medical decision, then ASK: What types of medical decisions are you responsible for making for this foster child?
b.
Do you feel prepared in making such decisions for this foster child?
6) Have any serious medical decisions had to be made for this foster child while he/she was in your care?
By serious, we mean things like procedures, surgeries, significant changes in medical care needs or equipment. We do not mean routine things like doctor visits, vaccines, blood work, or management of the common cold. a. If YES i. Could you tell me more about that? ii. Who was involved in the discussions about this decision? iii. Is there anyone else that you think should have been involved? iv. Were there any conflicts in reaching a decision? b.
v. Who was responsible for making the ultimate decision? If No Any other experiences, either positive or challenging, related to medical decision-making for other medical foster care children you have cared for that you would like to share?
7) Who do you think is able to represent this foster child’s best interests most accurately? *If response here is different than response earlier regarding who should be able to make medical decisions, then ask: 7a) You mentioned that _(fill in person/s)__ is the person who can represent the child’s best interests, but earlier you said that __(fill in person/s)__ is who should make medical decisions. Can you explain why these are not the same people?
Table 2: Key Considerations when Faced with Non-Routine Decisions for a Child in Foster Care
What is the seriousness/uncertainty of decision under consideration? o e.g. Anesthesia for MRI vs. surgery for tracheostomy vs. withdrawal of care Confirm with hospital/clinic social worker or child welfare worker the following: o Have parental rights been terminated for the biological parents? If no, then biological parents typically retain medical decision-making rights and should be involved in discussions. o What is stated in the court order regarding decision-making authority for this child? A copy of court order should be reviewed and placed in medical record Once legal decision-maker(s) is confirmed, document information in the medical record: o The name and contact information for all legally authorized decision-makers should be documented, in addition to the order they should be contacted. e.g. “Contact biological mom first at [phone number]. If biological mom unable to be reached in [set amount of time], then contact child welfare worker at [phone number]. If child welfare worker cannot be reached in [set amount of time], then contact the child welfare agency supervisor/director at [phone number], etc.” Avoid the “game of telephone” between care team members o Ensure that the person(s) authorized to make medical decisions/ provide informed consent on behalf of the child is directly counseled by medical team about the risks, benefits, long-term impacts, and alternatives of the medical decision at hand. o Identify and seek input from other team members (i.e. foster parent, medical foster care nurse) that are actively involved in the child’s care and can speak to the child’s best interests. If there is any uncertainty about the decision at hand, invite these individuals, the legal decision-maker(s), and any relevant medical team members to
take part in a physician-facilitated care team conference. If team members cannot reach consensus on a decision, despite a care team conference where all information can be collectively discussed, then consider involvement of a hospital ethics or legal consult.