Toward an Understanding of AdvanceCare Planning in Children WithMedical ComplexityJulia Orkin, MD, MSc,a,b,c Laura Beaune, MSW,c Clara Moore, MSc,a,c Natalie Weiser, MA,a Danielle Arje, MSc,a,d

Adam Rapoport, MD, MSc,b,e,f Kathy Netten, MSW,a Sherri Adams, NP,a,c,g Eyal Cohen, MD, MSc,a,b,c Reshma Amin, MD, MScb,c,h

abstractBACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high riskfor morbidity and mortality. Advance care planning (ACP) conversations need to be uniquelytailored to this population. Our primary objective for this study was to develop an in-depthunderstanding of the ACP experiences from the perspectives of both parents and health careproviders (HCPs) of CMC.

METHODS:We conducted 25 semistructured interviews with parents of CMC and HCPs of variousdisciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP,including understanding of the definition, positive and negative experiences, and suggestionsfor improvement. Interviews were conducted until thematic saturation was reached.Interviews were audio recorded, transcribed verbatim, coded, and analyzed using contentanalysis.

RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviewsrevealed 4 major themes and several associated subthemes (in parentheses): (1) holisticmind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3)communication enhancers (partnerships in shared decision-making, supportive setting, earlyand ongoing conversations, consistent language and practice, family readiness, providerexpertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACPdefinition.

CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC andtheir families. Our results aided the development of a family-centered framework to enhancethe delivery of ACP through a holistic mind-set, thoughtful discussion content, and promotingof conversation enhancers.

WHAT’S KNOWN ON THIS SUBJECT: Advance care planninghas not been well established as a standard of practice forchildren with medical complexity, and there is limitedresearch on how and when these discussions should beundertaken with this population.

WHAT THIS STUDY ADDS: In this study, we provide an advancecare planning framework for families and care providers ofchildren with medical complexity. Practitioners shouldconsider broader domains of health alongside planning forend of life.

To cite: Orkin J, Beaune L, Moore C, et al. Toward anUnderstanding of Advance Care Planning in Children WithMedical Complexity. Pediatrics. 2020;145(3):e20192241

aComplex Care Program, Division of Pediatric Medicine, hDivision of Respiratory Medicine, and ePediatric AdvanceCare Team, Department of Pediatrics and cSickKids Research Institute, The Hospital for Sick Children, Toronto,Canada; bDepartment of Pediatrics and gLawrence S. Bloomberg Faculty of Nursing, University of Toronto,Toronto, Canada; dMichael G. DeGroote School of Medicine, Faculty of Health Sciences, McMaster University,Hamilton, Canada; fEmily’s House Children’s Hospice, Toronto, Canada;

Drs Orkin, Cohen, and Amin participated in the conceptualization and design of the study, designedthe interview guide, supervised the study, analyzed and interpreted the data, and critically reviewedand revised the manuscript; Ms Beaune and Ms Moore contributed to data analysis andinterpretation, drafted the initial manuscript, and critically reviewed and revised the manuscript; DrRapoport and Ms Adams participated in the conceptualization and design of the study and thedesign of the interview guide and critically reviewed and revised the manuscript; Ms Nettenparticipated in the conceptualization and design of the study and the design of the interview guide,contributed to participant recruitment, and critically reviewed and revised the manuscript;(Continued)

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Medical advances have resulted ina growing cohort of children withmedical complexity (CMC), many ofwhom would not have survivedpreviously.1,2 CMC have heterogenousdiagnoses, high health care use,reliance on medical technology,3–6

and substantial risk of morbidity andmortality.5–7

Advance care planning (ACP) hasbeen defined as “the process ofdiscussing life-sustaining treatmentsand establishing long-term caregoals.”8 In pediatrics, the literatureregarding ACP has primarily beenfocused on the intensive care settingand the oncology population.9,10 Inthese populations, ACP discussionsare often prompted by theanticipation of impending death,a need for clarification regarding donot resuscitate (DNR) orders, and/orwhen curative therapies fail andpalliative care becomes the focus.8 InCMC, because of the chronicity,fragility of illness, and uncertaintrajectory, ACP discussions have beenrecommended early in the carepathway to ensure that quality of lifeis balanced with quantity andprolongation of life.8 However, morethan two-thirds of parents of childrenwith chronic conditions have neverheard of ACP.11

Despite parents wishing to beinformed of all options, includingthose that involve forgoing potentiallylife-sustaining interventions,12–15

many barriers to ACP conversationsexist. These barriers includeperceived parental readiness,unrealistic expectations, anddifferences between parent andclinician understanding of theprognosis.16–18 Clinicians havereported discomfort with ACPbecause of fear of taking away hope,uncertainty of the prognosis, and notknowing the right time to addressthese issues.11,16,17 Presently, there isa disconnect between the perceivedbenefits of early ACP discussionsdescribed in the literature8 and thefamily and health care provider (HCP)

experience. Therefore, our study aimwas to develop an in-depthunderstanding of the ACP experiencefrom the perspectives of parents andHCPs of CMC.

METHODS

Study Design

We conducted a qualitative content-analysis study comprising interviewsof parents of CMC and their HCPs.Data were collected between May2016 and October 2016. Institutionalresearch ethics approval wasobtained. Parents were eligible forstudy inclusion if they (1) had a CMCmanaged in the complex care or long-term ventilation clinics, (2) couldread and write English, and (3) wereknown to have participated in at least1 previous ACP discussion asidentified by their HCP. All CMC metat least 1 criterion from each of thefollowing conditions: (1) technologydependent and/or users of high-intensity care, (2) fragility, (3)chronicity, and (4) complexity.19 Thepurposive sampling strategy wasused to ensure representation fromparents of CMC of various ages byusing a broad range of medicaltechnology as well asinterdisciplinary HCPs (physicians,nurses, and social workers). Writtenvoluntary consent was providedbefore study enrollment.

Data Collection

Data collection included demographicsurveys and individualsemistructured interviews. Interviewguides were developed iteratively bythe research team after a review ofrelevant literature and consultationwith content experts. After the first 2parent and HCP interviews,transcripts were reviewed, and theguides were revised accordingly (seethe Supplemental Information forfinal interview guides). These firstinterviews were included in the dataanalysis. Each interview began withthe Canadian Paediatric Society’s

definition of ACP8 to ensure that allinterviewees had a clearunderstanding regarding thediscussion topic. Interviews lastedbetween 45 and 60 minutes and wereconducted by a research coordinator(N.W.) at a location of theparticipant’s choice.

Data Analysis

Interviews were recorded,transcribed verbatim, and de-identified by a professionaltranscriptionist. Qualitative dataanalysis software (NVivo 10)20 wasused for data and codingmanagement. Content analysis wasused to analyze the transcripts.21–25

The inductive, 4-step content-analysisprocess26 was conducted to identify,code, and categorize predominantthemes from the text. After animmersive reading of the transcriptsby 4 study investigators (J.O., R.A.,N.W., and L.B.), initial patterns andrecurring categories were identified.Next, similarities and differencesbetween participant accounts wereidentified. Finally, codes were createdby 4 study investigators (J.O., R.A.,C.M., and L.B.). A codebook wascreated and iteratively modified.Content analysis helped to createrelationships between concepts orvariables that had a bearing on theexpectations and experiences of ACPdiscussions.27,28 Methodologic rigorwas established through prolongedengagement and peer debriefing, andfollowing the Consolidated Criteriafor Reporting Qualitative studies.29

After 25 interviews, recruitment wasconsidered closed because thematicsaturation had been achieved.27

RESULTS

The research team contacted 14families; the mother was the parentwho agreed to participate for allfamilies. Eleven HCPs were contacted,and all those approached agreed to beinterviewed. See Tables 1 and 2 fordemographic characteristics ofparticipants. None of the CMC were

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verbally or cognitively able toparticipate in the ACP conversations.

Framework of an ACP Discussion

Three themes were identified thatprovide a framework for ACPdiscussions: (1) holistic mind-set, (2)discussion content, and (3)communication enhancers. Thisframework (Fig 1) suggests that thepatient and family should be the mainconsideration when leading ACPdiscussions, highlighting theimportance of initially discussing

topics such as quality of life, beliefsand values, and hopes and goals. OneHCP clearly described this approachto ACP discussions:

Think about the big picture and whatare the goals, ensure the familyunderstands the prognosis, and whatthey want for their child. Some of thesecondary issues around life-sustaining and interventions comeafter that. But the first issue is whatdo the parents want, what are theirexpectations, what are their hopes andwhat are we trying to achieve.

HCP 7

Holistic Mind-set

HCPs and parents expressed that thepatient and family should be at thecenter of ACP discussions. HCPsnoted the importance of taking timeto recognize, understand, and supportdiversity and individuality betweenfamilies. Parents also explained thatthe best ACP conversations were onesin which they felt involved, respected,and accepted (Table 3).

Discussion Content

Both HCPs and parents providedimportant topics they felt should beincluded in ACP discussions, notably(1) quality of life, (2) beliefs andvalues, and (3) hopes and goals(Table 4). Some parents noted thattheir child’s quality of life was oftenunderestimated by HCPs, thushighlighting the importance of askingparents about their child’s quality oflife at baseline rather than makinginferences on the basis of theirclinical status when admitted to thehospital. Discussing beliefs and valueswas explored by HCPs and supportedby parents. HCPs noted thatunderstanding a family’s values andbelief system is a foundational aspectof ACP discussions, allowing them tobetter tailor care to each individualfamily. Several parents reinforced theimportance of discussing beliefs andvalues as they spoke to how theirbelief system and values guided theirdecision-making. HCPs expressed thatunderstanding a family’s hopes andgoals in the context of the child’sillness is an essential aspect of ACPdiscussions. Parents also indicatedthat ACP discussions that includedconversation surrounding their hopesand goals for their child werebeneficial to their child’s life becausethey provided opportunities tocollaboratively work toward and/orreframe hopes and goals.

Communication Enhancers

Parents and HCPs provided manyinsights into areas that would supportthe enhancement of ACP discussions.

TABLE 1 Parent Demographic Characteristics

n (%)

SexFemale 14 (100)

Relationship to childMother 14 (100)

Age range, y26–35 2 (14)36–40 6 (43)41–50 3 (21)Not specified 3 (21)

Marital statusMarried or living with partner 9 (64)Divorced 1 (7)Separated 1 (7)Not specified 3 (21)

EducationDiploma or certificate from community college or nursing school 2 (14)Diploma or certificate from trade, technical, vocational, or business college 1 (7)Some university experience 1 (7)Bachelor’s or undergraduate degree or teacher’s college 4 (29)Master’s degree 3 (21)Not specified 3 (21)

Household income range, $15 000–19 999 1 (7)40 000–49 999 1 (7)60 000–79 999 4 (29)$80 000 5 (36)Not specified 3 (21)

Lived in Canada since birthYes 8 (57)No 3 (21)Not specified 3 (21)

EthnicityWhite 6 (43)Mixed race 1 (7)Jewish 1 (7)Filipino 2 (14)South Asian 1 (7)Not specified 3 (21)

Other children with medical conditionYes 4 (29)No 4 (29)Missing data 3 (21)

Documented ACP discussionYes 14 (100)

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Seven enhancers emerged from thedata: (1) partnerships in shareddecision-making (SDM), (2)a supportive setting, (3) early andongoing conversations, (4) consistentlanguage and practice, (5) familyreadiness, (6) provider expertise inACP discussions, and (7) providercomfort in ACP discussions (Table 5).

The first enhancer, partnerships inSDM, was described by both parentsand HCPs. HCPs agreed that decisionsshould be made in partnership withfamilies, respecting their uniquedecision-making preferences. HCPshad varied perspectives regardingfamily-HCP partnerships for SDM.Some felt that parents are given toomuch responsibility in ACPdiscussions, whereas others felt thedecision-making process should bemore collaborative. There was alsoa large amount of variability betweenparents in how they preferred ACPdecisions to be made. Some parentswanted to always be seen as theexpert, some parents wanted the HCPto make the decisions, and otherswanted the HCP to provide them with

all the options and guidanceregarding what they think is right butallow the parent to make the finaldecision.

Parents and HCPs provided manyexamples for how ACP discussionscould be more supportive for thefamily, thus enhancing the ACPexperience. Many of these suggestionscovered topics such as ensuringa comfortable and appropriatelocation, budgeting enough time,providing the opportunity for all keyteam and family members to bepresent, and ensuring that the familyfeels supported. Participantsemphasized that ACP conversationsshould start at the time of diagnosis,occur before a medical crisis, and bean ongoing and dynamic part of thechild’s care. This affords families withadequate time to make decisions theyare confident in as well as enoughtime to understand and come toterms with the reality of theirsituation.

Another enhancer was for HCPs touse consistent and unambiguouslanguage. HCPs were cognizant of this

and advocated for bettercommunication through the use ofclear, nonmedicalized language. Inaddition, HCPs mentioned theimportance of delivering a consistentmessage between different HCPs andhealth care teams. Parents citedexamples of situations in which thelanguage used by the medical teamwas not explained or was too vague.

Some HCPs spoke about the need togauge family readiness for ACPdiscussions and to follow the family’slead, whereas others felt that familiesmight never feel ready to engage inACP. Parents elaborated on this topicby stating that HCPs should respecttheir feelings and not push forconversations if family membersmake it clear that they are not readyto engage. Thus, initiating ACPdiscussions when the family is readycan be seen as an enhancer.

HCPs expressed mixed feelingsregarding provider expertise in ACPdiscussions. Some HCPs and parentsstated that specific training andcapacity building would be beneficial,whereas some HCPs noted that thebest way to gain expertise is throughexperience. All participants agreed,however, that provider expertise canenhance ACP conversations. Closelyrelated to expertise, HCP comfort wasalso noted to be of importance. ManyHCPs think that provider discomfortis a prominent barrier to ACPdiscussions. Therefore, an additionalenhancer for ACP discussions isprovider comfort.

ACP Definition

Through our interviews, manycaregivers noted that they had neverheard of the term ACP. Understandingsurrounding these conversationsvaried greatly from caregiver tocaregiver. Some parents viewed ACPas negative and as preparing for theworst, whereas others noted that inthe past, they had positive ACPexperiences and that ACP meantplanning for the future. HCPs alsoheld varied perspectives regarding

TABLE 2 HCP Demographic Characteristics

n (%)

SexFemale 5 (45)Male 6 (55)

Age range, y36–40 1 (9)41–50 6 (55)501 4 (36)

DisciplinePhysician 8 (73)Nursing 2 (18)Social work 1 (9)

SpecialtyComplex care 2 (18)Pediatric medicine 3 (27)Respiratory medicine 2 (18)Pediatric haematology and oncology 1 (9)Critical care 1 (9)Neonatal intensive care 1 (9)Palliative care 1 (9)

Years of medical practice range, y5–10 2 (18)101 9 (82)

Formal palliative care trainingYes 2 (18)No 9 (82)

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the definition of ACP. Some felt itwas geared toward end of lifespecifically, whereas others hada more general definition, such asunderstanding the family and theirgoals. A comprehensive table ofparticipant’s comments regardingtheir familiarity with and definition ofACP can be found in SupplementalTable 7.

DISCUSSION

This is the first qualitative study toexplore how ACP is experienced by

parents of CMC and their HCPs.Previous research into pediatric ACPhas been focused largely on childrenwith cancer; however, CMC differgreatly from this population. Inoncology, patients often experiencestark changes in their quality of lifeafter a cancer diagnosis. HCPs areusually able to provide a clearprognosis, and treatment is usuallyoriented to cure. ACP discussionsoften occur solely when no furthertreatment is possible.8,30 In CMC,disease-related changes in quality oflife are hard to discern, outcomes are

uncertain and it is often difficult toprovide a prognosis, and there isoften no cure. These circumstancesinevitably impact the frequency andcharacteristics of ACP discussions.Ultimately, this study highlighted theneed for and aided in thedevelopment of a patient- and family-centered framework for ACPdiscussions for CMC (Fig 1).

In this study, many parents had neverheard of the term ACP, andunderstanding surrounding theseconversations varied greatly. Thelarge amount of variability in thedefinition of ACP has been describedin previous research in whichclinicians provided differingresponses when asked what ACPmeant to them.31 This lack ofconsensus highlights our firstrecommendation from this article:parents and HCPs should discuss thedefinition and goals of ACP beforepartaking in an ACP conversation(Table 6).

Family-centered care (FCC) is anestablished standard of pediatric carethat centers on the parent and HCPpartnership, respectfully honoringpatient and family carepreferences.32,33 In our study, parentsand HCPs emphasized the importanceof the patient and family being at thecenter of ACP discussions anddescribed the need for a holisticmind-set and discussion surroundingquality of life, beliefs and values, andhopes and goals. Discussing thesetopics will allow HCPs to gain broaderunderstanding and respect of thepatient, their family, and their carepreferences, ultimately allowing fortrue FCC. Partnering with families by

FIGURE 1A conceptual model of the framework for a family-centered ACP discussion.

TABLE 3 Example Quotations From Parents and HCPs Regarding a Holistic Mind-set

Parent HCP

“I’m happy with the team because they give me what I need, and if I tell themsomething, they accept me, they’re just not ignoring me as a mother. They’renot insisting on what they want.” (ACP 11)

“We need to do some more to understand who they are, how they likeinformation and how the information should flow and who is involved withdecision-making.” (HCP 4)

“I think the best conversations I’ve had have started with ‘How are things goingright now?’ you know, ‘How do you feel your child is doing?’ and, you know,‘What are your plans right now?’ and, kind of, like, focus on, like, what isimportant to you guys right now.” (ACP 2)

“We like the team to be aware that this family may have restrictions, whetherit’s financial, language, lack of family support et cetera. They need a well-rounded picture of the family dynamics.” (HCP 10)

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first understanding their goals andperceptions can help to frame theACP conversation. This partnership isat the core of ACP discussions, andthe resulting outcome of thediscussion is truly secondary to thepartnership that was formed.Furthermore, parents who believethat the HCP understands their child’sneeds are confident in the HCP’sability to partner during times ofcrisis.15 Therefore, we suggest thata holistic approach to ACP is essentialin building a strong, trustingpartnership between HCPs andfamilies of CMC, which will lead toimproved conversations andcommunication.

SDM is the basis for FCC34 and occurswhen parents and HCPs work

together to reach agreementsurrounding a treatment plan.34,35

Thus, SDM enables families of CMCto have decision-makingopportunities that embody theircare goals for their children.Parents in our study had contrastingdecision-making preferences. Thisis consistent with Beecham et al,36

who found that parents’ approachesto decision-making are dependenton the type of decision beingmade, may change over time, andreflect opportunities to keepoptions open. Thus, when providingACP to families of CMC, HCPsshould practice SDM by attemptingto understand and supportparents’ varied preferences formaking decisions at each stepin their child’s care trajectory.

This requires HCPs to be flexible

and adaptable when dealingwith individual families andpatients.37

Parents and HCPs believed ACPshould extend beyond medicalgoals of care, begin early in thechild’s disease trajectory, andcontinue across the child’s life span.The need for early conversationshas been emphasized in theliterature38,39; notably, initiatingconversations with family membersbefore the patient is in criticalcondition is helpful in maintaininghope and preparing for the patient’sdeath.40 Revisiting and continuingACP discussions across the life spanhas proven beneficial because itallows opportunity for goals to

TABLE 4 Example Quotations From Parents and HCPs Regarding Discussion Content

DiscussionContent

Parent HCP

Quality of life “Their automatic assumptions…this is all the things she has wrongwith her, oh, her life at home is horrible, she has a painful life, sheprobably lays in bed all day, she does nothing. And we’re like, what,that doesn’t describe our daughter at all.” (ACP 2)

“I almost feel like we should throw out quality of life because I do thinkthe family probably has a better sense of whether the child is happyor not and whether the pros and cons of whatever interventionmakes sense for this person.” (HCP 5)

“I think when we have advanced care planning discussions, peopledon’t focus enough on those realities of everyday life; they focuson this stigma or this stereotype.” (ACP 1)

“The bottom line for health care providers is, ’Do we put a breathingtube in and pound on the chest or not?’ It’s about the things thatwe’re not going to do, whereas the family is far more interested inhearing about the things that we will continue to do, all the ways wewill continue to provide care and comfort to keep their child alive andhaving a good quality of life.” (HCP 11)

“They can tell us, ‘We found out that your child is special needs andwe are going to do everything in our way to make sure that thechild is comfortable and we will try our best to do everything wecan to help them.’ Instead of ‘Hey, your child is special needs, andthey’re never going to be normal like you and me and they’regoing to have a short life span and you need to get prepared for itand if they get sick, maybe it’s time to let them go.’” (ACP 7)

“I think one has to be realistic about what the real opportunities orpotential for a particular child would be. I’ve seen people give overlynegative sort of pronouncements based on testing, without reallyobserving the child themselves, or the family.” (HCP 9)

Beliefs andvalues

“In our faith, I would say it’s kind of like we definitely deal with thedeath with the grief, with the sorrow, but it’s something we have toaccept it because it’s something has happened from God. It’ssomething we couldn’t have intervened.” (ACP 10)

“They told us about their beliefs, in terms of what’s right for familiesand when, in their culture, when God intervenes. The bottom line wasthey were quite comfortable.” (HCP 2)

“We were very open with our goals, and we’re religious, it’s likeending her life is not even an option that we would be able tomake ourselves with them.” (ACP 9)

“Some parents are very well developed in terms of their preferencesaround what they want and what they don’t want and how that isaligned with the bigger picture. So some family’s bigger picture mightbe aligned by religion, other family members, their own experiencesfrom the same child going through things.” (HCP 7)

Hopes andgoals

“Our team has been amazing ’cause they understood the goals that Ihad for her and how badly I want to make her life normal and funand positive.” (ACP 9)

“It’s about understanding what’s important to the family and what theirgoals are, but also what things are important to them, so makingmemories or having experiences with their family, thinking aboutwhat things would I hate to have missed the chance to do, and thenlooking back and not having regrets about that.” (HCP 4)

“That conversation shaped the way we do things in our family. Tripsthat we think we’ll put off for five years, it’s more like…if my childis doing well, maybe we should look at doing that sooner thanlater.” (ACP 2)

“I think that it’s important to talk about hopes, but it’s also important totalk about fears as well, to round it out. So I think all of those thingsgo into it. I think the timing, the pace, reading the rules of the game,understanding goals and hopes, but also fears and worries.” (HCP 4)

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TABLE 5 Example Quotations From Parents and HCPs Regarding Ways to Enhance Communication in ACP Discussions

CommunicationEnhancers

Parent HCP

Partnerships in SDM “The doctor assumes they know more than you do...but they needto see you as the expert, and I mean that with a family witha special-needs child, the family is the expert.” (ACP 5)

“Part of the problem is the health care providers, usually they leavethe decisions completely 100% to the parents. They do not givetheir recommendation from the beginning, which makes it moredifficult to make decisions. And as a parent, sometimes youcannot decide about advanced care for your child and you feelinternally forced to do everything for your kid. Even if it’s not thebest for quality of life and care for the kid.” (HCP 3)

“She said we have two options, option A and option B. I heard the2 options, and then I said, ‘But I can’t be the one to make thisdecision, please take it back to my doctor, and I want him todecide or at least tell me what he thinks we should be doing,and then we can make the final decision.’ I feel like I shouldhave the last word, but most of the time, I want them to at leastweigh in and tell me what they think.” (ACP 9)

“I find that in the end, it’s just basically talking to the parents andmaking sure that they’re really thinking their decisions throughand they understand what the consequences are and the kid isinvolved as can be and you, as a group, come together witha plan for the child.” (HCP 5)

Supportive setting “My husband wasn’t there at that time, so you know, you’re therealone, the kid is so sick in the ICU, to have this conversation hityou like a load of bricks is the most awful feeling. So it has tobe better planned, like, you want to make a suggestion, like,that, you have to have both parents with the social worker,somebody to give support, and then explain clearly what youmean. Instead of like giving these vague types of ideas that arenot helpful at all, ’cause it’s not like I want to make the decisionthen anyways, by myself.” (ACP 9)

“Patient rooms belong to the hospital, they don’t belong to thepatient. The number of times you’re in a discussion with a familyand somebody just opens the door. There are rooms that can beused to have private meetings with family, and they get used a lotbecause they’re multiple-patient rooms, but families will say, ‘Ohthis is the bad news room.’” (HCP 11)

“I mean we’re dealing with life and death and it’s your child, it’sa lot to deal with and to take in. So how do you go aboutaddressing that with the person but also making sure you havepeople in place that can kind of read the individual to see if arethey coping with it okay.” (ACP 6)

“I do not force the discussion to be in detail because my clinic, myprogram, my settings, and my clinical area doesn’t allow me tohave an expanded discussion. It needs a separate meeting andmultidisciplinary teams, including either social worker or theadvanced care or the palliative care team, as well as the primarycare providers for those patients.” (HCP 3)

“I think doctors are always pressed for time, so…havinga conversation at the end of the hallway, to a parent, can bevery challenging. It feels rushed. And the doctor is beinginterrupted and there’s people walking by and it doesn’t feelvery private. And you might feel yourself getting emotional andthat sort of thing. And you want to feel like, as a parent, thatyou have time to ask your questions.” (ACP 2)

Early and ongoingconversations

“There needs to be continuous follow-up. Because they have toremember that you’re going to grieve even if the child hasn’tdied yet. Just knowing that that’s going to happen becausethat’s what you’re preparing for.” (ACP 2)

“I think that they should be spread out and it should be just part ofregular conversation and we should always be reassessing it. Ithink that whenever you can do it out of crisis they’re going to bemuch, much more rich and then they’re going to have time forthe parents and the family will have time to think about things,how they want to be treated.” (HCP 4)

“I think kids who have a condition that’s likely terminal, I think,having these discussions early and having them very much laidout is an important piece. Because it’s very hard for parents tomake those kinds of decisions in a crisis.” (ACP 3)

Consistent languageand practice

“They kind of assume that you understand everything a lot of thetime, but as parents, you don’t. A lot of us don’t have themedical background, so you have to dumb it down a bit andyou have to really explain things.” (ACP 6)

“In the actual conversation, I think you have to use language that isunderstandable. So people often use lots of medical lingo butbeing very simple in terms around what we’re talking about,what we’re expecting and then making it concrete as to whatwe’re trying to achieve by the conversation.” (HCP 7)

“He said, ‘Oh, well, you know, with kids at your daughter’s stage,this is what we would expect,’ and my husband and I were like,‘What do you mean her stage? I don’t under…’ like, ‘What?’ andthey’re like, ‘Oh, yeah, well, at this stage of the dying process,’and we’re like, ‘Who? What? What are you talking about? I don’tunderstand what you’re saying,’ like, ‘We’re not trying to bedifficult, but no one has talked to us about this.’” (ACP 2)

“The next issue is language. The medical profession in all of itsdifferent parameters retreats into a language that they feelcomfortable with…unfortunately, that’s the language thatfamilies do not understand, so you need to try to gauge how youaddress the issue, what kind of words you use with each family,and it’s going to vary significantly. The other very important thingis to be very clear as you speak, not use words that may beambiguous. If you’re going to talk about death and dead, speakabout death and dead, don’t talk about passing or somethingelse, because that means different things to different people.”(HCP 6)

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evolve as the patient’s healthchanges.31

Also related to timing was thesentiment of parental readiness.Participants in both our study and theadult ACP literature felt that ACPshould not be initiated when thefamily does not feel ready.41,42 Thiscan become challenging if a familynever feels prepared to participate inthese conversations, and it is possiblethat assessing readiness is a difficulttask. However, the aim of these

conversations is largely to align thepatient and family’s goals of care withthe plan of care. Therefore, reframingthese discussions as such can help tofacilitate these conversations.Ultimately, we recommend that HCPsbegin ACP discussions as early aspossible and allow them to continueacross the life span; reframing themas conversations to ensure that thegoals of care align with the plans ofcare may result in families feeling lessoverwhelmed.

Parents are more likely to havenegative experiences with ACP whenthey do not have confidence in thephysician’s knowledge about theirchild’s treatment wishes or in the waythat potentially upsetting news ispresented.43,44 Parents in our studydid not specifically relate negativeexperiences to lack of providerexpertise; however, both parents andHCPs indicated that expertise was orwould be helpful in enhancing ACPconversations. Previous literature

TABLE 5 Continued

CommunicationEnhancers

Parent HCP

“It’s really helpful if everybody sort of feels the same way in termsof what advice to give to the family. I think there’s nothing, well,it’s extremely difficult when different providers are givingdifferent prognostic outlooks, and different levels of hope andmessages, type of thing.” (HCP 9)

Family readiness “Be respectful that if it’s too much for them and they want you tostep away, to, you know, have the conversation but then respectthe fact that they may not be ready to have those conversationsat that time.” (ACP 6)

“For most families, they need time around realizing what’s going onand what life is going to be like and to digest what the healthcare team is saying and to actually believe it. So, you first have togauge where they are along that continuum.” (HCP 7)

“I don’t think that usually the parents will be ready ever. I thinkthese discussions should be initiated as soon as theunderstanding of the disease has been made. But to be wait forthem to be ready for the discussion is very difficult.” (HCP 3)

Provider expertise indiscussion

“Perhaps there might be eventually some kind of training forsome of these doctors to be able to listen and want to try someof the things that we think might be an option or a possibility.”(ACP 8)

“I’ve seen people do an outstanding job, and I’ve tried to model whatI do based on those people. I’ve also seen conversations led bypeople who, I think, have done a terrible job, and I’ve tried to notfall into the same kind of pattern. So I think it’s purely based onexperience.” (HCP 9)

“I think formal training may give you a foundation, but not a lotmore than that. I’ve watched people who have had formaltraining come in and they try and apply a model to an advancecare planning discussion and unfortunately their model’s notadaptable enough for the huge variability of conditions withwhich we deal. And that’s where experience and exposure comesin.” (HCP 6)

“I think that it’s not perfectly taught; I don’t know that it can beperfectly taught. I do think that it can be better mentored,though.” (HCP 4)

Provider comfort indiscussion

“If there is a barrier, it’s people’s comfort level. It’s people saying,‘I’m not really comfortable initiating this discussion,’ and thenfeeling uneasy when the family is uneasy. Because it’s not a nicething to talk about generally and you can try and be friendlyabout it but talking about advanced, difficult scenarios. Notnecessarily death, but stuff that you’re trying to plan for, thatmay not be nice to think about. And so that would be the majorbarrier, comfort.” (HCP 5)

“It’s probably dwarfed by health care readiness, and are we readyto have these conversations? I think part of it has to do with ifwe’re having these conversations, it means that we have failed insome way. That’s a perception in medicine, if we’re havingconversations about goals, it must be because things aren’tgoing well and that’s because I haven’t managed things well,which is a total farce. That’s not true at all.” (HCP 4)

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suggests that HCPs often feelunprepared for discussionssurrounding end-of-life care,45,46 andHCPs in our study spoke to theimportance of provider confidence inACP discussions. In a previous study,individualized communicationtraining was felt to be helpful inimproving physicians’ confidence inend-of-life communication.47

Therefore, capacity-buildingendeavors may be beneficial forHCPs who experience a lack ofconfidence in leading ACPdiscussions. HCPs must take it onthemselves to advocate at theorganizational level for support thatprovides capacity-building andmentorship opportunities that willallow them to provide family-centered ACP care.

This discussion of HCP comfort andexpertise leads to the followingquestion: Who is the best HCP to leadACP discussions for CMC? Our resultssuggest that this person should besomeone who has experience withACP discussions and is comfortablewith the topic of conversation but,most importantly, has a strongrelationship with and thus,a comprehensive understanding of

the family. Ultimately, this HCP will bedifferent for each family, froma palliative care physician toa primary care provider.

Although our study led to severalrecommendations on the basis of ourfindings (summarized in Table 6),there are some limitations to ourstudy. The research was conductedat a single tertiary care institution,and all parent participants wereEnglish-speaking women frompredominantly well-educated,middle- to high-income families.Although in the sampling strategy,parents of children with variousmedical conditions and of variousethnicities and economicbackgrounds were purposefullyselected to reflect the diversity offamilies who live in Ontario, Canada,our study results may not reflect theexperiences of fathers or of othersocioeconomically or linguisticallydiverse families.

CONCLUSIONS

CMC differ greatly from otherpopulations because of theuncertainty surrounding theirincurable illnesses. Because of their

children’s unique medical status,parents of CMC have valuable insightregarding ACP discussions. Forfamilies of CMC, ACP is much morethan advance directives and DNRorders. ACP should be a holistic andongoing process that includesdiscussions surrounding hopes andgoals, beliefs and values, and qualityof life. Parents and HCPs of CMC inthis study highlighted the need forand informed the development ofa family-centered framework toapproach ACP.

ACKNOWLEDGMENTS

We gratefully acknowledge the timeand expertise shared with us by themothers and HCPs who participatedin the study.

ABBREVIATIONS

ACP: advance care planningCMC: child/children with medical

complexityDNR: do not resuscitateFCC: family-centered careHCP: health care providersSDM: shared decision-making

Ms Arje and Ms Weiser contributed to participant recruitment, data collection, and data analysis and interpretation and critically reviewed and revised the

manuscript; and all authors approved the final manuscript as submitted.

DOI: https://doi.org/10.1542/peds.2019-2241

Accepted for publication Nov 4, 2019

TABLE 6 Recommendations for Family-Centered ACP Discussions

Recommendation Corresponding Themes and Subthemes

Begin with an initial discussion regarding the definition of ACP. Provide a clear explanationof what ACP is and discuss parents’ perceptions of ACP.

ACP definition

Approach ACP with a holistic mind-set. Ensure discussion around perception of the child’squality of life, the family’s hopes and goals for their child, and the family’s unique beliefsand values.

Holistic mind-set, discussion content: quality of life, hopes andgoals, beliefs and values

Establish an HCP-parent-child partnership that is grounded in a holistic view of the child andhis or her family and provides opportunities for SDM in which each person’s unique levelsof expertise and decision-making preferences are respected.

Communication enhancers: partnerships in SDM

Implement a standard ACP practice that is used to encourage consistent use of terminology,is relationship based, and is initiated early and continues throughout a child’s life.

Communication enhancers: consistent language and practice,early and ongoing conversations

Advocate for organizational support that provides space, time, capacity building,mentorship, support, and recognition of the time required to provide family-centered ACPcare.

Communication enhancers: provider expertise in discussion,provider comfort in discussion, family readiness

PEDIATRICS Volume 145, number 3, March 2020 9 by guest on October 13, 2021www.aappublications.org/newsDownloaded from

Address correspondence to Reshma Amin, MD, MSc, Division of Respiratory Medicine, Department of Pediatrics, The Hospital for Sick Children, 4539 Hill Wing, 555

University Ave, Toronto, ON M5G 1X8, Canada. E-mail: reshma.amin@sickkids.ca

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2020 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

FUNDING: Funded by the Norman Saunders Complex Care Initiative, The Hospital for Sick Children.

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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