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I hesitated when I was asked, as Chair of the Canadian Family Advisory Network and thus as a ‘family representative’, to make two presentations at the symposium titled “Child Health in the 21st Century: The Role of the Paediatrician in an Inter-professional Environment”. I knew from experience that many parents were concerned about their own role and place in interprofessional health care environments, and about paediatricians and family doctors becoming further removed from the world of the child and family as they became increasingly absorbed by an inter-professional one.
Nevertheless, I accepted the invitation and prepared two presentations, offering a family perspective on “vulnerable populations” and on “children, youth and families with multiple complex needs”. In the short time available, I developed a survey asking parents a variety of open-ended questions. A total of 31 parents (most of whom were members of advisory groups and had children with long and often complex health care histories) responded, often in rich detail. I also met with a group of mothers at a paediatric rehabilitation centre with approximately 20 parents from across Canada during part of a Canadian Family Advisory Network workshop, and with the members of a children’s council at a paediatric hospital. I also did a good bit of reflecting on what I had heard and observed during the previous 11 years while serving as a volunteer with other parents on local, regional and national bodies. In the end, I had gathered more stories than data, far from being representative in any demographic sense, but remarkably varied and illuminating nonetheless.
Striking among all of the stories was the frequency with which parents, even many years after their children were diagnosed, returned to the actual disclosure of the diagnosis and to the days and weeks immediately thereafter. The focus was rarely confined to how the usually bad news itself was delivered; instead, it included whether there was real engagement and whether, at least, a partnership had begun. Most recalled the initial encounters in great detail: whether there was eye contact, whether their names and the names of their children were used, and exactly what words were spoken. Even a paediatrician’s simple comment/question, “This must be quite a shock for you”, was remembered by a mother many years later as immensely comforting and fortifying.
In the group discussions, whenever one parent mentioned hope, others quickly described how the doctors who made or discussed their children’s diagnoses with them nourished, ignored or undermined their hope for their child. Several mentioned that what they most wanted or needed to take away from those early appointments was what they called ‘realistic hope’, which combined their desire for both ‘the straight goods’ and the best possible life for their child, whatever its duration. Two mothers praised their children’s doctors for asking them early on and periodically afterwards what they were hoping for, and then creating or modifying – with them and later with their children – a plan of care in tune, or at least in touch, with those hopes. They also said how much they appreciated the doctors telling them what they themselves were both expecting and hoping for.
This exchange of hopes exemplifies the reciprocity that more than anything else characterized the successful and sustained partnerships with doctors that parents described.
Parents were, of course, aware of and grateful for the medical expertise of doctors, but they also wanted their own profound knowledge of their children and their expertise recognized and drawn on. (Sometimes what parents wanted to share was hardly profound but simply useful; for example, “If you try to give him a needle without my holding him, he’ll have a major meltdown and will probably damage the office”.) They found it much easier when exchanges took the form of conversations rather than interviews, and frequently cited the value of candour in these conversations. Parents said that they not only wanted doctors to tell them when the information or suggestions parents had shared with them were helpful and important, but also when they believed the information was not. They also appreciated doctors telling them when they did not have ready answers and were feeling stumped or frustrated; parents then felt freer to share their own uncertainties and acknowledge their own limitations and anxieties. Several parents seemed particularly proud that they and their children’s doctors had been able to disagree openly and then work through those disagreements. A father recalled how paradoxically reassuring and instructive it was to see and hear his son’s paediatrician “thinking and wondering and changing her mind out loud” as together they weighed and discussed treatment options for his son’s self-injurious behaviour. Perhaps tellingly, no parent mentioned a doctor’s ‘bedside manner’ or seemed to yearn for anything the term ‘bedside manner’ calls to mind.
Partnerships were hardest to find, and parents’ frustrations were greatest in relation to the murky area appropriately known by various names: case management, navigation, coordination of care, etc. Parents identified many paradoxes, ambiguities and simple contradictions that they believed were near the heart of the problems they were experiencing and were hoping someone would soon address:
Every parent of a child with truly complex needs insisted that there was no question about who was, in fact, the real navigator/coordinator/case manager: a parent, almost always the mother. Yet, some had been told, “Case coordination isn’t your job”, even when their lives were being consumed by it. Others were assigned the title as if it were a gift, and then left to make decisions that they sometimes felt unqualified to make and that they worried could actually harm their child. What all the parents of children with very complex conditions said they needed was direct unfiltered access to their children’s primary care doctor – access they rarely used but needed to know existed, partly for their peace of mind. Most parents also would like a clearly identified ‘associate coordinator’ to do much of the legwork (helping to group clinic appointments; helping to ensure consistency between at-home and in-hospital care; helping with the paperwork needed to secure equipment, nursing care, etc.) that was threatening to wear out so many of them. One mother reported that she had just such an arrangement with a nurse practitioner – the ‘go-to person’ – who worked very closely with her paediatrician, but even that arrangement broke down during holidays.
The diagram in Figure 1 probably says more than a thousand words could say about the challenges confronting many parents in coordinating their children’s care. It was prepared by the mother of a boy, now 11 years of age, with cerebral palsy. She created an earlier version to help herself and others get an overview of what she called the elements of her son’s care and the people involved in that care. More particularly, she had come to realize and to worry profoundly, given life’s uncertainties, that no one else possessed anything close to her knowledge of all those elements that made her son’s life the wonderful but difficult life it was and is. Is the mother’s situation typical? All I can say is that the several parents of children with complex chronic conditions who have seen the diagram have all said something along the lines of “that looks like my life”. Still, the mother knows how much harder life, especially her son’s, would be if she did not live in a city with extensive health care services. Look again at Figure 1 and try to determine which of the services would be within even the long reach of a mother of a child with comparable needs living hundreds of kilometers from a city. And, of course, some of the services carry a cost, or require some advocacy or knowledge of ‘the system’ to obtain. How easy would it be for a mother who is poor or who is a recent immigrant not fluent in the language of her new surroundings even to find out about what is available to her child? Finally, given that cerebral palsy is a relatively common, high-profile and visible condition, think of the challenges facing the parents of children with less common, less understood and less visible conditions and needs.
Consider also the place and role of the paediatrician. How much of the diagram would he or she likely be able to fill in or even be familiar with? The mother says she needs the paediatrician primarily to help advocate for some of the nonmedical but certainly health-related services, to pull together and review with her the various medical reports and information she gathers from different sources, and, most important, to “bounce ideas around with and come up with the best care plan”. No doubt the paediatrician needs to be someone who can be led as well as lead.
One quality I expected this mother or some other parent to identify as essential in a paediatrician was never mentioned: empathy. Instead, what she and others seemed to be hoping for was something best called imagination. When one group of parents told me that they wished their child’s ‘main doctor’ would visit their home, just once, to see the child and family in their ‘natural environment’; when one mother wrote about feeling so disheartened when her daughter’s paediatrician and nurse seemed surprised and bemused to learn that the first four pages of the binder she carried from appointment to appointment were filled with the business cards she needed to keep track of all of her daughter’s care providers; and when several parents said that none of their children’s several doctors ‘got it’ when the parents (usually praised for their optimism and strength) found themselves gripped by despair, they were all expressing a need not for the doctors to be feeling what they were feeling but to be apprehending the contours of their lives, at least once, from the inside.
Parents expressed a particular wish for their children’s doctors to help them imagine the future – whether the particular future they were focused on was days or decades away. A few years previously, I found myself in a hallway with some other parents eavesdropping on what was being said inside by a child psychiatrist to a decidedly interprofessional audience. All of us parents looked at one another and smiled knowingly when we heard him tell the group inside that he always tells parents of recently diagnosed children with autism, “Don’t think ahead”. Thinking ahead is what we cannot help doing and what we need to do. We can accept and deal with as much uncertainty as life can offer, but we need the help of a great number of people – the physicians who are our essential partners among them – to imagine and thereby help create a future for our children we can all look forward to.