Overview of themes and deliberants
In the separate small-group consultations, 8 were parents who were bereaved and 4 were parents of children currently undergoing treatment; in the mixed consultation, 5 parents (4 bereaved and 1 currently in treatment) accepted the invitation to participate. In the bereaved parents consultation, the discussions centered around important physician-parent communication values, such as honesty and empathy, providing families with the appropriate psychological and social support or counselling at and post-diagnosis, as well as providing parents with unbiased information to enable shared decision-making of the child’s treatment trajectory. In addition to these themes, the parents of children currently undergoing treatment deliberated on communication strategy details, i.e. the structure and content of physician-family meetings, as well as the inclusion of the child in such conversations. We first present the initial themes arising from both Phase I small-group consultations, as there was significant overlap between groups (see Table 2 for an overview of themes and quotes). We then present the six concrete family-centered recommendations for LDT-based communication in practice co-developed by the parents in the mixed consultation. We also note that, based on the deliberation quality assessment results, all consultations were considered to be of high-quality (Online Supplement).
Phase I Small-Group Deliberative Consultations
Parents first discussed how the LDT would be introduced at initial presentation. The accuracy, risks, benefits (non-invasiveness compared to biopsy), turn-around time, and implications of the test concerning response to treatment were seen as key communication needs. At initial presentation, bereaved parents expressed frustration with the health care team when asked questions that implied their parenting skills or the environment in which they lived were the potential causes of the brain tumor:
“One nurse asked me, did you breast feed?” (BP8)
“Did [your child] ever hit his head?” (BP3)
Once a diagnosis and prognosis can be communicated to the family, all parents suggested that oncologists “be human” when delivering the news, expecting a balance of honesty, compassion, and empathy. One participant remembers:
“I asked if [my child] was going to die, and [the surgeon] looked at me and said, well everyone is going to die someday.” (BP1)
Participants unanimously agreed that honesty was appreciated when delivering the diagnosis, even if it was extremely difficult news to cope with. This honesty, participants said, would allow parents to have an open conversation about the potential next steps, i.e. treatment options, with their physician.
“It’s that human side of the doctors, and still that professional side of having to deliver the information.” (BP1)
Along with honesty, parents of children currently in treatment highlighted that oncologists use medical jargon during the initial diagnostic meeting, which exacerbates the issue of understanding and/or accepting the diagnosis:
“I had no idea what [the diagnosis] was […] I didn’t even know [my child] had cancer until they presented us with this clinical trial and as my mom was reading the drugs, she’s like… well that’s chemotherapy. And then, I’m like… [my child] has cancer?” (PT3)
These parents agreed that physicians tend to ‘protect’ parents from the truth by not saying the word ‘cancer’ or refraining from referring to the treatment as “chemotherapy:”
“I kept telling people, oh no, my son doesn’t have cancer. It’s just a low grade glioma. He doesn’t have cancer […] and then the Canadian Cancer society sent us a letter saying [my child] is registered as a cancer patient. Oh okay – maybe it’s cancer then […] but I haven’t heard [cancer] from a doctor. [...] The [doctors] try to help us to cope, you know. But sometimes it’s better you give us some straight information.” (PT4)
Nevertheless, bereaved parents acknowledged how challenging it must be for the oncologists, since they are given the difficult task of delivering the results and prognosis in a realistic and honest manner, without giving false hope to the parents:
“But thank goodness, most of them are honest, and that’s what we needed. And I think that’s important for physicians and oncologists to know that.” (BP8)
Conversely, parents of children in treatment highlighted how negative results could take away hope for a cure and this will be difficult for the parents to accept. They suggested that physicians acknowledge the uncertainty around the accuracy of the LDT, as no test is 100% accurate, and that many parents will try new therapies, even if the child may not respond to them:
“If your child is in the 1% that doesn’t respond to anything, you’re taking away their hope. And the human spirit and hope is a huge factor. If you believe in something and have faith that something is going to work, sometimes [it works].” (PT1)
Moreover, parents of children in treatment also focused their discussion on how the information divulged in the first clinical encounter can be overwhelming; they suggested that physicians schedule multiple meetings with the parents, where the information can be delivered in measured doses and important concepts can be repeated at each meeting. The gap between successive meetings would allow the parents to process the information and return to the next meeting with questions. One participant recalls:
“It took a while to register. It took at least 4 meetings with [our doctor] before it got into our heads that there is nothing [they can do].” (PT4)
They also suggested that treatment decisions should not be made at the initial diagnostic encounter, given that parents typically have trouble understanding and/or accepting the diagnosis.
In the event that the genetic test suggests the tumor would not respond to any available therapies, parents first discussed what type of information should be presented when disclosing a catastrophic diagnosis and the support the care team should have at the initial diagnostic consultation, including from the palliative care team. First, they highlighted that physicians should expect parents to request a second and/or third medical opinion to reduce uncertainty of the prognosis, regardless of the expected accuracy of the test; this was particularly important if the parents had not built a trusting relationship with the treating oncologist. Second, participants agreed that physicians should provide supporting evidence for the diagnosis from other tests such as an MRI to help parents better understand and accept their child’s prognosis. Finally, participants recommended presenting statistics of the tumor type and why this specific tumor would not respond to chemotherapy to parents during the initial diagnostic consultation:
“If you have more pieces [of information] that you can put together later when you’re thinking about the [encounter] then it’s a little bit easier.” (BP5)
In addition to this, parents of children currently in treatment recommended that the child not be present during the initial diagnostic meeting, as the parents would need time to fully understand and accept the diagnosis before being able to explain it to their child.
With regard to support, parents recommended having an assigned social worker, bereaved parent, general practitioner who has built trust with the family, or other psychological support personnel in the room at the initial diagnosis or when a relapse occurs who can relate to what the parents are going through as well as help them navigate the process:
“You need someone who knows what has been happening […] almost like a bereaved parent, who can guide you through it.” (BP8)
However, parents in children currently in treatment also mentioned that too many people in the room could also be intimidating:
“The first time, we were just sitting in the waiting room, and this guy comes in… we’ve never seen him before and says, your son has a brain tumor. That’s how we found out. I didn’t even know if he was a doctor […] but then the second time, we had all these people and I thought… Oh no, it must be bad. Because the first time, it was the janitor who told me and now we have the social workers here so it must be worse.” (PT2)
Participants also suggested having someone who can take notes during the initial diagnostic encounter with the treating physician, summarizing important points and outlining the potential treatment options:
“Maybe it’s the social worker or someone else who comes in to take notes […] because you’re listening but you’re not really listening. As soon as the diagnosis comes in, it’s like bla bla bla, the teacher from Charlie Brown.” (BP1)
Bereaved parents were also concerned about the anxiety and worry that may result from the association of the word “DNA” or “genomic” to the inheritance of the brain tumor. Participants agreed that this may cause parents to feel as though they were to blame for their child’s tumor and that their other children may be at risk of acquiring this deadly form of cancer:
“If you can test for this, then I want my other children tested… because if it’s in the DNA, they would see that as a whole family thing as I can imagine […] I would just sit there and think… is this going to happen to my other child?” (BP6)
Bereaved parents agreed that it would also be important to provide psychological support to the siblings of the diagnosed child, as they may worry about eventually developing the disease:
“I’m sure it’s in the back of [my other son’s] mind… what if this is genetic and I have it?” (BP4)
Whether and when the palliative care team should be introduced was a subject of deliberation amongst bereaved parents. Initially, they disagreed about the timing of the introduction; some felt that the palliative care team should be present at the initial diagnostic encounter, while others felt overwhelmed by the ‘mob of physicians’:
“It’s almost like they were all there to protect themselves from us freaking out on them. I don’t know. I felt a little up against the wall with so many people being there delivering that news.”(BP8)
After further discussion, bereaved parents agreed that the palliative care team and other health care professionals should be introduced to the family early on, but not at the initial diagnostic consultation.
Once the prognosis has been communicated, all parents recommended that oncologists hold another meeting with the family to discuss potential treatment options as well as the risks and benefits of each option since it was widely felt “the more knowledge, the better.” Parents discussed how the options should be presented, the burden of making the treatment decision, and how the LDT could improve the quality of life of children with intractable brain tumors by not pursuing highly toxic therapies known to be ineffective.
Regardless of the test results, parents valued honesty from the health professional as well as trust; it is this honesty and trust built with the continuity of care received by the treating physician that allows parents to accept the dismal prognosis and eventually guide treatment decisions that maximize their child’s quality of life:
“I mean, that’s one of the biggest problems too, right, is that you're always seeing a different doctor […] And if one of them brought this new test, to give this… And you didn’t know that doctor, and you hadn’t seen them much before, and you didn’t quite like them […] to trust that this test was useful or that you would want to do it […] But they all seem to work that way now. You don’t see the same doctor. It’s always somebody else.” (PT3)
Some participants also highlighted how important it is for the treating physician to be in the know, as many of the parents will base treatment decisions on their physician’s recommendations and trust that they will provide them with accurate, honest, and unbiased information to make this decision:
“We needed someone to say to us that chances are, even if it does work, [your child] will probably not last another year… So how do you want that year to go? A lot depends on what the physicians are telling you.” (BP8)
All parents agreed that the treating physicians should explain all possible treatment options, including clinical trial enrolment, to the parents without persuading them toward one option or another. It should be up to the parents and child, where appropriate, to make the final treatment decision:
“It’s going to be tough for the physicians to give the right “answer” [regarding treatment options]. They gave us both sides of the coin […] Ultimately, it’s a chance of a chance, but you as parents are the ones that have to make that decision. And I think that’s tough for a lot of parents to hear. Even though they are not the professional, they will still have to make that choice at some point. Our care was amazing […] it was always that honest, up front, there isn’t hope but we’ll help you if you want to look at other things… We’ll help you if you want to do these trials, but we’re also here to make [your child’s] life as comfortable as possible for what we think is left of it.” (BP1)
Parents of children in treatment also discussed when the child should be included in treatment conversations with the oncologist. They recommended that the oncologists initially speak to the parents about the treatments and then have the parents choose what information is relevant to the child so as to avoid giving them information that may lead to unnecessary worry. However, parents agreed that children should be included in decision-making:
“You have your discussion with the doctor and then bring [your child] in after and say,[…] we’ve been discussing different [treatment] options and what we think is best for you is this. And what do you think? Do you have any questions?” (PT1)
With respect to delivering news about the failure of treatment, parents suggested that the care team approach the delivery of such information in a coordinated way, i.e. the health care team does not send mixed messages about the prognosis to the family, so as to avoid any unnecessary confusion or distress:
“One doctor came in and said, we’ve got bad news, the drug didn’t work and you guys are going to go into radiation. Then he left and another doctor comes in and says, oh we have wonderful news, we’re going to start the radiation soon. One doctor is telling you one thing, and the other says wonderful news. Which one is it?” (PT4)
Lastly, parents also agreed the LDT has the potential to significantly improve the quality of life of children with HGGs not responsive to chemotherapy. Non-invasive treatment, i.e. radiation, was viewed favorably in terms of improving quality of life since the side effects were minimal and symptom management was critical. In contrast, chemotherapy was seen as more invasive and many bereaved parents expressed their regret for deciding to follow this treatment path having known retrospectively of its inefficacy in treating their child’s specific tumor:
“The worst part was chemotherapy. […] At that time you think you’re doing the right thing, because that’s what they are telling you to do […] They’re sick, then they’re skinny, then they’re fat, then they’re skinny, then they’re fat. Thinking back on it now, I wish I would have just taken him home and enjoyed my time with him.” (BP3)
The mixed consultation ratified many of the issues highlighted in Phase I small-group deliberative consultations and led to six important family-centered communication recommendations for the implementation of the LDT in clinical practice. First, the risks, benefits, and accuracy of this non-invasive blood test, highlighting that it avoids brain biopsies to confirm diagnosis and can also inform treatment strategies, should be clearly communicated to parents at the initial encounter. Second, to address issues with medical jargon, disjointed communication in the medical team, as well as overwhelming parents with too much information that they will likely not remember or understand, a lay written summary of the main points, including a summary and interpretation of the LDT and other test results, from consultations with the care team should be provided to families to further improve communication, understanding, and acceptance of the diagnosis and prognosis of the child. Third, oncologists should pre-plan several successive meetings with the families to ensure that they provide detailed and clear information to parents in measured doses without overwhelming them during the initial encounter, which is particularly crucial when the diagnosis is catastrophic. Fourth, all families should be provided with a standardized protocol for psychosocial support, including access to social workers, a parent who has gone through a similar situation that can help them navigate the system, or other counselling support programs that may exist in the hospital. In the event that the diagnosis is catastrophic, the palliative care team should be introduced early on in the process rather than later. Fifth, with respect to how the treating physician should approach communication of the diagnosis and/or prognosis to the family, honesty, empathy, and clarity were stressed as central values to avoid causing families unnecessary confusion and distress. Last, training in compassionate and empathetic communication of medical information, including diagnostic, treatment, and prognostic information, should be provided to medical students, residents, and physicians in pediatric oncology.