Special Edition #01 is focused on research that examines the experiences of parents and their unique and rich personal perspectives caring for their child with medical complexity. This issue includes commentaries written by two parents, who recently participated in a virtual journal club hosted by Siden Lab at BC Children’s Hospital Research Institute. They have both graciously taken the time to reflect and provide their thoughts on two recent research articles that examine the parent perspective.
Erin Brost, Parent
Erin lives in Whitehorse, Yukon, Canada with her husband and their 2.5 years old daughter who has stage 3 HIE (hypoxic ischemic encephalopathy) and severe cerebral palsy resulting from complications at birth. Erin enjoys writing about her family’s experience with HIE and connecting with other parents of medically complex children.
Brouwer, M. A., Maeckelberghe, E. L. M., van der Heide, A., Hein, I. M., & Verhagen, E. (2020). Breaking bad news: What parents would like you to know. Arch Dis Child.
In a recent online parent journal club we had a selection of three journal articles to read which all had one thing in common: they were based on the parent perspective towards their given research focus. As a relatively isolated family of a medically complex child, living in Yukon Territory, having a chance to read about the parent perspectives in these articles, and then discussing them with other parents, was a refreshing and valuable experience that reminds me we are not alone and that our first-hand knowledge is valued.
Of the three articles I read, the one that I’ve chosen to comment on further is “Breaking bad news: what parents would like you to know”. This article stood out to me for two reasons. First of all, it included input from bereaved parents (24 of the 64 parents total) which really shows to me the level of integrity and consideration that went into the study. Secondly, it appealed to me because it is much more than just a study; it’s a concrete tool to be applied. I can see it used in our own medical future with our daughter, and shared with practitioners on a case-by-case basis – such as in a hospital admission that seems to be leading towards a poor prognosis, or prior to an upcoming high-risk surgery. This tool is presented in such a way that I could literally print a copy of Figure 1 and pack it in my daughter’s emergency hospital bag to have on hand if, and when, it seems we’ll be heading towards “the conversation”. I call it “the conversation” because every parent knows what that is about. We’ve all seen it acted out on TV and in the movies, but it’s so much more traumatic to have enacted in real life; when you have a child with a life-limiting condition you never know when, or how often even, that conversation is going to happen.
We have had the conversation – or various iterations of it – about four times in the course of our daughter’s life; three of those conversations were well delivered, and one which was less so. In reading through the barriers and recommendations presented in this article it really hit home for me as I recalled the small details that made a huge difference in the way the news was delivered and received. For some details, or barriers, there is limited control. But for the ones that you can control, such as the location of where a conversation is had, those decisions and details can make a whole world of difference for everyone involved. Especially if it’s one of the first bad news conversations those parents are having in their medical journey with their child. Healthcare professionals should take as much consideration as possible in such a circumstance, as it’s very likely that the parents are going to have some form of PTSD from the conversation itself – even with as many barriers removed as possible.
In our case, my husband and I were very fortunate with our first bad news conversation, where we were told about our daughter’s permanent brain damage following her birth. The news was delivered in a side room called “the touch down room” at the NICU of Stollery Children’s Hospital in Edmonton, Alberta. We were given advance notice that the conversation would take place, and were even told where it would take place. This simple detail, of knowing that there was a dedicated space for such a conversation, helped me keep a larger perspective of the situation knowing that this meant we weren’t the only family to have received bad news about our child, that other parents must have also sat in this same room, and they too went on to live their lives after the difficult conversation. There were many other positive details about how that news was delivered, but for the purposes of this commentary I share this prominent one.
Overall, what this study comes down to – in my perspective – is the importance of communicating ABOUT the communication. It’s about doing the groundwork so that everyone can feel safe within those difficult conversations. One of the benefits of living in a lesser populated area in the North is that we’ve been able to have a lot of thoughtful one-on-one discussions with our healthcare providers here, including one very honest conversation on quality of life in a northern context that gave us a chance to ask a lot of questions, explore different scenarios, and which ultimately concluded in the reality of uncertainty.
It’s this theme that I want to end on, which is addressed in the study as one of the barriers: physician’s failure to voice uncertainties. As a parent, let me say this to physicians, please don’t shy away from uncertainty. Please don’t delay speaking with us because you don’t know the answer and aren’t sure what to tell us. As parents, we’re not as afraid of uncertainty as you might think we are. We live with it every day and it permeates every moment with our child, not knowing how long we’ll get to have with them. If you are wondering whether to tell us about a possible (but not certain) bad news scenario with our child, just ask. We won’t judge you for being honest, we’ll thank you for doing your best and speaking with us as equals.
Marion Knutson, parent
Marion Knutson is a mom to a 4yo with a rare, incurable, life-limiting illness, and also a parent-partner in research with institutions that focus on children and neurodisabilities.
Dunbar, H., & Carter, B. (2020). Experiencing place identity and place belongingness at a children’s hospice: Parents’ perspectives. Journal of Child Health Care, 25(1), 161–171.
This article jumped out at me as I read it, as it translated my thoughts about hospice into writing.
My husband and I learned about our daughter’s diagnosis 3.5 years ago, when she was just a little over the age of one. It was a devasting moment, especially as it was only a couple months after having conquered an emotional 6-weeks in hospital, where doctors were mystified about why she wouldn’t wake up from what they could only describe as “a deep sleep”. It was at the diagnosis visit that we were given a piece of paper that said that her life expectancy was 2-3 years.
Since that time, I have sunk a lot of time and resources into ensuring our daughter has the best quality of life. But it has been exhausting. I had heard, through friends, that there was a pediatric hospice nearby. Like many of the parents interviewed for this article though, I assumed it was only for end-of-life care. I had wanted to contact the hospice because one of my wishes is that if my child were to die, I’d want her to be surrounded by all her siblings and us, her parents, in a comfortable setting.
I finally contacted the hospice in the fall of last year, which is when I learned that a hospice is so much more than what I had assumed. The relief my husband and I felt hearing that there was free respite care, and even overnight respite care, was indescribable.
Perhaps the fact that many parents had similar assumptions as mine, prior to visiting a hospice, is a call to improve the messaging among a child’s medical care team. No one had told me a hospice, much less one that provided short-term respite, was available. It was purely by chance that I knew about the one we went to. The assumption of it being solely for end-of-life care is matched with the perception that families aren’t invited until their child is dying.
Our daughter has only been there once, mostly because of Covid-19 precautions, but I can see how the hospice could become a place where we finally belong and have a sense of place identity.
The “focus on short-break respite care” is “key to supporting parents’ ability to cope with the constant demands of caring for a child with an LLC.” (Dunbar & Carter, 2020, p. 2) The hospice should be a place where the “whole family [is] catered” to, and where siblings and caregivers could be supported as well as the child. Most importantly, the hospice acting as “a bridge to the life parents had anticipated” (Dunbar & Carter, 2020, p. 8) is crucial. It’s a safe space for caregivers to grieve the lost expectations of what they imagined their lives to be. In our daily lives there is a sense, perhaps self-imposed, that we have to be strong and accepting. As if acknowledging what life would have been, had our child been “normal,” would be like saying we don’t love our child as she is. The outside world doesn’t allow us to grieve, but the hospice could offer that space.
The one criticism in this article about hospices was about routines and consistency from hospice staff. It is one criticism I also felt. The staff are nurses, and not “parents” like I expected them to be. They knew how to take care of medical emergencies, but not as much about how to play with her or how much to feed her. The strict changeover in nursing time at 7pm meant they couldn’t give her a bath at her routine time of 7:30pm, and we couldn’t eat dinner together as a family before having to pick her up at 6pm, which was the latest time they allowed. It was a disappointing ending to a great few hours – the first our family had been able to have as a “normal” family in years.
The criticism is minor when I think about how grateful I am as a parent to have access to this place. Just the realization that this is available brings so much relief in my mind. The fact that this pediatric hospice looked and felt like a home, with a communal kitchen, with spaces for siblings to hang out was, like the authors say, “core to helping to create a sense of attachment.”
For medical professionals and hospice staff that work with children with LLCs, like mine, I encourage you to help your patients and families understand that palliative care and hospice care are about so much more than dying. For those that have access to such services, pediatric hospices are, ironically, a lifesaver. In an ideal world, these would be available to all children who could benefit, not just those in major urban centres.
It is a place where families can feel safe, have a place to let go of their burdens for a short time, and feel cared for – to belong and to have a sense of identity – from the moment of diagnosis till the last breath their child takes.