Dr. Kimberley Widger
Feature Articles: Rahimzadeh, V., Bartlett, G., Longo, C., Crimi, L., Macdonald, M. E., Jabado, N., & Ells, C. (2015). “Promoting an Ethic of Engagement in Pediatric Palliative Care Research Ethics, Organization and Policy.” BMC Palliative Care 14, no. 1. doi:http://dx.doi.org/10.1186/s12904-015-0048-5.
Hudson, B. F., Oostendorp, L. J. M., Candy, B., Vickerstaff, V., Jones, L., Lakhanpaul, M., Bluebond-Langner, M., & Stone, P. (2017). “The under Reporting of Recruitment Strategies in Research with Children with Life-Threatening Illnesses: A Systematic Review.” Palliative Medicine 31, no. 5: 419–36. doi:http://dx.doi.org/10.1177/0269216316663856.
As I face a summer of writing grant proposals for new research projects – two papers from the June list of citations particularly caught my eye. Both are focused on how we do research in pediatric palliative care.
The first paper, Promoting an Ethic of Engagement in Pediatric Palliative Care Research, calls for greater involvement of children and adolescents with life-threatening illness in research. The authors highlight the American Academy of Pediatrics’ assertion that “the goal of palliative care is to add life to the child’s years, not simply add years to the child’s life” and suggest that the child’s perspective is required to know whether or not that goal has been achieved as well as to guide development of services to meet that goal. The authors provide a helpful review of ethical frameworks that can be used to promote or justify increased participation of children and adolescents in palliative care research. This paper can certainly be used for both grant proposals and Research Ethics Boards applications to highlight the centrality of children’s perspectives to advancing our knowledge about pediatric palliative care.
However, Research Ethics Boards and granting agencies don’t just want to know about the theories behind the need and ethics related to research with children, they also want to know the practicalities of how potential participants will be approached and whether the needed sample size can be achieved given the available population. The second paper, The Under Reporting of Recruitment Strategies in Research with Children with Life-threatening Illnesses: A Systematic Review, unfortunately highlights the lack of evidence to guide researchers in addressing these areas. In their review of pediatric palliative care research published in the last 5 years, the authors identified 215 relevant studies; however, in nearly 80% of these studies recruitment rates could not be calculated. There was also very little information about the recruitment process, thus the authors could not extrapolate information to guide other researchers on the best practices in recruitment for this population. As well, there was little information provided about why participants chose to take part in research or whether they found participation to be burdensome. All of this type of information would be incredibly helpful for researchers (like me!) looking to design studies that will include the perspective of children. This information could be used to anticipate and address potential concerns of Research Ethics Boards as well as clinicians who are often the gatekeepers to accessing this population. Hudson and colleagues notes that restrictive journal word limits may be one factor that prevents full disclosure of all aspects of the recruitment process as part of publishing study findings. Their suggestion to include this type of information as supplementary material along with a publication is an excellent one.
Including the perspective of children in pediatric palliative care research is an imperative that is not without challenges. Advancement in this area requires open reporting and sharing of both the successes and challenges of conducting research in this area, and hearing from the children themselves what it is like to take part in this type of research. I encourage the pediatric palliative care research community to collect and share this information in the body of manuscripts or as supplemental material so that we can learn from each other and continue to advance our field. Our patients and families deserve nothing less.
Dr. Adam Rapoport
Feature Article: Birchley, G., Gooberman-Hill, R., Deans, Z., Fraser, J., & Huxtable, R. (2017). “Best interests” in paediatric intensive care: an empirical ethics study. Archives of Disease in Childhood. https://doi.org/10.1136/archdischild-2016-312076
In my role as a pediatric palliative care physician, I routinely find myself meeting with families and PICU colleagues, trying to determine the best course of action to care for a critically ill child. The ethical principle of “best interests” is meant to guide decision-making in these situations. Much of the time, all parties are able to reach an agreement, even when it leads to the decision to withdraw life-sustaining treatment and allow the child to die. But occasionally there are situations where the PICU feels death is inevitable, ongoing care is “futile”, and discontinuation of life-sustaining treatment is in the best interests of the child; yet the parents disagree.
The May 2017 “Trends in Pediatric Palliative Care Citation List” was filled with interesting new publications, but the one that most caught my eye was this article by Birchley et al. The focus of this study was how parents and staff make decisions in the Pediatric Intensive Care Unit (PICU), particularly in circumstances where the medical team recommends forgoing a child’s life-sustaining treatment.
Purposive sampling was used to recruit 14 parents and 15 PICU staff to participate in this qualitative study. Seven members from “clinical ethics committees” were also recruited, but unfortunately the findings from these interviews do not appear to be reported. The investigators found that parents and staff preferred making decisions together, but while parents believed that factors affecting the child should be the sole focus of deliberations, staff tended to consider the impact on the family. When disagreements were protracted, staff often gave parents more time so that their “feelings could adjust”; staff avoided turning to the courts as the ultimate arbiter of unresolved disputes.
Overall, I found the results of this study to be congruent with my own lived experience. Parental conviction that their child’s interests alone should guide decision-making is admirable, but unrealistic and even undesired in my opinion. Pediatric palliative care identifies the family, not only the child, as our unit of care; more often than not I have found that we are able to successfully take into account the interests of all. I was encouraged that PICU staff preferred to give parents more time, rather than turning to the courts, even when disagreements were prolonged. The emotional experience of witnessing one’s child not improve, and possibly deteriorate, despite best efforts of PICU staff is often more helpful to parents than recurrent family meetings or threats of legal recourse.
But one aspect of this publication did trouble me. The authors concluded that “alternatives to the consensus approach” may be needed in light of clinician reluctance to utilize the courts when agreement cannot be reached expeditiously. Moreover, the authors suggest that one such alternative would be to seek parental assent in these situations, as opposed to their consent. In other words, while parental agreement to forgo their child’s life-sustaining treatment would be desired, it would no longer be necessary.
Although the authors state that clinicians have “doubts regarding the efficacy of the legal processes” to resolve disputes (presumably in favour of the PICU’s position), this is not supported by the quotes shared in the article, nor is it consistent with Canadian case law (I am not familiar with UK case law where this study took place). Rather, the primary reason for avoiding the courts in my opinion, and as shared by the interviewed clinicians, is that a combination of patience, compassion and a trusting relationship with parents can eventually resolve most disputes. It may be that the authors are primarily concerned about the length of time to reach resolution. So let me ask – just how long should it take parents to accept their child’s death? Personally, I’m amazed at how often parents accept our medical recommendations to withdraw life-sustaining treatment after just a few days or weeks in the PICU. I think this speaks to the deep trust that parents have in their child’s clinicians, whom they correctly assume also want the best for their child. Any unnecessary suffering by a child is unsettling, but we must remember that our own anguish is likely a fraction of that experienced by the parents. Fortunately, there is much that we can do to minimize the suffering of a child while resolution is being sought, and in my experience PICU clinicians are among the most skilled at ensuring a child’s comfort. Finally, the authors may be troubled by the unacceptable toll that protracted disputes place on the already limited resources of the PICU. However, despite the many times I hear this concern, I’m not aware of any published evidence to support it. Our own PICU in Toronto is regularly short on beds and staff, but never has anyone suggested to me that the cause was children being inappropriately kept alive on life-sustaining treatments.
Unilaterally resolving disputes with parents may facilitate a quick resolution, but the goal of medicine is not to make things easier for healthcare providers; the goal is to help those in need of our assistance. In pediatric medicine those in need are the child and the family.
Andrea Johnson, PhD (c), RSW
Feature Article: Rosenberg, A.R., Wolfe, J., Wiener, L., Lyon, M. & Feudtner, C. (2016). Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents. JAMA Pediatrics
Although the practice of medical truth-telling has evolved to regularly include full disclosure of medical information to patients, with adolescents, this remains a developing area of practice and a clinical curiosity and interest of mine. Conversations regarding disease progression and prognosis with adolescent patients are challenging, feel uncertain, and often carry an emotional impact on everyone who participates. Within clinical discussions surrounding disclosure of medical information to this population, the thread of ‘to tell or not to tell’ is woven tightly. This thread often becomes the focus of discussion and planning and the argument for and against medical truth-telling can be difficult to navigate. This interesting article is an important review of the ethical justifications, interpersonal perspectives, and pragmatic considerations that should be considered within the context of medical truth-telling with adolescents.
The central tenet of this article is that efforts must be made to compassionately and persistently communicate information about disease and prognosis to adolescents with advanced diseases. Two themes that regularly arise within truth-telling practice are navigating ethical interests and the different perspectives of those involved in the truth-telling. Many ethical issues often present (adolescent patient autonomy vs parent interest and cultural values vs truthful disclosures among many others) and the authors highlight the importance of understanding these diverse ethical tensions within the context of truth-telling. They also point out that there may be times when other ethical values may supersede truth-telling (for example developmental phase of the adolescent, culture, religion) however, I think we have to not lose sight of the adolescent patient within these tensions.
Disclosing disease and prognostic information to adolescents and their parents is made complex because this medical truth-telling is not uniformly supported by those involved. There are many reasons why medical truth-telling may not be supported by clinicians and parents and this review offers a summary of evidence to challenge these perspectives. Notably, a study by Kreicbergs et al. (2004) with 429 bereaved parents demonstrated that no parents who discussed their child’s upcoming death with their child regretted doing so in contrast to 90% of parents who didn’t discuss their adolescent’s death regretted not doing so. The authors also present compellingly that adolescents want opportunities to be medically informed, to process their medical situation, and often want to participate in decision-making.
Finally, within the trend noted above, what is sometimes forgotten in ‘to tell or not to tell’ is what each adolescent wants to know about their disease and prognosis and the extent of their involvement in receiving medical information and making medical decisions. The authors present a relational approach to truth-telling with adolescents and their families that is mindful of process and considers the needs of adolescents and parents. They also provide some helpful conversation starters that will assist clinicians to begin these often difficult conversations. This is an important article for practice. Although medical truth-telling can be emotionally difficult for clinicians, facilitating conversation with adolescents about their disease and their prognosis (if they want this) is patient-centred care. Honest and open conversation about their current medical situations can impact their coping and how they choose to live the remainder of their lives.
Featured Article: Steele, R., Cadell, S., Siden, H., Andrews, G., Smit Quosai, T. & Feichtinger, L. Impact of research participation on parents of seriously ill children. Journal of Palliative Medicine.
In the last few years, research in pediatric palliative care (PPC) has become more prominent in the literature, but institutional review boards are still offering little support to this type of research. The ethical arguments for and against research in PPC are great examples of the conflict between autonomy and beneficence. Parents understand the need for research in PPC and would welcome an opportunity to share their experience; yet, their voices are too often unheard because their child’s clinician is hesitant to introduce studies to them by fear of increasing burden. This paternalistic approach to medicine puts patients and their families’ autonomy at stake and also increases the gap in pediatric palliative care knowledge.
Concerns about research with vulnerable populations are unequivocally warranted. However, a recent article has shown that families with children who have a LTC experience positive effects from their participation in studies. Empowerment, catharsis and the sense of helping others were among the benefits of research participation. Yes, the experience of talking about a painful situation may exacerbate negative feelings for some parents, but this was only found in a small minority of participants, and often these parents expected such effects.
Although the arguments supporting the barriers to research in PPC are worth our consideration, we should not assume that participating in PPC studies will be too painful for parents. The clinicians’ role is to give parents enough information so they can make an informed decision about their participation in research. Parents have a voice of their own – please let them speak for themselves!