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.
Dr. Hal Siden
The December TPPCR list has a rich collection of 28 citations covering a wide variety of aspects of pediatric palliative care. Similar to the November list more than one article stood out. I observed a thematic overlap in at least 5 of the publications that focus on spirituality (Arutynyan), factors impacting decision-making (Bluebond-Langer), advance care planning (DeCourcey), meaning-making (Suttle) and the impact of information on satisfaction with care (also Suttle). Together these articles provide evidence that should help us develop a holistic approach in our care.
In Arutyunyan’s article we learn that half of the respondents had spiritual beliefs influencing their decisions, and that half would welcome having their physician ask about such beliefs if their child was seriously ill (are these the same half?). Most, however, in a 2:1 ratio would rather speak to a chaplain than a physician for spiritual support. So the message is, ask about spirituality as a source of support, and if the answer is affirmative, then call the chaplain.
Bluebond-Langer and colleagues explore the relationship between parents and clinicians as it is formed in the consultation process. They elucidate factors that bear on the success of clinical consultations as a means to support this relationship. Figure 2 is a helpful summary. Having an approach that “appreciates the dilemmas” (I like the phrase – it reminds us of the inherent uncertainty of our work) is key to helping everyone live with the decisions they make. (Is this an important outcome? Compare to Duc, Widger, et al also in this month’s list. Another way to think about this, quoting Gerri Frager, is that “DNR means Do Not Regret”). This is an article I will share with colleagues in Oncology and other fields.
There were several abstracts on palliative care published from the 46th Critical Care Congress held in January 2017, and the next 3 citations are examples. Palliative care appears to be an integral topic at this Critical Care meeting, as it should be given the number of people who die in the ICU, or at the very least qualify as having a life-limiting or life-threatening condition. In their abstract DeCourcey and co-authors discuss Advance Care Planning for children with medical complexity. As pointed out by Murphy (also in the December TPPCR list) the medically complex group is one of the largest groups of children receiving PPC services in the U.S. In Decourcey’s study bereaved parents reported on the value of Advance Care Planning to them. There was a positive correlation between Advance Care Planning with Quality of Life, preparation, and preferred location of death. They were less likely to be in the ICU and more likely to have an Advance Directive that declined CPR resuscitation.
In the first of 2 abstracts, also from the Critical Care Congress, Suttle & co. build on work by Cadell and others regarding the importance of meaning-making in post-traumatic growth and in experiencing a non-complicated grief.
In the second abstract Suttle’s group address the relationship between parents’ knowledge of medical events and satisfaction with care. Satisfaction may not ultimately become The Outcome of palliative care, but currently it is one of the core constructs for what we are trying to achieve. In this abstract, parents who feel more informed about medical events had higher satisfaction with care. The sample was small (26 parents) so caution is required in interpretation and generalization. It is also notable that reliance on “support staff” (nurses, social workers) correlated with satisfaction — leading me to wonder about physicians as communicators in ICU.
How do these articles and abstracts all tie together? They point to the importance of all of the “soft” arts of pediatric palliative care – asking about spirituality; undertaking broadly-based Advance Care Planning well beyond the nuts and bolts of Advance Directives and DNR orders; facing uncertainty in relationship; informing and searching for meaning. They also suggest the importance of the team – nurses, social workers, chaplains, which is not always apparent in the Medicine literature. The next step is to develop an evidence-based and competency-based curriculum to teach the necessary skills to clinicians in PPC. Being sensitive and well-meaning, and attending a handful of workshops, does not make one the accomplished holistic practitioner that this work requires at the level evidenced in this month’s publications.
As for conducting research and developing evidence to support training and education, last month I mentioned Ken Pituch’s work but said it had not been published [yet]. Lo and Behold we now have Pituch, et al, “Multi-disciplinary pediatric end-of-life training improves staff preparedness and lessens staff distress” published as an abstract in the Journal of Pain and Symptom Management from the presentations at 21st International Congress on Palliative Care. I look forward to seeing a full publication of their work.