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. 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.
Dr. Hal Siden
Feature Article: Ullrich, CK, Lehmann, L, London W, et al. (2016) End-of-Life Care Patterns Associated with Pediatric Palliative Care among Children Who Underwent Hematopoietic Stem Cell Transplant. Biology of Blood and Marrow Transplantation.
This interesting article examines end-of-life care provided to a very specific but important population, children who have undergone stem-cell transplant (SCT). The report comes from Boston Children’s Hospital and has a large enough population (147 subjects) to make the results generalizable to other similar programs. This group, with senior author Joanne Wolfe, has published a number of important analyses
There have been previous studies of hospitalized children but not of those who underwent SCT. The authors undertook an observational case-control approach to 110 children who did not receive PPC and 37 who did receive PPC. It is notable that only 25% of the children received PPC at an institution with a well-established, highly reputable palliative care team with at least two members who are also Oncologists. The authors do note that the rate of referral rose over the 6 years of the study sample.
On a positive note, 27% of consults by the PPC team occurred before transplant Day 0. PPC did not adversely affect survival; something that should be well-communicated to our colleagues. On a less positive note, Advance Directive (resuscitation) discussions occurred in 88% of PPC cases and 58% of non-PPC. Ideally, 100% of PPC consultations have Advance Directive discussion; this may seem challenging, but it is an important objective of pediatric palliative care, especially for the very ill patient, and as clinicians we need to work harder to develop ways to engage in that discussion.
It is less than ideal, but harder to criticize, the fact that PPC group Advance Directive discussions occurred 7 days prior to death and in the non-PPC group 2 days prior. There are many barriers to early engagement with PPC. As the authors point out, SCT is a cure-focused treatment, and it remarkable that the median duration of engagement with a PPC team was 21 days, which still may have been too short a time. Children engaged > 1 month with PPC had more hospice involvement and home deaths, suggesting that PPC influences care if given enough time.