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
Feature Article: Bateman, L. B., et al. (2016). “Physician communication in pediatric end-of-life care: A simulation study.” American Journal of Hospice & Palliative Medicine 33 (10): 935-941.
This month’s list has a wealth of interesting articles. The Bateman article caught my attention because it addressed head on the need for structured training in [physician] communication with parents at high intensity moments. The article brings together two emerging trends – increasing attention or pediatric palliative care, and the use of simulation for clinician education.
Only a few studies have looked directly at the process of physician-parent communication at end-of-life, and the authors cite the excellent article by deVos (Pediatrics 2015). Betty Davies and Rose Steele have published new data on provider-parent communication (Qualitative Health Research 2016), but not at end-of-life. Ken Pituch and colleagues at the University of Michigan have used actors and video as a training tool, but have not published data on their approach.
The Bateman study shows the potential of simulation for identifying poor practice (which they do), and suggests the opportunity for training and modeling in better approaches.
One niggling item. In a study with only 13 subjects, there is no need to use percentages (e.g., 23% when they meant 2 participants). This may have been an editor’s decision and not the authors’.
Other interesting articles this month:
Coombes, L. H., et al. (2016). “Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use.” Palliative Medicine 30(10): 935-949.
- QOL measures are key to outcome determination, and more work needs to be done in this area.
Funamura, J. L., et al. (2016). “Characterizing mortality in pediatric tracheostomy patients.” The Laryngoscope, doi:10.1002/lary.26361
- We have many tracheostomy patients- understanding their survival curves is important for our counseling of families.
Lotz, J. D., et al. (2016). “”Hope for the best, prepare for the worst”: A qualitative interview study on parents’ needs and fears in pediatric advance care planning.” Palliative Medicine. doi:10.1177/0269216316679913
- Some reasons why parents don’t eagerly come to those Family-Team meetings we value so much.
Osenga, K., et al. (2016). “A Comparison of Circumstances at the End of Life in a Hospital Setting for Children With Palliative Care Involvement Versus Those Without.” Journal of Pain & Symptom Management 52(5): 673-680.
- Like the Coombes article, we need to show how processes and outcomes differ because of PPC involvement – it is not black and white, or obvious to others in the absence of evidence.
Vollenbroich, R., et al. (2016). “Listening to parents: The role of symptom perception in pediatric palliative home care.” Palliative & supportive care 14(1): 13-19.
- Symptom assessment is a critical skill – we need to be experts at interpreting our own observations and families’ as well.
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.