This blog features expert commentaries on recent publications of interest in pediatric palliative care research. Our bloggers provide their personal take on an article chosen from our monthly citation list and discuss how it relates to trends within the field. To view our search strategy, click here.

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Trends in Pediatric Palliative Care 2017; Issue #9

September 6, 2017

Dr. Marie-Claude Grégoire

Featured article: Ringuier B, Troussier F, Boussicault G, Chapotte C, Rachieru P. [Non invasive ventilation and pediatric palliative care. A French survey]. Arch Pediatr. 2017;24(8):712–719. doi: 10.1016/j.arcped.2017.05.007. Epub 2017 Jun 28.

As I looked at the list of articles for the month of September 2017, I realized that not knowing which article to pick among an abundance of interesting articles isn’t necessarily a bad thing. The study by Ringuier et al discusses the use of non-invasive ventilation (NIV) in pediatric palliative care in France, and it caught my attention for many reasons. First, it is a topic that comes up regularly when discussing the long term care of many patients in my clinical practice as a pediatric palliative care physician. In discussions with colleagues from across Canada, I know that our situation is not unique. Second, the paper was published in French. There are many high-quality articles published in languages other than English that too often get missed, so I readily took the opportunity to highlight this one. I will summarize the main findings in lieu of official translation.

The study surveyed 186 clinicians in metropolitan France: pediatric respirologists, palliative care physicians and pediatric intensivists. The main question was: in a situation of acute or chronic respiratory distress, would you consider it “reasonable” to use non-invasive ventilation (NIV) in two groups of children with different goals of care. The first group included children with a “do not intubate” order, and the second group was made up of children with a comfort care only order. Information about the characteristics of the NIV prescription was also collected. The overall response rate was 34%, which is in the usual range for this type of study, although the response rate for the palliative care physicians group was lower (22%).

A majority of specialists surveyed found using NIV reasonable when treating children with a “do not intubate” orders, in both acute and chronic respiratory insufficiency cases. Not surprisingly, a smaller percentage, only about a third of respondents, found it reasonable to use NIV in children with a “comfort measure only” order. The specialists’ responses were very similar when asked about their prescribing experience in similar scenarios with one exception: non-intensivists had prescribed NIV for children with a “do not intubate” order with acute respiratory insufficiency and intensivists, even if both groups considered reasonable the use of NIV. In terms of other treatments offered, oxygen was selected as appropriate for almost all children while morphine and sedating medications were selected more frequently for children with a “comfort measures only” order. As for symptoms, breathlessness was the symptom cited the most frequently as indication for NIV for both groups of children. Of all symptoms listed, only two differed between the two groups: daytime hypercapnia and weight loss were selected more frequently as an indication for NIV in the group with a “do not intubate” order vs. the group with “comfort measures only” order. Finally, the criteria used to assess the efficacy of the NIV were similar in both groups in terms of the increase in comfort; the child and parental satisfaction; the decrease time in hospital; and the diminution of dyspnea the most important ones.

Despite some limitations (for example, not having parents or patients participate in the study) Ringuier et al collected important information that may be generalizable outside of France. The fact that breathlessness was used as the most important indicator for both groups demonstrates that comfort was a key factor in the decision to initiate NIV, in line with the common palliative care approach. This point is an important one for the population of patients we often work with in pediatric palliative care, especially in tertiary care centres. In our experience, many families are looking for a compromise between no ventilation in any form and mechanical ventilation provided in an invasive way (endotracheal or tracheostomy tube), for both acute and chronic respiratory insufficiency. Comfort is often the main family goal, and for some families NIV can be seen as the most comfortable option. The relatively wide range of clinician’s responses in the study may be partially explained by the fact that “comfort”, like “quality of life” is very subjective, multifactorial and individual-dependant. The lack of pediatric dyspnea assessment scales, especially for children who cannot self-report, further complicates the overall comfort assessment of children. Another good reminder from this paper is about the importance of having criteria, ahead of the NIV trial, to decide if the intervention is helpful or not. Too often interventions are started first and outcome measures established second, which changes the level of decision being made from an ethical point of view.

In conclusion, this paper confirmed what clinical experience has already taught us over the years: each intervention, like NIV, can be chosen or not chosen by families or clinicians using the same criterion of comfort. When it comes to establishing goals of care and medical interventions, guidelines help, but open discussion with families are crucial to understanding the multifactorial environment in which the child lives.




Trends in Pediatric Palliative Care 2017; Issue #8

August 17, 2017

Dr. Bill Splinter

Featured articles: Quinn C, McCarthy S, Devins M, O’Reilly M, Twomey M, Ling J. Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study. International Journal of Palliative Nursing. 2017;23(2):88–97. DOI: 10.12968/ijpn.2017.23.2.88

Bender HU, Riester MB, Borasio GD, Fuhrer M. “Let’s bring her home first.” Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care. J Pain Symptom Manage. 2017;7(17):30212–9. DOI: 10.1016/j.jpainsymman.2017.04.006

Again, we have another month of many very interesting papers in the August list of citations. Two of the papers will be discussed in more detail, and they are markedly different.

The initial article by Quinn et al reports the results of their Delphi Study of the research priorities in children’s palliative care in Ireland. The study is limited by their focus on a single nation, but much of their results can be readily adapted to other countries. Anyone contemplating research and/or a quality improvement initiative within the highly specialized field of pediatric palliative care would be well advised to review this article in detail.

Quinn identified 8 research priorities and these include good clinical governance, national pediatric palliative care strategy, training programmes, children’s rights, linkages between maternity services and children’s palliative care, needs of the family caregivers, database, care planning and bereavement. All of these priorities were considered ‘extremely important’ or ‘very important.’ Quinn provided an excellent review of a Delphi study and they also discussed the five themes identified by their process.

The second article by Bender et al reviews the Munich experience of caring for 212 consecutive pediatric palliative care patients from 2009-2015. Of their study population, only 55% had died, and among that 55%, 84% died at home, 12% at the hospital and 4% at the hospice. These are very interesting numbers and atypical when compared to Canadian norms. In our setting, with a hospice adjacent to the hospital, almost all of our families opt for hospice care at the end of life. Our hospice functions quite independently from the hospital but there is marked synergies, such as we can readily transfer patients to and from the hospital and hospice. Also, most families develop very close ties with hospice staff before the end of life course, thus feel very comfortable having end-of-life care at the hospice as opposed to their home or the hospital.

In addition to the characteristics of patients receiving care under the specialized pediatric palliative home care (SPPHC) framework, it would have been nice if the investigators reported all of the local paediatric deaths (i.e. are all deaths referred to SPPHC or just some, and if so, what are the descriptors for the patients who are not cared for by the SPPHC?). That said, they do report national numbers as comparators. The age 0-1 yr are quite dissimilar (i.e. SPPHC population is markedly different than the national numbers). Bender et al report that those in their 1 to 20-year-old age group are similar (i.e. SPPHC numbers are similar to national values, with respect to their diagnoses). But upon my review of their Table 2, I certainly do not get the same impression; for example the national average is 30% of the children that die, it is due to a neoplasm while their local, SPPHC population has a 51% incidence of neoplasm.

Overall this is a very interesting article and it is very helpful to see what is the typical practice in Munich, Germany. This facilitates comparison between countries and localities. Of particular note, is their request for using common approaches to patient categories/classifications. They do recommend the use of ICD-10 as the classification of choice for children within the paediatric palliative care population. I would tend to concur with their recommendations.




Trends in Pediatric Palliative Care 2017; Issue #7

July 11, 2017

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:

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:

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 Researchcalls 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.



Trends in Pediatric Palliative Care 2017; Issue #6

June 1, 2017

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.

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.




Trends in Pediatric Palliative Care 2017; Issue #5 – TPPCR Trends March-December 2016

May 10, 2017

Simon Robins


These info-graphics aim to categorize and communicate patterns found in PedPalASCNET’s monthly Trends in Pediatric Palliative Care Citation Lists (March-December 2016). We hope to inform the pediatric palliative research community about which journals are being published in most often; the impact factors assigned to those publications; and the most commonly reoccurring subject headings and keywords. In future we will create similar reports 1-2 times annually.

Methods and Limitations

Every article from our monthly lists were grouped together and analyzed in OpenRefine according to their journals of publication, authors, publication years, subject headings and keywords, and impact factors. This involved pulling metadata from multiple databases, including PubMed, UBC’s Summon search engine, Web of Science, and Science Direct. To avoid duplication we clustered the keywords and subject headings together under appropriate terms (typically a MeSh term). Subheadings were included under their main subject heading; for example, “palliative care–psychology” was included under “palliative care.” Worth noting, we did not include the articles from our oncology or developing world lists, and terms for population group were excluded from the visualization for subject headings and keywords.

Out of 235 articles, 51 did not have subject headings or keywords, and certain publications had a very low percentage of articles with terms assigned. For example, 30 out of the 38 articles from the Journal of Pain and Symptom Management had neither. Duplicate articles were found in several of the months and were deleted accordingly. As a result, the total citation numbers from each month were not accurate and were excluded.


In total we found 235 articles from 104 different journals. The most prevalent patient populations are “infant/infant, newborn” and “child.” Notably, “ethics,” “decision making,” and “attitude of health personnel” appear among the top 20 keywords and subject headings (figure 3). The majority of articles were published in 2016 (figure 2). This mostly comes as a result of our research team preferring the most recent scholarship for the monthly lists. Lastly, we found that the most popular journals in the field (figure 1) do not necessarily correlate with the journals which have the highest impact factors (figure 4). 





Trends in Pediatric Palliative Care 2017; Issue #4

April 2, 2017

Colleen Pawliuk

Trends in Pediatric Palliative Care Research (TPPCR) is a listserv distribution that aims to collect new and exciting research into a monthly list for anyone with an interest in pediatric palliative care. The hope is that these articles will not only contribute evidence to the practice of pediatric palliative clinicians, researchers and trainees, but also spark conversation and debate on these topics. To facilitate this discussion every month a commenter writes a blog post on one (or more) article from the list, often tying it back to their own practice or research. The commentary helps to highlight articles that may be of particular quality or interest.

Creating the list was a collaborative and iterative process. We derived inspiration and sook advice from other librarians and institutions that have experience creating similar lists to learn more about their search strategies and process. Multiple test lists were evaluated and assessed by the clinician-researchers based on their own experience and interests. This was very helpful to me, the librarian, as it helped extend my own understanding of the field, and I was able to edit the search strategies and the way we filter the results based on these discussions.

In the interest of access and collaboration we share our citation list on our blog so others can use or translate the strategies for their own needs (for instance an individual student project or a library working group). As the list has grown we have extended the scope of databases we search to include a broader range of topics and formats. They include: Web of Science for conferences, Cinahl for nursing and allied health, and PsycInfo for its focus is psychology and social sciences.

Even in a sub specialty field such as pediatric palliative care, with a small population and a limited research production, it can be difficult to keep up to date with newly published literature. The TPPCR list is filtered to remove articles that focus solely on specific treatments and cures or are localized in a particular place. Instead the focus is on articles that can be used across the population or deal with broader psychosocial themes. Our hope is that everyone who reads the citation list and commentaries finds at least one article that sparks their interest and helps them to engage in the field of pediatric palliative care research.




Trends in Pediatric Palliative Care 2017; Issue #2

March 1, 2017

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.




Trends in Pediatric Palliative Care 2017; Issue #1

February 8, 2017

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.




Trends in Pediatric Palliative Care 2016; Issue #12

January 3, 2017

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.




Trends in Pediatric Palliative Care 2016; Issue #11

December 1, 2016

Dr. Hal Siden

This month brings several good citations, many of them abstracts from the Royal College of Paediatrics and Child Health (UK) annual conference. In this month’s review I am going to highlight 2 full-length research articles I found of interest and comment on a third one.

Two articles worth reading because they are well-done studies and have implications for practice:

The 3rd article is: Jarvis, S., et al. (2016). “How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study.”  Arch Dis Child. Published Online First: 28 September 2016 doi:10.1136/archdischild-2016-310800

For 20+ years we have been discussing and debating the numbers of children who might need PPC services.  This began with an estimate made in the late 1980s based on weak data, and we have contended since then with how to count prevalence of children “at-risk” of dying from a disease-related cause. Work by Chris Feudtner, Richard Hain, Simon Lenton, and others with great support from the charity Together for Short Lives has moved this work forward.

Dr. Stuart Jarvis, Dr. Lorna Fraser, and colleagues from York University, Martin House Hospice, and the Children’s Hospice Association of Scotland (CHAS) use a sophisticated methodology to determine how many children [in Scotland] are ‘clinically unstable’ and therefore eligible /appropriate for pediatric palliative care services.  Jarvis’s report is a secondary analysis from a larger study of children’s palliative care needs in Scotland. The overall estimate in that report is very high: 95.7/10,000 (and even higher for infants). Behind the research was previous work by Fraser et al to refine ICD-10 codes with validation against the linked databases and pediatric palliative care service records, thus generating a useful list of conditions where a shortened life is likely.

Jarvis’s secondary report focuses on those who are defined as unstable, deteriorating, or dying. The authors operationalized a concept recently developed as a model by Hughes-Hallet for the UK National Health Service. They used database linkage, including hospital and community encounter records, to determine the number of children going into hospital, ICU and dying.  The clinically non-stable group is estimated at 13.7/10,000. This number compares favorably with estimates of children in need of PPC services derived from other studies, including the most recent Together for Short Lives report (16/10,000)  and work we did in British Columbia (9.8-15.3/10,000).

We need to continue to work in this area; the estimates are getting better and suggest that we focus on the estimates for the non-stable group. Comparing those estimates to actual numbers of children followed at centres in the UK and Canada suggest that either the estimates remain too high, or we have a major referral gap. This needs to be an subject of active inquiry. There will never be a final “right” number, but within similar settings (e.g., highly industrialized settings), estimates should begin to coalesce.  Getting agreed-upon estimates is important for program leaders who need to plan for service delivery and deliver messages to funders such as donors and governments.