Commentary by Dr. Natasha Datoo
Feature Articles:Tatterton, M. J., & Walker, C. (2019). The Prevalence of Nonprescription Cannabinoid-Based Medicines in British Children’s Hospices: Results of a National Survey. J Palliat Med.
Wee, B., & Hillier, R. (2008). Interventions for noisy breathing in patients near to death. Cochrane Database of Systematic Reviews, (1), CD005177.
Prentice, T. M., & Gillam, L. (2018). Can the Ethical Best Practice of Shared Decision-Making lead to Moral Distress? J Bioeth Inq, 15(2), 259–268.
Other Articles Referenced: Knops, R. R., Kremer, L. C., Verhagen, A. A., & Dutch Paediatric Palliative Care Guideline Group for, S. (2015). Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands. BMC Palliative Care, 14, 57.
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As a new pediatric oncologist who is now doing a year of training in pediatric palliative care, talking about death and dying is something I have been thinking a lot about recently. Disclosing to a family that their child has an incurable brain tumour or has relapsed AML and eventually taking them through the signs and symptoms of end of life is never easy. Communicating that the medical team shares the families hope, but also needs to prepare for end of life progression, is a conversation that I am learning can be done in many different ways. Different words, different styles, different emotions – depending on the physician, family and situation.
In reading through this month’s Trends in Pediatric Palliative Care, the theme of communication stood out in several of the articles featured. The three that I will discuss in my commentary highlight the importance of communication in scenarios that we often face: addressing the issue of cannabis oil for symptom management, explaining noisy breathing at end of life and navigating the moral distress that can arise from shared medical decision making. In each of these, it is clear that communication is a key component to a successful interaction between the patient, their family and the care team as a whole.
In the Tatterton and Walker review, the objective of the study was to identify the prevalence of cannabis oil (CO) use by families in children’s hospices in the United Kingdom. Cannabis remains illegal in the UK, yet the authors find that in pediatric palliative care, the use of nonprescription Cannaboid-Based Medicines (CBMs) to manage distressing end of life symptoms is growing. The study used a 10 question survey and distributed it among the 54 hospices in the UK. Of the 40 hospices that responded 87.5% of them knew families and patients who were using CO to manage symptoms, 69% of hospices had families who had asked if CO could be brought into the hospice and 54% of organizations permitted CO to be brought into hospices.
Since the principles of hospice care and palliative care include a holistic approach, it really is our job to open the lines of communication about CO. Failing to acknowledge the use of CO has the potential of putting children at risk and can result in issues such as drug interactions and side effects. The paper describes approaches taken to similar, socially taboo subjects, suggesting that practitioners who build supportive relationships with service users and adopt a positive, judgment-free position, benefit from more truthful interactions with families. Keeping the lines of communication open and asking about CO in a non-judgmental, open way hopefully will allow us to provide a safe venue for families to talk about and explore this topic.
The second article I want to highlight is Wee and Hillier. This was an updated Cochrane review from the original review in 2008 that looked at interventions around end of life noisy breathing or death rattle. 32 studies were identified and four met all the inclusion criteria. The conclusion from the original Cochrane review remained the same in this article that there was no evidence to show that any intervention, be it pharmacological or non-pharmacological, was superior to placebo in the treatment of noisy breathing. A similar finding was reported in Knops, R. R., Kremer, L. C., Verhagen, A. A., & Dutch Paediatric Palliative Care Guideline Group.
The death rattle is unfortunately one of the symptoms for which there are no medical interventions which have been proven to be better than a placebo. In such scenarios, anxious families need explanation, reassurance and discussion about any fears and concerns associated with the terminal phase and death rattle. One of the palliative care physicians I am training with suggests that acknowledging the distress of the noisy breathing, and allowing for the fear that death is near, may be as therapeutic as giving medication. I am learning that communication may be the best intervention we have in trying to treat this difficult symptom.
The final article I want to comment on is Prentice and Gillam, L. This article addresses the concept of moral distress within healthcare. The concept originated within nursing literature where it is reported to most commonly arise when nurses feel required to provide burdensome treatment which they regard as not in the best interest of the patient, and feel powerless to act to the contrary. The article discusses how one of the most common constraints physicians can experience is related to shared decision making with families. In shared decision making the medical decision is made by the physician and patient with the goals of ensuring that the patient receives the best-known treatment that serves his or her interests. In the case of a child, the patient’s best interests are intrinsically linked with the interests of the family. When there are disagreements in terms of goals of care, this can cause moral distress and a break down of relationships.
A common reaction to situations of moral distress in physicians is to hide or suppress their emotions and not talk about it. Instead, the authors stress that a greater appreciation of moral distress within physicians may aid in creating a climate where concerns can be voiced and discussed in a constructive manner amongst healthcare providers. When all members of the team are working towards the same goal of upholding the best interests of the patient, being able to openly communicate about a difficult situation can create better outcomes for all involved.
Whether discussing cannabis as a treatment option, explaining what end of life symptoms look like or trying to come to a decision in a difficult goals of care situation, open communication seems to be a key to a successful interaction. This certainly stood out to me as I read through the articles in this month’s Trends in Pediatric Palliative Care. On a more personal level, I also am realizing that learning to communicate in difficult situations is one of the skills of pediatric palliative care training that can be applied to all areas of medicine, and life in general.