Pediatric Palliative Care: Unraveling Common Myths, Misconceptions and Misunderstandings

Amrita Sarpal, MD, FRCPC

Fellow of the Royal College of Physicians and Surgeons of Canada

Senior Pediatric Critical Care Physician – Sidra Medicine

Assistant Professor – Weill-Cornell Medicine-Qatar

Palliative care is a form of specialized medical care for individuals with serious and potentially life-threatening, or life-limiting illness and disease and is best provided early¹ in the clinical course concurrent with disease modifying treatments. Care is designed to support and facilitate patient autonomy, access to information, enhance communication and care coordination by focusing on what is most important to the patient, family and caregivers.  

Common myths, misconceptions, and misunderstandings held by laypeople and medical personnel shroud pediatric palliative care and risk impacting its provision. Many believe that palliative care hastens death.² In fact, early referral to palliative care may be associated with increased survival time in comparison to conventional therapy.³ Palliative care is often confused with hospice care. The latter necessitates discontinuation of disease-modifying treatments in addition to providing comfort care. In palliative care, disease-modifying treatments aimed at cure are provided alongside treatment aimed to provide comfort and reduce burdensome symptoms. Despite identifying more than 400 conditions⁴ eligible for pediatric palliative care, most still believe pediatric palliative care is solely available to children with cancer.⁵ While palliative care aims to support children and their families to live as well as they can, for as long as they can, many only consider referring to palliative care when death is certain or even imminent. In reality, while most patients receiving palliative care succumb to their condition, some may be cured in the course of their disease and will graduate from pediatric palliative care. Palliative care is often viewed as giving up or losing hope.² While pediatric palliative care providers acknowledge cure may not be possible, hope is never lost. Rather, what we hope for simply changes. The team aims to help patients and families to adjust and to identify new goals and wishes.

A primary aim of palliative care is to provide relief from pain and burdensome symptoms with the goal of improving quality of life for both the patient and family.¹ Unfortunately, commonly held myths and misunderstandings prevent patients from receiving the medications they require. Many laypeople and health care providers fear administering opiates will lead to addiction or may hasten the patient’s death.⁵ Within this population, with appropriate monitoring and prescribing techniques, these fears are unfounded. Adequate pain control and relief of dyspnea reduce anxiety and energy expenditure and allow the patient and family to focus their time and energy towards building memories and fulfilling their goals.   

Through increased knowledge we can build confidence, competence and comfort in managing symptoms towards end of life and we can thereby improve the care we deliver to those most in need. Pediatric palliative care aims to add LIFE to a child’s days and not merely days to a child’s life.

References:

1. Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers and managers. Geneva: World Health Organization; 2018. Licence: CC BY-NC-SA 3.0 IGO.

2. International children’s palliative care network. 10 Common Myths about Children’s Palliative Care. 10 Common Myths about Children's Palliative Care - ICPCN. Accessed October 2021.

3. Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., Dahlin, C. M., Blinderman, C. D., Jacobsen, J., Pirl, W. F., Billings, J. A., & Lynch, T. J. (2010). Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. New England Journal of Medicine, 363(8), 733–742. https://doi.org/10.1056/nejmoa1000678

4. A Guide to Children’s Palliative Care (Fourth Edition) is published by Together for Short Lives, England. First published in 1997. Second edition published in 2003. Third edition published in 2009. Fourth edition published in 2018.

5. Friedrichsdorf SJ. Contemporary Pediatric Palliative Care: Myths and Barriers to Integration into Clinical Care. Current Pediatric Reviews. 2017: 13(1).

For more information regarding Islam and palliative care, please refer to: 

Ghaly M, Diamond RR, El-Akoum M, Hassan A. Palliative care and Islamic ethics: Exploring key issues and best practice. Doha, Qatar: World Innovation Summit for Health, 2018.