Commentary By:
Khue-Tu Nguyen – Resident at University of British Columbia, Canada – Khue-Tu Nguyen is a UBC PGY-5 in Adult Palliative Medicine. She completed her MD at UBC and Internal Medicine Residency at the University of Calgary. She is passionate about palliative medicine and broadened her knowledge with a fantastic pediatric palliative care rotation at BC Canuck Place and BC Children’s Hospital.
Feature Article
Pierron, C., Maillard, A., Farnoux, C., Grimaud, M., & Bourgeois, F. L. (2023). Gasping in Dying Children: Health Care Professionals’ Feelings and Knowledge. J Palliat Med.
Commentary
Differences and parallels between agonal breathing and terminal secretions: experiences of healthcare providers, families, and … the unconscious patient?
Gasping—or agonal breathing—is an autoresuscitation reflex caused by severe brainstem hypoxia and although dramatic, there is no evidence to suggest that gasping is experienced as painful by the patient. [1] Gasping is a result of decerebration and occurs when the electroencephalogram is flat or brainstem reflexes have been lost; as such, it is believed that gasping does not cause pain or discomfort to the patient. [2,3,4] That said, parents who see gasping in their dying child may experience severe distress, as it often, from their perspective, indicates suffering. [5,6]
The objective of this study was to assess healthcare professionals’ understanding of gasping in dying patients in neonatal intensive care units and pediatric intensive care units via a 9-item questionnaire. Their study had an impressive 51% response rate, out of 488 surveyed. Of note, 43%, or almost half, of healthcare professionals felt that gasping was uncomfortable for the patient and 91%, or nearly all, felt that it causes distress in parents.
There have been discussions about whether a patient can experience discomfort from a particular end-of-life phenomenon (terminal secretions, or “death rattle,” as an additional example), which inevitably leads to conversations about whether treatment of said sign should be initiated or not, or if simply educating the family that it does not cause discomfort should be the preferred course of action, given the potential side effects of these medications. Some argue that we should “treat the family,” and therefore trial antimuscarinics, for example, acknowledging that the treatment is not a guarantee and there are potential for side effects to the patient.
One specific patient encounter comes to mind:
As a palliative care fellow on a tertiary palliative care unit (PCU) looking after a patient whose journey would likely include end of life on this unit, I discussed what to expect with this patient and their family. We addressed terminal secretions and the classic teaching that, like snoring, it may not be perceived by the patient, but that it may impact those around them. We told them that we would of course try medications to address these secretions if it is uncomfortable for the family to witness. The family admitted that it would indeed be quite distressing to see and hear, but stated that, thanks to this knowledge that it is likely not uncomfortable for the patient, they are therefore reassured and do not need the medication. The patient, however, had this to say:
“I’m glad that I won’t feel uncomfortable if these secretions happen. But I don’t like looking like that before I die. I know I’ll be comfortable, but I also want to look and sound comfortable, like myself. That is important to me—how I look before I go. […] Please try the medications to help me look the way my family and I want me to look, before I go.”
We have heard the voices of healthcare providers and family members witnessing these distressing signs. Understandably, it is impossible to ask the unconscious patient what they would want in these situations—to trial antimuscarinics or not? Or to administer a neuromuscular blockade or not (depending on its legality in the patient’s country)? Given how much importance we place on educating about and preparing the patient for what end-of-life entails, and asking what patients would want at end of life, we postulate that it would be valuable to explore the patient’s preferences in these specific scenarios, as how they look or sound during their last moments of life may touch upon their dignity if they were still able to voice it. As the patient above described, their life after they will have lost consciousness matters too.
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[1] Tomori Z, Donic V, Benacka R, et al. Resuscitation and auto resuscitation by airway reflexes in animals. Cough Lond Engl 2013;9(1):21.
[2] Fewell JE. Proective responses fo the newborn to hypoxia. Respir Physiol Neurobiol 2005;149(1-3):243-255.
[3] Tomori Z, Benacka R, Donic V, et al. Reversal of apnoea by aspiration reflex in anaesthetized cats. Eur Respir J 1991;4(9):1117-1125.
[4] Stewart GN, Guthrie CC, Burns RL, et al. The resuscitation of the central nervous system of mammals. J Exp Med 1906;8(2):289-321.
[5] Perkin RM, Resnik DB. The agony of agonal respiration: Is the last gasp necessary? J Med Ethics 2002;28(3):164-169.
[6] McHaffie HE. Lingering death after treatment withdrawal in the neonatal intensive care unit. Arch Dis Child Fetal Neonatal Ed 2001;85(1):8F-12F.