Relaxed about dying?

“Now we must wait, wait. These hours…. The gurgling starts again — but how slowly a man dies! …By noon I am groping on the outer limits of reason. …every gasp lays my heart bare.” Erich Maria Remarque, All Quiet on the Western Front

In Remarque’s novel, the agony of the German soldier, witnessing the slow death of an enemy combatant, is heightened by his own guilt (the narrator had stabbed another soldier in self defense). However, his powerful evocation of distress (and guilt) at witnessing a slow dying is very close to the expressed concerns of parents and clinicians who are watching the death of a child.

In such circumstances would it be ethical for doctors to give drugs to stop a child’s gasping breathing?

New Dutch guidelines, described recently in the journal Pediatrics, specifically permit this option. In the Netherlands, in this situation, doctors will sometimes give the child a “muscle relaxant”. These are drugs that paralyse the child’s muscles. They stop the child’s breathing, consequently ending the child’s gasping, but also ending their life.

Why would such steps be needed? To understand this it might be helpful to describe what happens when someone (child or adult) dies.

When a child is in the last phase of dying, they lapse into unconsciousness. Their breathing often becomes irregular. They sometimes stop breathing and then start again after a long pause. Often children start to take deep, infrequent “gasps” that gradually become further and further apart, before stopping completely.  Such gasps are thought to be a basic (subconscious) reflex, arising deep in the brain-stem. They are part of the body’s in-built mechanisms for auto-resuscitation. However, sometimes this phase of gasping can go on for minutes or even hours.

When children take these deep last breaths parents sometimes worry that the child is in pain. They ask me, as the child’s doctor – is she suffering? Sometimes they ask, is there anything you can do?

It is in this context that Dutch doctors might give a muscle relaxant drug. In contrast to most other parts of the world (see here for example), this has been an accepted part of end of life treatment in the Netherlands for some time.  The new guidelines do two things. First, they specify the situations or reasons why this may be permitted. Second, they require doctors to report to the relevant authorities any such deaths as instances of “active ending of life”.

There are two justifications or situations that are cited in the Dutch guideline. First, the guideline describes giving muscle relaxants (with sedatives and pain filling drugs) to stop “prolonged gasping and potential suffering” in infants who have been taken off breathing machines in the expectation that they will die. Second, the guidelines suggest that in extreme circumstances these drugs might be given not to relieve the child’s suffering, but to relieve the distress of parents facing a slow but inevitable dying process.

The first reason (based on the suffering of the child) faces a fundamental decisive objection. Muscle relaxant drugs paralyse muscles, but have no impact whatsoever on pain perception. The danger is that they stop the child’s ability to breathe, but not their ability to feel distress. It is imperative, therefore, that whenever they are used that doctors make certain that the patient is unconscious. However, this then leads to a paradox. The reason for giving the drugs is because doctors are uncertain and concerned that the child might be suffering.* Yet, at the same time, the necessary condition for giving muscle relaxant is certainty that the child is unconscious!

In the Dutch guideline, they specify that muscle relaxant drugs must be given with “high doses of analgesics and sedatives”. Yet, if the doses of pain-killers and sedatives are high enough to ensure that the patient is comfortable, why is the muscle relaxant needed?

The fundamental reason that some Dutch doctors use muscle relaxants in dying patients is the second one given in the guideline. It is to relieve the distress of the observer – particularly the parents, and perhaps too the caregivers. As Remarque powerfully described, it is not easy to watch someone die. But that raises the fundamental question of whether it is appropriate to accelerate the death of a patient in order to relieve the suffering of others.

One way to relieve the suffering of parents (and of other staff) is to offer reassurance, as well as careful, regular assessment of the patient to make sure that they are not in discomfort. In most cases, families are able to take comfort from that. One mother, who I spoke to recently, reflected powerfully and insightfully on her own experience of holding her dying baby. He had experienced gasping breathing for almost a day before finally dying. She expressed gratitude for the time that she had with her child, and was glad that no doctor had offered to accelerate his dying.

Good palliative care should pay attention to the wellbeing of family as well as of the patient. However, witnessing the death of a beloved family member is never easy. Each gasp will indeed lay the heart bare. But perhaps it is not the role of medicine to prevent that.

*It is very difficult to be sure, but most professionals believe that patients who are ‘gasping’ at the end of their life are unconscious, and completely unaware of their surroundings. How could we ever know? In adult patients with cardiac arrest, gasping appears to be common. It is reported in perhaps 1/3 of cases and may be more common in patients who end up surviving.  However, in this prospective study of 344 patients who survived after cardiac arrest, and of their near death experiences (18% of patients had some recall), there were no patients who described distress or pain.

Further reading:

Perkin, Resnik. The agony of agonal respiration. JME 2002

Kuhse. Response to Ronald M Perkin and David B Resnik: the agony of trying to match sanctity of life and patient-centred medical care. JME 2002

Hartogh Comforting the Parents by Administering Neuromuscular Blockers to the Dying Child: A Conflict Between Ethics and Law? J App Phil 2014