How to talk about death

Parents of critically ill children often want clarity from physicians over and above language choice

Doctors are aware of the need to avoid clinical jargon when speaking with patients. By and large, most of us manage to speak in the patient’s voice rather than our medical one. But euphemisms can trip us up.

While I like the language theory of euphemisms, some of them drive me mad: I can’t stand the expression ‘falling pregnant’ – it sounds like a woman trips up and lo and behold nine months later a baby pops out! And more recently the euphemism of ‘passing away’ for death has irritated me.

According to a recent article in Medscape, current consensus guidelines recommend against the use of euphemisms when discussing death with patients and families.

In a study published in JAMA Network Open, researchers reviewed conversations between clinicians and parents of critically ill children. The study participants included 20 parents of 13 infants with neurological conditions who were hospitalised in a paediatric ICU in a hospital in the south-eastern United States. Family meetings were scheduled to discuss prognosis and whether to start, not start, or discontinue life-sustaining treatment. The discussions were recorded, transcribed, and anonymised.

Twelve infants required mechanical ventilation, six required chest compressions, and five had a do-not-attempt resuscitation order placed. Two infants died during the hospital admission process.

The primary outcome of the study was language used to reference death during family meetings between doctors and families. In the family conversations, death was referenced 406 times (275 times by doctors and 131 times by family members). Families were more likely to use the words die, death, dying, or stillborn.

In addition to a category for use of words, such as ‘die’, ‘death’, ‘dying’, or ‘stillborn’, the researchers identified four types of euphemisms used in place of these terms. They characterised the types of euphemisms as survival framing (for example, ‘not live’); colloquialisms (for example, ‘pass away’); medical jargon or use of physiologic terms (for example, ‘irrecoverable heart rate drop’); and the use of pronouns without an antecedent (for example, ‘it might happen soon’).

Over 90 per cent of references to death in the conversations were euphemistic. Medical jargon was the most common type of euphemism used by clinicians (118 of 275 references), while colloquialism was the most common type used by family members (44 of 131 references).

The results show the high rates of euphemistic language used in discussions of death, the authors noted. They also proposed that their classification of euphemistic language could provide a framework for the use of language in discussions of death. And more research is needed to assess the effect of language on understanding, decision-making, and doctor-patient relationships, the researchers concluded.

An accompanying editorial noted that using a euphemism, such as ‘pass on’ instead of ‘die’, may be an intentional choice by physicians to use less harsh language, but it may still cause confusion. However, if a family consistently uses softer terminology in these discussions it may be more empathetic for doctors to mirror that usage rather than persisting with direct references to death and dying.

While there is evidence of euphemistic language use in the adult setting, until now, there has been limited information about this in children. A striking aspect of the study is that parents used terms, such as ‘death’ or ‘die’ more often than clinicians, and they sometimes used these terms as a way to clarify what the doctor was saying. It suggests that parents often want clarity over and above language choice.

It should be possible to be both clear and compassionate, while supporting families and helping them make the best decisions for their children. And probably the next  important piece of research is to learn more about what families experience as supportive during conversations with clinicians about death and dying.

Do you have strong views about the use of euphemisms in medical practice? Are there particular expressions that irritate you? If so, please drop us a line with your thoughts.

And if not, I may have to accept that I’m just a grumpy old bugger that needs to let these things pass on!