Doctors tell parents their child is dying too late: Study reveals 31% of mothers and fathers were robbed of the chance to say goodbye because ‘medics find it too distressing to discuss’
- Grieving parents were asked how their child’s death was communicated to them
- Around one in 10 claimed they were not warned the condition was terminal
- And 42% said information of their child’s ‘imminent death was given too late’
Doctors may be telling parents too late their child is dying, research suggests.
A team in Denmark asked more than 150 bereaved parents how their little one’s imminent passing was communicated to them.
Around one in 10 of the grieving mothers and fathers claimed they were not warned their child’s condition was terminal.
This left 31 per cent feeling they were robbed of the chance to say goodbye.
The researchers claim many doctors find it distressing to discuss the pending death of a patient with their loved ones.
Doctors may be telling parents too late their child is dying, research suggests (stock)
The family of a terminally-ill patient should be kept up-to-date on their condition in an ‘open, accurate and timely’ way, the researchers wrote in The BMJ.
However, studies have shown doctors often find it ‘difficult and distressing’ to discuss the impending death of a patient, they added.
Researchers from Rigshospitalet – a hospital in Copenhagen – identified 951 children whose deaths were registered in Denmark between 2012 and 2014.
Of these children, 402 passed away as a result of a terminal illness. More than half (56 per cent) died before their first birthday.
Questionnaires were sent to the parents of these 402 children to uncover how medics guided them through their child’s passing. The parents of 152 of the children completed the survey.
Results revealed more than half (59 per cent) of the parents were told their child’s condition was terminal by a doctor.
For around a third (30 per cent) of the mothers and fathers, this information was delivered shortly after their baby was born.
However, 42 per cent said information of their youngster’s ‘imminent death was given too late’.
One in seven (15 per cent) claimed they were only warned their child was dying in the last 24 hours of their life.
WHAT DOES ‘TERMINAL ILLNESS’ MEAN?
A terminal illness is a disease or condition that cannot be cured and is likely to lead to someone’s death.
Examples of conditions that can be terminal include:
- Advanced cancer
- Motor neurone disease
- Lung disease
- Neurological disorders, like Parkinson’s
- Advanced heart disease
Sufferers of a terminal disease can live for days, weeks, months or even years.
It can be difficult for doctors to predict how long a patient may have left.
Some terminally-ill patients feel progressively more unwell, while others have ‘good and bad days’.
Treatment focuses on managing symptoms and improving quality of life.
Source: Marie Curie
Around one in 10 (12 per cent) even said they were not told at all. A similar number (11 per cent) did not realise their child was going to die until the ordeal started to occur.
And one in five (19 per cent) only realised their little one’s death was imminent in their final hours.
As well as leaving them unable to say goodbye, 56 per cent of the parents said their child’s death therefore came as a ‘shock’.
What’s more, a third (34 per cent) claimed they were not told how to access end-of-like care, while 40 per cent did not know what to do in an emergency.
One in three (33 per cent) also felt doctors misjudged how their child’s death would affect their physical health.
And nearly half (48 per cent) of the parents believe medics underestimated the impact it would have on them mentally.
However, 79 per cent of the parents felt they were told about their child’s health in an ‘appropriate manner’ and four in five (80 per cent) were satisfied with the care their youngster received.
Overall, nearly all (98 per cent) of the parents felt they should have been told as soon as their child’s ‘curative treatment options were exhausted’.
The researchers are calling for national guidelines that advise doctors on how to deliver this devastating news.
‘Healthcare professionals are exposed to great challenges in communicating with parents about their children’s life limiting illness and imminent death,’ the researchers wrote.
‘Even though [they] strive to communicate effectively with the children and their parents, several barriers on the sides of both parents and professionals may hinder even the best of intentions.
‘However, the study clearly demonstrated the parents’ need for information and support were not sufficiently met.
‘The study results may raise awareness of the importance of providing improved education and training for healthcare professionals working with children with life limiting diagnoses and their parents.’
The authors noted, however, their study was small and the stress of losing a child could affect how the parents remember the events surrounding their death.