11 April 2016

How to counsel parents: Part 1

A guide for consultant neonatologists

Dear Consultant Neonatologist,

Welcome to our blog! Every day we keep hearing more stories of parents having been given misinformation, half-truths and even lies by your colleagues. So we thought we should write a guide on how to counsel parents who have had a prenatal or postnatal diagnosis of trisomy 18 (or trisomy 13, or in fact any life limiting condition) and who plan to continue their pregnancy.

I'm guessing this subject isn't covered much in training, so this is our helpful guide just for you. Please feel free to share with your colleagues and juniors.

  • Part 1 will cover what not  to do when counselling parents with a new diagnosis of T18. This is based on the experiences of parents who have endured these conversations.
  • Part 2 will give advice on what to do when counselling these parents, and some general tips.
  • Part 3 will model a sample conversation between Dr Excellent (the consultant neonatologist we all dream of) and Johnny and Jackie, a couple with a prenatal diagnosis of trisomy 18 for their child.
  • In Part 4, Dr Excellent will have a conversation with Mary and Michael, a couple with a postnatal diagnosis of trisomy 18.

So, on to Part 1

This is what NOT to do when counselling a family with a prenatal diagnosis of trisomy 18 (with many of the points drawn from our own experiences).

  • Don't be an hour and a half late without at least calling and giving them the opportunity to get lunch or rearrange.
  • Don't simply introduce yourself, sit down and say nothing, expecting the parents to start the meeting. You are the host here: start.
  • Don't use the phrases 'incompatible with life' or 'unsurvivable' because, as Keith Barrington so rightly points out, any of us can look on the internet and find out you're a liar in 5 minutes.
  • In fact, on that note, don't lie full stop. We will probably find out, and you'll look stupid. Don't tell us that no-one has ever been treated for trisomy 18 before, or that babies with trisomy 18 don't come off ventilators, or nobody with T18 lives longer than two years. How are we supposed to trust you if you lie?
  • Do acknowledge that there are a wide variety of outcomes. Death in the first week of life may statistically be the most likely outcome, but it is not certain.
  • Don't use unnecessarily technical language that we don't understand in order to baffle us. It is your job to communicate effectively with us. Do it.
  • Equally, don't talk down to us when we indicate that we do understand. Patronising us will not help.
  • Don't pretend that the palliative approach you favour is in fact full treatment. Blow-by oxygen and ventilation are in different leagues (and you know it!)
  • On that note, explain all the options to us so that we can choose. If you're not prepared to offer one of those options, or you don't recommend it, tell us.
  • Don't criticise other countries' practice. Just because somewhere does something differently it doesn't mean that they are wrong. Ethics are not 'different in America' (whatever our neonatologist thinks).
  • Don't tell us scary stories, in which you deny or withdraw care without parental consent, for example. Is this supposed to build our trust in you? Or perhaps you want us to go elsewhere.
  • Don't act as though you are the arbiter of our child's best interests and we are simply blinded by love. You do not know our child's interests better than us.
  • If you're going to quote stats and facts at us, make sure you know what you're talking about. (As an example, T13 survival is not better than T18: it's the other way round.)
  • Don't use 'quality of life' against us. The evidence for a good quality of life for children with T18 is overwhelming, and actually our children will not be 'vegetables'.
  • If we are clearly offended by a comment, apologise, and don't repeat it.
  • Don't act as if you are right and we are wrong: we simply disagree.
  • Don't threaten us with escalation. Mediation, ethics and even court are simply the next steps in a process. They shouldn't be used as threats.

Real-life examples!

Here, for interest (and reassurance), are some examples of how NOT to do it from parents who have experienced both prenatal and postnatal diagnoses of trisomy 18. Worldwide: this is a global issue.

On the certainty of death
  • "I hope [your daughter] will die soon." (Meant kindly, in that a drawn-out death wouldn't be a good thing.)
  • "He/she's going to die soon/quickly." (Many, many parents reported this comment from their apparently psychic neonatologists.)
  • "If it were my child, I would just let her die."
  • "I'd say we're looking at two weeks for survival." (Child is now 3 months old and counting.)
  • "She will live a few weeks, maybe months." (Child is now five years old.)
  • "She has a zero percent chance of living."
  • "She is going to die right now." (100 days later...)
  • "You can take her home to die or leave her here to die."
  • "She won't be one of the 10% who lives past her first birthday."

They may be psychic but....
  • "We're not miracle workers!" (On why they would do nothing for the baby once born.)

On why treatment would not be appropriate
  • Neonatologist: It would not be appropriate to resuscitate your daughter.
    Parent: Why not?
    Neonatologist: Because she has Edwards syndrome.
    Parent: Why does that mean it's not appropriate to resuscitate her?
    Neonatologist: Because she has Edwards' syndrome.
    ...repeated ad infinitum
  • "The more you do, the longer he will live, the more you'll bond with him and it will be harder when he dies."
  • "Don't even bother with an echocardiogram, you don't want to prolong his life with cardiac surgery."
  • "Any kind of resuscitation whatsoever would be too aggressive."
  • "It would be torture to let your baby have cardiac surgery."

On policy
  • "It's not our policy to resuscitate babies with trisomy 18." (Upon asking for the policy, it didn't exist.)
  • "The things needed to help your baby are things this hospital is just not willing to do."
  • Neonatologist: We don't do surgery on babies with trisomy 18 in this trust.
    Parents: Never?
    Neonatologist: No, never.
    Parents: But [cardiologist] said you don't have a policy.
    Neonatologist: Oh no, we don't have a policy.

On why you wouldn't want an apnea monitor at home

Surprisingly, this came up for more than one set of parents.

  • "You don't want to turn your home into an intensive care unit. Usually the first apnea the parents notice is the one that kills the baby."
  • "It would be very distressing for parents to resuscitate their child." (Far more distressing than finding them dead, apparently.)
  • "The machine will alarm constantly and annoy you."

On quality of life
  • "[Survivors] just lie there like dolls."
  • "He won't even know you love him and he'll be in a vegetative state."
  • "She'll never be normal, she'll never move."
  • "She'll be a vegetable, she'll never know who her parents are."
  • "She'll be a blob."
  • "She will be a vegetable, no smile, no expression on her face."
  • "There is no point in her surviving, she'll be severely mentally retarded."

On inflicting suffering on family
  • "Having [your son] will ruin your family and marriage."
  • "[Your other children] will suffer."
  • "You won't have a life."
  • "Put her away, you can't take care of your other children [well enough] because of her."

Or, even worse, the medical team
  • "You can't deliver in this hospital, you might upset the staff."

On 'moving on'
  • "Move on with your life." (While pregnant with the child with T18.)
  • "You can have more children."
  • "It's like if you have a dog that died, you just replace it." (On having another child.)
  • "You're young, you can have more children: go home and let her die."
  • "You will not have a life because of this child."
  • "Have another baby so your nursery won't be empty."

The avoidance of names
  • "I was 'the Edwards mum'; [she] was 'the Edwards baby', even though we told everyone her name."
  • "They referred to [child's name] as 'It'." (More than one set of parents had this experience.)
  • "They referred to [child's name] as 'the trisomy 18 patient'."

The misinformation
  • "Trisomy 18 can be very painful for the fetus."
  • "There is no way to tell whether an NG tube is in the stomach or in the lungs, so the baby will aspirate and die."

The paternalism
  • "The decision to resuscitate [was made] by the doctor as he felt some parents weren't capable of making the right decision."

On resource issues
  • "We need the bed space. Take him home to die."
  • "You'll be bottom of the list for any medical intervention."

Sadly, this is just a sample of many experiences reported by parents in which resources were diverted from their children.

The grossly inappropriate
  • "There's nothing here to save." (On why not to bother resuscitating a child with T18.)
  • "[Your husband] did something terrible in a previous life."
  • "You have other children . You don't want to waste your money on this child."

1 comment:

  1. All of the above Chris is so very sad, as grandmother to Mareyah FT18 when accompanying my daughter Sonya to the consultant Paediatrician we were shocked at some of the comments that came out of her mouth. We will give her enough milk to keep her comfortable, we don't want her to grow, babies are more settled with a bit of milk in their tummy. You need her at home as quickly as possible so you can have some quality time before she passes. She would not be suitable for the NICU. We would not resuscitate as it isn't fair to the baby. This is all after trying to tell us that we probably wont get to a live birth. It's a good job we had a bit more about us and sought advice on the wonderful groups. But you are so right this bedside manner is totally unacceptable and needs to change and fast. Pat


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