Comfort care or torture care?

When palliative care goes wrong

I admit that I don't think 'palliative care only' should be the routine way of managing all infants with trisomy 18. I think there are ethical questions to answer about this, especially when a child with T18 presents with few additional medical problems.

However, I accept that this may well be appropriate for some children with T18 who have complex presentations, and I feel that, as we don't have strong evidence for or against treatment for other children, in the end, parental choice should be deferred to, and some parents will opt for a palliative approach.

This post is not a criticism of parents who opt for a palliative approach: it is simply a discussion of situations in which palliative care is mismanaged, with children ending up with inadequate care, and unnecessary pain and suffering is caused simply because nobody is willing to take the lead and implement a well thought-out palliative care plan.

I have seen this happen a number of times, and it is uncomfortable to watch. It seems to happen in particular circumstances.

The parents who don't want to make decisions

Some parents, for whatever reason, are reluctant to make a clear decision about where their limits lie. They feel guilty about limiting care, but at the same time do not wish to opt for a fully active approach. They tend to go along with what is offered to them. Some of them will outright state that they do not wish to make a decision.

These parents are tough to work with for medical professionals, who often feel a degree of paternalism and so willingly shelter these parents from having to make clear cut decisions. They routinely offer limited care, and parents go along with this.

If someone sits down and makes a clear-cut palliative care plan with these parents, then this situation can work out okay. But if they don't, what you end up with is a child born, offered limited care, and discharged home. The child then has a crisis; the parents have no clear plan for managing a crisis and so end up coming into hospital, where immediate treatment is offered since a limited care plan has not been agreed. The child is, for example, put on CPAP and a drip is set up. These interventions make it difficult for the child to move to a hospice or home.

The parents may have a preference for minimal medical care, but are not willing to make a decision to withdraw care and move home for the child to die. So the child sits in limbo, being given a level of care which is inadequate, but nobody makes a clear decision to withdraw. This situation can only be broken by parents managing to make a decision, or a medical professional taking a paternalistic lead and telling the parents that withdrawal of care is the best option. Sometimes, if a medical professional is frank with the parents about the need to make a decision, they will be able to do so.

This situation is best avoided by agreeing a limited care plan prior to birth.

The parents who want active treatment and the hospital which doesn't want to give it

This situation is very common, and contributes to a great deal of unnecessary pain and suffering for children with T18.

Two very typical examples of this:

1. A child with T18 is prenatally diagnosed. The parents state consistently that they want everything done for their child. However, they have little awareness of what is normally offered in neonatal care. They are reassured that their child will be offered treatment according to clinical condition; they are told the child will receive oxygen and a feeding tube and temperature control. They are unaware that this is not full treatment. They go into the birth of their child expecting equal treatment and are not told that they will not get it.


2. A child with T18 is born, struggles, and is not doing well. Medical staff do not want to admit that they are not giving full treatment, so more interventions get added in. Perhaps a drip is implemented because the child has an oesophageal atresia that they are unwilling to fix, so they give the child TPN via the drip. Perhaps the child needs more breathing support, so they concede to high-flow therapy. Sometimes they end up in a situation where the child is born and does do well, so they rush them home, only to return in a crisis and receive emergency treatment. Neither palliative care nor active treatment is practised.

The other example is often the postnatally-diagnosed child who does well at first, possibly with some interventions pre-diagnosis. Nobody is really willing to begin discussions about the ongoing care plan with the parents, because they don't want to upset them with the poor prognosis, and because the reality is all the hospital are prepared to offer is palliative care. The child goes home with some support but no plan.

They return in a crisis and the hospital is itself practising palliative care, so nothing much is done. Perhaps the oxygen is turned up; maybe they start antibiotics; possibly some blood tests, but either way after some low-level tinkering, they suggest the family goes home. No investigations are done. The family is led to believe, however, that they are receiving full treatment. The family goes home, but returns again in a crisis. This cycle repeats until the child dies, and then the death is blamed on trisomy 18.

These situations, which do not benefit the children caught in the middle, are best resolved by frankness on the part of the hospital. Half-truths and cover-ups lead to a lot of suffering. Medical professionals need to be frank about what they are prepared to offer and what they are prepared not to. They need to explain the options, even if they discuss them and say, "We would not offer that to your child." The parents have the opportunities to escalate, pursue alternative providers or come to terms with a palliative approach.

So what makes for good palliative care?

1. Frank discussions between medical professionals and parents about what is on offer and what is appropriate for this child.
2. Clearly agreed plans for limited care that are agreed by all parties, and that travel with the child.
3. A plan for managing crisis events that avoids hospital admission wherever possible and facilitates early discharge to home or hospice.
4. Support and training for parents to manage their child at home. Preferably 24/7 access to a paediatric palliative care team which supports the family.
5. Parents who are able and willing to make decisions for their child. If families refuse to make decisions that are in the child's best interests, then the medic has a duty to ensure the child's interests are protected.