Sunday, 22 May 2016

Palliative care vs active treatment

Stereotypes and Realities


Fundamentally, when you have a baby with T18, you are told you have two options to choose from* (of course, you may not in fact be offered one of these choices):
  • Palliative care (also referred to as 'comfort care')
  • Active treatment (also referred to as 'full treatment')

However, what you are told, or understand, about these choices is likely to be very different from the realities.

In one narrative, palliative care is a bed of roses: your child will be born into love, held and cuddled, spared all suffering, will die in your arms without ever knowing the horror of the world; you are making the supreme sacrifice to spare your baby pain. Active treatment, meanwhile, involves tremendous pain and suffering for the baby: they will have tubes down their nose, in their veins, in their throat; they will be separated from their parents, barely able to be touched or cuddled, and for what gain? They are going to die anyway.


In the other narrative, palliative care is neglecting your child, allowing them to die, while the people who could save them look on and fail to act: it is an act of discrimination on the grounds of chromosomal make-up. While active treatment, meanwhile, involves them getting the medical care they need, being treated fairly, given a chance and being far more likely to survive.

The realities don't really add up to these mythologies for either approach. (I will admit to having a strong bias for active treatment which may shine through here.)

First of all, palliative care is not a bed of roses. Your child will undoubtedly, without question, suffer, as do all of us who ever know life. Dying of respiratory distress may look peaceful, but it isn't: it is frightening for anyone to be unable to oxygenate. Drugs will relieve that distress somewhat if given. We can minimise suffering, not eliminate it. It may not be pleasant to watch your child die. There is a good chance that, at times, you may want to change your mind and beg them to save your baby. On the other hand, good palliative care is not neglect either: if limits are set carefully and it is well managed, suffering is minimised and the passing can be peaceful.

Active treatment is not hell on earth. Here, too, your child will undoubtedly, without question, suffer. It is not pleasant to be intubated, to have a drip in your vein or a tube down your nose. On the other hand, drugs can indeed minimise this suffering, and with luck, it will be temporary, and your child will recover and no longer need this high level of medical intervention. Also, your child does have a considerably higher chance of survival, and some suffering may be the pay-off for that. It may also be better in your view than the suffering of palliative care. Your child will have love and cuddles and baths and stories and a life in hospital also.

There isn't an option for 'no suffering' after a diagnosis of T18. There are simply two choices, both of which lead to different sufferings: one extends survival and hence extends suffering, but also extends joy, and the other limits survival, so shortens suffering, but also shortens joy.

Make your choice, but make it in the knowledge of realities, not myths.

* Of course, in reality, most of us end up somewhere on the broad spectrum between 'do nothing' and 'do everything', but you'll likely tend more towards one end or the other.

3 comments :

  1. Thank you so much for this..
    Even though I have been there, as a parent, and as a neonatologist, I find your insights so clear and so pertinent.
    Truly the difference between the myths of palliative care, and the reality of "active care" are so important. We need to imagine the spectrum, and find the right place for our family.

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  2. Thank you for this wonderful post. I have also been there - as a parent and physician. And I do regret not having fought more for "active care" for our daughter, who passed away only three days old. We would have been denied advanced intensive care, and they refused to consider cardiac surgery for her VSD, but still - I wish we had made much more noise, protested more. They told me that life with trisomy 18 is a life full of suffering, but my following interviews with trisomy parents and seeing children with trisomies shows me that this is untrue. Just like Annie Janvier showed in her studies, children with trisomies do live good lives, mostly. And I would have loved to have more time with my daughter, and for her to have more time to experience life. And us. And being loved. (https://www.amazon.com/EVY-KRISTINE-Siri-Fuglem-Berg-ebook/dp/B00NQ78YX4)
    Best wishes, Siri Fuglem Berg

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  3. So true!!! I agree fully on everything written in this post. Trisomy babies should be treated like any other child. Early intervention is so important, if you want your baby to live. Unfortunately, not all the trisomy babies will survive, but they all deserve a chance to show their strenght. Do not be fooled by Palliative Care...! Best regards, from Anna - a mum of a T18 boy who is living and loving life...

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