'Limitation of therapeutic effort: When less is more'. The Experiences from Adult Critical Care: How far it Could be Extrapolated within the Scope of Neonatal Palliative Care?

[Sutirtha Roy]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4437279/pdf/1657-9534-cm-46-01-00001.pdf

https://www.commissiononassisteddying.co.uk/dysthanasia/

 

[Sutirtha Roy]

End-of-Life Care in Neonatal Intensive Care Units from an Asian Perspective An Integrative Review of the Research Literature.pdf Neonatal Palliative Care.pdf

[bimalc]

This is an important topic, but also one where national/cultural norms will have a large influence on practice.  

Coming from the United States, where a stated standard of shared decision making often is felt to devolve into 'the customer is always right', I have found that the single most important thing I can communicate with the team (either the ICU team I am leading, or the one I am consulted on as a member of my hospital ethics committee) is to remind everyone that not only do we have no ethical obligation to offer/perform non-helpful interventions, to do so is often unethical, especially when those interventions are invasive and/or traumatic.  In the US, we often have the problem of feeling like we must ask the parents about every decision we make when, in reality, if there is no actual choice to be made we ought not to offer a false choice (and then get mad at the family for choosing incorrectly).

[spartacus007]

I believe parents must always have a choice with as much as we can give them. There is subjectivity in a lot of our interpretation. I agree culture and society must and will influence norms. 

I worry about not offering treatment choices because they are traumatic or may cause suffering. There is then the interpretation of suffering. Do we all agree on an opinion of what is invasive or traumatic. The problem is there is subjectivity to how this is interpreted by different health professionals within a team. You can sell it to parents whatever way you like and actually that becomes the truth for them.

The question then is how much suffering is too much suffering. There is then whether the treatment reaches a threshold of harm or whether it is outweighed by the risk of an adverse neurodevelopmental outcome that you can never be definitive about. 

 

I find this this very difficult.

My main worry about health professionals making decisions in such circumstances is that our fatigue and inability to provide definition to the problem or show ourselves and parents improvement means we call it. That in my opinion is a paternal Approach.

I accept your argument that a ceiling is needed and I wonder whether this best done by consensus amongst the team and parents. 

 

 

[bimalc]

20 hours ago, spartacus007 said:

I accept your argument that a ceiling is needed and I wonder whether this best done by consensus amongst the team and parents. 

I fear I may have exposed myself poorly.  My concern is less with a ceiling (which implies that I am opposed to escalating levels of care) as opposed to walls or boundaries.  By this I mean, my concern is that we sometimes offer families options which have no realistic hope of helping the family achieve their goals of care all because we do not wish to be paternalistic.