End-of-life decisions - how have your formalized decision-making?

[Stefan Johansson]

I guess we're all familiar with situations when we withdraw intensive care for infants for which further care is considered futile.
In our units all such decisions are taken in consensus with the neo-staff team and the parents. Although it is rather obvious when intensive care becomes futile, the actual process of decision-making may vary from patient to patient.

I would be interested to hear about how you make end-of-life decisions.
Have you formalized decision-making?
How are the parents involved in this process?

[sjbrott]

Go to Anita Catlin's website. Ethics and palliative Care is her thing. She will be speaking at ANN's National Neonatal Nurses Meeting in Las Vegas in Sept. this year as well.

[Stefan Johansson]

Do you have the URL to her web site (could not find it through google)?

I raised the question since I think we can improve decision-making in those situations. A structural approach would be good, and improve the involvement of parents to critically ill patients. I personally have the opinion we should primarily treat the infant for his/hers own sake. But, in cases where severe neurodevelopmental sequele is a great risk, the impact of a very ill child on a family's situation should also be taken into account when we consider to continue intensive care or withdraw it.

I know these are difficult questions, and maybe because of that we should discuss openly!

[sjbrott]

Her site is: www.sonoma.edu/users/c/catlin

[cihanber]

İn our country , our religion( Muslim ,% 98of people) is take main place to our desicions.We tell about the condition of the baby ,clearly to family . Last 30 years , 100 percent of them sure to continuation of intensive care till the last breath or beat.

[hehady]

In our institution the decision of discontinuation of life support will be after a joint meeting with the parents and the consultants of the unit. We do respect parents opinion to continue life support, but many parents agree to withdraw life support in situations like ventilator dependent-severe HIE, grade 4 IVH and PVL, untreatable inborn errors of metabolism

[JACK]

Though local customs and traditions play an important part in taking these type of decisions, I think we as doctors also have to be very authoritative in our parental counseling in such cases. Though I am strictly against acts of commission, but acts of ommission maybe be allowed once three consultants/professors document their findings and reach a consensus that further management is futile, then a "Straight talk" with the parents with maybe involvement of social services , most of the time will achieve the result in the parents agreeing with the decision.
Just recently we had a case of protein B deficiency, and once we told the parents of the expected outcome, they had no doubt in allowing for slow withdrawal of support by acts of omission.
However , the local laws and regulations must be followed in every country.
The most important thing, is winning the confidence of the parents. Once they feel that you have done the very best and exhausted every possible treatment option, and still they see no improvement, they appreciate your effort and will trust you decision...whether it is continue or to discontinue care.

[mbayari]

Hi all,
As it was said a few years ago, we have a dual obligation when caring for neonates: understanding the pathophysiology of diseases and the human responses to that diseases. Several years ago, such a decision was made excluding parents; experts argue that we had to "protect parents from guilty feelings"...Actually, it is clear that parents have many expectations;parents need to be involved when end-of-life support discontinuation is decided. Meyer E et al. (crit care 2002;30) have listed the main factors affecting parental decision and the newborn quality of life-the chances of doing well and pain come first. What parents can't handle is not knowing what's going on with their kid (they need honest and complete informations), they need to feel that we really care and not doing just our job,they need us to show more compassion for both the newborn and them...They also need the help of their religion and this can help so in accepting the final decision of withdrawal...
What I am questionning myself is, since we do not have any scholar support of such a situation (we were trained to save lives not to end them), are we ready enough to discuss that openly and clearly between us? with parents? How can we "push" authorities to accept this end as a "peaceful" one for the newborn?
Hope, I help