withdrawal/withholding of treatment

[Mira]

I was looking after a baby w tracheostomy tube,she is going to be one year old next month,there is another one with gastrostomy 7mos.old,and another one with trachy 14mos.We just transferred 2 1y/os to paediatric ward they can`t take anymore babies from us because of their limited staffing/funding.All of them had very rough periods.2 families are blaming the hospital for the condition of their babies where in fact these 2 families are the ones insistant to keep them alive despite the very slim chances for better prognosis(23wks w IVH,etc.).Their discharge planning are dependant on the community funding,take ages to sort out(ethical dilemma).It is a joy to look after the babies because of the smile on their faces,but most of the parents are driving us mad with their demand, to the point we lost valuable staff because they felt they are being treated like they just go to work to bathe,change nappies and feed babies.1/2 of the parents would come in the afternoon and demand in a loud voice to see the manager because their baby got a posset and no one seem to have noticed.Maybe the real blame should be toward us,how we manage these babies,how we communicate w parents and how we present ourselves to them.I don`t know how these babies are coping with the constant trauma they have been receiving just to be alive.

Would you mind sharing your guidelines/protocol in dealing with babies with poor prognosis and withdrawal/withholding of treatment?How do you feel about it?Thank you.:)

[Mira]

There is a referral unit for parents to learn how to look after their kids on ventilatory support and send home once they are competent,but they have a long waiting list and the community should be funded for nurses who can support these families(foster as well). homes needs to be adjusted to suit the care of these babies,and there is a waiting list for appropriate council houses.We are encouraging parents to change trachy tube/dressings,and we teach them how to do resus via trachys.Funding/benefits depends on each Borough,some are rich and some are not.Hospital is not a healthy place for them,I remember the first time I took one out for a walk,he was so shocked and in awe(even if it was w slow intro,like going in another room,showing him what is outside the window-took days),I can see how excited he was eventually to the point that he went slightly dusky.A father spoke with me the other night while I was waiting for the transport,his baby was transferred in the Pediatric ward,he showed me his son`s picture,the father was smiling while talking to me but his eyes looks so sad,he was telling me that his baby is ok with the oxygen and collapses once you try weaning w/c happened 3days ago,baby is 14mos but his immune system still cannot cope w infections,he is very worried that the winter mos. are coming and don`t know if his baby can cope w winter bugs,he doesn`t sound hopeful but he can`t do anything because he is not married to his partner,they are not together therefore he has no parental rights unless agreed by his partner.The other day an ex-preemie visited our unit she was a 24weeker(classmate of one of our long term patient) she is going one year next week,she was walking around,she was unstopable,she doesn`t have traces of the rough times she had while she was in our unit.There are many success stories about NICU graduates,a hypoxic baby who had been diagnosed to have severe bleed turned out to have a wrong diagnosis and live to tell the story,an ex preemie won a settlement for extravasation injury 20 years ago,she turned out to be brilliant and is planning to pursue a career in ?Law.Once an individual comes out from the womb and breath for life,he has the right to live including the right to dignity and protection from the society,and as a nurse it is our responsibility to celebrate the uniqueness of this individual,protect and promote their interests and dignity,irrespective of age,race,ability,sexuality,economic status,etc.I have not been in the NICU for that long to be an expert in this setting,but I have always a gut feeling how the baby will cope the roller coaster ride,I love observing their movements/facial expressions because it is my way of communicating with them.The topic I have started is contreversial,it is about ethics.I expect further reaction,and I am not complaining about these babies, in management term(?w/o a heart)"blocking beds for those who really needs it,and draining the budget", I am just pondering about the quality of life they a leading into and the lengthening of the grieving process for the family.Not because I raised this topic means I agree with withholding or withdrawal of treatment(depending on the situation though)My view is to celebrate the specialness of life without pain or suffering,and to keep an individual alive when the chances are bleak with artificial ventilation,nutrition and hydration is to clear the conscience/guilt our society has inculcated to us.