Sunday, September 30, 2007
Ethical decisions in the neonatal intensive care unit (NICU) can be very dramatic given the obvious tensions of life and death at such an early age. Our technology for monitoring, our medications for treatment and our surgeries for correcting medical problems in the developed world have opened new doors in sustaining life in the peri-natal period. I was lucky enough to benefit from NICU advances in the 20th and 21st century since my son & daughter were born at 32 weeks, so I am very grateful on many levels. Being in the NICU for my twins for 5 weeks allowed me to observe some very emotionally difficult moments with other families. I was not snooping, the NICU had open bays, and curtains do not muffle tears and sobbing at all.
Those difficult discussions and decisions are well-highlighted in a succinct and enlightening article by Dr. Pedro Weisleder in the Journal of Child Neurology, titled: Dignified Death for Severely Impaired Infants: Beyond the Best-Interest Standard. A case of a 34 week per-term infant who has severe and multiple malformations (microlissencephaly group 5) is presented and the ethical dilemma caused when the neurologist objects to the placement of a VP shunt is discussed. Similar to many cases in adults, the infant is unable to communicate and never expressed prior wishes, so advanced directives and substituted judgment are unhelpful as ethical precedents. Typically the standard for infants is best interest, but as is frequently the downfall of the best interest standard, it is dependent on the values of others, and therefore very prone to bias. So Dr. Weislander highlights how to advocate for ethical treatment based on other conditions, such as the right to avoid futile treatment, and the right to a natural death, and the right to a life worth living. This last one may catch some off guard, as even the term 'a life worth living' has been associated with involuntary euthanasia of disabled people who were deemed living a 'life NOT worth living' (lebensunwertes Leben).
The right to a life worth living separates out being a biological entity to leading a biographical life. The phrase 'leading a biographical life' was new to me, and I think it encompasses many complex things that disability advocates, palliative care providers, and the general public could embrace. It does have a tinge of best interest feel to the idea, but I feel it could even be applied to those in PVS, advanced dementias, or even comas. Adults afflicted with those severely impaired neurological states still lead a biographical life to some degree, but to what acceptable degree is still the difficult question to answer.
This article has echoes in adult palliative care, and is a good summary article for NICU ethics issues. It would have been nice to see some more information on key opposition to these arguments for some balance, alas I am not a journal editor so I will just have to leave that opinion here!
One pediatric/NICU specific issue that I have never heard about are the 'Baby Doe' rules (NYT 1984), which were referenced as a counter-argument to the initial opposition to the VP shunt placement. Apparently states are at risk of losing federal funds (for child abuse programs) if they do not provide all possible care to fix any life-threatening condition. The legislation has provisions for the irreversibly comatose infant, futility (a difficult medical definition at best, a mutually agreed upon legal definition I doubt exists.) and inhumane treatments. Some pediatricians have suggested a change in the rules now over 20 years old.
This has not been an issue taken up by any palliative medicine societies, only a few in the pediatrics community. I imagine as most palliative medicine providers, we are very busy trying to get people to accept good palliative care for dying adults, but there are not many of us with pediatric experience. Although I would strongly encourage you to reach out to your pediatric colleagues, because you would be surprised at how much your consel and guidance could help pediatricians and the children and families they care for.
(I do home visits for our pediatric hospice team, and I am internal medicine trained. If you would like some friendly support and ideas on seeing peds patients, feel free to contact me ctsinclair -- g m a i l d0t c o m )
Picture is of Lindsay, my daughter at 32 weeks and 1 day (not the patient in the article for those HIPAA watchers)