Tuesday, August 14, 2007
The July issue of Pediatrics has an article about NICU decision making for terminally ill newborns. In the past few years there has been a bit of a media sensation because of the Dutch tackling the very tough issue of medicines and technology potentially prolonging the life or death of newborns that are unlikely to survive. It started when a NICU in the Netherlands came up with euthanasia guidelines for terminally ill newborns. For most readers of Pallimed, it should be well known that euthanasia and physician-assisted suicide are considered legal and acceptable medical practice in the Netherlands. I give credit to Dr. Verhagen and his colleagues in studying end-of-life decision making in the NICU. This is an area that palliative care has really not addressed as a profession in a systematic way. I would love to see more literature on this subject, because without discussion in an open forum, we risk compromising care and ethics.
The study examined 30 deaths at 2 NICU's over 6 months in early 2005 (out of 423 admissions; mortality rate of 7.1%). The date is actually important for this study because it was started only a few months after much of the media attention about euthanasia in newborns. (An interesting socialized medicine point. Only 10 NICU's are allowed in Holland by law to concentrate specialists and treatments. No ECMO at either, no heart surgery at one.)
The study was a retrospective chart review, complemented with interviews with the physicians at an unspecified amount of time after the death. 28 of the 30 deaths were after withholding or withdrawal of life support measures. 2 deaths were with maximal curative treatment. No deaths were considered to be due to the administration of medications with the intent of hastening death, although 5 patients did receive paralytics (neuromuscular blockers).
In the discussion section the authors do discuss the use of neuromuscular blockers to prevent gasping in the infant and the emotional trauma to the parents. The parents had actually requested a medication to prevent gasping from occurring in 3 of the cases. The authors make the reasoning that despite this being a possible scenario for hastened death, that if the request is persistent it should be granted. I find this contrary to most medical ethical judgments. Just because someone is persistent does not change the ethics of the situation. The basic bioethical principles are not autonomy, beneficence, non-maleficence and persistence. They also did not classify these deaths as hastened deaths, which I think could be open for debate, although the degree or the time frame which they contributed to death could be arguable as well.
The authors did look at time from decision to withhold or withdraw life support and actual orders placed, as well as the dynamic process of decision making in the ICU. They illustrate how EOL decisions actually start with withholding treatment and then move to withdrawing treatment, and all decisions can make an impact on the final outcome.
For neonatologists and pediatric palliative care colleagues, I think this is a very important article to bring to journal club and to discuss the many ethical challenges in pediatric/neonatal palliative care.
Pallimed Tidbits (aka Potpourri or maybe Pal-pourri?)
-Grand Rounds for Medical Blogs has a few good posts on caring for the dying patient. Topics include: GSW in the OR, death of a family friend, and death in the ED. If you do read these posts, feel free to leave a supportive, educational, empathetic comment or just even a 'thanks for posting this'. It could be one of the many nice things you did today.
-You can even find palliative care mentioned in the most unique situations, for example this blogger who is dealing with considering palliative care options for the family hamster. Sometimes the definition of family can be very broad.
-I don't ever think I have seen such a high service rate for a hospice. 55% of the deaths in the community served are helped by a single hospice. That is pretty impressive when you often hear the 30% range for hospice services of all dying patients. Any Pallimed readers know of a higher percent service rate?
-And lastly, for any Wikipedia fans out there (especially contributors). There is currently a debate about why the Hospice page redirects to the Palliative Care page. Some Wikipedians are trying to create a page dedicated to Hospice and seperate out the two concepts. If you want to hop on over and write an article for little credit or recognition, but realize that many, many people will read it, sign up to be a Wikipedia contributor.