A paper from Mark Mercurio and colleagues has been making some waves. In it they address the question of unilateral DNAR orders (previously called Do Not Resuscitate DNR orders, but now often referred to, more accurately as Do Not Attempt Resuscitation DNAR orders; as most extensive cardiac resuscitation attempts (CPR) fail, the ‘attempt’ is an important addition.)
The point made in the article is that there is no moral obligation to offer treatments that we know will not work. Therefore when we know something is truly futile we can unilaterally decide not to do it.
(There is another part of the arguments that I shall come back to).
In the neonatal period, once you are admitted to an NICU, the only babies for whom there is a reasonable chance of success of cardiac massage and advanced resuscitation are infants with arrhythmias. In general, neonatal CPR (after the delivery room) is indeed “physiologically futile”, it just doesn’t work. At least if by “success” we mean survival to discharge. But that is not the only definition of “success” that might be of value to a family. Sometimes we can get the circulation going temporarily again in order to allow time for an out-of-town family to arrive, sometimes we can give a family who aren’t yet ready to say goodbye a few more minutes. I think those can sometimes be reasonable indications for doing something that we don’t expect to lead to long-term survival, if we can assure that the infant isn’t suffering as a result.
Nonetheless CPR has also become somewhat of a ritual, and is seen by some families as showing that their child is valued, even though the chances of success are very poor, or even zero: the fact that it was tried show that we cared about their infant. Explaining the reality of the situation takes more time and effort than writing a unilateral DNAR, accompanying parents as their child dies is far more emotionally draining, and time consuming, than just writing DNAR and leaving the room.
I think also very important are the consequences of a unilateral DNAR, consequences other than not getting DNAR, once a DNAR order is written there is a tendency to not use other measures of intensive care, even if the intention is just to avoid cardiac massage, children with a DNAR order are less likely to be ventilated, less likely to receive other interventions which do have a chance of success, they are less likely to be closely monitored, and so on. So you can’t consider DNAR orders in a vacuum, something which is not really addressed in this article, but it should be made clear, just because cardiac massage is extremely unlikely to work for a patient doesn’t mean they shouldn’t get oxygen (for example). There is actually empirical evidence that this occurs, as well as personal experience.
I think that a DNAR order is often seen as short hand for, “we are giving up on this baby”, which is why there is this trickle down effect on other interventions.
Writing a DNAR order unilaterally is more of an indication of a lack of respect for the parents input, and the parents role and values.
I have written very few DNAR orders in the last few years, and then only after discussions with parents, more commonly, when an infant is deteriorating, it is important to take time to sit with the parents, explain what things might make a difference, explain those things that will not help, including sometimes, explicitly, cardiac massage. If a baby has a persistent pH less than 7 and there is no real prospect of improvement you can say to the parents, I’m so sorry but X (use their name!) is dying, would you like to hold him for a while? Depending on how you say that, you may not have to discuss cardiac massage at all, and accompanying parents while that all happens can often avoid any demands for further inappropriate therapy.
On the other hand I think that what Marc Mercurio is saying is mostly correct, that when we ‘know’ (as much as we ever know anything) that CPR will not work, there is no obligation to perform it. In other words, if I am certain that a baby who is deteriorating as a result of having profoundly underdeveloped lungs will not have any reasonable chance of successful return of circulation if the heart should stop and I initiate CPR, then I am not under a moral obligation to perform CPR. I do however, think I am under a moral obligation to explain that situation to the parents, if they ask for CPR.
What to do if at that point the parents ask “please doctor, at least give it a try, I still hope for a miracle”? Bill Meadow and John Lantos have advocated what they erroneously call a “slow-code”, what they advocate is complying with the parents wishes, but as there is no universal standard for content or duration of a code in the NICU, early termination of the CPR when there is no response to the first dose of epinephrine, would be medically and ethically appropriate. I agree with this, and indeed I have done it once or twice (in 30 years of practice), when parents can’t agree to forgo cardiac massage, then a real code (not a slow code) but a brief real code can respect the wishes of the parent without harming the child or the health care team.
You could also say that we don’t actually need a DNAR order, any more than we need a Do Not Attempt ECMO, or Do Not Attempt Hemo-Dialysis, I think though that Cardiac Massage is different, it has become part of the consciousness of the public. Partly as a result of movies and TV shows, it is expected that when the cardiac monitor alarm goes off, the code team will run into the room and start the resuscitation; it is that expectation that needs to be addressed.
There is one point in the article by Mercurio and others that gives me some concern, that is the meaning of the phrase “with the possible exception of the most extreme cases, (DNAR) should not be written based on quality of life prognosis”. “Extreme” is a term that will not be interpreted equally by everyone. I think that should be addressed somehow, a child who is irreversibly comatose, for example, could be so extreme that, even if they had an acute arrhythmia with a chance of successful immediate resuscitation, the option of not attempting resuscitation could be considered ethically valid; but to do so against the wishes of the parents? I would say that only if there is no opportunity to discuss it with the parents should that be considered, and usually in such a situation there hasn’t been enough time for reflection among the care team either.
The authors introduce a term that I wasn’t aware of, ‘dysthanasia’ the “exaggerated prolongation of agony, suffering, and death of the patient”, clearly something to be avoided, but can we make that definition before the patient actually dies? If we can avoid ‘agony’, and I think we almost always can these days, then we can avoid dysthanasia; and if the term only applies to those who die, then you can’t really use the term until afterwards, unless you are certain the baby is dying.
The reason that I said some waves were made by this article is that Mark has also recently been a co-author with the other co-author of this article, of a questionnaire study published last month. In that article the authors had asked neonatologists whether a unilateral DNR order was acceptable for ‘patients with no hope of survival’, or in another case where there was ‘serious concern about very profound intellectual disability’. Most respondents felt a unilateral DNAR order was acceptable in the first case, and very few in the second case. In the discussion they state this proviso:
However, there may be extreme examples of neurological disability, not covered by these vignettes, for which a unilateral DNAR order would be considered acceptable to many neonatologists and others. Current debate regarding resuscitation for patients with Trisomy 13 or 18 may, at least in part, be tied to this question.
I think the combination of these 2 articles has led to some people thinking that unilateral DNAR orders might be considered acceptable for babies with trisomy 13 or 18.
Certainly infants with T13-T8 should not be considered under the term, ‘dysthanasia’, the research of Annie Janvier, Barb Farlow, and Ben Wilfond has shown that parents think that their children with T13/T18 do have some more pain than others, but they are not in constant pain, and their quality of life is good to excellent, according to the parents. The babies also show some developmental progress, smiling, responding to their parents, letting their needs be known, see this table for example from the article by Janvier, Farlow and Wilfond, which shows the proportion of children with trisomy 13 and 18 at various ages who demonstrated the behaviour.
|Milestones||1–3 y, % (n = 21)||3–10 y, % (n = 20)||More than 10 y, % (n = 23)|
|Point at objects||5||37||65|
|Says “mama” or “papa”||24||45||35|
|Plays with toys||86||95||100|
|Stand with assistance||24||85||91|
|Stand without assistance||0||20||17|
|Walk with a walker||5||50||74|
|Eats by mouth||86||75||87|
So to get back to the point of this long and rambling post, unilateral DNAR orders can usually be avoided, almost always should be avoided, and should certainly not be applied to babies with trisomies 13 or 18, or other babies with intellectual disability. I think writing a DNAR for a stable baby with a ‘quality of life’ issue against the parents wishes is really problematic, fortunately I have never had parents of a brain-dead child, or a child in a persistent vegetative state ask for CPR.
When our daughter Rumer – who had trisomy 18, but more relevantly, a host of complications – was deteriorating in PICU, my wife Helen and I decided to request a limited resuscitation plan (no resus for cardiac arrest). After coming to the decision, we dithered for a while before making the request because we were concerned that the plan might be misinterpreted: that resuscitation wouldn’t be attempted for a respiratory arrest, or that it would influence decision-making with regard to other treatment.
Sure enough, when things got more serious a week or so later, the doctor in charge at the time later admitted to us that one of the reasons she recommended switching to palliative care was that since she had a DNACPR, reintubation seemed too high-level a treatment option for her – as you say, a shorthand for “we are giving up on this baby”. We *did* decide to switch to palliative care – Rumer died several hours later – and although we still feel that it was *probably* the right decision, the fact that the doctor was partially basing her recommendation on such an irrelevant value judgement, and didn’t share that with us at the time, adds to the uneasy feeling we have about our decision, which we didn’t have a lot of time to make. (Other circumstances also contributed to our lack of peace over the decision.)
Poor communication, or even less than *excellent* communication, around these vital issues (really, what is more important to *anyone* than the health, life and death of their child?) has such a profound effect both on the baby’s treatment path and on the quality of life of the entire family. Yet so little importance is attached to it that many in the medical profession (but not all) place it right at the end of their list of priorities. We wrote a piece on this topic (how it felt to be the parents of a baby with trisomy 18 on the neonatal unit) here. Another piece on “Professionals’ meetings” may also be of interest.
In short, I agree that DNAR orders should never be placed on children without discussion, and escalation if agreement cannot be reached, with their parents. And certainly should not be placed on a child with trisomy 13 or 18 as a routine matter, purely on the basis of their chromosomal condition.
Thank you Keith for highlighting this article.
What is most concerning to me about Dr. Mercurio’s survey is that it reported one in every four (25%!!!!) neonatologists responded that a unilateral DNR order was permissible “in cases associated with poor quality of life.”. (not extremely poor QoL)
The authors noted that it was inappropriate for physicians to impose their values on parents but confirmed that unilateral DNR is appropriate in the “most extreme cases of poor quality of life”.
The article did not explicitly define “poor QoL” or “extremely poor QoL” and apparently left this determination to the neonatologist.
Unilateral judgement of quality of life was deemed to be “dangerous”, and this determination declared to be a “decision only parents can make.” in the 2003 article, Lethal Language, Lethal Decisions, (Koogler, Ross and Wilfond).
Have times changed? Should we be concerned?
A 2003 publication, Perceptions of Deservedness of Social Aid as a Function of Prenatal Diagnostic Testing, revealed that both society and physicians surveyed believed that a woman who didn’t terminate pregnancy for a disabling condition was considered to be not only more responsible and less deserving of sympathy but also significantly less deserving of social resources to support the child.
Consider how the subjective and relative determination of QoL might change in the perinatal setting with advances in prenatal screening and testing. Another indication of the future might be found in Mercurio’s article which reported that younger neonatologists were more likely to place unilateral DNRs.
Some might argue that physicians are doing parents and society a favour by withholding care and placing unilateral DNRs on infants they deem will have poor quality of life. Yet numerous studies reveal that raising a disabled child can be a positive, enriching experience. Brian Skotko’s huge sample of parents and sibs of people with Down syndrome provided evidence of this. My work with Annie Janvier and Ben Wilfond on the T13/T18 kids revealed that almost all families believed their lives were enriched and most felt siblings would grow up to be better adults as a result of their severely disabled sibling.
In my opinion, there is something utterly frightening about denying parents the right to make an informed decision to love and care for a child who will be comfortable, happy and loved. The freedom to love and care for one’s child is surely fundamental in a free society.
It’s Ok if physicians don’t understand why a minority of parents refuse termination and/or withdrawal of care (and perhaps euthanasia in the future) in the NICU for certain children. I know that if you don’t have personal experience with disability, it can be difficult to understand.
However, given the important and respected role physicians hold, I hope that they would be very diligent in their responsibility and reflective of the repercussions of the potential risks to families and society at large by making unilateral QoL judgements.
I agree completely. I think that a UNILATERAL order to not attempt resuscitation is in fact never indicated for quality of life considerations. If there is a chance of a successful return of the circulation then parents should not be over-ruled because I think I know better than the parents about the child’s life, and what it is worth.
If a child is irreversibly comatose, for example, and parents still want something that I think is harmful to the child, then the only option I think would be to go to court.
Certainly for children with intellectual disability the parents valuation of the quality of the child’s life should be paramount.