Making Good Decisions: part 3. Living with the aftermath

When there are decisions made about withholding or withdrawing life-sustaining interventions for a baby. There are 2 possible long term outcomes, either the baby will be there a few weeks hence, or not.

What do we know about how parents adjust to losing a baby after a decision to withhold or withdraw life-sustaining interventions, or how they adjust to having a baby who survives, but with impairments, or adjust to having had a critically ill baby who is now doing well?

I mentioned this publication a while ago in a Neonatal Updates post, but it fits in with this series of posts, so I will revisit it, and try to give some more context. The question that was asked by the study was how parents whose babies had died in the NICU perceived their role in decision-making. The study was performed at least 2 years after the death of the baby, and eventually included 78 families. There were 23 parents whose baby died without and end-of-life decision, the remaining parents reported that there was a decision to withdraw or withhold active intensive care.

The parents reported 3 types of decision-making around the death, either it was mostly the doctors who decided, mostly they who decided themselves after receiving information from the doctors, or they felt it was a shred decision. Using a validated grief scoring system (the TRIG-F) these authors examined associations between patterns of death and  decision-making and parents grief scores. Grief scores were somewhat lower (less grief with lower scores) with shared decision making compared to the other 2 types of decision-making patterns and compared to when there was no decision taken. It must be said that the differences don’t seem huge, the score can range between 13 and 65, and the average scores were 39 for shared decision-making and 42 to 44 for the other situations. Apparently other studies have found long-term grief scores averaging 35 for perinatal losses, which were characterized as being intense and prolonged grief, so although the “shared-decision making” group had scores which were statistically significantly lower, all the groups were still experiencing intense grief.

Does everyone want to share in the decision? I am not sure if this has been studied in quite the same way in a neonatal ICU setting, but 87 parents of kids in the PICU were asked about the pattern of decision-making they preferred, it was not overtly a decision about withdrawal of life-sustaining interventions, but “They were asked to think of the most difficult decision they had made thus far, or could imagine having to make in the future”. About 40% of parents wanted a shared decision, about 40% wanted to make the decisions themselves, and about 20% of parents wanted either the doctor to make the decisions alone, or to make the decisions after considering the parental opinion.

I think that this means that, even though there may be somewhat less grief after a shared-decision making end-of-life decision, we should try and explore with parents how they want to proceed, and not impose a standard shared decision making style on them. That might be difficult to put into practice, but parents will sometimes ask “what would you do if it was you, doctor?” or “what do you think is best?” Even if they don’t, we can simply ask “would you like me to make a recommendation?”

There is a new policy statement from the American College of Critical Care Medicine and the ATS about this. Which says some of this, although entitled “shared decision making in the ICU” actually discusses whether patients or their surrogates actually want to share the decisions

Patient and surrogate preferences for decision making vary
significantly; therefore, clinicians should tailor the decision making process to each individual case. Although data suggest that the majority of surrogate decision makers for critically ill ICU patients prefer a “middle ground” approach, a nontrivial minority prefer either significantly greater control in decision making or cede control to clinicians (Table 2). When the surrogate clearly understands the patient’s preferences and wants greater independence in decision making, such independence in choosing from among the medically acceptable options may be appropriate. Alternatively, when the surrogate has a strong emotional or psychologic aversion to assuming decisional responsibility, a greater degree of clinician responsibility may be appropriate. Further, the decision-making process often needs to change over the course of the patient’s ICU stay…

I know Annie doesn’t like this to be called “shared decision making” (as she mentioned in a comment to a previous post in this series) but rather “personalized decision making”, and I guess she has a point; but investigating the parents preferences for how they want the decision-making to go (in the neonatal field the parents are almost always the surrogates) is an important step in making good decisions.

To get back to the part about long-term impact of the decisions that are made, what about when families live with an impaired child? What impacts does that have on the parents and on the family? I don’t know of one individual study that has addressed the impact on families, who were previously involved in end-of-life decisions, that made a decision to continue active intensive care, that had a child who was impaired. But there are other data about impacts of living with an impaired child.

In a mixed methods study, where themes were developed in a qualitative study of 15 parents, and a questionnaire was built around those results and administered to 80 parents of children with various severity of impairments, the authors found results which contrasted with :

Professional myths of family devastation, unending stress, near-universal divorce, and endless drudgery

In many domains the parents viewed the impacts of living with and raising a child with impairments to be positive. Here are some of the results: on a Likert scale the responses 4 or 5 were for agree or strongly agree, these figures are percentages of respondents.


I think it is fairly obvious that if different questions were asked you would find some negative impacts, nevertheless, parents often felt that there were many positive changes that happened to them as a result of raising a child with impairments.

Here in a parent report is great example of how NOT to do antenatal counseling. The mother had a threatened preterm delivery at 28 weeks, and, according to her account she was told, just before delivering, “the worst case scenario: brain damage, cerebral palsy, vision and hearing impairment, behavioural issues and a whole host of chronic health problems” by the neonatologist. Now, why on earth would you do that? Surely at a point where there are few decisions to be made, and in a situation of very high survival and very high chance of not having severe impairments, the focus should be on supporting the mother, informing her and her partner of what was likely to happen over the next few hours and days, and maintaining a hopeful attitude. It would be OK, I think, (but I don’t usually), if you added that sometimes there are more serious complications, and if they happen we will come back to see you again and have some more serious discussions. But any parent will know that having a seriously premature baby being admitted to an intensive care unit is not 100% of the time a walk in the park. Being hit on the head with a list of all the horrible things that probably won’t happen is not, in my view an appropriate approach, and, at least, in this mother’s case, had long term adverse effects on her expectations for her child.

This mother also notes the following:

The latest study, from McMaster University in Ontario, Canada, suggests that babies born prematurely are more likely to be unemployed and unmarried as adults, while previous reports have suggested they grow up neurotic and are likely to be less intelligent and wealthy in later life.

These studies are unhelpful, not least because they potentially stigmatise children and young adults from the moment they are born – but also because the findings are not followed up with practical support.

My daughter is 10 now, but not one of her teachers has had any knowledge on how her prematurity might have impacted on her learning.

She’s top of the class for English, but struggles with some aspects of maths. While there is a body of research to suggest this is common trait in children who were born prematurely, when I’ve mentioned it to her teachers, they’ve been very dismissive.

I tend to disagree with what some of this mother suggests, that teachers should be know about the child’s prematurity in order to tailor their educational approach. I don’t know of anything different about the educational needs of a premature baby with learning difficulties to anyone else’s needs. Teachers should indeed have the support services available to optimize the outcomes of children with learning difficulties, but this applies to all of their students.

While I can’t prove it, I’m pretty sure growing up in a stable environment, with food, shelter and plenty of love has helped my premature baby grow into a bright, happy 10-year-old (even if she sometimes needs a bit of extra help with her sums).

Actually we can prove it! The home environment is immensely important in assuring good outcomes for children, whether born very prematurely or even at term.

It’s helpful, of course, to know more about how children are affected by prematurity. But unless it’s followed up by practical support, this kind of research simply stigmatises children. I’d love to see it being used instead to give all premature children the chance to catch up with their peers.

Absolutely! As Annie and I have written frequently, there is a huge amount of research about how “messed-up” very preterm babies are, and a comparatively tiny amount of research about what to do about it.

To return again to the impacts of prematurity on the family there is a very nice review article in a recent Seminars in Fetal and Neonatal Medicine, which includes the following list of “practice points”:

Parents of VPT/VLBW children report higher levels of mental health problems, increased parenting stress and an increased negative impact on family systems compared with parents of term-born/NBW children in the early years.
These initially high levels of distress, stress and negative family impact appear to diminish over time.
Parents and families with VPT/VLBW children need early, specific  and targeted support for themselves, and to support their child’s development.
Evidence-based home and hospital early intervention programs for parents of VPT/VLBW children exist.

About Keith Barrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
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