I have been to Las Vegas more than a few times. Each time, I am greatly fascinated by the popularity of the city and the excitement that draws in seemingly limitless crowds. Gambling culture is lucrative for the businesses there, and the odds of winning have not changed.
In most cases, the odds are fairly close to chance, and even when the odds are slightly in the guests’ favor, strategy may only increase their chances by 1% – requiring them to have many repeated wins (and a hefty dose of luck) to actually come out on top. And yet, people still believe they can win, and trust that luck will fall on their side.
Clearly many of us like the thrill of taking a risk, and feel that the entertainment value is worth the effort. We even buy lottery tickets with odds typically ranging anywhere from 1 in 14 million to almost 1 in 300 million. Perhaps we feel the little we pay up front is worth the risk of losing that money, in exchange for the reward of getting to dream just a little bit, even if the possibility of winning is infinitesimally small. Many of us love to gamble because we irrationally believe we have a chance of winning.
I recently traveled to Ireland and saw the beautiful Cliffs of Moher. The cliffs were spectacular, and they have a magnetic draw as you get closer. Some people were happy to remain behind the pedestrian guard rails to witness the sheer rawness of the cliffs, while others chose to break through this barrier and forged more precarious pathways to inch closer to the edge. My wife and I dared to follow these paths toward the edge, but even we were shocked to see a young couple taking photos on top of a dirt ledge that had been completely eroded underneath and that could collapse anytime.
We all see risk differently. That is no different in the NICU.
Care decisions and risk
As healthcare providers, we are routinely more pessimistic than the parents of our babies in the NICU.1 We believe that the outcomes will be worse than what actually turns out.
At birth, we often counsel mainly based on the risk of mental, motor, or sensory deficits. We take numbers from the medical literature or institutional data, and we craft tables of survival and morbidity that aid in the framing of the scope of possibilities for providing care. Healthcare providers are comfortable with relying on numbers, but I am not so sure that we are consistent in interpreting them.
A number of years ago, our team conducted a study to evaluate how health care providers react to the percentage of risk of morbidity.2 We asked: At what point do they feel it reasonable to allow for the discussion of withdrawal of life sustaining treatment to occur by parents or medical team members? For serious mental impairment, most would consider this when the risk was around 60-70%, or about 2/3 chance.
One of the hardest decisions to make is determining when is it permissible to allow the care to change to something other than full medical care. What determines when we can discuss not escalating care or moving to palliation or withdrawal of life sustaining treatment? The reason this decision is so difficult is because there are many viewpoints. Healthcare providers differ amongst themselves and certainly differ greatly from parents. The result is often tension and confusion, especially when there is not enough open discussion on this matter. Most of us are terrified of a child becoming severely mentally or physically handicapped, blind, or deaf. The tragedy of even the possibility of severe morbidity is difficult to handle.
How parents see risks is clearly different from the perspective of the healthcare provider. Our struggle to decide what is best for the child and their family is compressed as we live in a river of painful decisions, pushed to move on and manage all the ongoing ethical challenges of the NICU. Meanwhile, parents are subject to a much deeper exposure to the challenges of deciding what is best for their child and dealing with the consequences, regardless if their child ultimately lives or passes. They feel the impact of their decisions for the rest of their lives. In the past, we capitulated our power of decision-making to the parents who must face these difficult choices, but, more recently, we have moved towards shared decision-making.
If I told you that you had a 50% chance of getting into an accident and disabling yourself today by driving your car to work, would you go out? Would you take this risk, or would you consider the hassle of finding another mode of transportation or having to stay at home a small price to pay to avoid that chance of permanent disability? What if, however, I told you that not driving would mean you would also lose out on an irreplaceable, glorious lifelong experience of love with someone deeply connected to you? How would that change your choice? How many times have you seen parents assume the risk of impossible odds – one in a hundred or even one in a thousand – that their child will come out unaffected by their disease or acute condition?
As healthcare providers, we often think that parents don’t understand and that they are not processing properly. We think they don’t “get it.” We seek solace in the belief that parents are in denial, and that they will eventually come around to embrace the truth that their child is at high risk of being disabled. We don’t handle disability well, in part, I think, because in some way it feels like a failure after giving everything we’ve got, providing what we thought was the best care we could have possibly given. So, in this situational angst, we find ourselves being very conservative towards life, while parents are often fighting for every last strand of possibility. If that is the case, we may need to be careful how we portray the words that define the risk. Our fears of poor outcome may be interpreted harshly by parents and may appear insensitive to their struggles. Parents, after all, are the primary bearers of their child’s hope, and carry the dream of their child’s life.
It is said that as soon as we are born, we begin dying. We just don’t know when and how this will take place. As we grow older we can narrow down the possibilities, as the likelihood of dying increases. An early death is tragic, lost potential, an entire life gone too early. The human cost of such an event is enormous.
What is even harder, though (and a strong reason why I initially did not want to head into neonatology), is making the decision to let a child pass due to the severity of morbidities or the possibility of a disabling handicap. In neonatology, we are often put in one of the most awkward positions to make decisions on who will live and who will die.
As compassionate medicine has grown, we no longer treat with abandon, fighting to keep all alive irrespective of the damage inflicted or potential in their future. I witnessed an interesting transition moving from Canada to the U.S., observing a delay in this approach in the U.S. largely due to the greater litigious nature. Now we fully embrace palliation and comfort care, both in the presence of and for cases bearing a high risk of moderate to severe morbidity and mortality.
As I get older I find it more and more challenging to make decisions on life and death. As a parent, I respect more the sanctity and meaning of your own child’s life. It gets harder to see any infant’s life pass away. Where is the will to live in such tiny newborns? How do we measure that? Can we know the personalities of a child? Along with parents, we are shared and surrogate decision-makers for their child. Can we determine who really wants to live on? Most parents and neonatal providers can attest to the early formation of personality in a child, even one that is as small as 500 grams at birth. We call them “feisty” or “chill” based on their behaviors. I think they can show some signs of their vitality and will to live.
What handicap is burdensome is a very personal judgment. We don’t calibrate too well, and many issues are context- or culture-based. A parent I had years ago was devastated when his daughter had a congenital foreshortened arm, but normal brain function. For his daughter, the stigma of a physical disability would be much worse in his homeland of Pakistan than a mental disability.
Most of the cerebral palsy (CP) we see is not debilitating enough to place a preterm graduate in a wheelchair, but the physical rehabilitation of milder CP can still be taxing on parents. Having a deaf child may be tough for some parents to swallow. For some healthcare providers, risk of deafness was enough to open the door for withdrawal discussions. We don’t calibrate the risk of autism spectrum disorder to the tremendous disabling burden it can sometimes have for children and their families. There is much more work we need to do to clarify this ethically challenging area.
In closing, here are some gambling “rules” to share:
- Be aware that the healthcare provider perspective may be different and more pessimistic than parent’s perspective and of true reality. Recognize we play by different rules and see things differently.
- Focus on a consistent message and description of the possibilities of outcomes with your team since numeric risk is a very difficult concept to translate into actions.
- Write down what your team’s consensus is on managing infants at the limits of viability, including areas of ambiguity of the decision-making and how you choose to resolve it.
- Share the decision-making to prevent parents from carrying the full burden of the process, as it can be crippling and too painful to bear.
- Expand your circle of involvement and decision-making to include other family members, staff, and bioethics teams to diffuse angst and conflict and support these tough decisions.
- Blumenthal-Barby JS, Loftis L, Cummings CL, Meadow W, Lemmon M, Ubel PA, McCullough L, Rao E, Lantos JD. Should Neonatologists Give Opinions Withdrawing Life-sustaining Treatment? Pediatrics. 2016 Dec;138(6). pii: e20162585. Epub 2016 Nov 9. Review. PubMed PMID: 27940720.
- Shivananda S, Lee KS, Marc-Aurele K, Hellmann J, Braid S, et al. Defining the Threshold at which Health Care Professionals Consider Withdrawing Life Sustaining Ventilation in Neonatology. J Palliative Care Med 2013. S4:001. doi:10.4172/2165-7386.S4-001