Green J, et al. Quality versus quantity: The complexities of quality of life determinations for neonatal nurses. Nurs Ethics. 2016. This study used a mixture of quantitative (survey of over 400 nurses) and qualitative (interviews with 24 nurses) methods. The authors showed that over 90% of their respondents believed that quality of life (QoL) should be taken into account when making decisions or very premature babies. Where it gets more interesting is when the authors asked what that actually meant. When they did a content analysis, the answers could be classified as follows :
- Ability to use one’s brain 39.7%
- To be independent 37.1%
- Life which is fulfilling to the individual 34.6%
- Able to interact with others 27.4%
- To be happy 20.3%
- To live life without pain 15.4%
- Able to contribute to society 15.1%
- “difficult to define” 8.6%
- To love and be loved 8.0%
- To be healthy 8.0%
- Not to be a burden on family or society 7.7%
- Other answers were less than 7%.
There are many illuminating quotes in the qualitative part of the study, which basically demonstrate the difficulty that the nurses had in defining what was a life of quality. Most were sure it is important, but couldn’t really say what it was.
There is such a huge difference between “ability to use the brain” and “ability to be independent”…
Einarsdottir J. Emotional experts: parents’ views on end-of-life decisions for preterm infants in Iceland. Medical anthropology quarterly. 2009;23(1):34-50. In this study the author interviewed almost all of the parents of babies under 1000 g born in Iceland over a 4 year period. As the population of Iceland is about 1/10 the population of Montreal that was possible, but still a great achievement. Those parents also believed that QoL was important, when asked what they meant by that, the responses were often characterized by saying that if the child would have ‘no life’ then limiting active treatment would be acceptable. “No life” could signify postponement of inevitable death for a short period by painful treatment, or what parents labeled as “no life” meaning living without crucial human qualities, such as an ability to take part in human communication and interaction.
If we are going to make decisions based on quality of life, then it is important to investigate with parents what they mean by that, what to them is a ‘life of quality’.
I have had parents tell me at times, that they “don’t want a handicapped baby”. Usually with a little discussion, I discover that they are thinking about the most extreme cases, of children who cannot meaningfully communicate. That is very different to most neonatal survivors who are categorized as having impairments; and it is also something we are very very poor at predicting, in the neonatal period.
We can’t even predict survival very well.
Mehler K, et al. Survival Among Infants Born at 22 or 23 Weeks’ Gestation Following Active Prenatal and Postnatal Care. JAMA Pediatrics. 2016. In Cologne, active care is frequently offered at 22 and 23 weeks gestation, and they are really good at it. 65% of the 22 weekers offered active care survived and 72% of the 23 week infants. But the babes had many complications; 20% for example had surgical NEC, 30% had serious intraventricular hemorrhages, retinopathy and BPD were common. The average length of hospitalisation of the non-survivors was around a week. Which suggests to me that one option that could, should, usually be offered is a “trial of therapy”, with clear plans to re-evaluate, with criteria for redirection of care if it is not going well. I certainly don’t think you can call a 65% survival “futile”!
But what becomes of them? Obviously we don’t know for those 22, 23 week infants, but we do know quite a lot about Saroj Saigal’s cohort of babies under 1000g birth weight, who are now in their 30’s. Saigal S, et al. Health, Wealth, Social Integration, and Sexuality of Extremely Low-Birth-Weight Prematurely Born Adults in the Fourth Decade of Life. JAMA Pediatrics. 2016. As usual, a remarkable piece of work from Saroj, which is available free access, so anyone with the interwebs can access it. I will just quote the last paragraph of the abstract
In the fourth decade of life, extremely low-birth-weight survivors achieved similar educational levels and family and partner relationships, and reported fewer risky behaviors compared with controls. However, they had lower levels of employment, income, and self-esteem, and fewer were married and had children. It is therefore essential that these individuals receive necessary support and continued monitoring throughout life.
As a parent of a micro preemie, quality of life is something I struggled with in the NICU. In the beginning, I wondered if we were doing the right thing by keeping my baby alive when she may end up having a severe disability. Why were we making her fight so hard when the outcome could be anything less than ideal?
The day I stopped questioning that was a very defining moment for me as I parent. I remember it vividly. One day in the NICU, my daughter’s primary nurse told me about a baby that was severely disabled and could only hear. I don’t remember why she told me the story but I remember asking, “Do the parents play music for the baby?” It was then that I stopped worrying about the things she may not be able to do and looked for the things she could do. That was how I was going to help her find meaning in life.
We were lucky. At NICU discharge, she came home without special equipment and the predictions were that she’d catch up quickly and easily. However, it was not meant to be.
Four years later, we find ourselves walking somewhere in between. Unexpected motor and sensory issues have put us in a gray area. A lot of work has gone into every bit of progress she’s made. She hasn’t caught up yet but, she might. On the other hand, she may not. She may always need the g tube that was placed at the end of last year. She may always struggle with speech, fine motor skills, and in other small ways. Her quality of life is nonetheless because of any of it. She knows she’s loved, she has found her niche, and her life has meaning. That is everything I would want for her if she were full term.
In the beginning, all of this would have been impossible to see. I always find these quality of life discussions interesting because I struggled so much with the idea at the start. I can’t say what’s right for others. Parenting a child with special needs was not the life I would have chosen. But, I love this life all the same. I’m honored and privileged to be her mother.