Parental Abuse of Power?
Posted by realityrounds on May 22, 2009
I am a mother first, above all other roles in my life. Like most mothers I raise my kids with love, nurturing and respect. I want them to be happy and healthy.
I am also a nurse. Like most nurses, I want to do what is best for my patients. But what if what I think is best, based on current medical standards of care , evidence based practice, and ethical principles, is not what the parents of the infant I am caring for think is best? Let me give you a few examples I have encountered in my practice:
- A former 28 weeker is stable and growing in the NICU. The parents insist that no blood products ever be given to their son. So, we limit blood draws, give iron supplements and erythropoietin. At 32 weeks corrected gestation, the stable growing preemie becomes tachycardic, tachycapnic, and now requires supplemental oxygen when he was previously on room air. He is having frequent episodes of apnea and bradycardia. He is oozing thin, pink blood from puncture sites. He is lethargic and pale. We worry he will start bleeding into his brain. His hematocrit is 12. His parents refuse to consent for a blood transfusion for their son.
- A mom with no prenatal care delivers a 30 week infant. The infant has severe IUGR and hypoplastic lungs. The neonatalogists have trouble figuring out ventilator settings that will keep this infant ventilated and oxygenated, without blowing a pneumo. The infant has bilateral chest tubes. The infant’s mother is admitted to the Psych unit for suicidal ideation and depression. She has a history of homelessness, mental illness and drug abuse. She is counseled and advised that continued medical support for her infant is futile. He is struggling to breathe on the ventilator, and the staff is having trouble controlling his pain. The mom insists that everything possible be done for her son. We code the infant three times. He has a grade IV intraventricular hemorrhage. The mom insists that everything be done. An intraventricular drain is placed in this 1000 gram infant. It is draining dark blood that looks like crude oil. Mom can only stand to visit her infant for a few minutes a day. She insists that everything possible be done to keep her son alive.
- A 25 week infant is born. She is strong and stable on minimal ventilator settings. The mom is shy and defers all decisions to her husband. The husband wants all support stopped for his daughter. He has read outcome statistics, and does not want a handicapped child. Mom sits quietly with down cast eyes. Does not say a word.
I am reminded of these stories because of the current case of a 13 year old boy named Daniel, with Hodgkin’s lymphoma. His parents are shunning all medical advise and refusing chemotherapy for their son. With conventional treatment this type of cancer has a 95% cure rate. The parents are opting for alternative medicine, and the 13 year old agrees. cnn
I am not going to write about the ethics of this case. You can find such writings everywhere. I want to address something that never seems to be addressed in these cases. I want to know how the medical professionals cope with cases like these. We are not faceless, heartless, dictators as some alternative medicine pundits will have you believe. There are doctors and nurses who have cared for Daniel, and have gotten to know him. They are working their tails off to save his life, and provide a future for him. No, we are not his parents, but we were suddenly brought into his life because of his illness. He was brought to us to treat, and help, and respect and nurture. And just as suddenly, we are discarded and disregarded.
For the cases I mentioned that I was personally involved in, make no mistake about it, they were heart wrenching for the staff to go through. Yes, I am not those babies mother. Yet they were brought to me to help, and heal, and respect and nurture. I was at the bedside day in and day out, caring for these babies. You get to know them. Imagine caring for an infant that is suffering, when you know a 3 hour blood transfusion would cure his suffering. Imagine caring for an infant that weighs 1000 grams, is skin and bones, is gasping for air on the ventilator, and has tubes sticking out of every spot in his tiny body; and you know what you are doing is painful and futile. Imagine caring for an infant that is critical, yet thriving, and you have a father breathing down your neck to disconnect the ventilator, and yelling at you that she is not your child.
Cases like these are traumatic. How do you cope?
RR
Akiko said
Back in the old days we just did whatever was best for the patient and ignored the parents. When I worked in pharmacy we used to slip life saving drugs to patients to poor to afford them. Our boss just looked the other way. Personally I think parents are given too much say as to the care their children receive. They have no medical training and are under great stress. I would not let a physician make such decisions for me in that state why should parents be allowed to?
realityrounds said
In the old days we used to not let parents visit their children in the hospital. I cringe when I think of it. You would have to sedate me to keep me away from my hospitalized daughters. I fully believe parents should be partners in their children’s medical care. What get’s to me is when their decisions can be deadly for their child. That puts us in the medical field in a terrible position.
Akiko said
SO what happened to those kids? Did the 25 week preemie surivie?
realityrounds said
I was wondering if someone was going to ask for follow-up. The hospital took protective custody of the 28 weeker, and we gave him a blood transfusion. His symptoms got better and he thrived. He was discharged to the parents. The 30 week IUGR baby died on the ventilator after living for about 3 weeks in the NICU. We did as the mother wished. The 25 weeker did fabulous. She had a very uneventful stay in the NICU. The father left the mother and returned back to his country of origin.
Akiko said
Hoorah! He left her and the baby lived. So sorry for the 30 weeker though. Such a short struggle. It is amazing how living creatures are born with such a strong will to survive. So glad the hospital chose to step in on behalf of the 28 weeker.
lisa said
Hoorah? How old is the 25 weeker now? what issues does she have? other than being the child of a single mom who was abandoned to care for her alone.
realityrounds said
Lisa, you bring up a very good point. Caring for a high risk child can cause major stress in a marriage, and unfortunately lead to divorce. I have seen many marriages dissolve because of a handicapped child. I wish I knew what happened to this baby after discharge. We rarely receive any follow-up or reports from the parents. If my memory is correct, the mom had a lot of other family support, her mom and sisters, etc. Very sad though.
RN-ish said
I am so glad you addressed this issue. It really can be traumatic caring for patients, and struggling with their families as to what is right. Can you imagine being the nurse who cared for Teri Shiavo, who was kept alive for political reasons? It must have been heart breaking. It can be hard to cope sometimes.
Morgan said
Being a nurse sounds like an very cool job, but I could not do it. I don’t know that I could keep my mouth shut in situations like you described above.
realityrounds said
There have been a thousand times that I have bitten my tongue to a bloody stump trying to be quiet. But, my job is not to judge, but to try and do what is best for the patient, and the family. It can be quite a balancing act. It can also make the job very hard.
Grand Rounds « See First Blog said
[...] Reality Rounds leads with the wrenching stories of the decisions that get made in a NICU, and how that can affect not just the patients and their families, but also the medical professionals trying to help them. [...]
Chris said
This is why I don’t like the mentality that “whatever the family decides is right.” It’s not. As nurses we’re not supposed to judge (and as doctors, we can’t trump the parents’ decisions for fear of litigation), but we can say there’s a right and a wrong plan of care in these cases. That’s why you’re writing this post, correct? So I hate when people are given this kind of decision, and they’re told, essentially, that whatever decision their uninformed whim leads them to must be the correct plan of action.
I think that at least in critical life-or-death situations there needs to be some kind of medical and parental consensus-making process that removes the burden from a solitary decision-maker such as the parent. I can’t believe I’m saying that, since before I entered healthcare I would have fought an idea like that tooth and nail. But you can’t throw a decision like this solely at the parents (and children of adult patients in ICUs) when it requires so much medical knowledge and prudence.
realityrounds said
Hi Chris,
It can get real hairy to go against parental decisions regarding their child’s care. I wrote the post so lay people in particular could see what health care professionals go through in these ethical situations. We, especially nurses, are an afterthought. I love your comment on how your thoughts on parental decision making changed once you became a nurse. You should write about that
MomTFH said
Wow, what a fantastic and emotionally wrenching discussion about the gray areas in ethics, informed consent and autonomy of parents in the NICU. I love the follow up. Did the 25 weeker do great off of all support?
realityrounds said
She did very well. If I remember correctly she had one of the most uneventful NICU stays a 25 weeker can have.
Let’s get something straight, shall we? « Woman to Woman Childbirth Education said
[...] defects (including things like cerebral palsy, blindness, mental retardation, etc.) due to being born too soon. [Those of you who work with L&D or the NICU or know first-hand statistics can fill in some of [...]
hodgkins said
Having suffered from hodgkins, this was good to read. Thanks for this.