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