Medical Ethics Committee Overrides Mothers Wishes

[MedicPrincess]

I ran a call on a 4 mo old. He was born full term, without apparent complications during the pregnancy. He APGARS were good (8 and 10). Mom tested postive during pregnancy for multiple substances, however he was not born addicted. She had prenatal care, no apparent abnormalities. A few hours after birth mom called out for help, he was in cardiac arrest. Hospital staff resusitated him, however he was anoxic. Fast forward 4 months, he has a trach in place, was discharged from our NICU 1 week ago. He has some spontaneous respiratory effort, but is on ventilatory support. He is at a daycare we have in the area for medically complex children. They medical team goes to the childs home and transports to daycare.

Upon arrival at the home on this day they find him cyanotic, thick secretions in his trach. He has a DNR and a living will, however mom changes her mind, with the save my baby pleading. RN and RT on the team change the trach, suction, bag and get his sats up and off to daycare they go. While at daycare, his sats drop again while on his vent. Bag him and his sats come up. Stop, they plummett. So now we get called.

Anyway... we get him all worked up. IO in place, Suction lots of junk, keep his sats at 98-99% with bagging, HR 160's.

Four hours later we transport back to that hospital and check on him. He is in the PICU, sats in the 30's. The nurses told us the hospitals Medical Ethics Committee had met within the hour of us bringing him in and made the decision to over ride the mothers "Save My Baby" wishes and honor the original advance directives and keep him on his original ventilatory support pressures.

Anybody familiar with this process? What conditions generally have to be met in order to get this committee to meet? Is it a unanimous decison of the committee to over ride a patients or families wishes? Is it comprised of Physicians, Lawyers, Admin Staff, other Medical Staff... a combination of all?

 

[mikie]

Upon arrival at the home on this day they find him cyanotic, thick secretions in his trach. He has a DNR and a living will, however mom changes her mind, with the save my baby pleading.
Any

Firstly, is it common for a baby (diseased or not) to have a living will? What do they have to give up? And, at least to me, a DNR is pretty shocking. Why don't they give him a chance?

I really have never heard of a situation like this. tough stuff!

 

[Sapphyre]

No help with the committee, but, this sounds really fishy.

Like mikie said, why the living will at 4 months old? Does no one care for the kid at night (since I'm assuming the day care provides his daytime care)? Somethings wrong with the situation...

 

[BossyCow]

Yeah.. I think vent needs to weigh in on this one. I'm guessing there must be a lot of respiratory issues with the kid. The only way an advance directive would have been initiated on a child that young would be in response to some existing health issues.

 

[MedicPrincess]

Well he had an Anoxic Brain Injury after that cardiac arrest a few hours after birth. He had all kinds of ICD codes on his chart (Anoxic Brain Injury, Seizure Disorder, PPH to name a few). His journey to his angels was just a matter of time.

His mother was the one to take care of him at night. We actually have a lot of these medically complex kids in our community. This isn't the first baby with a Trach I have ran on. The parents are given a whole lot of education before the baby is discharged from the NICU and often times can tell us what we need to do before we can get our brains to process all the numbers. They deal with it daily.

 

[Onceamedic]

I don't understand how the mother's wishes can be over-ruled UNLESS she has had termination of parental rights and is not considered the baby's legal guardian. If the baby's legal guardian (perhaps the state as the mother has substance abuse issues) decides that the best interests of the child are served with a DNR than that is the way it will be done. I don't know what the hospital ethics committee has to do with it except to make sure the law is observed.

 

[stephenrb81]

My personal beliefs aside....How can a committee make that sort of decision? I have seen a hospital granted temporary healthcare proxy while DFS was in the process of removing a child from the parents care, but the hospital was expected to provide whatever means necessary to maintain the childs life.

I am actually amazed that a committee was able to make a decision like that without a judge (Remember the Terry Schiavo ordeal)

 

[VentMedic]

This mother had probably had extensive explanations and training on the prognosis and DNR process since the day the baby coded and failed to wean from the ventilator.

The medical ethics committee has every right to step in to make decisions on issues where continuing extended medical care would be futile.

Mothers of these children come into feeling a love that is unconditional. The child needs them and cannot reject them. For this reason, the severity of the baby's condition is made known in the bluntest of terms to the mother but it often just enhances the mother's need to protect her child even if quality of life is nil and she knows the reality of the situation.

I posted a thread a few months ago about DNRs and babies but few replied. It is a very deep and complex subject. For those of us who work in a hospital, especially RTs and RNs, we must deal with this subject almost daily for all age groups. As an RRT I have assisted in an end of life support procedure to many infants and children. It would be brutal for all involved, especially the child, to continue resuscitation efforts over and over until there is finally a time they die before someone notices.

Get used to it. We have pediatric centers and children in homecare just like this growing in numbers. We often had problems teaching Paramedics about these children on site at a pedi subacute. They were not prepared for the medical complexities or the emotional issues involved in the care of these children. They often thought the staff was a bunch of ice queens for not reacting with over whelming emotion as we cared for the children. I also witnessed in our NICU one "experienced" Paramedic training for a neighboring flight team call us murderers the first time he saw an end of life support procedure. That greatly upset everyone including the parents, priest and staff. Even after several people tried to reason with him later he thought we were all wrong for killing the baby.

EMS students should be introduced more to dying, death and ethics issues in school. We have had several threads on this subject and all have had varying levels of knowledge expressed in the posts.

 

[daedalus]

I ran a call on a 4 mo old. He was born full term, without apparent complications during the pregnancy. He APGARS were good (8 and 10). Mom tested postive during pregnancy for multiple substances, however he was not born addicted. She had prenatal care, no apparent abnormalities. A few hours after birth mom called out for help, he was in cardiac arrest. Hospital staff resusitated him, however he was anoxic. Fast forward 4 months, he has a trach in place, was discharged from our NICU 1 week ago. He has some spontaneous respiratory effort, but is on ventilatory support. He is at a daycare we have in the area for medically complex children. They medical team goes to the childs home and transports to daycare.

Upon arrival at the home on this day they find him cyanotic, thick secretions in his trach. He has a DNR and a living will, however mom changes her mind, with the save my baby pleading. RN and RT on the team change the trach, suction, bag and get his sats up and off to daycare they go. While at daycare, his sats drop again while on his vent. Bag him and his sats come up. Stop, they plummett. So now we get called.

Anyway... we get him all worked up. IO in place, Suction lots of junk, keep his sats at 98-99% with bagging, HR 160's.

Four hours later we transport back to that hospital and check on him. He is in the PICU, sats in the 30's. The nurses told us the hospitals Medical Ethics Committee had met within the hour of us bringing him in and made the decision to over ride the mothers "Save My Baby" wishes and honor the original advance directives and keep him on his original ventilatory support pressures.

Anybody familiar with this process? What conditions generally have to be met in order to get this committee to meet? Is it a unanimous decison of the committee to over ride a patients or families wishes? Is it comprised of Physicians, Lawyers, Admin Staff, other Medical Staff... a combination of all?

First of all, a CCT RN/RT team should not be transporting anybody on a non medically necessary and urgent basis. These transports run around two thousand bucks each, take a CCT unit out of service, and no one needs an ambulance to go to day care. This would not happen in my neck of the woods.

CCT transports are reserved for emergency inter facility transports in my area. I have never heard of such otherwise.

 

[el Murpharino]

This mother had probably had extensive explanations and training on the prognosis and DNR process since the day the baby coded and failed to wean from the ventilator.

The medical ethics committee has every right to step in to make decisions on issues where continuing extended medical care would be futile.

Mothers of these children come into feeling a love that is unconditional. The child needs them and cannot reject them. For this reason, the severity of the baby's condition is made known in the bluntest of terms to the mother but it often just enhances the mother's need to protect her child even if quality of life is nil and she knows the reality of the situation.

I posted a thread a few months ago about DNRs and babies but few replied. It is a very deep and complex subject. For those of us who work in a hospital, especially RTs and RNs, we must deal with this subject almost daily for all age groups. As an RRT I have assisted in an end of life support procedure to many infants and children. It would be brutal for all involved, especially the child, to continue resuscitation efforts over and over until there is finally a time they die before someone notices.

Get used to it. We have pediatric centers and children in homecare just like this growing in numbers. We often had problems teaching Paramedics about these children on site at a pedi subacute. They were not prepared for the medical complexities or the emotional issues involved in the care of these children. They often thought the staff was a bunch of ice queens for not reacting with over whelming emotion as we cared for the children. I also witnessed in our NICU one "experienced" Paramedic training for a neighboring flight team call us murderers the first time he saw an end of life support procedure. That greatly upset everyone including the parents, priest and staff. Even after several people tried to reason with him later he thought we were all wrong for killing the baby.

EMS students should be introduced more to dying, death and ethics issues in school. We have had several threads on this subject and all have had varying levels of knowledge expressed in the posts.

It's amazing how the opposite feelings are true when the patient is elderly versus pediatric. We as EMS providers have funny terms for when the elderly code, yet when it's a child we'll break our necks to save them, no matter how futile the situation.

 

[Sasha]

First of all, a CCT RN/RT team should not be transporting anybody on a non medically necessary and urgent basis. These transports run around two thousand bucks each, take a CCT unit out of service, and no one needs an ambulance to go to day care. This would not happen in my neck of the woods.

CCT transports are reserved for emergency inter facility transports in my area. I have never heard of such otherwise.

Uhhhhm, I think the fact the baby was basically on ventilatory LIFE SUPPORT means that it was medically necessary. And not all CCT are for emergency transports. How do you suggest the mother drive the baby to daycare and bag him at the same time? Or fit and monitor his vent at the same time? That would be worse than texting and driving.

 

[VentMedic]

Uhhhhm, I think the fact the baby was basically on ventilatory LIFE SUPPORT means that it was medically necessary. And not all CCT are for emergency transports. How do you suggest the mother drive the baby to daycare and bag him at the same time? Or fit and monitor his vent at the same time? That would be worse than texting and driving.

Homecare vents do not require CCT or even an RN or RRT. However, RNs and RRTs do work at the special needs facilities and they may pick the kids up in their van for school, special events etc.

Homecare vents go everywhere. Sometimes our patients (adults and kids) in rehab or extended care will sign out and cruise the city in their wheelchairs and vents. They will call from their cell phones if they need anything.

For parents, the vents can be worn as a shoulder bag while carrying the child. The child can be strapped into a car seat easily. I used to take a van full of these kids for their appointments, sometimes with a CNA and sometimes not.

 

[MedicPrincess]

It would be brutal for all involved, especially the child, to continue resuscitation efforts over and over until there is finally a time they die before someone notices

That was basically my same arguement to another Medic I work with who was appalled that this happened. This was the right decision for this baby. I have NO ISSUE with it. I am just extremely curious about it since it is just not something we deal with daily.

More than one person has called me "cold" or "uncaring" because I agree with the decision that was made. One person asked me, "How could you not want to fight with everything you have to save a baby?" I just told him it would be worse for me to know I did that and that baby continues to code over and over, and suffers continuously.

The medical ethics committee has every right to step in to make decisions on issues where continuing extended medical care would be futile.

Are you familiar with the process and who makes up the committee? Is it Physicians, RT's, Nurses, Lawyers.... or a combo of all? How do they go about deciding when to over ride the wishes of the family? Is the process different when considering a child vs adult? Any specific criteria that needs to be met.... such as unable to wean from vent, or brain activity?

First of all, a CCT RN/RT team should not be transporting anybody on a non medically necessary and urgent basis. These transports run around two thousand bucks each, take a CCT unit out of service, and no one needs an ambulance to go to day care. This would not happen in my neck of the woods.

It does not take a CCT team out of service. This is a DAYCARE for medically complex children. They are open reuglar daycare hours, M-F. A private facility. It is staffed by RN's, RT's, PT's, and there is a physician on staff. The only transporting they do is for these children to and from daycare. Consider it the kids school bus if you will. http://www.caringheartsppec.com/index.htm

 

[VentMedic]

Committee members can include doctors, nurses, social workers, an attorney, a chaplain, a medical ethics professional, and a member of the community. Different hospitals have different team configurations.

The doctor(s) may initiate discussions with the family and then there will be a multidisciplinary meeting with all of the caregivers directly involved and the family. These will be primary bedside people whom the family have come to trust.

The hospital attorney(s) and Administrator will be kept informed.

If decisions were easy there would be little need for an ethics committee.

Once the decision is made, reasonable time will be allowed for the parent(s) to gather significant others to be present for support. Chaplains and other social support services will be offered. The parent(s) will be placed in a comfortable chair in a uncluttered part of the room. The child will be make comfortable pharmacologically and the vent/ETT will be discontinued. The child will have already be prepared to be bundled up and then placed in the mother's or father's arms. No O2 and the only IV lines will be for comfort care meds.

We will also parents of infants with very "hideous" (for lack of a better word) birth anomally to take their baby home in a natural type of hospice environment very soon after birth.

I've got some Florida stats of the number of children that are special needs in the state...and the cost. I'll post those later. Not all were birth defects or preemies. Many are from drownings, child abuse (shaken baby), MVCs, accidental chokings, etc.

Children that are placed in the custody of the state are initially not DNRs. That may come later when their state appointed guardian petitions the court to allow a change in status. Some of the "predators" including the parents may still have crimminal charges that can be filed in the event of the child's death depending on the circumstances and previous rulings.

I can not stress the importance of airway knowledge and expertise with various devices. Even if it sounds like some boring nursing home lecture, take advantage of any trach and stoma education. Learn about pegs and various seizure disorders. Get knowledgable about long term venous access devices and alternative IV access. Tour one of the facilities and get to know the children and staff.

 

[VentMedic]

Each diagnosis and prognosis will be viewed on an individual basis for both adult and infant. When the outlook is poor at best and it would be futile to continue any course of treatment to expect a different outcome, the decision is made.

Being vent depentent is not a criteria since many people live quite "normally" attached to a ventilator and go about their day to day business. Infants with premature lungs may get stronger and even decannulated later. However, if it is an anoxic insult or some severe anomally for which there no chance of reversal or repair, there should be a decision as to quality of life and what the child will have to endure throughout their life even if higher brain function is not present.

Families are also torn apart when it comes to caring for a special needs child. If there are other children in the family, there will usually not be any time left for them. if the state assistance and insurance do not pay the bills, medical bankruptcy will be in their future. It will be one hospital stay after another as these children are going to be prone to catch everything, especially PNA.

 

[daedalus]

It does not take a CCT team out of service. This is a DAYCARE for medically complex children. They are open reuglar daycare hours, M-F. A private facility. It is staffed by RN's, RT's, PT's, and there is a physician on staff. The only transporting they do is for these children to and from daycare. Consider it the kids school bus if you will. http://www.caringheartsppec.com/index.htm

Thanks for the clarification. Makes sense.

Sasha, the CCT program I work in only transports patients on an emergent or medically urgent basis. STEMI to cath, head injury to better hospital with neuro ICU, etc.

 

[marineman]

As sad as it is to lose any child I think they made the right choice. Without bringing up the SIDS argument again sometimes the best thing you can do is nothing at all. Any mother will always fight to have any possible effort given to save their children but the mother has no or relatively little medical knowledge and definitely isn't thinking with a clear head about what's best for the child. That's what ethics is all about is doing what's right for the patient and I feel they did their job correctly.

 

[BruceD]

...

I am actually amazed that a committee was able to make a decision like that without a judge (Remember the Terry Schiavo ordeal)...

Hehe, actually, the Terry Schiavo ordeal occurred BECAUSE the judges got involved.

Most ethics committees are quite adept at making truly difficult decisions and at least where I live, if the decision is made that care is futile, it won't get done. However, once judges/lawyers/courts become involved, almost all care decisions are taken away from the patient's physicians.

 

[emtashleyb]

EMS students should be introduced more to dying, death and ethics issues in school. We have had several threads on this subject and all have had varying levels of knowledge expressed in the posts.

Just to throw my 2 cents in I agree with this statement 100%. I know perosnally being in a situation where a child dies throws you through a loop bust espeically if you havent been prepared for it. Yeah I knew ems wasnt a bunch of sunshine and unicorns :censored::censored::censored::censored:ting rainbows but as a student I was only prepared to deal witht he death of the elderly not children. SorryIm rablimg and thread jacking. I hope the child isnt suffering anymore