Taking a child off life support

ForensicRN99 · May 18, 2006

I should add, we shouldn't keep the child on life support, just be a little sensitive to the mother's feelings, it is her life lying there in that bed.

caroladybelle, BSN, RN · May 18, 2006

Sounds like Teri Schaivo all over again :-(

Teri Schiavo was not brain dead, nor vent dependant.

caroladybelle, BSN, RN · May 18, 2006

Having lived through this, I can honestly say there is nothing harder than a mother saying good bye to a child, and even though we are nurses and sometimes build up a wall in order not to get emotionally involved with our patients we have to validate the mother's feelings and not worry about who will be paying the bill, I think that is the most insensitive remark I have ever read. I had lost a child, and to this day 21 years later, I can still remember the feeling of lost and emptiness I felt, and thank God for the good nurses who had cared for him during the three days of his life, and am glad that the nurses weren't worried about who will be paying for the bill. I am sorry if I am coming off strong, but children hold a special place in my heart

My condolences on your loss.

Children and adults, as with all people that may require ICU care hold a special place in my heart. And because of that, I will work hard to make sure that they stay available. And part of that, requires consideration of some ugly facts.

Actually it is more than the financial bill that some of us are concerned about.

We are all disheartened when these situations occur, but we have to be grounded in reality.

ICU level care is not merely a matter of money, it is a matter of finite resources. In the vast majority of the hospitals in which I work, the ICU/tele beds stayed slammed full, with no end in site. This means that patients that frequently need ICU care are unable to get that care. The MD risks putting them on the highly understaffed M/S floors, receiving higher level care, and depriving other patients of care. Or the patient (who really needs to be in the ICU) has an adverse event, due to being on an understaffed unit or due to being inadequately monitored due to being on M/S.

It has been demonstrated in several areas (Boston, Cincinnati, winter Florida, Chicago, California) that EMS diversion secondary to hospital overcrowding has led to deathes that could have been prevented. In addition, California has lost several hospitals due to inadequate reimbursement. This has put a crunch on beds, especially in the ER and ICU

Try finding an unoccupied ICU bed in Central Florida in February. It can be like pulling teeth. And a bed taken up by patient that will not benefit from it, easily translates into death/damage to another patient that needs it but does not get it.

Try finding a trauma unit in Philly that is not slammed to the max. And many of those ICU cases are not insured or underinsured. They cannot even keep critical care/trauma MDs, because the malpractice rates and risks are way too high and so few of the patients cover their bills for highly specialized care.

We like to think that resources are infinite...that keeping someone on a vent for 2-10 weeks extra, isn't that big a deal. Unfortunately, the resources are finite. The money/resources used in a futile case may be what closes a few more ICU beds that the hospital can no longer afford because of the money lost.

Thus it is not "insensitive" to be concerned about this. Nurses with plenty of sensitivity want to preserve what limited ICU beds/advanced care beds that we have, for patients that can benefit. It is because of our concern for ALL of our patients that we concern ourselves with this.

mom23RN · May 18, 2006

I think in this case the medical staff is advocating for the patient. Sometimes parents are just not in a state to make those kind of decisions. As parents we dont' ever want to give up hope.

My dh and I had to make the decision to stop measures to save our child. He was born with a heart defect and finally came home after 9 weeks in the hospital (open heart, lung plications, etc.). A week after coming home he developed overwhelming sepsis due to NEC. After about 20 minutes of working on him we asked the medical staff to stop. It was the most difficult decision I have ever had to make in my life. Had it been for me, myself, I never would have given up. But the decision that we made was for him, not us. It was the kindest thing we could do for him and although it was difficult I will never regret that decision.

I think in our case my medical knowledge helped give me a little understanding of what the future was to hold for him. Generally the public has the "I just want him with me. I'll take him anyway I can have him" In most cases they are not able to think of the child, just the possibility of living without the child.

I think those are the times when the hospital/staff has to step in and do what's best for the patient. I believe this is what that hospital is doing.

Very sad... I hope the parents can come to some understanding and realize that their son is gone.

RuralNP4KIDS · May 18, 2006

It is a very sad situation but it is a medical decision. Brain death protocol is a very strict protocol. If the child has been proven to be brain dead then further medical care is futile. It will only be a matter of time before death takes over no matter how long the child is on life support. Hopefully the family can come to this realization. Perhaps they will decide to donate his organs to help others and bring closure to this tragedy.

Nurse 1979 · May 18, 2006

Let me talk to you viewing this issue through the eyes of a mom who has been there. I lost my oldest son following a ATV accident not quite three years ago. He died in my arms on a country road not far from our home. I realized that nothing could be done for him, spoke to him and comforted him as he passed on. I am sure he was nearly gone by the time I got there, but...... My point is this-- it is so easy to say that we should not "waste" resources or that it is foolish to try to keep the child alive just because the parents want us to. Yet, please put yourself into their place. I know of no parent who would want to change places with them. I personally could not have imagined the pain that a parent goes through. In time, most folks would be able to assimilate the trauma of the situation and would come to the appropriate decision-- to let God have their child. But, you must let them get through the process. It is the most difficult thing you would ever have to endure. We waste many resources in healthcare -- take a look around you. Let's not forget the humanity of our profession.

Dorito, ASN, RN · May 18, 2006

Let me talk to you viewing this issue through the eyes of a mom who has been there. I lost my oldest son following a ATV accident not quite three years ago. He died in my arms on a country road not far from our home. I realized that nothing could be done for him, spoke to him and comforted him as he passed on. I am sure he was nearly gone by the time I got there, but...... My point is this-- it is so easy to say that we should not "waste" resources or that it is foolish to try to keep the child alive just because the parents want us to. Yet, please put yourself into their place. I know of no parent who would want to change places with them. I personally could not have imagined the pain that a parent goes through. In time, most folks would be able to assimilate the trauma of the situation and would come to the appropriate decision-- to let God have their child. But, you must let them get through the process. It is the most difficult thing you would ever have to endure. We waste many resources in healthcare -- take a look around you. Let's not forget the humanity of our profession.

I agree with you. I think this mother will come around but for now all she has is hope and needs the staff to provide education and TLC until she's ready to deal with it. I think in a short time she will realize that her son isn't coming home. Also, my sympathies to you on the death of your son. That must have been very painful. I would never want to change places with you and you certainly have a birds eye view on what this Mom is going through.

ZASHAGALKA, RN · May 18, 2006

My point is this-- it is so easy to say that we should not "waste" resources or that it is foolish to try to keep the child alive just because the parents want us to. Yet, please put yourself into their place.

But this is EXACTLY why that parent is in no mental condition to make necessary decisions.

It's not pt advocacy to continue futile treatment. Not for the pt - certainly. But it's also not pt advocacy to prolong and distort that grieving process.

And you simply CANNOT dissociate the cost to benefit of such care. I'm not just talking about the financial costs. But the costs - for this kind of care - are the MOST astronomical and MUST be weighed. The financial costs are just the beginning. There is the cost to the providers in burnout, the cost of losing that critical bed for appropriate care, the costs to the pt, the ultimate costs to this family, etc. etc.

To say that it is cruel to factor such costs is not just an advocacy failure to that family; it is an advocacy failure to society as a whole.

Keeping this child on support in a futile manner is lose lose lose for everyone. Loss for the child. Loss for the grieving parents. Loss for the cost to society.

It might seem cold to be REALISTIC but being realistic is a form of advocacy.

~faith,

Timothy.

MaxineH · May 19, 2006

it is a sad situation and the mother is in denial or believes in miracles, however, it should be up to the family to make the decision to remove the life support. i also think the patient should be removed to a ltc facility, and take the stress off the hospital.

it's hard for a mother to lose a child, and i guess she is holding on and hoping for the best, and not to pull the plugs then ask herself 'what if'.

the big question is - what would you do if this was your child? would you be thinking as a nurse, or a mother who might be loosing her only child?

rhinojogger · May 19, 2006

Sounds alot like my medical ethics class I had. There are just no easy answers.

elthia · May 19, 2006

The sad part of it all is...it's a form of dysfunctional grieving...because it's at the point where it has to go to court. By this time, the doctors, nurses, social workers, chaplains, etc. have all most likely been dead honest with the parents that this child is dead. I just cannot see how it would go this far without SOMEONE sitting down and trying to assist the parents through this stage of grieving...unfortunately not they have not moved past the denial and anger stages. Just my opinion.

ZASHAGALKA, RN · May 19, 2006

it is a sad situation and the mother is in denial or believes in miracles, however, it should be up to the family to make the decision to remove the life support. i also think the patient should be removed to a ltc facility, and take the stress off the hospital.
it's hard for a mother to lose a child, and i guess she is holding on and hoping for the best, and not to pull the plugs then ask herself 'what if'.
the big question is - what would you do if this was your child? would you be thinking as a nurse, or a mother who might be loosing her only child?

but acting to sustain and support that denial in that parent is simply not worth a few hundred thousand dollars, the potential pain to the pt, the delay of grief to that parent, the burnout of staff in dealing with the high emotions but nevertheless inappropriate care, and the potential injury or death to someone that could have appropriately utilized that bed, but whose care was delayed as a result.

and you cannot move these types of pts to 'lower acuity'. that is, in fact, the problem with costs: these type of pts are typically the very highest acuity and create the biggest drain.

if i were only referring to a financial drain, i'd still hold the same opinion. but, sadly, that is only the start of figuring such costs.

we don't have an obligation, as healthcare providers or as a society, to provide futile care.

and it's not pt advocacy to provide such care: for pts or their family members. and most healthcare providers see on a daily basis that this is true even as we ignore it.

how many of you have felt, at one time or another, or even routinely, that there is a karmic price to pay for asst in prolonging someone's needless misery? how many of you, after witnessing such misery time and time again, have sworn to tattoo "dnr" across your chests?

society is owed a better accounting than life at all costs, full speed ahead and danged with the quality or consequences of such decisions.

~faith,

timothy.