Let's call it "organ support," not life support

[nurseprnRN]

This is an idea that originated in a legal nursing group discussion about the brain-dead teen at Children's in Oakland. While I completely understand the family's pain and that a lot of it is due to misunderstandings (e.g., the mother is reported to have said, "She's not dead, her heart is still beating and she breathes,"), I think the language we use in these situations contributes to this, and would like to spread the idea that better language would be more descriptive.

What would it be like if the health care people involved in this didn't say that a brain-dead person was on "life support," but instead called it "organ support"? In these cases, the life is over.

[LadyFree28, BSN, LPN, RN]

I think using the term "organ" does reduce the person to individual organs being supported and would be confusing to family too. I do like mechanical support as it directs the focus to the machines involved in maintaining respiration and also implies that anything about the patient's situation is not natural. I think in the case of Jahi McMath, there is a lot of confluence with the family and their lawyer (who does not seem to be helping the situation one bit) along with severe guilt on the part of the mother. I mean, her statement that (to paraphrase) Jahi is still breathing and her body is still warm so she cannot possibly be dead shows that she is either refusing to understand her daughter's situation or really is not of the mindset to comprehend it. I think life support may imply, for some, the possibility of the patient reviving on their own but there are some factors in play in this situation that are some serious obstacles to a rational conclusion. Perhaps when this happens under more "normal" circumstances (i.e. not as an outcome of a "routine" tonsilectomy) families are more prepared to accept brain death as a final state and that their family member's natural death is being impeded by a machine. I think if I were told that my family member was being maintained by "organ support" that sounds like some organs are functioning fine on their own so why not wait until the damaged organs heal and begin function as part of the system. Organ support denies that, even on a ventilator, the body continues to function as a system (hence, Jahi continuing to breathe and metabolism resulting in her body remaining warm). I think mechanical support really drives the point home that the patient is maintained by "unnatural" means that will NOT improve their condition and that withdrawing this support would lead to natural death that would otherwise occur. Maybe, too, people could be encouraged to volunteer with in hospital settings where they may come into contact more with death and people dying and see it from a perspective not skewed by their emotional attachment to the patient. The culture's propensity to avoid the realities of death and dying really needs to change and exposure and personal experience are good places to start.[/quote']

To enlighten, again, there are people who live on vents with full lives; what "term" would you choose then? Would you give them a choice of organ, since their lungs-an organ-is getting the support that is needed? "Respiratory Support" is a term "related" to organ support; would you find that more appropriate in that case?

[spencernic]

I agree with organ support. The family must not understand that the machines functioning are what is making the heart beat!

[BlueDevil,DNP, DNP, RN]

Make organ donation an automatic -opt out instead of out in and that will go a long way to solving the problem.

People are going to quibble with whatever language you use.

In the end nonverbal communication, intonation and body language are going to matter just as much as the word.

[xoemmylouox, ASN, RN]

Make organ donation an automatic -opt out instead of out in and that will go a long way to solving the problem.

People are going to quibble with whatever language you use.

In the end nonverbal communication, intonation and body language are going to matter just as much as the word.

This is what makes sense.. I don't see it happening here though. The "death panels" would rise again.

[NO50FRANNY]

Agree, agree, agree. Organ support is more accurate, leaves no room for misguided hope, and relays the science in basic terms. But, as Esme12 mentioned blanket terms will not necessarily suit every situation. Communicating the facts and reality of prognosis, in terms that non-medical people can understand is such an important part of our work. We never refer to a ventilator as "life support", it's referred to as a ventilator or breathing machine. Our physicians will generally say something like "we have placed a tube in your husbands throat and the ventilator is breathing for him". The term "life support" infers that a patient is simply being supported to survive, that they have some reasonable ability to function for themselves. It also suggests that there is "life" to support. Unfortunately, between the media and movies it's not going anywhere soon. Am 100% behind "allowing natural death" also, just the word "resuscitate" is hopeful for a shocked and traumatised family when it really shouldn't be.

[RNsRWe, ASN, RN]

This poor child died 3.5 weeks ago, yet because her mother does not understand how it is that it is only artificial forcing of heart muscle contractions (along with air movement in and out of her body) that separates her from a cadaver, mourning is delayed, and so is a proper burial. A dead child is existing on a hospital bed, being kept warm.

I wonder for how long a 13 year old in this condition can expect to "live" before decubs, infection, etc etc etc eventually "kills" her.

Tragic for ALL concerned (except her lawyer, him I have no excuse for).

[Altra, BSN, RN]

The Jahi McMath case is unfortunate, extreme, and atypical ... with an extraordinary amount of media coverage of all types, with every conceivable level of accuracy and inaccuracy.

But in terms of caring for critically ill patients and those at the end of life on an everyday basis ... I will say that I have never heard any clinician at my academic tertiary care hospital use the term "life support" or "coma". We (nurses, physicians, respiratory therapists, et al) use phrases such as "supporting her breathing" for a patient who has respiratory and/or neurologic compromise and is intubated & on a vent, but does have spontaneous respirations ... or "breathing for him" for a patient with little to no chance of recovery. We discuss exactly what the patient is or is not doing neurologically (responding to painful stimuli, etc) and what it indicates as far as prognosis. I've had families ask things like "does that mean he's in a coma?" ... but again we respond with specifics ... not labels. The physicians I work with clearly discuss with families assessment findings which indicate brain death.

[umcRN, BSN, RN]

Yes! The power of words is immense. Organ support is more accurate and removes the idea of "life", which in this case in particular, is just not true.

Another one I'd like to see change is Do Not Resuscitate to Allow Natural Death -- much more realistic terms.

We use Allow Natural Death (AND) at my hospital.

[LadyFree28, BSN, LPN, RN]

But in terms of caring for critically ill patients and those at the end of life on an everyday basis ... I will say that I have never heard any clinician at my academic tertiary care hospital use the term "life support" or "coma". We (nurses, physicians, respiratory therapists, et al) use phrases such as "supporting her breathing" for a patient who has respiratory and/or neurologic compromise and is intubated & on a vent, but does have spontaneous respirations ... or "breathing for him" for a patient with little to no chance of recovery. We discuss exactly what the patient is or is not doing neurologically (responding to painful stimuli, etc) and what it indicates as far as prognosis. I've had families ask things like "does that mean he's in a coma?" ... but again ****we respond with specifics ... not labels.***

The physicians I work with clearly discuss with families assessment findings which indicate brain death.

***Exactly.

I have never heard "life support" either, and it is actually, in my opinion, inappropriate and only used in the media.

[la_chica_suerte85, BSN, RN]

I thought, at first, maybe saying specifically "respiratory support" but that kind of lends itself to many of things that people not in a finite condition would need that also live full lives. This still sounds like, well, if her lungs could start working on their own, then she could make a recovery. However, the more I hear about this case and the more deadlines and extensions are being granted, I don't really think that saying "life support" v. "mechanical support" v. "organ support" would help this family come to grips with the reality of the situation. Maybe saying "mechanical organ preservation" would acknowledge that without the machines, these organs would completely fail and that the only thing left of this person's life to save is the organs but then that goes back into the whole organ donor thing and that's a whole other mess.

[manusko]

Really who cares what we say. The majority of pts families will call it life support. They will also refer to end of life as pulling the plug. Our job is to help educate so the understand what exactly is going on. Renaming it does not educate.

[TopazLover, BSN, RN]

Really who cares what we say. The majority of pts families will call it life support. They will also refer to end of life as pulling the plug. Our job is to help educate so the understand what exactly is going on. Renaming it does not educate.

I agree that it is not the words, it is the actions. It is the non-verbals. It is the conversations overheard by family when co-workers talk with each other.

Once a person is placed on mechanical support for breathing, the option of a natural death is taken away. Vent pneumonias are common, and they kill. Because the person is getting "organ support" they are not allowed to die when their kidneys fail, when vasopressors fail. The best a family can hope for is that while turning, the patient's heart will give out.