KZ, I wanted to ask you about how the nurses and caregivers handle a situation like this, caring for a deceased young girl who is essentially dead. How does one reconcile this?
Well, most hospital based care givers are only in this situation (caring for a patient properly diagnosed brain dead) for a matter of hours or a few days, while one of 3 things happen:
1. The family moves from denial to acceptance
2. Very close family members are enroute to the hospital
3. Awaiting organ donation/ recovery team arrival/ OR scheduling, etc.
Actually, in those 3 typical circumstances, I can't remember anyone I worked with having any difficulty emotionally or otherwise with the situation. In the case of #1, most recognize that the shock and denial are a sad part of coming to terms with losing their loved one, and most have a tremendous amount of patience and compassion for the families. Even the angry families-- most caregivers know anger is another form of grief. The care of the family becomes the focus, even as the ICU care of the body continues. There is just an understanding that there will be no heroics for the body as it fails. The goal in denial is to gently and consistently impart the message that the person is gone, no matter that the body is warm, and continuously re-assess and document where the family is at in in the process of acceptance. Take the focus off the machines and numbers, and try to find out where the family needs more info to accept the situation. This can be really, really hard to do with angry families. Consistent assignment of caregivers does help some-- helps to establish trust, etc. But these are probably the most challenging families to ever deal with. An angry patient or family is a sign that they need MORE attention from staff, and MORE patience and information, not avoidance, as I tell my students. But humans being human, many want to avoid angry and disagreeable patients and families as much as possible. Everyone likes families who are appreciative, polite, reasonable, etc. They are the easy ones. The hardest patients are the less educated, angry ones who act out in a loud fashion. I do think Jahi's family was extremely difficult, and tremendously frustrating for the staff at CHO to work with. JMO.
In #2, again, the focus is the family and their needs. As long as the interval of family arriving isn't "too long" (and every hospital and ICU and doc/ admin team defines that differently), most places in the past would maintain the body till family arrives to say good bye and find out what happened in person.
The sad part of Jahi's legacy is that I fear that hospitals could very well end up being more inclined to "define" this period of time more stringently now-- establishing policies that favor the hospital functioning (ie, removal of ventilators, esp if ICU beds are scarce and in high demand), over the conclusion of the dying/ death process for enroute families. In essence, the very high profile actions of Jahi's family may continue to negatively impact future families all over the U.S., if such "hurry up and disconnect" or "hurry up and get them out of ICU" policies become commonplace and "standard". The best possible outcome there (if policies tighten up about maintaining brain dead people in ICUs) IMO, would be provisions in the policies to move the brain dead person out of the ICU into a private room on a regular medical floor within the facility-- perhaps with a home care ventilator and very basic care and monitoring, instead of the ICU vents and equipment, if those are scarce in a given facility. Does this make sense? Kind of like inpatient hospice. Remove all monitors except maybe the heart monitor, remove intracranial pressure monitoring (etc), and move to private room with "no further resuscitative care" orders.
In #3 above, no one I know has a problem with maintaining a brain dead donor for the sake of the potential organ recipients. It's kind of like vicariously caring attentively for a patient you'll never meet, KWIM? Keep everything optimized for the sake of the organ recipients. The body of the brain dead person has one last opportunity to help others, when the family directs organ donation, so we honor that request and the dead person by doing the very best possible for the future recipients.
I wanted to add to the second situation above. In my experience, all of the ICU equipment and "numbers" is a very distracting situation for both caregivers AND families when there is brain death. It's common to find a lot of conversations focused on explaining what various machines do, and what numbers "mean" to the families. In the case of brain death, I think the removal of much of this helps families to focus on the person they loved, and not the horrific ICP numbers or BP or something, and how to "fix" those, etc. The very environment of the ICU, with urgent situations all around, is hard for families of dying and dead patients for whom there will be no more "urgent". If done right, and with extreme compassion, moving that person to an out of the way room on the unit, or off the unit, and discontinuing a lot of machinery and monitoring, lowering the lights, providing unlimited visiting, focusing on physical care of the body and not IV drips, etc. is best for the family. It communicates that we still care, but sends the message that we are winding down the acute care as the family comes to terms with the dying process.
Will never be remembered for a sweet, shy girl. Sigh.
