I am a student in my last semester of school. I am working on my preceptorship in a local SICU, and had an extremely upsetting case yesterday. A young lady came in a few nights ago after being found unresponsive. She was intubated by paramedics and brought to the ER where it was found she had a massive hemmorhage, likely due to a ruptured AVM. On her CT you cannot even make out the ventricles because her head is so full of blood. Her pupils are 9mm in size, fixed and nonresponsive. SHe is unresponsive to painful stimuli. GCS of 3. She is in full pulmonary edema, as well as renal failure. Her vent tubing is being changed every few hours because it continues to fill with blood. She is on full vent support. She is maxed out on Levo, Vasopressin, and Dopamine. She had a flat EEG, and failed the ear canal ice water test, corneal reflex test, and apnea test. She has been declared brain dead. However, the family continues to hold out false hope that after three days she will magically recover and walk out of the hospital. Today is day three with no change. The family is still insistant that there will be a miraculous change. My question is, am i being realistic in knowing that there is no coming back from this. Am i being too negative because i think this is totally irrational and cruel to the patient, to continue to hold out this hope? I try to put myself into this family's position and think what i would do if this is my family member, but i cant see holding out such hope for long. What do you all think is the appropriate time frame in a case like this, and am i destined to be a bad ICU nurse because i just cant bring myself to be so positive about such a patient? This really hits hard on me, because the patient is my age, and was so young, healthy and full of like just three days ago. Any advice on dealing with this would be great!!!
Nov 18, '08
If a patient's heart stopped and they stopped breathing, would you be being harsh for not holding out hope for their survival? It is precisely the same scenario with your patient. Unfortunately, the young lady is dead. She's been declared dead, after scientific test to prove it. There is no hope for recovery. Brain death is not on a continuum from coma -> brain dead... it's just a categorical state... dead.
It's hard to deal with as a nurse, and it's hard to know what to say to families in this situation. The best thing I have found is to talk to the family about their loved ones in the past tense. Be compassionate, but very clear that there is no hope for recovery. I can't recommend a timeframe - they need to accept it. Were they present for brain death testing? Sometimes it's the only way people will accept it, particularly seeing the apnea test and realizing the patient will not breathe.
Nov 18, '08
No they were not present for the testing. The family is unfortunately avoiding the physicians, after being told that there is no life there. The refer to a Bible story in which, I belive they said Lazarus, was risen from the dead after three days. They believe their loved one will be also. They justify their decision by saying that God is only borrowing her to talk to her, and after a few days, he will release her, and she will be as good as new, and will leave the hospital. This is not realistic, but i am having a problem with respecting their religious convictions while still being firm in the fact that there is no hope. This was a sudden thing for them, as the patient was in perfect health before, and the AVM was undiagnosed. I know they need time to process this, but at the same time i feel it is cruel to allow their loved one to lay, and essentially break down. I have never wished for a patient to code, and i dont want to wish that in this case, but i truly do not see the family discontinuing the life support, and in this case, a code would be a truly blessed thing for this person (in my opinion).
Nov 19, '08
Has the doctor told them to their face that the patient is dead and showed them the test results? How about a second opinion from another neurologist? It is never easy for the family to accept especially with a young patient. Maybe talk to them about code status should the patient code. Would they want compressions and shocks? At some point you can get the ethics committee involved if you feel uncomfortable and think it will help.
Just be supportive, talk to the family and listen to their stories about the patient. Past tense is a great idea and might help them "accept" the idea. It is hard for family to see the patient is dead when their heart is still beating. Try doing a neuro exam in front of them.
Nov 19, '08
Yes, the physician has explained all of this to them. The have yet to make her a no code. They are not accepting her brain death. Tehy believe that the machines that are keeping her heart and respirations going are only doing so while her brain recovers. I will not really know what happened until i go back next week. Because i am only a student, i feel my hands are tied in talking at any length with the family. As a student, am i allowed to call and ask my preceptor about the situation (because of privacy laws)?
Nov 19, '08
Wow sounds like the little gals brain herniated. I am sorry to hear that this situation is happening to you and even worse having her family not accept her death. I say we have many specialities in the health care field and we should use them...
-Ethics committee. This will meet and clear up familys expectations.
- Nurse manager- Mine is really invovlved and will talk to upset families. She is so great.
- Pastoral care
I am sorry you are dealing with this and as I say try to use second opinions. Also sometimes how physician talks to the family can ease the decison on whether the family withdrawls.
I remember a family once told a physician that I know nothing my mom wouldn't want to live like that but I can't make the decision. The physician said to the family knowing you want these wishes I will make the decision to discontinue support. It was great hearing the physician talk to the family like this because he is usually really mean.
I wish you good luck. I would talk to your preceptor about this situation because she may be able to guide you in ways to make you feel better and he or she may have a similar experence
PS. We had a patient on our floor with a huge SAH and herniated. We waited 4 days for the family to come to peace and make their decision.
Nov 20, '08
Ethics committee needs to be involved now.
Nov 21, '08
We often use palliative care/psych consults too. However, maybe if they are that religious then a pastoral consult would be good. It may help them to hear from a pastor that although the body is there, their daughter has already gone.
Nov 21, '08
Just to update, the patient passed away. I will not be back at this job until Monday, so i do not know the details, whether the family decided to withdraw life support, or if she simply coded. I am interested to find out though, and will update when i find out.
Jan 20, '09
[font=newaster-bold][color=#74330b][font=newaster-bold][color=#74330b][font=newaster-bold][color=#74330b]i've dealt with this type of issue more times than i care to think about.
[color=#74330b]i'm not sure if the law varies from state to state, but everywhere i've worked a determination of brain death is a declaration of death and the physicians either may, or are required to withdraw care.
i'm catholic, and a good reference for people who are willing to accept catholic teaching is
"why the concept of brain death is valid as a definition of death" from the pontifical academy of sciences http://www.vatican.va/roman_curia/pontifical_academies/acdscien/2008/excerpt_signs_of_death_4l_2.pdf - but know your audience before you refer to it. many people who "expect a miracle" are charismatic christians who may categorically reject anything that comes out of the vatican.
Jan 22, '09
In these cases most of the docs I have worked with wait three days to really sit down and talk to the family. It is of interest that Lazarus incurred the same three days. Perhaps it is a social custom that we don't recognize. I usually start talking to the family about what we would look for as signs of meaningful neurological activity and then let them spend some time checking for themselves. I also start to involve them with hygeine care of the patient. It is a subtle way to let them prepare their loved without being obvious. This seems to be appreciated later on and I have often had family tell me that they found themselves saying goodbye as they washed. They start to see that there are no reactions and the human touch connects them with the reality. I then start talking about how fortunate they are to have this time to be with their loved one as so many families are not with a loved one during "this time." I also start asking if there is extended family who might want to express their love and how long it might take for them to arrive and that even if it is late at night I will get them in. This process has always worked and is appreciated when the time comes to discuss if their loved one had ever considered gifting so that their loving spirit can go on. They always understand that gifiting is a reference to donation. After this I always assigned a newer nurse to the case. This helps the family to recognize that the aquity of care is changing without being blunt. In these cases you are really taking care of the family and helping them to heal.
Feb 2, '09
have seen this situation occur many times and during these times you are caring for the family as much as you are caring for the pt. the family is going through the stages of death and dying--remember denial, anger, bargaining, etc .... and each person/family does this at their own pace. i am not sure if you have children--but that gives you a different perspective. sometimes in the morning when i come on to the unit and i see organ donation--i get a pit in my stomach--i think the vultures are circling!! (even though i am an organ donor and think they do wonderful work.) i think what if that was my son or daughter--if they were in an accident and i saw organ donation i would tackle them and tell them to get away from my child--but then again--i would need time
Feb 3, '09
where i work, brain dead = dead. you can turn off the monitors, etc... you do not need the families permission. its a matter of "do you want to be here when she has CARDIAC death WHEN take the tubes out?" its the same as keeping a body with cardiac death on the unit waiting for them to resurrect.