There's no good time

I never cease to be amazed at people who ask about organ donation when their family member is brain dead. If I were given that terrible news I don't think my first, or even my second or third, thoughts would be about helping someone else. I think that most people could, in time, see that donation is a positive thing, but to get the grim news, "He's not going to make it," and say, "Can he be an organ donor?" astonishes me. Yet that is exactly what my patient's family did today. He was not yet brain dead, but the prognosis was not good. His wife told me, "I am still holding on to that last shred of hope. But if he does become brain dead, I definetely want him to be an organ donor." She felt that it would bring some meaning to this senseless trajedy. He had beautiful eyes, and a good heart, and she wanted them to live on in someone else.

Knowing that the family had initiated discussion of donation, it was still hard to make that first contact. What do you say? When is a good time? It's even harder when the family doesn't expect you. I have to juggle my compassion for the family and when I think they're ready to hear what I have to say, with the needs of the recipients. The sooner we recover after brain death, the better the organ function. Many people think that a brain dead person can stay on that vent indefinetely, but within a few days, depending on the cause of death and their baseline health status, they'll go into multi-organ failure and then cardiac arrest. Brain dead patients can be very unstable.

That is why I have to ask families to make this decision in the middle of their grief. I'd like to wait, let them process it, but there's not much time. As it is, we decouple the approach. Let the hospital staff tell them the patient is brain dead and start the clinical process. Then, I'll meet with the family, assess what they understand so far and see if they know what the person's wishes are; did he have a living will, an organ donor card, etc. You'd be surprised(or not) at how many doctors have said, "He's brain dead. You wanna donate the organs?" It's not nice, it's not compassionate. People need to let it sink in. Especially when their loved one still looks alive:they're warm and pink, their chest still rises and falls. Many times I have to go over what brain death is, and why they won't recover. Some people surprise you, so you can never think, "Oh, they'll never go for it." The least likely people have said yes. Families that were in denial, families mad at the hospital and threatening lawsuits have said yes. Then, sometimes, people I swore would want to donate say no. It's a very personal decision.

Most people want to know if my job is sad. The short answer is yes. It's difficult to put into words why I feel called to do this. When I worked in the ER, I was the one nurse who didn't shy away from grieving families. Sometimes,(not often) you'd have one of those docs who'd tell the family the patient died and then run away and I'd be left consoling them and answering their questions. I guess the only way to describe it is to say that I feel blessed to be around grieving people. I want to help them to navigate their way through those confusing first moments. I don't feel like I'm a particularly consoling person. I'm not very touchy-feely. I don't have a lot of meaningful phrases that I use or anything. Instead, sometimes, I feel like a death-midwife, helping this family transition to the next phase. I couldn't do this if I didn't feel like I was doing good for the families. I know ultimately I'm doing this for the recipients, but when a family makes a decision to donate, it really seems to help them. Like the wife of the above patient, it brings some consolation and a hope that a little piece of them lives on.

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I don't usually take my work home. I used to get very anxious when I worked in a trauma center, worrying about bad things happening to me and my family. Now I'm a little more calm about dying-when your times up, it's up. It has made me appreciate my family and my life more than ever. So while it's always on my mind, I don't usually worry about it. But today was different. I got called back to the hospital tonight and as I was getting ready I was convinced that something was going to happen to me. Maybe it was the talk I had with the wife earlier, now a widow. Maybe it was the blog I read (I can't now remember which one, I know I had a link somewhere) about a woman whose husband died of cancer when their baby was 4 months old. I started thinking about what my family would do if something happened to me. What would I do if something happened to them? How would I go on? Like I said, this stuff doesn't usually hit me, but when it does, it hammers me. Really, I was practically in tears. So I gave Love Monkey and Dear Kid extra hugs and I whispered into Laughing Baby's ear, "I love you." That's all I can do.

If it's Tuesday.....

It must be GRAND ROUNDS! Interesting reading over at A Chance to Cut is a Chance to Cure.
Peruse it while I whip up my next post.

What do I do?

I'm on call about 10 days a month, for 24 hours at a time, usually 2 or 3 days together, then off for a few days. I'll get a call that goes something like this:"I need you to go to Springfield Medical Center(made up name, think Simpsons). The ICU called with a 24 year old male, gun shot wound to the head. He has no history. BP is 100/50. He's on multiple pressors. Urine output is 500cc an hour. Family's at the hospital. He's got a fiance, mom and dad are divorced and a big crowd of cousins, etc. 1st clinical's done. Call back when you get there and let me know what's going on."

Off I spring into action. Well, spring's a bit of a euphamism. Okay, so I haul my old bones off the couch. I have to be there within 90 minutes and the area I cover is rather large. Already packed is my bag, with laptop, organ donation literature, paperwork, calculator, pen light, snack, personal care items like toothpaste(never know how long I'll be out, could be all night)and other, assorted junk I might need. Some stuff I keep in my trunk, like memory boxes and a gauge for reading NIF's(for DCD referrals).

When I get to the unit, I introduce myself to the staff. I usually get one of two reactions:Hey! the transplant coordinator's here! or Ugh, the transplant coordinator's here. I've been called a vulture too many times to count. But I digress. I'll read through the chart and see if there's any reason this person CAN'T be a donor-HIV, cancer, multi-organ failure. There's not too many absolute rule outs anymore. Yes, we will recover organs from people with hepatitis, particularly for recipients with hepatitis. Brain tumors are okay, generally, as long as there's no metz and no VP shunt.

The reason for this, and the reason we always ask staff NOT to mention donation is this:many families want to donate....If you bring up donation and then find out that the person can't donate because of some medical condition, it's like a second heartbreak for the family. First, they have to deal with their loved one's death, but donation was a silver lining, a way to keep that person alive in someone else. So we look through the chart. If they're not medically suitable, I pack up my bag and go home.

If they can be a donor, I've got two very different jobs to do. One, talk with the hospital staff about what's going to happen next. In an ideal situation, we all "huddle"-doctors, nurses, nurse manager, chaplain, case manager, respiratory therapist-whoever's on the case and can provide insight into what needs to happen. In a bad situation, the patient's been dead on a vent for three days with docs who don't want to start brain death protocols and a family that has no idea how bad it is and keeps hoping that "he'll pull through".

The second job is to support the family. Yes, I have to keep the recipients in mind, but when you see this grieving family in front of you, you really want to do everything you can for them-out of humanity, not because "you want the organs". I try to see what the family needs-a chaplain, a room for privacy, info from the hospital. If the doctor has told them that the patient's brain dead, I'll assess them to see if they really understand. A lot of people think that brain dead means coma, that the person will be Terry Schiavo, living in a nursing home for years. But a brain dead person can't breath on their own. If the vent's shut off, they'll go into cardiac arrest. Even on the vent they'll go into multi organ failure within a few days and eventually cardiac arrest as well.

I tell people that when the brain gets injured, it swells, just like if you twist your ankle. Only the head is a closed container-a little swelling isn't too bad, but too much and the brain has no place to go, it runs out of room. Docs will try to keep this from happening with medication or sometimes surgery, even going so far as to remove a piece of the skull. Nurses keep the ICP(intercranial pressure) down by keeping stimuli to a minimum, keeping the head of the bed up at 30 degrees, etc. Sometimes this works, sometimes it doesn't. When the pressure gets too great, the only way left to go is down, through the little opening where the spinal cord, arteries and veins run. The pressure clamps down on the vessels leading to and from the brain and within minutes the brain is deprived of oxygen. Within 10 minutes, brain cells die en masse and once they're dead, that's it, there's no coming back.

Look at a nuclear brain flow and you'll see exactly what I mean. It's like the patient is wearing a black cap, except that that black space is where there is no blood flow. It's pretty dramatic.

See what I mean. Maybe someday I'll write on why I hate EEG's. The picture really says it all.

At some point I'll take the family aside. I'll ask them if the patient had ever talked about his wishes, if he had a living will. I'll ask them what he or she was like. What is it like, to ask a family if they want to donate the person's organs? It ain't easy, but I think I'll have to leave that for another day.

I remember a family of a brain dead patient that I was involved with. I spent two days with them, helping them to understand brain death, making sure that they were getting the correct information from the hospital and giving them emotional support. I hadn't yet asked them about donation. Sometime during the second day I took the daughter aside and asked her what she thought and if she thought her dad would agree to it. They had been married 54 years. The daughter thought organ donation was a great idea. Finally, the time came to bring the family together and ask the patient's husband if he would donate her organs. He really wanted to, he said, but she had been through so many operations already, he couldn't put her through one more. He understood brain death, he knew she was gone, but he couldn't do it. Let someone else donate, he told me.

I've also listened to the pleas of a mom whose 11 year old daughter died waiting for a lung transplant. Why won't they say yes? she told an audience of transplant professionals.

When I first started this blog(a whole 8 posts ago), first I thought it would just be a way for me to blow off steam. My job's pretty stressful at times. At best, I thought a few other transplant coordinators might read it and chime in. Now I see that there's this whole, big blogosphere out there. I realize I need to be a little more responsible in what I write. Holy moly, I just found a link for Dr. Andy's Grand Rounds on Medscape. Yikes! And I remembered that to a lot of people, medical professionals and lay people alike, don't really know what goes into making transplants happen. I realize a few posts might sound callous. It's hard to get frustrated in the world of medicine and I'm a very impatient person to boot. So for the next couple of posts I think I'm going to write on just what it is I do and why it's so important to make donation happen.

Did I miss it?

Jeez! Grand Rounds were Tuesday! I was out allnight on a case and then slept all day Wednesday......so this must be Thursday, right? Anyway, here's the link: Grand Rounds 2:22
(and guess who made the top 10? Hmmmm? Need a hint?) Now, back to writing a longer post, as soon as I have some coffee.

Off my game

Did my first "ask" yesterday since I've been back. Didn't go well. It was worse than a no would have been, because the family was noncommital-they wouldn't give me a straight answer. To make it worse triage sent out the orientee to watch me. And she's great! The type of person who, immediately after meeting, you want to be just like them. Good personality, lots of energy. I felt unkempt and uncouth next to her and didn't even blame her for felling that way.

Probably it wouldn't have made a difference how I asked the family, but I felt very passive when I did it. And they were very passive about giving me an answer. There was a culture thing, too, going on. They were not from the US originally. They kept saying,"He's not healthy enough to donate." Over 2 days I tried 3 times to get an answer but they just wouldn't give me a yes or a no. Finally, they just shook their heads no.

Last week I spent 2 days on a case and the patient coded(see "Like Wading Through Taffy"). Then I had 2 days on a case I was SURE the family was going to say yes. At the end of the second day they said no because they felt that if the patient wanted to donate, she would have told someone, because that's the kind of person she was. Since she had never mentioned it, they felt she didn't want to donate and they wouldn't go against what they perceived to be her wishes. I mean, there's really no debate when it comes to following the person's last wishes. It's not like they had a skewed conception of what donation entailed, like people who think we're gonna mutilate the body or that they have to pay for it, etc.

I'd be lying if I said my pride wasn't hurt. Dammit, I should be able to get a consent, at least one out of three, not 3 swings and misses. It's not about me, though, and that's where the guilt comes in. In "It's a Wonderful Life" Zuzu says, "Every time a bell rings, an angel gets its wings." In my job, every time someone says no, another person dies. Today, that responsibility hit me hard. What could I have done different? How could I have gotten them to say yes? Then I'll have the Monday morning quarterbacks telling me what I should have done differently (pride, again). One of my coworkers put it succinctly. The people that need organs can't come and tell families how badly they need that organ, so we have to speak for them. I just wish they'd all say yes.

I Want to Believe

I'm jealous of real, religious people. People who know without a doubt what God wants of them and what's waiting for them on the other side. I went to church as a child. Every Sunday, rain or shine. In my memory, it was always cold on Sunday mornings, but that can't be true. We were observant Catholics, but I can't say we were especially devout. My grandmother used to go to confession every Saturday. She used to say,"What do I have to confess? That I missed church one week? Bah!" But she'd still go. My mother stopped listening to the Pope when she had two kids, eleven months apart, using the rhythm method. Most of what I truly feel about God I got from my dad. He was the one who would help me say my prayers in bed at night, cause it was nice to pray for other people and ask God's blessing for them and for me. Sometimes, we'd sing a little song called, "What Color is God" about how God is every color and no color because, I guessed, God was too big to be pinned down to just one race.

So I can't claim that Jesus is a close, personal friend like some people I know. I tried to be born again once, in high school. I came forward at a prayer group when they asked if anyone wanted to be saved. It was nice to have them all praying on me, but then they said I couldn't listen to AC DC anymore and well, that was that. Occassionally I find succor from a Catholic mass, especially when somebody dies. That's when the ritual seems most comforting to me. Sit, stand, kneel, stand, sit. I went to church in Italy once. I didn't understand a word they were saying but it was the same:sit, stand, kneel, stand, sit. I like the familiarity of it.

But all this doesn't really help when I get the existential heebie-jeebies in the middle of the night. Like Mulder, I want to believe. In aliens and government conspiracies or sweet salvation, it doesn't matter. I just would like to have absolute faith in something. I want to believe God is real. I want to believe that prayer works and it isn't just the list of puling demands that it sounds like. I want to feel forgiven, to have a squeaky clean soul again. I want to believe that Mama's kisses heal all wounds. I want to believe that my Daddy's arms are still strong enough to carry me upstairs to bed. But mostly I want to believe that when I die, I'll fall into the arms of almighty love and be safe forever more.

The woods are lovely, dark and deep

I spent the day feeling angry and sorry for myself. I shouldn't spend too much time in my head, it's a bad neighborhood. It was, however, a lovely day. We got clobbered with snow. About a foot, maybe more. I finally went out and shoveled snow for an hour. It was dark out already and still. When I was done I walked the dog through the woods. It lifted me out of my funk. I love the woods after a snowfall, even more at night when the snow reflects the moon and there's a hush over everything. It made me think of Robert Frost:

The woods are lovely, dark and deep
But I have promises to keep
And miles to go before I sleep,
And miles to go before I sleep.

Yeah, it's sad sometimes...

I just read a post by Dr. Dork http://drdork.blogspot.com/2006/01/palliating-ron-part-i.html & http://drdork.blogspot.com/2006/01/palliating-ron-part-ii.html. Well, two posts. Anyway, I really liked them. It made me think of a donor family I had once. Their son was murdered trying to break up a fight. They were the sweetest people and had actually brought up donation with the hospital once the extent of his injuries were realized. I did the written consent & med/soc history with them. They were holding up pretty well, but at the very end Mom broke down. They had asked me if I would be staying with him in the OR and I said yes. She placed her arm on my shoulder and crying, said, "You'll look after him, won't you?" With tears in my eyes I said I would. It would be my honor.

Like wading through taffy

Back to work, back to work. Triage let me sleep 'til 8am, ahhhhh. I get to go to an only semi-crappy hospital. 25 year old intercranial bleed. I arrive around 09:30, with visions of getting a first clinical done early, maybe have the second one done by this evening. My optimism is bolstered when the intensivist does the first clinical right after my arrival. Oh, what a naive, little TC am I. The intensivist decides to stop that exam, let neuro do the first one, then she'll do the second exam 6 hours later. Perfect. Except that neuro never shows. Did anyone call him? I asked for lab results....oops, tube of blood still sitting on the counter for 3 hours. Intensivist tells me patient is breathing over vent, somewhat miraculously considering he's BRAIN DEAD. I can't piss her off-I still need her to write orders, after all. "Excuse me, doc,"I say" I don't mean to insult your intelligence, but are you sure he's breathing above the vent?" Because I'm not naming names, but I've seen people who oughta know better look at a vent and not the patient and tell me the patient's breathing on his own-cause the machine said so! She's sure.

But wait! A few minutes later she comes out of his room and allows that maybe it was his enlarged heart beating that made his chestwall move and not his lungs. I say why not do an apnea test to be sure. No, no. Several minutes later she says, "I think I'll do an apnea test." Good idea, doc. Why didn't I think of that? Repeat this for 10 hours and you have my day. Hospital services tells me that she is not only the ONLY intensivist attending at the hospital, but she's the director of ICU. And she doesn't like being told what to do, so make nicey. Oh, I'm nice.

They do an apnea test without blood gases. Don't ask her for blood gases, I'm warned. She'll give you a big, long story about why they're unnecessary. So I bite and ask her why, thinking she's going to quote some research or something. No, it's because neuro will order the baseline ABG and not correct it and still do the apnea test. So the hospital's solution(because this is an actual policy) is not to do the ABG's. The irony is that when I gouge out my own eyes with frustration, I won't get preferential treatment for an eye transplant. AAAAAaaaaaarrrrrrhhhhhgggga, ga, ga.

post script:I left a stable patient with plans to return in the am, but went back in the middle of the night as he became unstable. The nurse busted her butt trying to keep him going while I tried to think of things to try. In addition to dropping his BP and oxygen sat's, it looks like he had an MI and went into atrial fibrillation. We coded him at 7am, 7:30am and 8am. Then they finally called it. I got someone from the OR to translate for mom as all this was going on. No fun was had by all.

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Alright, class, let's review:

• Change of shift codes are no fun.
• If neuro had arrived at 12noon, instead of 8pm, we might have had 2 clinicals and I could have gotten consent and managed this patient instead of putzing around all day while he slowly detiorated. The earlier you can manage the patient for donation, the better the outcome will be.
• Dr Intensivist, who by her own admission is against donation, should have communicated with the neurologist about who was doing what clinical when(she delegated this to the resident.) If they really wanted to make this donation happen, they would have. Now they can say, "well, we try, but this donation process never works." or "that mom was never going to go for it anyway."
• And what's up with doctors being against organ donation? I imagine having this conversation with her:

Her: Well, I don't really believe in donation.

Me: Alright, then, we'll add you to the list.

Her: What list?

Me: Why, the National No Organ Donation List, of course.

If you don't believe in donation, you can't be a recipient.

Her: Is there really such a list?

Me: What if there were? Hmmmmmmmmmmm.

nube, rhymes with pube

I am so computer illiterate. Love Monkey(LM) and Dear Kid(DK) tease me relentlessly. "It's called spam, S-P-A-M." I don't care, I've found my soapbox and I'm gonna let the world hear my message. Now, let's see what this button does.....