Last night on Countdown, Keith Olbermann gave us a window into his experience with his father's illness over the last half year. He put a human face on issues and the pain involved in situations that the opposition to healthcare reform has been callously and cynically using for political leverage and financial gain.
At the end of his Special Comment, he requested that viewers talk to their loved ones about end of life issues and make their wishes clearly known. I reposted this diary in June of last year for Morning Feature, it was about time to dust it off anyway so here it is again to help people fulfill that request.
He's right, it is uncomfortable to talk about. It is hard to face and it can be wrenching. Do it anyway. Knowledge is the greatest gift you can give to your loved ones. Don't leave them to guess in an agony of guilt at what you want when the situation comes up and don't let them leave you guessing as to what they wanted. Accidents happen. All the time. We often don't get a chance to talk before something happens.
It's hard. Do it anyway.
To fight on or to give in and let go. At the end of life, or in dire circumstances, sometimes there are choices that must be made. Those choices should belong to the individual. They should be informed choices. And that means you should ask about them before we have to.
I’ve been an RN since 1988. With a dozen years of mostly critical care, mostly in L.A., starting at Cedars-Sinai with stops at UCLA and USC University, among others.
Critical condition, unstable enough to require specialized and often constant monitoring and care, is very difficult for patients and their families. Things can happen so fast, so unexpectedly that it’s terribly dislocating to have to confront one’s own or a loved one’s condition and make choices of a magnitude that many have never contemplated and with implications that most non medically trained people can't imagine.
One of the questions we have to ask and establish early on regards the patient’s code status, in order to define parameters for the extent of treatment. The first impulse for most people is to say, ’Do everything possible’. It’s a default response, said out of love, panic, loyalty and fear of loss. And they usually have no idea what the implications are.
There are basically three levels of code status: Full Code means we do everything, the full monty, the entire arsenal of pharma, mechanical assist and electrical cardiac stimulation, (think - 'Clear!'). The medical circus. And we continue it until the physical body is obviously beyond being capable of sustaining life. Sometimes minutes, sometimes hours. The second is Chemical Code, or No Compressions. We still use all the meds that we have available, and the defibrillator, plus intubation to assist breathing if necessary, but no mechanical CPR, (the physical, chest pumping part). The last is No Code, or DNR, (Do Not Resuscitate ), or Comfort Care Only. For that we monitor and continue regular treatments and medications to maintain metabolism, give medications to ease pain and to make the patient as comfortable as possible. Some people have DNR status for years. Some health care professionals carry DNR status as a matter of course and some literally have it tattooed on their chests.
Airway. Breathing. Circulation. The ABC’s that medical personnel are taught from the first CPR or EMT course onward. If any of those three things aren’t functioning, nothing else matters. And that means that for a full code, anything beyond keeping the heart and lungs online and doing their jobs is irrelevant.
Caution: some of the descriptions in the next paragraph are necessarily graphic,
you may want to skip to the one that follows.
.
As people age the joints get stiff, cartilage ossifies, (turns to bone), so the attachments of the ribs to the sternum don’t flex to the same extent that they used to. The lungs don’t expand to their full volume and don’t bounce back, (called compliance), as they once did. The very first thing that often happens when we start CPR on an elderly person is that most of the ribs break away from the sternum. Crunch and pop, all the way up, and with each compression. To do effective CPR the sternum has to be compressed 1.5 - 2 inches to squeeze the blood through the heart and back out to the lungs and body and if you’re not doing that there’s no reason to be there. Have you ever had a broken rib? Think for a moment about having up to 20 of them at the same time. And remember that bones heal more slowly as we age. But pain isn’t a consideration, the ABC’s are. Thankfully, people are rarely conscious during a full code, but when we bring them through they’re left breathing with all those broken ribs, either on their own or on a ventilator, sometimes for weeks after.
Chemical codes, (or No Compressions, sometimes No Intubation), are almost as effective for most situations as a full code. We have medications that can stimulate targeted systems in the body to amazing efforts. The defibrillator can usually correct fatal arrythmias. The terminology changes somewhat between facilities and states, so it’s best to be clear in your communications and ask for clarification if you have questions. Don’t be shy, it’s important!
No Code, or DNR, sounds like the end of the world, like giving up. But it isn’t necessarily saying goodbye and throwing in the towel. It’s just an understanding that if or when things go drastically wrong, we should let nature take its course and not interfere beyond providing comfort. Bodies wear out. We can prop up failing systems, often for a long time, but eventually there’s nothing left to work with. And propping up one system generally puts a heavier load on another. We balance one against the other for as long as possible, but at some point something hits a tipping point and there’s usually a cascade failure, one organ or system after another, like a house of cards, or a dam breaking. And at that point all our medications, technology and modern wizardry are useless. As much as we hate it, at that point we can't do anything more than anyone walking in off the street could.
I admire the courage and tenacity of those who will not surrender, who fight for the very last breath and heartbeart. Who go down swinging. And I am always exhausted and sad when we finally call it after however long we’ve been working to bring them through. But I understand and admire the ones who are tired and in pain and are not afraid, too. I’ve had wonderful conversations with people near their time. Memorable conversations about lives lived and lessons learned. About acceptance and perspective and the freedom to say things that would not have been welcome or acceptable under other circumstances.
There are many patients who want to fight to that last breath and many who say, 'Enough, I’m tired, I hurt, it’s not going to get better, when it comes, let me go'. I’ve cared for both and I fully understand and support both decisions. I am absolutely on the side of informed, individual choice. No one can or should make that decision for another if it can be avoided. To accept pain and all that goes with it and keep trying or to decide that enough is enough and accept what comes. That’s a very personal choice.
It’s hard to talk about eventualities with loved ones. Unpleasant ‘what if’s’ are usually shied away from. But informed consent and clear communication are important to have beforehand so that decisions are made knowing the consequences and what to expect, not in a panic of love and guilt and unsure of what the individual’s wishes are.
Code status can be updated, it’s not cast in stone, but make sure you communicate clearly about any changes and that those changes are charted and passed on in shift reports so everyone’s on the same page. We're often busy, often interrupted by somebody else trying hard to die. Follow up and make sure.
Understand the options and implications. Make your wishes known. Talk to your loved ones and ask them what they want. A living will/durable power of attorney for healthcare can detail exactly what you do or don't want done, i.e. feeding tubes, the number of EEG's done to confirm lack of brain activity, whatever you want to have known can be codified in that document. Execute it! The legal department won't let us use it if it's not signed! A signed durable power of attorney for healthcare ensures that you don’t have to wonder, if it happens that you’re the one that one of us is asking, if you’re following their wishes. Or worry that they’re following yours.
One more thing, talk to your doctor. Make a list of all the questions you have, (because you'll forget half of them if you don't), and corner your doctor and don't let them go until you get answers you can understand. Ask for translations into layman's English. You need to understand things.
Organ and tissue donation are also areas to make your wishes known to your loved ones. Thousands of people die every year awaiting transplants. Thousands of willing, eligible donors die each year without having made their wishes clear. While there have been some controversies in recent years regarding tissue donation, organ donation is tightly regulated and monitored. And much needed. The forms and options vary by state, please check your local forms and let your family know what your feelings are.
Patient education and advocacy is such an important part of what we do as nurses, and in ICU/CCU we tend to see people overwhelmed at such a terrible time that I wanted to try and make something that's this important a little more transparent. And maybe, hopefully, a tiny bit less difficult.
I'm sure I speak for many of us when I say that our thoughts and prayers are with the Olbermann family, and all the other families in similar circumstances. We deeply hope that the senior Mr. Olbermann finds the strength to rally yet again.
Peace.