So. You're taking care of a loved one. You might be their healthcare proxy thanks to a
Durable Power of Attorney, you might not. No matter, they're the proactive sort, who, while they were well, completed a
Advance Directive spelling out their wishes for end-of-life care, and they've discussed their wishes with you. In this case, they do not want to be resuscitated, kept alive on a ventilator or fed through a tube. All of this seems perfectly clear in the paperwork and your mind.
In the process of transferring from the bed to a wheelchair, your loved one falls and is crying out in pain. You, being a compassionate person by nature, call 911 for paramedic assistance. Again, seems straightforward. A broken leg is a treatable condition, right?
Here's where it gets messy. In the midst of the chaos, your loved one isn't screaming anymore. In fact, they're not breathing and they have no pulse. They are
quite deceased. You're clear in your mind though - no pulse, no breathing = no CPR, no intubation, no dramatic shocks from the shiny
Packer Whacker . The paramedics will see the advance directive, recognize they're not needed, offer appropriate condolences and help you arrange for transport of the deceased after verifying that they are, in fact, not just resting.
Fat chance. No matter what you spent, no matter how genius your legal adviser, in most jurisdictions, your loved ones' advanced directives are not even worth the paper they are printed on in an emergency situation. EMTs and paramedics are compelled, either by law or company policy, to ignore most Living Wills and ADs. They will show up, they will see a lifeless body on the floor, and they will expressly violate their last wishes and try to make them undead again. CPR is not pretty, even when done properly.
It's probably a good idea to prevent people other than MDs from making a snap decision about who gets resuscitation and who doesn't. I'm all for erring on the side of caution in the large, theoretical way. In the intensely personal way that I view Cal, however, I'm crystal clear - ain't nobody getting lit up with enough energy to run a dozen light bulbs, even if it only takes five milliseconds.
The question is, how do we make sure our loved ones are treated appropriately in the event of an unexpected event where they can't speak for themselves?
Enter the Lemurs (Saucily Tangoing).
You need Physicians Orders For Life-Sustaining Treatment, or the POLST. (I still think Tangoing Lemurs) Born in the early 1990s out of a frustration of healthcare ethics professionals in Oregon, the POLST is a major advance in end of life care. It provides a portable (both in the sense that it's a single sheet of paper and in the sense that it follows a patient, rather than being retained at a single facility) mechanism for a doctor to provide specific orders to prehospital responders, emergency departments and other care providers about what measures are desired and appropriate for a specific patient. In sixteen states (as of February 2007), these forms are legally binding - just the same as having the physician (or ARNP, or PA-C) there ordering the care.
The POLST is *most* appropriate for people for whom death, in a given year, would not strike a healthcare professional as a surprise. Sounds harsh, but it's an easy rule of thumb. It's appropriate for the terminally ill, those with severe chronic health problems and others for whom death is not the worst possible outcome.
There's lots of information about the POLST Paradigm at
POLST.org, a service of Oregon Health and Science University. There's links to state POLST programs, an explanation, sample copies and instructions, even what color of paper to print it on to make it official. In brief....
1) Get a form. Making the effort to get the right color paper makes it more easily recognized, but copies are acceptable. Many healthcare professionals, hospitals, ambulance services, hospice organizations and state medical societies offer POLST forms at low or no cost.
2) Ponder, either for yourself or the someone you are healthcare proxy for, answers to some weighty questions, on the topics of CPR, medical interventions, antibiotics, and artificially administered nutrition (no, not like
these). You do not have to be someone's Attorney In Fact to initiate this conversation. I know that broaching this topic with a loved one is uncomfortable. It doesn't have to be a big emotional discussion all at once, either - just try to get a general idea of the preferences in each category, over time if need be. Many people have expressed a desire not to be "kept alive on machines" - if you think that's the case for your loved one, you can ask clarifying questions when the time feels right. Terry Schiavo's case prompted a lot of discussion of Living Wills - if you think it's appropriate for your situation, you might use news items or events in the life of friends and family members as an aid to conversation. Note that the stock answers on the form are not the only appropriate answers; your healthcare professional can write in addenda to clarify things - in our case, we would want cardioversion to correct atrial fibrillation if the treatment is potentially curative.
3) Make arrangements to review the form with a healthcare professional. This is essential. It's the signature of someone with those special initials after their name that makes all of this stick.
4) Put the original someplace safe-yet-visible, and keep a couple of copies. We've got them in Cal's apartment, with the facility management, in his records at all of his doctors, and we just came up with the idea of keeping a copy in the glove compartment of the car we haul him around in. His non-medical caregivers and their employer have been given explicit directions around the POLST, and we've met most of the local EMS crews at one point or another, and they actually know where to look. I'll talk more about the
Vial Of Life at some later date, but suffice to say, a form that is hidden in a desk drawer is effectively useless. The form will ride with your loved one to the ER if transport is appropriate, and guide their treatment there.
5) If there's been a substantial change in your loved one's condition since the original POLST was completed, consider reviewing it for appropriateness. Any willing physician can amend the orders, void a section or sign a whole new form.
We had our conversation with the doctor we see the most often, who knows Cal the best and is a great communicator. She asked him about his preferences, and guided the conversation in a way he could understand. It wasn't nearly as awful as I thought it was going to be - much, much, much easier than having the similar conversation with my mother (25 years younger, seriously ill, hospitalized with a terminal diagnosis at the time) two years before.
If your state isn't a part of the POLST paradigm yet, ask around. There may be similarly effective, portable mechanisms for specifying care preferences. Hospice organizations can be especially helpful in this regard.
Tangoing Lemurs. Seriously. Get you a POLST and sleep better at night, knowing that your loved one is more likely to get the exact end-of-life care that is best for them.
Eric
The only hands free system!
