Advanced Care Planning: I’m (not) gonna be forever young

Some of us want to die asleep in our own bed. And some of us want to go down swinging, utilizing whatever medicine has to offer. So which one is the right way to die? Trick question. The only wrong way to die is the way that you wouldn’t want.

There’s going to be some intense stuff in this post, and nobody wants to think about being sick. But it’s important, so that you can live the life you always wanted up to the end, and so your loved ones can be at peace knowing what you wanted. And trust me, this conversation is easier to have around the dinner table when it’s not a pressing issue, than it is do in a hospital room. The information presented here isn’t meant to sway you one way or the other, but to help you begin thinking about what you would want, and start a conversation with the people who would be making decisions for you. And so you can talk to your loved ones about what they would want in return. So let’s talk about what advanced care planning means, what it entails, and how you would go about it.

(Fine print: I am not an attorney and am not giving specific legal advice.)

Living Will

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Living wills are documents that you can create that outline your wishes if you were unable to state them yourself. This is generally limited to end-of-life care. They can be more general or very specific. At the more limited end of the spectrum, the living will can state that in the case of an irreversibly unconscious state (ex: coma), you would not want to have continued life-sustaining measures. You could go on to specify whether you would or would not want a variety of medical interventions: intubation (breathing tube), dialysis (kidney replacement machine), blood transfusions, feeding tubes, surgery, and so on.

When considering what to include, think about if you have ever said “I would never want XYZ done to me.” What do you think of as worse than death? Maybe the answer is nothing, and that is a completely acceptable answer.

Importantly, a living will is just that- a will for the living. Once you die, it’s not useful anymore. This is a completely separate document from a will that designates who gets your most precious belongings (in my case, my blue light alarm clock and almost completed frozen yogurt rewards card).

Healthcare power of attorney

A healthcare power of attorney (POA) is a person that you designate to make medical decisions for you in the case that you are unable to make decisions for yourself. That could mean that you are under anesthesia for a procedure, that you are delirious from medical illness, or that you are in an unconscious state. This will be the person that providers turn to when they need to get consent for a treatment. It will also be the person that, in the worst case scenario, would decide whether to continue life-sustaining treatment or not.

This is separate from a financial power of attorney, which dictates who would control your money and be responsible for covering your expenses while you were unable to do it yourself. You may opt to make one person both your healthcare and financial POA, or two separate people, it’s completely up to you.

So what if you don’t have a power of attorney? Physicians will rely on your “next of kin” to make decisions for you.

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Some variability by state. Next of kin must be 18 years of age or older. If nobody fits in the category (ex: no spouse or children) or are deceased, will be referred to next step. If there are multiple people in the category (for example, 3 children), decisions will be made by majority rules, although most practitioners will try to get everybody on board. To ensure your state’s next of kin priority, go to https://www.americanbar.org/content/dam/aba/administrative/law_aging/2014_default_surrogate_consent_statutes.authcheckdam.pdf

If your next of kin is who you’d want to make decisions for you anyway, then POA is less important for you to legally establish. But if you know you wouldn’t want your next of kin making decisions for you, then you have to establish a POA. Do you have hysterical parents who would do anything to keep you alive, even if that’s not what you want? Crazy spouse that you are separated from but legally still married to? Have a sister you haven’t talked to in 20 years? Doesn’t matter. If they are your next of kin and you don’t have an established POA, you’re out of luck. You can also establish a first, second, and third-line POA. Say you have responsible, knowledgeable parents, but your brother couldn’t even choose what type of cheese he wants on a burger, let alone what course your medical therapy should take. You could establish your parents as your first and second-line POA, and then choose a different, more decisional person for your third choice.

Say something unthinkable happens, and your mother is your POA; she wants to continue medical care despite you being in a permanently unconscious, or “vegetative”, state. But you have a living will that says you would want to remove life sustaining treatment. What happens? As providers, it’s our job to follow your wishes, and the closest we have to talking to you directly is your living will, so living will trumps POA.

Importantly, as long as you are well and healthy, this doesn’t matter. No, your mom can’t make you get your wisdom teeth out if you’re just putting it off, as long as you are capable of making decisions for yourself.

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Your loved ones if you don’t have healthcare POA paperwork

Who can be your POA? Basically anyone (who is over 18) you think would make good decisions for you. It could be your spouse, parent, good friend, hairdresser, cousin, partner, shoe salesman- whoever you feel like knows your wishes best, and would be able to follow through on them. I would suggest you ask this person how they feel about this duty… that would probably be an awkward surprise.

Code status

Code status refers to what you would want done (or not done) if your heart stopped. When you think of a Code Blue, you might think of a medical TV drama. The patient’s eyes roll back, the doctors are all somehow already in the room, they push limply on their chest a few times, shock them once, you hear the beeping of the heart monitor again, and they all leave to go discuss their personal drama more. But that’s not the reality- while CPR can be life-saving, only 12% of patients who code in the hospital live to discharge1. If you code outside of the hospital, your survival is closer to 9%2. There’s a lot of opinions in the medical community about code status, on both sides, so it’s important to be informed and have your own. Just know this is not TV and comatose people do not walk out of the hospital at the end of the hour.

Full code means you want everything done if your heart stops- CPR, shock, medications, the whole shebang. CPR won’t stop until either your heart restarts or you die (usually declared within 30-60 minutes of starting a code). Do not resuscitate, or DNR, means that nothing would be done to try to restart your heart. That does NOT mean you wouldn’t receive medical treatment like antibiotics or pain medications. Depending on the state, there are some “limited” code options. This could include a “do not intubate” order, no CPR to be performed, full code until a certain timepoint… so basically anything. If you’re interested in which of these your state has, talk with your doctor.

If someone asks, “what’s your code status?” this is what they are referring to. If you were to be found down, you are assumed to be a full code, until they found paperwork stating otherwise. If you are ever in the hospital, you will be asked this question. As a young person, this is probably the least pressing of advanced care directives, but something to be aware of and consider in case you are POA for your parents or grandparents.

How to make it legit

Hopefully after all of this, you’re realizing how helpful it would be to your loved ones to have some of your wishes legalized. So how do you go about it? For the living will and POA, there are a few ways. At the simplest, there are some forms online that you could adapt; then take it to your local bank to be witnessed and notarized (you can find some options at www.aarp.org/home-family/caregiving/free-printable-advance-directives/). There may also be forms at your physician’s office or local hospital. If you need more help, an attorney would be able to help you through any intricacies or what the best course to take would be, but it will cost you. If you are still in school, check out to see if your school has free legal services (“free” as in tuition paid, so actually really expensive); this is how I completed mine. If you were to want to change your code status, all you need to do is talk to a physician, and they can fill out the paperwork with you.

Any of these documents can be changed. If you get a life-changing diagnosis, or a new person in your life, or you just change your mind- you can change the documents. But make sure to ACTUALLY change the documents- it doesn’t matter what you said or jotted in a note on your phone or even hired an airplane to write in the sky, providers have to follow the most recent legal (meaning witnessed and notarized) documents.

While having legal documents in place is always ideal, the most important thing is to talk to the people who would be making decisions for you. And make sure to talk to the McNally B, Robb R, Mehta M. Out-of-hospital cardiac arrest surveillance — Cardiac Arrest Registry to Enhance Survival (CARES), United States, October 1, 2005–December 31, 2010. MMWR Surveill Summ. July 2011:1-19.people you would have to make decisions for, like your parents or siblings, about what they would want. You also deserve to have the peace of knowing you could make the right decision for them. As always, talk to your healthcare provider if you have any questions. And if you decide to have any legal documents put in place, make sure your physician have a copy on file if it’s needed for future reference (also give your POA/next of kin paperwork as well).

So now that you’ve had to think about dying this whole post, here’s a cute video of dogs and babies playing together: https://www.youtube.com/watch?v=Snw0rEWyvLk

 

Works Cited

  1. McNally B, Robb R, Mehta M. Out-of-hospital cardiac arrest surveillance — Cardiac Arrest Registry to Enhance Survival (CARES), United States, October 1, 2005–December 31, 2010. MMWR Surveill Summ. July 2011:1-19.
  2. Saghafinia M, Motamedi MHK, Piryaie M, et al. Survival after in-hospital cardiopulmonary resuscitation in a major referral center. Saudi Journal of Anaesthesia. 2010;4(2):68-71. doi:10.4103/1658-354X.65131.

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