My summer of cemeteries project is getting into a cemetery myself. No, I am not talking about strolling in the front gate. I mean putting my affairs in order so that when the time comes, hopefully in fifty or sixty years, my survivors will know my wishes and be able to follow them through with reasonable ease. I’m doing my homework now, so they don’t have to!
My first step is to complete an Advance Directive. An Advance Directive is a legal document that details who should make healthcare decisions for me, in the event that I am unable to do so, and what my preferences for those decisions are. There is space to include wishes about after death care and treatment, but this is not the same as a preneed funeral plan.
If you want to follow along at home, you can find a free copy of the Advance Directive that applies in your state here: https://www.joincake.com/advance-directives/. I live in Rhode Island, so I downloaded and printed that form.
The first big decision to make is who should be my health care agent. A health care agent is the person who would make treatment decisions in the event that I was unable to do so, including decisions to stop or withdraw life support. Obviously, this is a big decision. You don’t want Uncle Steve who can’t be trusted to bring the potato salad to the family cookout, or your friend Sally who collapses into a weeping mess every time her favorite character in a Netflix drama is killed off. You want someone you would trust to make decisions you would agree with, to hold their composure and think clearly in a time of stress, and with whom you have a stable and long-term relationship.
Without an appointed health care agent, this person would be (in descending order) your court-appointed guardian/conservator, then your spouse, then your adult child, then your adult sibling, then a close friend, and finally your closest living relative. Your default health care agent might be your best choice, or maybe not. Maybe you are a divorcee who doesn’t trust your 19-year-old son Chad to make sound decisions since he still thinks frosted tips are a good look. Maybe you haven’t spoken to your brother since the accident in ‘78 but your neighbor Mary is your best friend and knows your Chipotle order by heart. No matter what your situation is, setting down your wishes in writing clears up confusion and appoints a clear leader in a time of turmoil.
After you decide, but before you fill in the form, you should have a conversation with your health care agent and make sure they are on board and understand what you are asking of them. You could have them over for a cup of coffee (or in this era of social distancing, share a cup over Zoom) and say something like, “You are a person that I trust, and I know you care about me. Would you be comfortable being my voice if something were to happen to me and I couldn’t speak for myself?” Give them space to ask questions and voice concerns. If they agree, you can add them to your Advance Directive. If not, that’s okay. Not everyone is willing to have that level of responsibility. Go back to your Rolodex and find a second choice candidate. You can also appoint alternative health care agents in order of priority, in case your first choice is unavailable. This is extra important if you choose your spouse or someone else you spend a lot of time with, since there is a chance they could be involved in whatever catastrophe befell you, a la Barbara and Adam Maitland in Beetlejuice.
The next step asks you to describe your preferences for your end-of-life care or after-death care so that your health care agent can make decisions based on those wishes. In the Rhode Island Advance Directive, my health care agent has a list of mighty powers, such as giving, refusing, or withdrawing my consent for treatment or procedures, starting or stopping life support, advocating for my pain management, and selecting long-term care such as a nursing home, hospice, or residential care. I can limit any of the powers described by writing my wishes below. Also, a court can revoke my health care agent’s authority if they are not acting in my best wishes or try anything shady. No black market kidneys for you, sir!
The second section in the Rhode Island Advance Directive is health care instructions. As it says in the headline “This is what I want and do not want for my medical care.” There are questions provided to guide thought and discussion with my health care agent such as:
- Do you think your life should be preserved for as long as possible? Why or why not?
No, I don’t want to be kept alive if I will not recover to a reasonable standard of living. If I can’t engage socially with my loved ones, orient to my surroundings, or participate in meaningful activity, then no. - Would you want your pain managed, even if it makes you less alert or shortens your life?
Bring on the meds! I want to be comfortable. - Do your religious beliefs affect the way you feel about death? Would you prefer to be buried or cremated?
Natural burial! Do not embalm! See also: my life’s obsession! - Should financial considerations be important when making a decision about medical care?
Some cost-benefit analysis needs to happen. If the gold-plated diamond implants are reasonably likely to make me jump up and do the Macarena, go for it! But if a reasonable likelihood of recovery can’t be assured, let it go and spend the money on a trip to the Bahamas instead. - Have you talked with your agent, alternative agent, family and friends about these issues?
I’m sure they wish I would shut up about these issues!
As an aside, these are not the verbatim answers on my Advance Directive. The sentiment is the same, but legal documents about what should happen if you are unlikely to regain consciousness should not include witty quips.
In the Rhode Island document, there is also a list of specific choices to initial. If I am close to death and life support would only prolong my dying, do I want a feeding tube and/or life support? (NO!) What if I am unconscious and it is very unlikely that I will ever become conscious again? (Also NO!) How about if I am in the last stage of a progressive illness that is about to kill me and I can’t communicate, swallow, or recognize my loved ones? (Still NO!)
I am already an organ donor on my driver’s license, but the form also allows me to reiterate that wish as well as request that my organs be used for research if possible. There is space for me to list a spiritual or religious person if I would like one contacted for me, which I do not. On the Rhode Island form, there is also an entire sheet for other notes so you can list funeral plans, codes to your lockbox, where you buried the treasure, or whatever other information might be needed if you could not communicate.
To make this document official, I just need either two witness signatures from people who are not my health care agent, health care provider or employee of a healthcare provider or facility, or the signature of a notary public. When it is complete, I can give copies to my doctor, my health care agents and alternatives, my family, my lawyer, and anyone else I want to. I will also keep a copy in a conspicuous brightly colored folder in my office, clearly labelled. The worst thing you can do with your advance directive, besides not having one, is to tuck it in some overstuffed file cabinet or in a lockbox of documents somewhere. You want this document to be well known and easily accessible, something that someone could run in and grab while they throw on a coat and shoes to get to a hospital.
Please, make time THIS WEEK to complete your advance directive. Set a deadline for yourself and stick to it. Make sure that by the time you curl up to binge The Office for the twentieth time this Sunday night, your advance directive is printed, completed, and shared out. If you are over the age of 18, you need one. If you are a mortal human, you need one. If you are an ageless immortal demigod, you can sit this one out. But if you are not one of the Old Ones, make it happen, and make it happen soon. Your life, and your death, depend on it.
Playing Marbles for Keeps 
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