Pandemic or no pandemic - why I'm tending end of life care decisions

Pandemic or no pandemic - why I'm tending end of life care decisions

Update: Check out MyDirectives.com for easy, free, digitally accessible, and nationwide forms

Proper and regular hand washing is getting a lot of attention right now. Obviously, the stakes are high and the attention is appropriate. But even though this moment holds acute risk, it’s a good reminder to re-examine our regular practices and routines. Ideally, we’re giving hand washing proper attention all the time - this practice acknowledges our interdependence in a world where many have precarious health and benefit from everyone’s participation in proper hygiene. This is a time for increased attention to something that, ideally, would already be a common practice of ours. 

Similarly, this particular moment calls our attention to something else that, ideally, would also be a regular practice among us - talking about death and end-of-life care.  Every adult, healthy or ill, young or old.

This is a truth that is always with us: no one can know how long our “one wild and precious life” will last. And when we are in good health, we have a great opportunity to think and talk with others about our end-of-life care needs and desires.

I’ve been meaning to fill out a Medical Power of Attorney form for myself for a long time now. I don’t have any pressing reasons to believe I will suddenly be unable to make my own health care decisions. But as a former hospital chaplain, I also know all too well that unless we choose to do these things when there’s no pressing need for them, it’s often too late when they’re needed most.

Like many queer and trans people (and certainly others), my legal next of kin is not who I want called in making my healthcare decisions for me if an emergency were to occur. So this week, I’m taking the time to go ahead and fill out the basic legal form necessary to give that power to someone else. Tending this paperwork and the corresponding conversations should already be a regular practice among us. But because it’s not, why not use this particular moment of heightened awareness to shift our attention towards things otherwise too-often neglected?

The former hospital chaplain in me - and the queer in me - wants to remind everyone that there is NEVER a bad time to do a few things: 1. Update your Medical Power of Attorney and Advance directives 2. Share with someone you love what your wishes are if you were to face a need for extreme medical intervention and in the case of death.

If you become sick, do you know who has legal rights to make decisions about your health care if you can't do it for yourself? If you are legally married - it's your spouse, but if you want it to be someone else, you need to be prepared with a form to designate that. If you are single or not legally married - it may be your children or your parent or sibling - all depending on what your family is shaped like. (Do you know who your parent's legal first next of kin is and do you think that's what they want? Not a bad time to check in and have these conversations by phone, even if you don't update paperwork.) 

Of course, on my mind especially is all my LGBTQIA family who may not want legal family showing up all of a sudden for end of life care or who may have a partner but not be married. But truly everyone should think through this. It's ok if you want to designate someone different - even if, for instance, you and your spouse decide it needs to be someone else. 

You can access the forms needed in your state here: https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/.

A few things to note: 

  • Forms are different in each state. If you have one but moved, update yours.
  • In most cases, you do not need a notary as long as you have two witnesses who are not your doctor, a relative, or the person you are designating to make decisions for you. Some states require the signature of that person and some don't. 
  • You may need to get creative with how you get signatures in this time of social distancing. 
  • To be a legal witness may sound intimidating but it’s very low risk. When I was a chaplain at the hospital, we would pull any willing stranger from waiting rooms and hallways to be witnesses for these moments. The role is to simply bear witness to the fact that the person is signing their own form - to ensure it’s not being forged, they are mentally present enough to make their own decisions, and there is no act of coercion happening. That’s it. The eyes of an uninterested party. Strangers, friends, acquaintances - any will do. Normally, I would encourage people to be careful about signing any legal document for someone else but in this case, it’s an easy and kind thing we can do for one another without worry. 
  • Your Medical Power of Attorney is who makes health care related decisions for you if you cannot make your own. This has nothing to do with who inherits anything of yours in the case of death or who handles memorial arrangements etc. Learn more about MPOA here: https://compassionandchoices.org/resource/my-end-of-life-decisions-an-advance-planning-guide-and-toolkit/will-speak-choosing-representative/
  • Advance Directives are often filled out at the same time. They allow you to designate your wishes about how much intervention you want in the case of the dying process. For instance - do you want to be kept alive on a ventilator even if death is inevitable or do you want to prioritize comfort and freedom but not life support? You may write in details or simply answer the questions and give your trusted decision maker more flexibility to make decisions based on the circumstance by not writing in additional details. You can learn more about advanced directives here: https://compassionandchoices.org/resource/my-end-of-life-decisions-an-advance-planning-guide-and-toolkit/want-decisions-life-sustaining-measures/

Maybe you don’t need to fill out an MPOA or maybe you’re just not feeling up for doing it right now. You might consider beginning with just having conversations with people in your life. Your parents, your adult children, your siblings, your chosen family, your lovers, your friends.

If you’re clergy, consider offering some online workshops to guide your community through these important conversations. Just a few weeks ago, we remembered together “from dust we become and to dust we will return.”

This work of preparation at all stages of life is an act of care for those who will tend to us in love when we cannot do it for ourselves. It’s never too early for that. 


M BarclayRev. M Barclay is a United Methodist deacon serving as Director of enfleshed. M formerly served as Director of Communications at Reconciling Ministries Network, advocating for queer and trans justice in The UMC. They have also enjoyed working as a hospital chaplain, youth director, justice associate and faith coordinator for reproductive justice in Texas. As a queer and trans minister, M is passionate about writing, teaching, and preaching on finding the Sacred in the people, places, and ideas often overlooked.


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