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  • Voice Your Choices: End of Life Planning Tips for the LGBTQ Community

 June 19

by Karen Purze

It’s Pride month and I decided to do some research to see if there are any special end-of-life care planning considerations for LGBTQ people. The short answer? Yes. While the basic estate planning documents are not unique, same-sex couples and LGBTQ individuals may need to take extra precautions in their estate and end-of-life care planning.

Here’s why, and what to think about before you contact an attorney (which I highly recommend you do. State law governs a lot of what I talk about here, and state law varies. A lot. So, read this for context, then talk to an attorney.)

Tip #1: Delegate Your Authority Explicitly with a Healthcare Power of Attorney

You may not plan to rely on biological family for support if you get sick, but the law privileges family (or professionals you may not know) unless you state your preferences explicitly.

End-of-Life Care Dos and Don’ts for LGBTQ Individuals:

  • Do grant legal authority. Give someone in your family of choice the right to visit you, make treatment decisions if you can’t, and advocate for you in a medical setting. Do this by creating a healthcare power of attorney document and naming a proxy or delegate (sometimes called a healthcare agent.) Even if you’re married, you’ll want to assign a healthcare agent, since relationship status and rights aren’t (yet) portable to all states…and you can’t control whether or where you get sick or injured.
  • Do name a backup. While you’re at it, name a second person. It’s much more common in the LGBTQ community to be cared for by friends and partners of a similar age. Unfortunately, that means the person you plan to rely on could be unavailable or have health problems of their own when you need their help. Always name a backup healthcare proxy in case your first choice can’t take on the role for some reason.
  • Do think about visitors. Consider also proactively documenting who is allowed to visit you in the hospital. A hospital visitation rights statement will help ensure your wishes are clear and facilitate access for non-family members who may play a role in your care.
  • Do self-identify. If you’re trans, consider giving your agent the power to order providers to respect your gender identity and expression by adding language in your healthcare power of attorney that specifically says how you would like to be addressed by the professionals who treat you. For example, what name you would like them to use (independent of whether you have had your name legally changed), and your gender pronoun of choice. The National Resource Center on LGBT Aging has example language in this publication.
  • Don’t forget your finances. A durable power of attorney for finances gives an agent, or “attorney in fact” authority to handle financial, legal, and property matters for you. This does not have to be the same person you named your healthcare agent, but if it’s not, it’s a good idea to sign a HIPAA authorization or make sure the document contains a clause authorizing access to your medical information. This allows your attorney in fact (the person named in the power of attorney for finances document) to help investigate and resolve matters related to medical bills as well as other financial, property, or legal matters.
  • Don’t be ambiguous. We’re talking here about important documents that grant legal authority to act on your behalf when you are at your most vulnerable. Work with an attorney to be clear about when the powers take effect as well as when and how they can be revoked. This is another area where state law — or biological family members — may not favor your preferred interpretation.

Tip #2: Make Your Treatment Preferences Clear in an Advance Directive

An advance directive clarifies your end-of-life care wishes with a living will, In some states, a single document also serves as a healthcare power of attorney. Either way, a living will describes your choices for treatment and gives guidance on what’s important to you. This is also where you outline what kinds of treatments you want (and don’t want) at the end of your life or when you can’t make your own decisions. Voice your choices.

Advance Directive Dos and Don’ts for LGBTQ Individuals:

  • Do develop preferences. For example, if you’re living with a chronic or progressive illness, get familiar with the common complications of the disease. Learn what treatments are likely to be effective at various points along the path. If you’re healthy, think about what makes your life meaningful and share that with those who will be by your side when it matters most.
  • Do be clear and direct. A living will is a powerful statement of intent that should be specific enough to withstand attack if there are disagreements about medical decisions or treatment plans. (As you might expect, it happens.)  

Tip #3: Make Your Final Wishes Clear with a Will or a Trust

Strange things can happen when it’s time to say goodbye. Your niece may decide your stuff is hers. Your brother may insist that your body be buried (not cremated as you wanted.) Your mother may tell the funeral director to put you in a suit (when you’d rather be seen in a dress.) Avoid this by creating a will or trust, and including a statement of your final wishes.

Estate Planning Dos and Don’ts for LGBTQ Individuals:

  • Do find an LGBTQ-affirmative attorney. The National LGBT Bar has affiliates in many states. Of course, your friends may also have some good ideas, too. Ask around and find someone with expertise in the issues about which you care most.
  • Don’t leave open questions. In addition to specifying what you want to happen to your stuff, let people know what you want to be done with your body. Your will or trust should cover most of it, but if necessary or if your attorney advises, consider adding instructions for the disposition of human remains. It sounds morbid and impersonal but ultimately it’s practical. If you’re clear about what you want to happen and how you want to be remembered, nobody else has to guess your values or impose their own. You can finish your life authentically and according to your own values. That’s a gift to everyone involved (including you.)

Tip #4: Think Defensively and Protect your Agents

As I mentioned before, you may need extra protection to make sure your wishes are followed. Experienced attorneys from the LGBT Bar outlined some additional considerations for their clients in this webinar:

Dos and Don’ts to Protect Your Agents:

  • Do give your agent the right to move you to another hospital or home at their discretion.
  • Do authorize your agent to deny payment or sue on your behalf and on behalf of themselves if your rights are violated or if you experience discrimination in the course of your care.
  • Do consider a pre-need guardianship to designate someone to be your guardian in case of incapacity.
  • Do include a provision for gifting. Allow your agent to pay themselves. A provision like this can protect your agent from accusations of wrongdoing.
  • Do provide for delegation of authority if not prohibited by law. This allows your agent to share the responsibility as they see fit.
  • Do use an experienced attorney to execute the documents to avoid issues of enforcement.
  • Don’t accept default forms which may include default language that doesn’t fit your circumstances.
  • Don’t leave your documents at home. Keep a copy with you when you travel, and a digital copy in cloud storage so it can be accessed from anywhere.

If that’s not enough, I have two final recommendations of my own:

  • Don’t leave your agent guessing. Leave them a roadmap of your accounts and the personal information they need to care for you and keep your life in motion while you recover (or settle your estate when you’re gone.)
  • Don’t take my word for it. Get in touch with an attorney and give a “voice” to your choices! I mean really, haven’t you been meaning to take care of this?

Good luck, and take care,

Karen Purze

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About the author

Karen Purze is the author of Life In Motion: A Guide for Gathering Life’s Vital Details, a workbook to help people get their affairs in order. She is currently working on a memoir about her caregiving experience. Sign up for the Life in Motion Guide newsletter to be the first to hear more!

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