Resources

Have you completed your Advance Healthcare Directive?

It might feel dismal to think about these things, but we don’t get a say in when life might go sideways. If a health crises were to happen, having your preferences documented and shared takes the pressure off of the people in your life to have to make tough decisions for you in an already stressful time. Think of it as a gift to them, and also to yourself.

There are many Advance Healthcare Directive forms that might work in your state:
—An easy and free place to start is: prepareforyourcare.org (This site also has resources to guide you through your choices.)
—Fivewishes.org is another great place to start. I like how they explain each of the five wishes. It’s free to preview their materials, although you have to pay if you want to actually use their form.

*In CA, where I’m based, your Advance Care Directive form must be signed by two qualified witnesses or acknowledged by a notary public. Rules vary by state, so check what’s true for yours.

Make sure someone close to you knows where to find your signed and completed form. Give a copy to your doctor, to any other healthcare providers you may have, and to any healthcare agents you have named. A health care agent (or proxy) is a fancy term for the person who will speak on your behalf. It should be someone you trust, but can't be your doctor. It doesn’t always make sense for it to be close family either, but it can be. If you’re unsure of whom to pick, The Conversation Project has resources to help you complete your care directive, as well as guides on how to pick a healthcare proxy and how to BE a healthcare proxy.

Compassion & Choices also has resources to help you understand your values for medical crises and at End of Life, and they also have specialized support around LGBTQ+, Dementia, and Medical Aid in Dying (MAiD). For my friends in the LGBTQ+ community, Sage has an incredible plethora of resources, including several Advance Care Planning Toolkits that are specialized for the LGBTQ+ community. I’m super impressed with their Dementia planning resources as well as their guides for Transgender and Non-binary people.

Are you single and worried about who will care for you at the end?

My friend Nikki the Death Doula created an awesome guide to help people who might be wondering how to approach End-of-Life planning when they can’t plan on a partner or adult kids to jump in. Seriously, I bought one—it’s so good! Here’s a link: No Family, No Problem: End of Life Planning for Single Folks - I love her tone and sense of humor, and she’s super knowledgeable. Buy one of her guides!

Are you going through a rough time?

There’s a company called Help Texts that sends you ongoing, expert text message support for grief, burnout, and coping with a terminal diagnosis. If you know someone going through a hard time, you can gift them a year of Help Texts.

Are you supporting someone who is dying?

I can’t say enough good things about Barbara Karnes’ guides. She is a seasoned hospice nurse and has made a number of small, accessible, and affordable pamphlets covering everything from signs and symptoms of an approaching death, to dementia and end of life, to navigating food and feeding at end of life, and more. She also covers pet loss and other topics like pain and pain management at the end of life. I’ve bough many, many of her guides for myself and I’ve gifted them to others. In fact, I gave a bunch of her Spanish-language guides to my grandfather’s caregivers while he was in hospice and they LOVED them. They’re offered in many languages. Check them out and support this amazing resource. In particular, I recommend:
Gone From My Sight: The Dying Experience
The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death
Always Offer, Never Force: Food at the End of Life

Are you curious about what dying is like?

Not long ago, death was an everyday part of our lives. People died at home, and we knew what dying looked like. We could witness a death unfolding without feeling like we need to FIX it. Times have changed, and death is often hidden away, medicalized, or demonized. It makes sense that you might have never seen someone die firsthand. Dying doesn’t look like most of what’s represented on TV, and it’s not a crisis. Death is part of life, and dying is a natural process—like breathing, going to the bathroom, and puberty. Our bodies know how to die. Here are a few amazing resources that explain what to expect:

Dying for Sex, Hulu (4:28)
This is a short clip from an incredible Hulu show called Dying for Sex. In it, this nurse gives a clear description of what to expect in the last month, weeks, and days of life. It's a really good explanation. It’s not graphic, but it is gently descriptive. Dying is an amazing and natural process, and you can be terribly sad about losing someone you love AND full of wonder for how our bodies work, at the same time. The limited series is funny and honest and a little in your face. It had me ugly crying and laughing until my ribs hurt, and I highly recommend it. The series has some male nudity, so be warned. Eep!

What happens as we die? - Kathryn Mannix, TEDxNewcastle, November 2022 (14:33)
TEDx description: Have we lost the practical wisdom of what happens as people die? With lessons from a career witnessing thousands of people's final breaths, palliative care expert Kathryn Mannix urges us to demystify the experience of death, sharing how a better understanding of what actually happens can reduce fear in the final days, for you and your loved ones.

If we don’t know what to expect, witnessing a death firsthand can sometimes be scary. Fear and anxiety can take over and we might think we’re witnessing a crisis that needs to be addressed. When we know what’s coming, we have a little extra emotional bandwidth to be fully present with our special people in such a unique moment in their lives. I hope one of these videos resonates with you and helps you understand death a little better.