Hospice / End-of-Life Checklist

by Laura Sweet, Certified Cancer Journey Coach

The following is based on my experience as a hospice volunteer, and caregiver to my mom at her end of life.

A dear friend from my hometown — one of my mom’s closest friends — reached out recently to ask for advice about supporting a friend who just entered hospice care. Here is what I wrote to her:

I always remind myself before I talk with or meet any client, “We heal with our presence” and “Start by listening.” Those are the two concepts that never leave my consciousness when sitting with Suffering.

I would consider asking/saying any or all of the following to your friend and her husband, as appropriate, over the coming days/weeks, with an understanding that you are not necessarily seeking answers to all, as some are for them to reflect on and answer to each other and themselves:

1. Know you are not alone (said to patient and caregiver/husband). I may not have the answers or a cure, but I can make sure you will not walk this path alone. Please know you can lean on me, and you can trust you have a safe place to vent, cry, sit silently — whatever comes up for you. Any and every emotion is completely safe and natural to have, particularly when we identify it and inquire of it — what message does it have, or awakening, or clarity? Then, let it go.
   
   Suppressing emotions to “put on a strong face” for your spouse, for example, contributes to the overproduction of stress hormones, such as cortisol, which puts you in “fight or flight” mode; creates an inflammatory response in your body; creates “dis-ease,” blocking your body’s own self-healing mechanisms from activating. It’s science. And to clarify, “self-healing” doesn’t mean “curing,” but it can set the stage for decreased pain and symptoms, and an improved quality of life for whatever life remains. We have to “feel it to heal it” even if it’s those unnerving “gremlins” that start feeding you a fear story at 3 a.m. Invite them in for tea, befriend them, see if there’s anything to explore with what they bring up.
2. What is the hardest thing for you today? The scariest?
3. How can we support you? (Get specific here — if there is community support, would a couple meals/week delivered to her husband help? Does she want visitors or no? Cards? Prayers? A massage from hospice?)
4. Whom are you most worried about once you leave this realm? Gently encourage that person to verbalize, “It’s okay for you to go,” or “I’m going to be okay because of the person you helped me to become” or some such assurance to give them “permission” to leave. A fellow colleague in the end-of-life field, whom I admire greatly, says this is not necessary, but it sure seemed important for my mom’s ability to let go. (The hospice nurse on my mom’s final night implored my dad to assure her he would manage. She had been asking “What does your father have to eat for dinner?” every single day until she was no longer communicative. My dad had been reticent to do so but he sat beside her, held her hand and said, “I’ll be okay, Jane; the girls will look after me.” She died hours later.
5. What matters most to you in this time in your life? Let’s make sure we understand and honor that. This ties in with quality of life, and the “line in the sand,” if you will, that delineates a life that feels no longer worth living. For example, in Being Mortal, Dr. Atul Gawande shares how his father’s gauge for perceived quality of life correlated with his ability to join the family at the dinner table. Your friend’s care plan should keep her values and priorities at the forefront, and adjust treatment accordingly.
6. They should consider end-of-life wishes if they haven’t already written an advance directive, POLST (Physician Orders for Life-Sustaining Treatment, will, etc., in order to help manage her end-of-life care, including medical treatment, extraordinary measures and CPR. Her husband — or designated surrogate — should know and understand her wishes. It’s a thoughtful gift that can alleviate guilt on the part of the caregiver when wishes are clear.
7. What is most important that people know about you? Which three words would you use to describe yourself for how you want to be remembered? I love the idea of a legacy letter, which is a tangible item that leaves your imprint on the world — “I was here” — and any musings, lessons learned, influential people, favorite places, wishes for loved ones, etc. There is a helpful book called The Book of Myself, by Carl and David Marshall, which my mom filled out, as it has writing prompts and makes it easy. (She also left each of us a letter.) I’m also fond of these ideas: planting seeds jointly in a garden or container; a ceramic or painted handprint; a photo of your hand in theirs; DNA mouth swab for genealogy testing (only with permission from your loved one); a voice recording of a favorite phrase or pet name (I regret not recording my mom exclaiming, “Hi, Sweetheart!” when she answered my phone calls, and at year five since her death, her voice is fading in spite of otherwise feeling so connected.)
8. If she’s able to communicate her presence/awareness, after she’s physically gone, what form will it be (hawk, hummingbird, etc.)?
9. What does she hope for her husband after she’s no longer here physically?
10. Be mindful of the reality that she is saying good-bye to everyone and everything — you and her loved ones are parting with one person. One of the most impactful exercises we did when I was training to be a hospice patient support volunteer, is to list our four favorite places, hobbies, people, etc., and “try on” the grief that patients feel as their physical limitations leave them in a state of accrued loss.
11. (In private, and only if you are moved to ask and are open to receive): Is there anything at all lurking in a dark shadow of your life that you would like to say aloud, and unburden your soul as you transition to the next realm? I am a willing and trustworthy witness and recipient of any shame story or anything at all you want to come out in the daylight to free yourself.
12. I like to remind people in the appropriate moments, that grief is the price we pay for love, that love and energy never die, that you will commune with your departed loved-one in a different way, but it doesn’t prohibit a satisfying and revelatory connection. They live on in your heart now, and you get to honor and remember them by the way you live. Ram Dass reminds us “Death is safe.” I also find it deeply comforting and provocative that the final words Steve Jobs uttered as he died were, “Oh wow . . . oh WOW . . . oh WOW.”

Peace to you and your friend. Try to stay open and curious about the mystery of it all, and to receiving the unexpected gifts that accompany the end-of-life journey. There’s something surreal, profound, and even beautiful when everything else falls away, and the focus is on relationships, love, connection, and yes — healing.

You may find Laura on Twitter at @laurasweetjane