(Rebekah Finn is a graduate of Alua Arthur’s “Going with Grace” end of life death doula training course and received her NEDA Proficiency Badge with the National End of Life Doula Alliance (NEDA). She is a bereavement and volunteer coordinator at Topkare Hospice. She is part of Topkare’s “Threshold Care Team” that helps create plans of care for the last 7 to 10 days of patients’ lives and leads community events that include acupuncture, grief gatherings, mindfulness meditation, and sound healings. Rebekah has a B.A. in Psychology from San Diego State University and has been a certified yoga instructor with over 25 years of practice.)
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How often do you choose to lean into the unknown or feel comfortable in the uncomfortable? Is there a right or wrong way to die? Why is it that we, as a society, can plan for all sorts of various life-changing events like graduations, weddings, holiday gatherings, higher education, births, anniversaries, birthday celebrations, retirement, etc., yet starting a conversation about death planning or end of life options and choices is avoided like a plague? There is one thing that is certain and we as human beings can all agree on — one day we will take our last breath and die.
Being in control and having the ability to make our own decisions is a major concern as we age. Think about the impact we could have if we started building a relationship with our own mortality by having conversations and learning all the various options that are available as we move towards death. Imagine creating your own end of life care plan that is customized and supportive to fit your particular needs. This would include your own stamp and style based on your own personalized preferences.
How does one start building a relationship with our own mortality to even know what could be possible?
Having open conversations about death isn’t the easiest task, but nowadays there are games like The Death Deck, Morbid Curiosity, or Death Over Dinner to help engage discussions among participants to share what they would want, but may have never contemplated or thought much on the topic. Barbara Karnes has written several end of life education short books and I highly recommend “Gone From My Sight, The Dying Experience” as it articulates and breaks down the natural dying process in months, weeks, days, and hours prior to death.
When I tell people I work in hospice there are usually a few common responses. Either they want to share personal stories of loved ones that they feel other people wouldn’t believe, or they’re interested and inquisitive, or it gets awkwardly quiet and they appear to want to run away or change the subject. Are we scared to talk about death because it can be placed in the category of the unknown? As a hospice employee working with dying patients, they teach me how to live. Most people think my job would be depressing, but the opposite is true. I’m honored and grateful for the opportunities to be present and collaborate with patients and families to create a soul-based plan of care to enrich, make meaningful moments, and sacred endings.
Oftentimes people don’t know what to do during those last moments. Having an intentional supportive plan can make all the difference. Intentional planning during the final days and months of life can create portals for transformation of relationships, families, and the way loved ones process grief after death. I’m an advocate of keeping things simple. In order to get an individualized plan, we ask simple questions to gather information as there is no one-size-fits-all approach. When you think of a loved one or special person in your life dying, what is the most important thing to you? What are your go to items or activities that bring comfort in their daily lives? When you could no longer communicate verbally, what do you want your environment to feel like? Are there certain things you want or don’t want? What does that visually look like? For example, do you want people in your room, if so, whom? Is sound ok with you? If so, what sound feels comfortable and what might feel stressful? Example — some patients may want their grandchildren running around while others would want it more tranquil.
Your personal care plan should incorporate all of your senses as these are known to be heightened during the end of life. Are there specific smells, sounds, tastes, sights, or touch that are their favorite or “must haves”? You should also be clear on what you do not want so it can be excluded from the plan of care.
As you read through these questions, what comes to mind? Do the answers come easily to you, or do you feel you need a bit of time to contemplate on your options? Here is a list of ideas for each sense to give examples to families as there is an unlimited spectrum of choices.
Smells:
- essential oils
- scented candle/incense
- baking favorite dessert or meal
- flowers
Sounds:
- specific music artist or genre
- nature sounds, rivers flowing, rain, waves, thunder storms, birds chirping
- story telling, favorite memories
- laughter
Touch:
- hand or forehead massage
- hair brushed
- pets, stuffed animals
- favorite blanket or sheets
Taste:
- sweet, salty, savory treats
- favorite beverage
- flavored mouth swabs
- fruit flavored water
Sight:
- sport/activities
- favorite place to visit
- somewhere in nature, mountains, redwoods, top of the mountain, sunrise or sunset
- favorite season/holiday of the year
During the final days of life, things can be hectic and emotional. Having the uncomfortable conversation can help make people aware that they have personal autonomy to make their own decisions of what feels right to them before they enter the transition phase.
May this blog post be an inspiration and encouragement that we do have the ability to make our own choices and prepare our individual end of life care plans. Let’s start by taking action to spend a few minutes a week to engage our own curiosity and think about what brings comfort in everyday life. It’s as simple as taking a piece of paper and writing down words or phrases as they pop in our minds. Once you come up with a few items that bring comfort and involve the senses, it becomes easier to construct an individualized plan to share with those who are near and dear to our hearts.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
You state: “Your personal care plan should incorporate all of your senses.” Pease be careful with “should.” Better to say “may.” What you want may not be what others’ desire. (Platinum rule). And (speaking as a fellow EOL doula) at the very end it may be best not to “ground” the person with such, as to increase attachment.
Hi Craig, thank you for your feedback and comments. I appreciate the language suggestion and I think “may” is a better use of words versus should so thanks for pointing it out.
What a beautifully, well written message that we all will benefit from.
Thanks so much for your kind words Annie. I really appreciate them.
By sharing our end-of-life wishes and preferences, we can make it easier for our loved ones to prepare an appropriate send-off for us. That takes some of the concern and pressure off them at a time of great stress.
In reading this I thought of the loved ones I’ve known at end of life, and there were definitely some preferences that I wish we had thought of. This is great information, and well written. Thanks, Rebekah!