I've been interested in end of life (EOL) coaching since I began my coach training several years ago. I have witnessed family members, friends and others face their imminent deaths (typically due to a medical diagnosis or simply their body reaching its expiration date) in various ways...quickly, slowly, with a plan in place, in denial, overwhelmed by choices and decisions, and sometimes lost within the barrage of differing agendas: medical intervention (or not), religious protocol (or not) and family dynamics (or not).
I've noticed that sometimes the person is ignored, and the illness or state of their physical body is the focus. This saddens me. I feel like there is something missing for these people. That they get overlooked in the process of analysis, decisions and options. That it becomes not about them as a whole, complete human being, but only about that one -- physical -- part of them.
I want to create space for people to have 'good' deaths. Deaths they feel ready for. When death comes, I want these people to feel they are more than a diagnosis, a statistic, a sum of the treatments they received. I want them to have had the opportunity -- and support -- to explore their experiences on this planet, and have some attention paid to WHO they are, how they want to BE and what they want to DO, if anything, as they face death...in a way that doesn't ignore a medical condition or situation, but that doesn't make it the central character.
This really is the premise of any holistic coaching practice: to help people be at choice to live a life that brings happiness, fulfillment and satisfaction, as defined by them and only them.
Some people realize early on that they want to choose how their life unfolds. Others discover this later, after they have followed a path they believed they "should" or "have to" follow, and find themselves unfulfilled and unsure who they are and what they really want. And others learn after a scary diagnosis, major injury or other life-altering event that their time here is limited, and they want to make the most of it. In reality, none of us knows when and how our lives will end, so living in the power of our choice, in a life of our own design, is available and meaningful at any point. Imminent death just brings a sense of urgency to it.
I began following leaders and trailblazers in this realm, people who have brought the 'good death' conversation into the mainstream. Dr. Martha Jo Atkins. Sarah Kerr. The Conversation Project. Death Cafes. Death Midwifery and Death Doula groups. (just Google 'em!) These are individuals and communities striving to bring choice and awareness about death to others in an effort to demystify and normalize death. (Spoiler alert: It happens to everyone!) These are people who want to create space for good deaths, who've found ways to make these conversations acceptable and comfortable. I've found wonderful resources from these people and groups.
And now I get to apply them to myself.
A couple weeks ago, I found out that a polyp I had removed from my cervix was cancerous. The immediate plan of action, medically, was to have a cone biopsy and other exploratory surgery to see if there is more. Since then, I've had blood work, a CT scan and now am awaiting a consultation at the local cancer centre and a surgery date from my doctor.
While the surgery itself is fairly routine, I've never been under general anesthetic, and I have a pre-existing immunity-suppressing disease so recovery from anything can be prolonged in my case, so I'm doing all the advance care planning things one should do prior to surgery.
And it's been a journey.
My husband and I created wills after his parents died and we had our daughter, so the legal stuff is mostly in place. Using my health region's guidebook, I assigned a proxy, and created my living will/advance care plan. This covers delightful topics like the level of life support I'd like should things not go as planned during surgery; if I'd like CPR or not; how I'd like my organs and tissues donated or not; and then the things I'd like or not like to happen if I am declining and death is clearly approaching -- music, visits from certain people, things said or not said, etc.
And breathe.
I made a list for myself of the other things I'd like to have in place if the surgery doesn't go well. While many people don't want to think about these things, let alone write anything down for them and then talk about them, in my family's experience, NOT having things written down creates agonizing choices for loved ones who have the task of making arrangements on your behalf. Plus, I'm a planner and dare say a control freak, so planning is a) fun for me, and b) helps me feel like I am controlling something in this time of unknowns and what ifs. The list includes things like:
- planning my funeral or memorial service, including music, food (no ladies' auxiliary sandwiches!), who speaks, and the feeling I want the event to have (I was an event planner in the past, so...)
- collecting all my logins/usernames/passwords for bank accounts, email, etc. and putting them in a secure place
- updating my will with particular items to be left to particular people, and instructions for particular actions or wishes I have after I'm gone
- recording video messages for my husband, daughter, parents and siblings
- writing love letters to the amazing people who have been part of my life
The practicality of focusing on a list and checking it off helps keep my big emotions in check, most of the time. So for me, it's a coping mechanism. A way to stay present and productive.
I've also begun to answer some big questions about my life using resources from Willow EOL. I'm finding that exercise way more challenging than I thought it would be.
I often ask my coaching clients these similar questions and what I've learned is it is way easier to ask than to answer. Especially when there is a very real chance my answers may need to be final in the next couple of weeks. So, I keep putting this exercise aside and focusing on the "practical" stuff. It's just easier. Heart work is hard work.
Sharing about it helps bring awareness to the need for practicality in these situations so that hard decisions can be made more easily in the moments when big emotions are present. I hope I'm making it easier for my people. I know there will be sadness and grief and anger and all the big feelings, but at least they will know what I wanted, so they won't have to worry about choosing wrongly.
Like for most of my life, they just have to do what I tell them and everything will turn out fine.
I will write more here about the other aspects of my diagnosis, the EOL planning I'm doing and the big emotions I experience, so if you're into that, I invite you to subscribe and comment. If you're not, please go about your business.
Much love and light,
Jilly