Dying Well

(Diagnosed with stage 4 bowel cancer in 2018, Clair Fisher was initially told she had less than a 50% chance of surviving a year. After retiring from work, she started the project Dying Well, in collaboration with the What Works Centre for Wellbeing, as a space to document her personal journey and explore the evidence around well-being in terminal illness. This article, used with permission, appeared online at https://theconversationproject.org/tcp-blog/dying-well-2/).

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What if death wasn’t something to be feared, or fought? What if we could talk about death and dying as naturally as birth and living? What if there was a liberty in accepting the limitations of our human existence on this Earth and freedom if embracing what it means to live and to die well?

These are the ideas I have been exploring since my own sudden, stage 4 cancer diagnosis just over two years ago. I have become fascinated with the language and narrative around terminal diagnosis generally, and cancer specifically. The further along this journey I go, the more I am convinced that there is more to life than simple survival; staying alive at all costs is not the life that I want to choose.

With the advance of modern medical interventions, there seems to have developed a myth that all sickness should be curable, and that we can all live forever. That death is always a lost fight or a medical failure. We seem to have lost the sense of the precious and fragile nature of life.

My own palliative-care plan has so far included three major surgeries and four seasons of chemotherapy. But as time goes on, I am finding that I am less inclined to easily consent to the next treatment option that’s offered. Not because I don’t want to live, but because I want to weigh carefully the cost and the benefit. Living longer is not enough for me – I want to live well.

I have learned the hard way how long it can take to recover from significant surgery, how exhausting and stressful it can be for my young family, and how long it is before you recover a sense of yourself. A surgery that is going to take me three months to recover from needs to offer me way more than three extra months of life for me to consider it worth the effort!

So, my retirement project has become Dying Well. I am personally testing out an evidence-based approach to finding happiness and well-being, even as my body crumbles. Doing everything I can to feel well, be happy, and continue to live as myself. To take control of the decisions around treatment, to weigh quality of life as more important than quantity of life, and to challenge some of the taboos around death and dying as I go.

Some say that I’m being defeatist or negative, but I have found complete liberty and joy in resisting the “fight” narrative of cancer. For too long, our society has hidden away the reality of death and refused to confront it. We rush people to the hospital and expect them to always come back “better.” When people die, often there is a search for who to blame, or a questioning about what more should have been done. We campaign to eradicate every disease and sickness, yet we will all die of something one day. Our fragility and humanity seems to be denied as we seek medically enabled immortality.

It breaks my heart to see the number of people spending their last days chasing after miracle cures rather than enjoying the miracle of the life they still have.

I don’t fear death, but I do fear losing my identity to the sickness that the “treatment” seems to bring to so many. I’m not giving in or giving up – I’m just not wasting energy on fighting that could be so much better used gardening, laughing, walking, reading, or simply being.

There is peace in this acceptance that allows us to have open and honest conversations about how, when, and where I will die. I feel grateful that as I live my last days in the best way possible, my family have talked honestly about the reality of my death. I think we are as prepared as we can be.

The end won’t be a surprise, or perceived as a failure. We know that my death will be sad and significant, but it feels important to find a way for me to die well and without trauma. This should be something that is possible for all of us.

Update

On 26 January 2022, Clair Fisher died. Clair was an amazing advocate for talking openly about death and dying, planning for the end of life, and for hospice and palliative care.

I first met Clair when we spoke at an event for Dying Matters Week organised by Cornwall Hospice. Clair shared her perspective on completing an Advance Care Plan, and I was blown away by her authenticity and the power of her words. We invited her to join us at Good Grief Festival October 2021, and I was honoured to facilitate a panel discussion with her and two other guests entitled Serious Illness: Grieving for a Life Interrupted. In honour of all Clair achieved, we are making this session free to access on the Grief Channel.

This update was written by Dr Lucy Selman, founding director of Good Grief Festival.

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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.

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