What does it take to be able to play a meaningful role in the 'End game'?

7th December, 2023, 9:45 pm

Approaches to death

Your death is your lfe. Dying well must become an obligation that living people and dying people owe to each other and to those to come.” Stephen Jenkinson, Die Wise)

“We live in a death phobic society, so dying is very isolating for people. Their own natural anxieties about dying are compounded by our societal inability to talk about it". - Shoshana Berger, Co-director of "The End Game" TED Talk

"It is a human rights issue to be allowed to contemplate dying and to be prepared to die well" - Dr. Dawn Gross, Co-director of "The End Game" TED Talk

Stephen Jenkinson’s ‘Die Wise’ was the was the first book about death that I read. His book explores the western approach to death. It is an approach often characterised by fear, avoidance, disavowal and a focus on prolonging life at all costs. His approach to death and dying is one that embraces death as a natural and necessary part of life.

https://youtu.be/SIN3erN9uoI?si=cEwg_SJ9sFS3-mkw

The book delves into various aspects of dying including the environmental, social, and spiritual consequences of fear and denial. Jenkinson challenges the idea that death is a problem to be solved and instead encourages us all to confront our mortality and approach dying with wisdom and with grace. In his book Jenkinson draws on his extensive experience as a palliative care counsellor. He uses stories and antidotes from his work to illustrate his points and provides practical advice on how to navigate the dying process including how to support loved ones who are dying, and how indeed to prepare for one's own death. He does so with grace and ancient wisdom that flows through his voice and - in this case - touches my soul. The book has had a lasting impression on me and has been pivotal to my death education and learning.

‘End Game’ is the first documentary film I watched that focusses deeply and solely on end of life care. In particular, the film explores the experiences of terminally ill patients and their families as they navigate the end of life. The movie portrays different individuals who are approaching death, highlighting their fears, hopes, and the decisions they make. The film suggests that by embracing the reality of death, individuals can have a more peaceful and fulfilling end-of-life experience. The film allows us glimpses into the many facets of grief, the importance of conversation around death, the powerful force of letting go and holding on, and the role of hope, denial, acceptance and inevitability. In showing the lives of families and individuals it provides a thought-provoking and tender exploration of dying, the dying process and the struggle in end of life care decisions. It challenges the death phobic culture, and advocates for open discussions surrounding death.

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From both the book and the film I have learned the value of approaching death as a teacher, guide and as way of making central the

• mystery of death as profound, beyond our control and a great curiosity

• necessity of grief and mourning as integral to not only the dying process, but the state of being human

• possibilities that can emerge with authentic and honest communication about death and dying, and finally the

• insights and personal, emotional, and spiritual expansion that can come when seeking to give meaning and purpose to end of life journeys.

Death as a teacher and guide: Principles and Practices

But I must dig deeper.

To address my reflections on this 40-minute film and of the book raises another question. It is a question that I know will continue to sit with me. The question is not if I want to be a death doula. That is not in doubt.

Rather, do I have what it takes?

Can I cultivate the ability and the mind-set to really sit with people and hold space for them? What concerns me most about being by the bedside of someone who is dying is being in the presence of such strong emotions. Perhaps not from the dying soul, but from those they are set to leave behind.

Over the last year, I have gained insight into practices and principles that will prove to be immensely beneficial. I have been able on the Soul Companions course to start to put in place foundational practices and principles that are helping me to re-shape this initial anxiety into a curiosity and open-mindedness about myself as a death companion. This framing is not a magic wand, but rather a guiding light. This death-as-teacher-and-guide framing is an emergent, at times painfully slow, way of being.

So far, key values and principles include:

1. Valuing the long and varied tradition and vocation of accompanying a person as they transition from this life allows me strength in numbers. I am part of a community of people serving those at end of life and their families. We are providing a sacred service. Such knowledge allows me to tap into their strength and to position myself as a provider, and guide. As my partner says, ‘you are an observer, be the observer’.

2. To hold space and to be an observer calls for a heightened awareness of self and constant self-care. Meditation, therapy, walks in nature, stillness, mindfulness and breathing, as well as regular exercise, spa days (or the like) and time spent alone, and in the company of those who can enrich me are all practices I know I must continue to cultivate as principles of daily life. Key here is the value, principle, and imperative of cultivating a regulated nervous system.

3. The Soul Companions Seven Principles and Code of Practice in working as an End-of-Life Care doula is set to be a key element of my work and frames my ethical and moral obligation to my clients and their families. As outlined on the Soul Companions website:

The Soul companion works to:

• Recognise the individual needs of the dying person and their family and creates an atmosphere where they feel dignified, loved and supported.

• Acknowledge, respect and honour a dying person’s beliefs and practices.

• Provide comfort, compassion, continuous support and reassurance in helping a dying person to experience the death he or she wants (within legal bounds).

• Guide and support a dying person to facilitate, in a non-medical way, a peaceful death and final farewell.

• Keep a loving vigil and support those also keeping vigil by creating and holding a sacred and healing energy space for the dying person.

• Provide gentle therapeutic techniques to alleviate anxiety and tension, applying an attentive manner and calm understanding, acting as a companion to the soul, working with spirit, especially during the stage of soul transition.

• Help the dying person and their family on this journey by allowing the natural course of life and having courage to let things simply be.

I hope I always have a level of anxiety about my capacity to hold space as a death doula

and to play a meaningful role in the end game, as it were. My aim is to lean into the anxiety and re-shape it into curiosity, awareness and a sense of expectative encountering.