Dying is Everyone’s Outcome
Recently the Irish Hospice Foundation asked Irish people, in a survey, what their deepest wishes are with relation to the dying. A team questioned over 3,000 people and reported the following responses, reflecting the following needs and hopes;
- Death is talked about and not in hidden away.
- I am supported to stay in control of my own decisions.
- My dignity is respected and maintained to the end of my life and after my death.
- I can get information to understand what is happening to me.
- I can prepare for what lies ahead.
- I can die, surrounded by people I love, in a calm and comfortable place, in my home if at all possible.
- I, and the people who care for me, can get the practical services needed.
- That people understand grief and do not avoid thinking of talking about it.
- Family and friends are supported during a loved one’s illness or after death.
- People get space and time to grieve, talk and remember.
Getting to the point where we can start to collaboratively wonder about death, our fears and our imaginings, requires recognising that Death is common ground! No matter our gender, culture, orientation, or desires, everyone shares this inevitable ending.
Death Doula Role
A Death Doula is similar to a Birth Midwife (Birth Doula) but acts in the service of the opposite end of the life spectrum, upholding the validity of dying as a transitory threshold. Instead of assisting on the entrance of a human being into the World, a Death Doula supports the departure or dying process by acting as a companion to those affected. This includes encouraging explorations into a person’s personal story and relationship to dying, and helping a person shape their perspective and ideas on what end of life means to them. This includes creating a narrative around that relationship and supporting its overall investigation.
A Death Doula, End of Life Companion or End of Life Midwife are all the same thing – just different terms or labels for the same role.
This role can involve some of the following themes;
- Companionship (to all those affected, family and friends included)
- Preparing end of life wishes
- Family support
- Anxiety relief techniques
- Wonderings on grief and bereavement support
- Considerations on Spirit and perception of the Afterlife
An End of Life companion (Death Doula) can assist you to share your thoughts around dying in a way that is supportive, both to yourself, and your friends & family. Often, for those of us approaching this transition, or at least, starting to allow the theme of Death to become important (see Dead Good Cake and a Chat), talking to someone other than family or friends can allow for an authentic investigation of how to create a roadmap for your ending. This framework can be done at any stage of life. You do not need to wait until you are dying to prepare an End of Life Plan. Some people do, but it can be easier to engage with the process while you are still energetic, well and healthy. In the book A Beginner´s Guide to the End author BJ Miller references that, next to birth, death is one of our most profound experiences of our life! Shouldn’t we prepare for it with as much attention as we do birth? Can we not in fact use what it can teach us in order to live more vibrantly?
A Death Doula (or End Of Life Companion) can assist you to design a framework for your goals of care and how you might make the kind of preparations that will allow a more conscious departure. Death as a subject is not easy and is not always painless. Sometimes the theme is unavoidable because of your current timeline. A Doula can encourage you to wonder about how you might like your end of life to look like, supporting you to create more time in order to listen to yourself about the priorities that matter to you. For example,
- What kind of treatment might suit you if you are unwell?
- Have you thought through all the logistics?
- How do you hope to be remembered?
- Where would you like to lie-rest?
- Have you ever considered creating a will?
- Is it time to de-clutter or tidy up any unwanted uncompleted stories?
- Is it time to label special things that you wish people to inherit?
These goals will change over time, but that depends on the schedule and the personal history. It is a very individualistic thing, but having a companion or someone to emotionally support you in its design can be comforting. It is a big topic, and not everyone can face into it alone. The vast majority of people find it difficult to source a neutral friend or family member who is able or willing enough to engage in this practical and crucial challenge. Some of our dearest friends might even find the topic morbid!
Ideally, Death and Dying should be core themes presented during our schooling years, to assist us to adapt to inevitable ending and reduce the resistances we have created. We once were in tune with Death. It was widely discussed. Communities naturally had wisdom and rituals to capture the essence of this passage. Most people saw death often enough to recognise its patterns, observed it as part of life, & even children were familiar with the sequences of the death-bed. That rich wisdom was lost in the 2nd half of the 20th century. Cities grew. Better health care, new treatments and other developments in the medical industry triggered the postponement of dying, increasing life expectancy which now sees the sickest people being brought into hospital or sent to care-homes instead of waiting at home to die.
What a Death Doula (or End of Life Companion) does is encourages you to free up as much Life as possible by dealing with the crucial aspect of Dying while you still can. It about coming to terms with our limitations and acknowledging life transitions. People who have completed this process report feeling more freedom and less burdened. Hidden in our psyche are fears about this theme, reflected in some of the following more modern terms used to describe Death – lost the fight, cashed in their chips, kicked the bucket, are a few.
The aspect of shock
Receiving bad news of any form can have an instant effect on your body and cause your flight-or-fight response to kick in quickly. Your adrenaline may start pumping and your mind may begin to race to several worst-case scenarios in seconds. Furthermore, you may need to manage all the consequences that come with the bad news paying bills, doctors appointments, calling work to take time off or informing friends and family as well as coping with the way the news affects you both physically and mentally.
It can be so daunting to receive news that we are unwell that often things are left unsaid when attempting to communicate with loved ones about possible outcomes, especially if you have only recently received a diagnosis. These conversations can backfire when we are frightened. The best outcome is to wait and take your time to allow the shock to disperse. You might need support in managing this, and it could take a few days, weeks or months. Each person responds differently. A Doula can assist you to facilitate dialogue with those who care about you, so you are not silenced by their vulnerability or resistance to end of life conversations.
Other Supportive Elements of the Death Doula Role
A Doula can act as a support to ANYONE who is directly affected by a loved one who is dying. Acting as a support to a family or a group of friends can help everyone understand the impact the loss is having. It can also assist with the cohesion of a group of people who are struggling to know how to operate a system of care. Each person has their own emotional response to the situation and having a neutral coordinator can take the pressure off those who feel they are in the firing line of unconscious projections, like anger or resentment, of the other members of the group or family. We all have a history and at times, when we are needing to create a timetable of support, old storylines can get in the way. If you feel you could benefit from an external supportive person, a Doula can take on this role with careful negotiation. Here are some areas a Doula can offer support around:
• Understanding the medical model, the system as it is
• Legalities surrounding death, care of the dead, alternative practices and funeral options (including non religious approaches)
• The stages of “end of life” – before, during and after death
• Listening to the needs of the person who is dying, advocating for their wishes to be fulfilled
• The importance of creating peaceful environment
• The importance of looking at the family constellation within which this death is happening
If you are considering engaging a Death Doula in a contract remember it is O.K. to have concerns about the bond that will be formed between you and your potential companion. This is not therapy, although, in my case, I am a trained Psychotherapist, however in this role I shape the client relationship differently. The model in use is based on the Red Tent-Sacred Circle CIC guidelines, which focuses on a non-directive approach, recognising the innate internal wisdom each person has with respect to their own mortality. It encourages making space for conversation in a positive way that gives the client full autonomy. Coming to terms with guiding someone through their own set of principles to complete an end-of-life plan takes loving support, and finding the right personality fit is therefore very important when choosing a companion.
I can assist you in finding the right match from a beautiful group of caring people who are trained as EOL companions here in Ireland. This community of Doulas will offer a wide range supportive and individual resources, with dffierent skills and backgrounds. www.deathdoula.ie is a database (soon to launch) of wise and well versed people who have stepped forward to form a group of E.O.L midwives willing and confident to assist people to acknowledge the adjustments required to meet Death consciously.
Why am I committed to the role of Death Doula?
My journey towards this current stage, trainee Doula, began as part of a deeper investigation and questioning around my own mortality, the nature of existence and as an extension of personal grief work. During various non-ordinary-state experiences I came to understand the cycle of life in a new way and began to interpret Death differently. Through that process I understood that I needed to use tools to release unacknowledged losses in my system. Cut past the narrative, one of the things I naturally began to do was Lament. Through divine law I met people who appreciated the art-form and I started on a path of collaborating in a restoration project focused on the tradition of Keening. Through the development of this work, and the creative process of developing a framework for Lament workshops I met people who were working in their communities in different roles related to dying –Midwifes, Celebrants and Doulas. I began to understand the potential for attending to our own story of death and grief in a new way. I met people who work to bring death back where it belongs; in the hands and hearts of loved ones, in the home and the community. I saw this involves love and connection as aspects of caring for the dying and realised the massive gaps we have in our mainstream care systems. Recent restrictions have impacted this community´s approach but collectively we are doing our best to adapt and support individuals during these challenging times to make decisions that reflect conscious care of self and others.
Within the overall structure of the community there´s a vast range of belief systems. By no means do our spiritual perspectives need to contribute to the work. Embedded in the system is a shared ethic or understanding that when assisting someone the focus of the role is around creating care protocols, consulting services, advocating for the client’s needs and making neutral suggestions and recommendations.
I am supported and supervised in my role as an EOL companion, which mirrors how I am supervised as a therapist, however these two roles are separate and are maintained by different governing bodies (associations) even though many aspects of how I work can overlap.
www.deathdoula.ie is due to be launched early 2021. There is an enquiry form available on there for now, while the website is being completed – here you can send through a request for contact. Equaly, if you feel you need the support of an End of Life companion you can email me on firstname.lastname@example.org or phone me- 086 4033349 and I will do all that I can to assist you to find the right person to support your journey.