Why should I? To plan or not to plan for your end of life experience

By Helen Juffs

End of Life Doula shares her experiences on the outlook many have when it comes to talking about death. With the current situation, it is making many think ahead and start being open with others about what will happen when that day does arrive.

Have you ever tried to stop someone telling you about their birth, wedding or big birthday plans? We just love to plan or talk about significant events in our lives – our progeny, our coming of age, our coming outs, our couplings, our midlife crises, our retirements – but to talk about or plan for our dying is much less popular.  Making a will or investing in a funeral plan are fairly common things but these are primarily financial plans, they don’t require investment in the deeper emotional sharing of other end of life plans.

I come from a family unafraid of talking about death: my Grandma was the person in the village who sat with the dying; my mother nursed my dying middle-aged father at home who refused life-prolonging medical intervention.  I have personally experienced deaths by suicide, sudden deaths, prolonged deaths, home deaths, hospital deaths – good and bad dying, good and bad grieving.

What I have learnt is death isn’t just about the individual.  I often hear ‘I’ll be dead I won’t care – you decide’.  It is instead a social process.  Dying is like carefully placing or throwing a pebble in a pond – the ripples caused have far-reaching implications.  Waves of unresolved grief flood the wider community placing pressure not only on family and friends but on health and social services and the economy.   The more people are enabled to share and record their wishes with their families, friends and wider communities the gentler the waves.

My experience and own mid-life rite of passage led me to retrain as an End of Life Doula*.  Doulas provide non-medical, emotional, physical, and spiritual support for people and their networks at the end of life.

Healthy living and medical practice have advanced to such an extent we no longer accept ageing and dying as a usual part of life – we hide it away and we hide from it.  Covid-19 has forced death back in to focus.  Every day we are given the death toll and shown images of ICU wards.  Death has become something to be fought against, something medicine can cure given enough supplies.  In an effort to increase efficiency and relieve pressure on health services GPS have been charged with ‘having the difficult conversation’, establishing whether people chose ‘Do Not Resuscitate’.  In a crisis, these efforts to plan have been clumsily reported and conversations rushed.

Covid-19 has not just focused on death, it has also changed how we live, how we socialise and how we fulfil our usual rituals.  As a society, we are not just grieving for the dead but for our freedom, our livelihoods, our culture.  All these factors affect how we plan our end of life but cannot be fitted into a GP consultation.

You will find there is a lot of jargon around planning for your end of life experience which can be difficult to navigate for medical staff let alone the general public – Advanced Care Plan, Advance Statement, Living Will, Statement of Values, Advance Decision, Advance Directive (Scotland), ADRT, DNR, DNCPR ACP, ReSPECT form, not to mention Wills and Lasting Power of Attorney (LPA).  There is a multitude of articles and websites which you can consult.  If talking about death really is too difficult for you there are many user-friendly online options (see links below).  But think about using a doula, here’s why:

‘I was really struggling with doing my own plan even though my husband has had major health issues, but actually sitting down with a doula and talking about it has made me feel like I have a choice, a little more control’

‘Although I had already given much thought to the end of life matters as I have a number of health issues, and I am 90 years old, I have added an extra dimension by sharing this with my Doula, Helen. We have explored and consolidated thoughts and feelings.  She has helped clarify ideas in my Living Will [Advance Decision and Statement] and has helped me complete a ReSPECT form before accompanying me to my Doctors to register. This is very reassuring, and the contents of the documents can be adapted if my views or needs change. Talking to Helen has really helped me avoid having to use my doctor for a listening ear. I identify as Lesbian which adds another layer of anxiety if I have to go into a medical facility, Helen relates to this whole situation with sensitivity and understanding.”

We can help you compile an end of life plan that will be clear and concise and help those around you make decisions they are confident you would agree with.  The plan is a gift to them if you can’t make your own decisions.  The plan will include documents which are accepted by all the different people who may be involved at the end of life.  This is particularly important as there is no standardised form for an end of life plan or even for the legally binding Advance Decision.

We bring time, experience, knowledge, wisdom and humour to enable conversations about how you live the end of your life, not just how you die.  We will look at your likes and dislikes, your family dynamics, your view of medical interventions, as well as funeral arrangements.

As end of life doulas, we want to encourage you to take time, to have open and honest conversations where you look to balance your medical, social and cultural needs.  Remember this is just a plan, you can change your mind if your circumstances change – you may have to change your mind.  A plan won’t prevent difficult decisions, it won’t prevent death, and it won’t take away the pain of grief but it will give you and your community comfort – so there is no need to be scared of planning, enjoy it.

*Doula is a Greek word meaning ‘person of service’ or ‘person with experience’.  Other organisations use the terms ‘death doula’ and ‘soul midwife’