How can an end of life doula help my family?
While doulas are becoming more well-known in the UK, they’re usually associated with the process of giving birth. Yet today there’s a growing band of end of life doulas, whose role it is to help people with life-limiting conditions and those they love to get the most out of the time they have left together. They also work with the frail, the elderly and those living with dementia.
Doulas put the person who is dying at the very centre of care. Their non-medical role is to preserve the quality of wellbeing, sense of identity and self-worth from the moment they are called upon, be it for months, weeks or days
As sympathetic companions (amicus mortis – friends in death), doulas understand about the numerous little acts and big conversations that are important at end of life, and share their knowledge and expertise with the whole family.
How can a doula help us?
Molly Taylor is an end of life doula working around the Surrey area. She explains that doulas provide a consistent but flexible presence, able to fill gaps and provide support practically, emotionally, and if desired, spiritually.
She points out that 100 years ago, everyone understood about death. ‘Babies were born at home and people died at home, often with the family receiving support from the whole community. Now death is hidden away, and not knowing what’s involved can make us fearful. Instead we get our knowledge about dying from over-dramatised soap operas.’
Molly continues: ‘Doulas can give people the confidence to know what is coming and make the decisions that are right for them.’ That’s important, because as Molly says, there is no ‘norm’ in dying – every end is unique.
Advance Care Planning
A key role for a doula is to educate and inform. During their conversations Molly says she will ask her clients if they understand all the choices before them.
Do they, for example, want continued intervention to prolong life? Or is a high quality of life now more important?
‘While medical science keeps people alive longer, the care is not necessarily so advanced. Many of us don’t want to keep going as long as possible if quality of life is really suffering,’ she says.
Asking and listening about what her client really wants means that Molly can, if requested, help them to put together and lodge Advance Planning for End of Life documents, stating a person’s wishes with regards what they want, what they don’t want, who they want to speak for them if they can no longer speak for themselves and what they would like to happen after death. The conversations can, for example, include Do Not Resuscitate orders and how they wish to be treated at the end of their lives.
A good end of life
The doula’s role is not just about how people want to die. Molly sees a key part of her role as drawing out the details of people’s preferences about how they want to live out their last days, and what will happen after they’re gone.
That could be anything as simple as noting that a person loathes ice-cream but loves jelly, and making sure a care home understands that.
At the same time she will ask questions that family might find it hard to do. What’s on the bucket list? Are there preferences for funeral songs? What sort of digital legacy will there be – Facebook, email, internet shopping accounts – and what will happen to them?
A doula will offer conversation about more spiritual thoughts as well if asked, such as whether there is an afterlife. ‘By looking at the spiritual side, we can help to create clarity and deal with any feelings of guilt,’ says Molly.
Doulas can play an important role in co-ordinating all the services and support that are available when a person is dying, so that the individual and those they love do not have the stress of making arrangements and organising support.
As well as health and social care there is so much else that can make life more enjoyable. Little treats like a head massage can make a huge difference to a day, but families may not know how or where to access them.
Doulas will support the family as well as the client, right through to dealing with the practical and emotional side of loss.
Who are doulas?
Doulas come from many walks of life – including but not exclusively teaching, nursing and charity work.
Molly is keen to point out that doulas undergo rigorous training and when practising are mentored and supervised. They are not, however, healthcare professionals nor counsellors. They do though work alongside health and social care teams, making sure that the person’s needs and wishes don’t fall through any gaps.
While the word “doula” is Greek for “women of service”, there are male doulas as well.
How does the relationship work?
You can contact a doula at any time to begin a relationship between the doula and the individual. Molly says sometimes she will meet someone and then not be reacquainted until they are much closer to the end of life. Sometimes she will become a constant companion, visiting every day and providing respite for the family.
It’s a confidential relationship. The doula will only pass on what has been discussed with the individuals if the client asks them to do so.
Doulas charge for their services, but every doula makes their own decisions about their fee. It might be an hourly visiting charge, plus travelling costs, for example. If they’re asked to carry out behind-the-scenes work, say on care provision facilities, funeral arrangements etc, or to fill in forms for an Advanced Care Plan, they will potentially charge for that separately.
How can I find out more?
Hospitals and hospices are becoming more aware of the valuable role that doulas can play, but you can find out more yourself.
End of Life Doula UK is a not-for-profit association providing information about the role of end of life doulas, and how to get in touch with one.
The Living Well Dying Well group provides more information about the role of doulas, their training, and courses for therapists and health practitioners.
Molly Taylor can be contacted via [email protected]
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Article written by Kathy Lawrence, editor of When They Get Older.
Image: Molly Taylor and her doula training group.