‘Dying is not an act you can easily undertake yourself. If being born amid those who will love you is the first best hope of life, dying within a community is the last’
(Toolis, 2017:60)
Most people have heard of a birth doula and understand the concept of a coach or supporter during childbirth, particularly if the woman is labouring for the first time. The end-of-life doula works in exactly the same way for a person who is dying (Moss and Johnston, 2019). They are there as an informed companion, accompanying, witnessing and being present with the dying person. The doula role is founded on knowing the dying person well and being able to help them to express their needs about their own dying, whether they are emotional, practical, physical or spiritual (Fersko-Weiss, 2017; Kellehear, 2021). End-of-life doulas are facilitative and not prescriptive, keeping the dying person and the people that they love at the centre of the death experience.
An end-of-life doula can support someone for any amount of time and at any stage of illness. It might be that, on receiving a terminal diagnosis, the presence of an end-of-life doula can help with planning and preparation, including funeral plans. On the other hand, doula support can also be ‘smaller’ and more domestic, carrying out tasks that make life easier for the dying person, yet being a constant, flexible presence. End-of-life doulas work in homes and care homes, in hospitals and hospices.
A term that sums up the end-of-life doula role is ‘amicus mortis’-being a friend in death (Rawlings et al, 2019). A friend in death acknowledges that we are all united by dying; we will all experience it and are beholden to it, yet conversely our deaths are as unique as we are, and we deserve the deaths we want and choose (Gawande, 2015). Knowing that an end-of-life doula is by their side and no topic concerning death is ‘off limits’ allows peace of mind for the person who is dying. An end-of-life doula is a source of support alongside friends and carers who might be struggling with their own thoughts of losing their loved one, enabling and empowering families to live fully, right until the end.
Working with health professionals
End-of-life doulas work in collaboration with health professionals and alongside services provided by hospitals, hospices, GP surgeries and palliative care teams. Doulas have the potential to support the dying in a non-clinical role in the context of an ageing population and an over-stretched healthcare system, facilitating joined-up care where positive patient outcomes are achieved. By offering personalised care, collaborating and improving patient experience at the end of life, the work of an end-of-life doula is, therefore, aligned with NHS England's End of Life Care Programme and Ambitions framework (National Partnership for Palliative and End of Life Care, 2015).
End-of-life doula work varies, but a recent example of impact includes working alongside hospital discharge teams to enable patients to return home when no care package could be put in place at short notice. By providing end-of-life support, doulas enabled such individuals to die in their preferred place with their families present, and this, in turn, released hospital beds. Similarly, end-of-life doulas have been able to actively navigate the system, highlight the need for pain management, anticipate the acquisition of just-in-case medication and have early conversations about the need for referrals, for example, into hospice care. Doulas also know their local patch well and can, therefore, work in a connected way with other health professionals and service providers.
End-of-life doulas have been described as ‘adding a missing layer … (being) the nonmedical resources which could help bring death back home’ (Elliott, 2011; 30) Fundamentally, as can be seen from the examples above, the integral position of the doula as close to the person who is dying and in contact with their family and friends while having a deep understanding of the end-of-life system enables joined-up working with health professionals and has the potential to identify any gaps in service provision, enabling each individual to be at the centre of their own death, which they have planned and feel ownership of.
Working with community nurses
For a community nurse, working with a family or individual who has a doula involved in their care can have specific benefits, particularly if the patient is potentially moving between home and hospice or hospital settings. A recent example of this is when a terminally ill person had their advance statement (AS) and advance decision to refuse treatment (ADRT) put in place by their end-of-life doula, which expressed their decision to die at home. After a fall, their health declined rapidly and the choice had to be made whether home was now the appropriate place of care, over the Easter Bank Holiday Weekend 2020, in the context of COVID-19. A hospital or nursing home admission, with the worry of COVID-19 infection, was the only option until the community nurse and the end-of-life doula had a conversation. Finding out that the AS/ADRT was already in place, the community nurse said: ‘That's wonderful. You don't realise how difficult it is to have a conversation in an emergency like this’. With their support, the patient was able to remain at home with a hospital bed, commode, care package and night sitters.
Talking about dying
End-of-life doulas open up opportunities and hold space for conversations about death and dying. This can be done in a number of ways, for example, by working with the general public at death cafes, Dying Matters Awareness Week events and hospice open days, when supporting local death-positive groups or in collaboration with chaplaincy teams. Doulas often like to reflect on how understanding and planning for death can actually be enriching and encourage them to live fully. Hermione Elliott, founder of ‘Living Well, Dying Well’, spoke about bringing death back into the hands of citizens and reclaiming our confidence in our own knowledge and understanding of dying (Elliott, 2011; BBC Radio 4, 2021). Doulas recognise death literacy as a life skill and encourage fluency and openness around death and dying at every stage of life, modelling that it is perfectly acceptable to speak freely and supporting others to do so.
Kathryn Mannix discussed how important it is to narrate the progression of dying and translate it for those watching their family member die (Mannix, 2019). Identifying some of the expected stages, sights, sounds, smells and textures of death helps explain the process and makes it less likely that traumatic images remain after the person has died. It is Mannix's opinion that: ‘we have lost the rich wisdom of dying’ and, end-of-life doulas can do their part to reinstate that citizen wisdom which once would have been passed down and shared within a community (Mannix, 2019).
Supporting someone who is dying
End-of-life doulas support people at a very specific time in their life but their support must acknowledge the whole person and their world view (Paley-Ellison and Weingast, 2016). This means adapting their practice and support to suit the individual and their needs. The doula role for one family or individual might look very different from that for another. Someone might request practical support, in which case, an end-of-life doula who has been trained in advance care planning could guide them through all the decisions that are needed to be made after receiving a terminal diagnosis. Practical doula support could also be more about co-ordination and organisation, as mentioned above, being the point of contact for other services and health professionals or just helping to keep family life going.
Emotional support could be as simple as giving the dying person time and space to talk, without judgement or interruption, about their life, fears and concerns. Spiritual support can be provided through legacy and memory work, art, sharing photos, music, poetry, writing and literature, taking into account the specific religious and cultural needs of the person. Spiritual support can continue after death, with the end-of-life doula caring for the body and assisting with the funeral arrangements. Additionally, end-of-life doulas can be invaluable to those without family or friends or those whose families are abroad or estranged.
Whom do end-of-life doulas help?
The simple answer is that end-of-life doulas can help anyone. Movements such as Compassionate Neighbours (2021) and Compassionate Communities (2021) stress the importance of people working together to support the frail, the dying, the bereaved and the vulnerable. End-of-life doulas are reaching and working with those who are homeless or in hard-pressed circumstances, ex-offenders and people with mental health challenges or learning disabilities. The essence of the end-of-life doula role is expressed in these contexts: advocating and enabling choice to be expressed in a truly person-centred way.
End-of-life doula training and certification
Training to become an end-of-life doula takes 18 months to 2 years and is externally certified. End of Life Doula UK has over 200 members and is growing, and all members are mentored. Practising doulas are insured and DBS checked. Doulas operate individually in their own communities while being part of a defined code of practice within regional groups, with standards and professional guidelines set by the organisation (End of Life Doula UK, 2021).
Testimonials
The involvement of a doula at the end of someone's life can best be expressed through the thoughts and feelings of the families. What the following quotes illustrate is the ability of each doula to recognise and prioritise the specific and individual needs of clients and their families in the dying process:
‘I sought out (the end-of-life doula)'s assistance when my father was nearing end of life after being admitted to hospital with late-stage dementia and acutely altered mental state. It was a very confusing time for myself and my mother. The comprehensiveness of the information and the sympathetic way that (the end-of-life doula) provided it was hugely refreshing for all of us involved and gave us a lot more clarity. Had it not been for this assistance, the process would have been significantly more confusing and upsetting for all of us. Thankfully we were prepared for it and the process was far less daunting than it would have been.’
‘I needed to get my affairs in order because I am a single woman who lives on her own and don't want to leave a mess for others to sort out. (The end-of-life doula) helped me do my Advance Decision to Refuse Treatment and my Advance Statement. She made it simple and a pleasure to do.’
‘Mum was in a Care Home. She was frightened of dying. She needed someone to talk to about her hopes and fears before she died. Two doulas were made available to be with her night and day to soothe and comfort her and she went peacefully. I am most grateful because without them I am sure she would have died in distress.’
‘(The end-of-life doula) was there for the hardest of times from when K was told that there was no more treatment she could be given, during the last weeks making cups of tea, doing housework, relieving me to sit with K right through to helping me plan K's funeral. I call (the end-of-life doula) every now and then as we went through so much together to make K's dying as good as it could be.’
‘I was on my knees and needed respite from the care of my partner who had motor neurone disease. (The end-of-life doula) stepped in at short notice to cover me and she also talked to the GP to get additional care so I could cope and spend good quality time with my partner.’
Conclusion
End-of-life doulas are at the heart of important national conversations, such as DNACPR decisions or the management of digital legacy. Doulas also encourage all those who they are in contact with of their inherent abilities, empowering them to feel courageous in the face of losing someone that they love or in the context of their own mortality, emboldening them that a person-centred experience of death is possible for all.
KEY POINTS
- End-of-life doulas act as an informed companion, accompanying, witnessing and being present with the dying person. They support the dying individual practically, emotionally and spiritually
- End-of-lie doulas work with individuals, families and other health professionals in supporting people at the end of life
- The doula role adapts to the needs of the terminally ill person
- End-of-life doulas encourage conversations about death and dying and support the bereaved after their loved one has died
CPD REFLECTIVE QUESTIONS
- How could working with an end-of-life doula benefit community nursing teams?
- What palliative and end-of-life care functions could a doula perform or support community nurses with?
- How do doulas adapt their role to suit the needs of the dying individual?