‘Death doulas’ seek national accreditation
Australia’s “death doulas” are taking the first steps towards becoming an incorporated national body and hope to gain accreditation over the next year, as they seek an established role in the palliative care process.
Australia’s “death doulas” are taking the first steps towards becoming an incorporated national body and hope to gain accreditation over the next year, as they seek an established role in the palliative care process.
A recent Australian report in the current issue of the journal Health and Social Care in the Community found that the death doula is emerging as a new role in the end-of-life care space.
The death doula has been described as an “eldest daughter”, or a “paraprofessional” who can fill a gap in the often highly medicalised palliative process as a guide, support, companion and advocate for the dying person and their carers.
Current health and social care systems don’t always meet the needs of the dying in their communities, the researchers found, and as a result “patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care”.
However the research team, led by Deborah Rawlings of the College of Nursing and Health Services Flinders University, found a lack of information when it came to issues like specific services provided by doulas, funding, training, licensing and where they fit in with health services.
Rawlings says at present death doulas may represent a new direction for personalised care, an adjunct to existing services or an unregulated form of care provision that’s able to operate without oversight.
“I think it’s a great role but I think there’s still a lot of inquiry to be made,” she told Community Care Review. “There’s still so much more work to be done to see how this fits into end of life care.”
‘Bridging a gap’
Helen Callanan leads the death doula course for the Australia Doula College, one of a handful organisations and individuals that provide training and advocacy.
However she prefers to refer to herself as an “end-of-life doula”, saying death is a moment, but end-of life-is a journey with many stages from diagnosis, to death and bereavement.
The college offers two courses. A one day course covers topics including preparing for death and planning for what happens afterwards, care of the living, the role of a doula and general “death literacy”.
Participants can choose to follow up with a three day course which drills down deeper and considers issues like pain and suffering as well as how to build a business as a doula. The course is non-medical and no prior experience is required.
Callanan says demand for the courses is huge, with “several hundred people a year” doing the one-day workshop and about half continuing on to the longer course. Some of these may be hoping to establish a career as a doula while others may simply want to care for someone in their family.
Once training is completed participants can apply to become members of the Australian Doula College, which offers an agency to help them find work and a fee structure.
Seeking a unified voice
Callanan says while the end-of-life doula role is well established in the UK, US and Canada it is continuing to emerge in Australia and “we’re starting to have conversations with aged care facilities and hospitals”.
“Doulas bridge a gap in care provision and provide continuity of care because they can be there through diagnosis all the way through, right up to and after bereavement,” she told Community Care Review.
“We need the medical people along the way, they have to be part of the journey. But when treatment stops they drop off.
“You need to have someone as a companion, as a doula you can say ‘I’ve got your back, I’m not going to lead or direct or advise. I’m going to look at options with you and support you with the fulfilment of yours’.”
Callanan says unlike birth doulas there is currently no certified training for death doulas, but they hope to gain accreditation from the Australian Skills Quality Agency in 2019.
A meeting of Australian doula organisations and other stakeholders will also be held over the next month to discuss forming an incorporated national association.
“Doulas really need to have a unified voice,” Callanan says. “We have developed and are delivering professional training and that’s why we’re looking to get accredited – so we get taken seriously and get a seat at the table along with palliative care, because we’re all on the one team and together we can do a better job”.
Palliative care peak not convinced
A spokesperson Palliative Care Australia, the nation’s peak palliative care organisation, wasn’t immediately available to comment.
However, CEO of Palliative Care South East in Victoria Molly Carlisle has previously expressed concern about the emergence of death doulas.
In a 2016 article posted on the professional social networking site LinkedIn.com Ms Carlisle questioned “this influx of people, charging a fee to care for people at the end of their life, who have no qualifications (apart from weekend workshops conducted by other people who have no qualifications)”, saying they could pose a risk to themselves and others.
“People who have undertaken a two or three day workshop can not provide “care and guidance” for dying people and their families,” she wrote.
“It takes years of academic training, clinical practice underpinned by mentoring and supervision to holistically accompany a dying person and their family through the challenges of confronting the end of their life.”
Rawlings described the move towards accreditation as a positive step.
She is currently following up her research with a survey of 90 Australian death doulas, including 20 interviews, and the data will be analysed and hopefully published next year.
Many qualified social workers employed in health/palliative care provide similar interventions with patients and families facilitating discussions regarding end of life and funeral processes using a social model of care as a way to educate and empower people to ask for what they want.
I wonder if the prospective doulas will know or have a rough idea of the type of work that Palliative Care entails.
I do not believe that a one weekend workshop or a three day course will capacitate a person to work in that area. Why?
Because palliative care involves careful, professional, caring and complex work. It requires dealing not only with the feelings, emotions, and needs of the dying person but also with the multiple requirements of the family system. It involves clear understanding and respect for the practice of doctors, nurses and allied health attending to the medical condition of the dying person and/or having to liaise with legal professionals when the need arises if issues such as wills, Powers of Attorney or Enduring Guardianship come to the picture to name a few examples.
Apparently doulas will be “paraprofessionals” – a job title given to persons in various occupational fields, such as education, healthcare, engineering, and law, who are trained to assist professionals -. This means that if doulas want to be of assistance to professionals, they will need to know what the various professionals want in a coordinated fashion. Respecting, understanding, liaising and informing not only the professionals but all the involved in the process of dying, such as patient, family, social network, services, etc.
Doulas will need to have extensive and practical knowledge about services, different types of equipment required to assist the dying person, understanding of his or her rights as individuals and knowledge of family dynamics and social expectations and traditions, to say the least. After all, we do not die in a vacuum, quite the opposite, death and dying affects not only the dying person but as I said before the various interrelated systems.
To think that all of this can be absorbed in a three day course, I think can be not only over optimistic but also dangerous because the prospective doula will not be prepared to work ethically and competently with all the issues at hand and with people in their most vulnerable point of existence.
If society requires paraprofessionals, doulas, fine, but let’s make sure that they will have the required training, understanding, competence and knowledge to do a proper job. Perhaps to have some studies, at minimum a welfare certificate will be recommended. After that, a period of training and supervision, a time to put into practice their acquired knowledge will be a safeguard to society.
If the prospective doula has as a pre requisite training in the areas of welfare or nursing for example, thing will be different, I believe.
Well said Ed and I agree with you, Palliative care is a specialised field . May I even suggest in the first instance a bachelor of nursing degree, followed by a post graduate degree in a certificate or diploma in palliative care and yes social work, psychology and law degree. Then lets think about letting death doulas into our realm of nuring, dying and death.
I don’t think you need to have a fistful of nursing degrees and post grad degrees etc to be an effective end of life doula.
I do think some nursing training would be helpful. I am a retired EN and recently was with my dad at the end of his life.
I advocated for him and was able to provide some comfort and that meant sitting by his bedside for many hours something nursing staff were understandably unable to do.
It was at this time I thought of the many people over the years of my career that could have benefitted from a doula.
Death and Dying is a taboo subject in the West and I think doulas would go a long way in dissipating many fears that have become part of our culture. I am seriously considering trying to become accredited as an End of Life Doula.
I agree with Linda.
I also had a career as an EN and have nursed both my parents to the end; as well as lots of palliative care patients over the years.
I’m confident my nursing experience and my life experience have given me skills useful in supporting the dying.
Sure, we would need further study – but a degree?
Accreditation – yes, I agree with that, definitely.
In my experience, Social Workers are over stretched & nurses are run off their aching feet.
Wouldn’t it be nice if we could all work together?
As an EN I trained at Caritas Christi where in one week I had 67 people die. Only a year working in that environment gave me so much insight into different cultures and dying. Working in Aged Care for 35 years I was nursed so many people thru the day and night who have passed away in my arms. I think I have earned my stripes. I have gone and done a diploma in Health Counselling at Monash Hospital and I have done cert 1v and diploma in Pastoral Care along with two advanced diplomas and another diploma I also am a qualified D/T. No degree but I think I do well. Not always a degree.
Death doulas have a place in caring for both the person at end of life as well as the family. Doulas don’t necessarily need to know the whole context of nursing and other technical requirements of caring for end-of-life. Doulas present a return to community, to caring for and by a person who will spend long hours with a person where family may not be available or even not adequate to meet arduous hospital hours. I support a return to the social care of people with recognition that such people bring some specialised knowledge from their care experiences enhanced by some understanding of the role of a doula. Accreditation has a place too.
I’m a death doula. I’ve trained with several death doula schools, volunteering in acute and palliative hospital . I am trained and continue to train in acd, VAD and mtdm. I don’t do medical roles, I assist. Please don’t dismiss genuinely skilled people who have a strong calling to this work, by spending years on studying things that may not be relevant. Yes, just as there are Dr’s, nurses etc who should not be working in the medical field, there will be some who would be better off not working as a death doula. I agree there is benefit for the person at eol to know they are with someone they can trust to have the appropriate skills. We will hear of many ‘trained’ people in the current Royal commission. This may well roll over to death doulas. Don’t throw out the baby with the bath water. Absolutely test and confirm,
I have unfortunately been in close proximity to death and dying as an AIN and I was not able to help in easing their suffering. A gentle touch an encouraging word from someone would have made their passing easier
It is an interseting read and l cant help but feel that there needs to be some letting go of ego
. The whole idea of death Doula is to give support to a family, you or a person who needs it . We are not trying to make a clinical diagnosis and we understand the importance of palliative care but when a person asks for extra support- can the already overworked nurses provide it ?
Can they focus solely on one patient only ? I agree there needs to be some level of regulation but to say we have to have nursing degrees etc is not always the answer . I have been a Doula for 16 years and l understand death very well and l a,so understand the day to day life things.
Currently where l am we are trying to establish a transition house for those who do not want to die in clinical surroundings . It will be a place where the family can come and be with their loved one in a purpose built house. Many cultures have Doulas and many people have a calling for it . Training is always good but l resent having to pay for courses that run over a weekend and prepares you for sweet FA. That l do not agree with . I update my legal knowledge , l enrol I healing and care classes, l talk to funeral directors and l keep up with what people want .
Surely at the end of the day – it is about making that transition into death as painless and as peaceful as possible . I have nursed people who had end of life care at home and little medical assistance except for end of life certified. It was what they wanted and surely that is the whole point . Surely we should be working together ?