What is an End-of-Life Doula?

Most of us when we hear the word “Doula” think of pregnancy and birth or home birth – that’s if we have heard of it at all!    Emerging here in Australia is a role, well established in other parts of the world – it is an End of Life Doula, (sometimes known as a “Death Doula”).

This role is one that will likely get a lot more support from Western Medics.  This is because an “End of Life Doula” makes a lot of sense and does not pose as many potential risks as a birth Doula. 

The objective of an “End of Life Doula” is to advocate for a client and those close to them and to work with them to have their wishes and preferences known and communicated, thereby easing their path to death, and supporting those who care for them both approaching and after death.  Does the client know what to expect and what all their options are?  Are they fully informed to choose what matters to them and is aligned with their values and wishes?

Death, dying, and even ageing can often be taboo topics in our culture, but End of Life Doulas are well versed in these subjects and have an intimate knowledge of the sorts of things which need to be attended to prior to the big event, as well as after, and thus can help clients and those close to them navigate this.  They assist families to have difficult discussions and process difficult emotions.  Therefore, sometimes they are hired by the dying person and sometimes, they are hired by their families or friends.

The End-of-Life Doula, like a Birth Doula, is not medically or clinically trained and does not need to be for this position; for this reason, they use the term ‘client’ instead of ‘patient’.   The role is broad and depends a lot on what the client needs – there is a lot that an End-of-Life Doula can do. 

End of Life Doulas adopt a holistic approach and walk alongside families through the many stages of someone who is advancing in age and/or approaching the end of their life.  They provide an independent source of support and compassion to the person with a diagnosis and those close to them to explore their options.  They can provide access to education and resources and connection with support networks to provide the best end of life for those dying and those caring for them.

A client may need a shoulder to cry on, someone to accompany them to appointments, someone to plan the funeral, explain what to expect as their deterioration progresses, communicate with the family if they are far away or assist them with paperwork.  They can explain to clients and families the stages and processes of dying, what to expect, and how to recognise when the person is entering these stages.  They can discuss care options such as hospitals, hospices and dying at home.  They can help facilitate home care and equipment which will be needed if this is the preferred option as well as foreseeing limitations of this.  They can discuss Wills, Advanced Care Directives and Guardianship, although it does need to be remembered that they are not usually lawyers or equipped with legal training.

There is only a short list of things that an End-of-Life Doula does not do.  They do not recommend changes to treatment or medication; they do not diagnose; they do not administer medication and they do not give advice – instead they offer options and solutions so that the client can choose what aligns with their values.  This choice gives them back a level of control and capacity that may have been slipping away or taken from them.  Providing a client’s wishes are legal, safe and possible, an End-of-Life Doula can work with them towards their preferred choices.

Each Doula varies in the type of service that they can offer, so before engaging in the services of a doula, it is recommended that people with a diagnosis and their families have a list of questions that are important to them.  Examples might include.

•   Can you help with an Advanced Care Directive?

•   Can you help my family after I have passed? There are going to be practical things needed if someone wants to pass at home such as cooling equipment, transport to the funeral home, arranging the funeral.  Has the Doula done this before?

• Are there any services you will not be able to provide?

•   Do you support people who are considering voluntary assisted dying?

•   End of Life Doulas should work closely with palliative care services, community nurses and General Practitioners’ so it is worth asking what experience they have with these people and how they usually like to work together.

•   What training have you undertaken?

•   Do you have any recommendations, or can I speak to a family that you have worked with before?

• What happens if I change my mind?

•   On what basis do you charge? (There are also possibilities of the doula being paid through My Aged Care packages or NDIS where criteria are met)

•   Palliative Care Australia has published a list of recommended questions to ask an End-of-Life Doula.

End of Life Doulas work alongside health professionals and support workers, carers, pastoral carers, counsellors and other unregistered workers who together aim to provide the highest standards of care to people who need it.

Because this industry is new, its regulation is gradually developing.  Holistic End of Life and Deathcare Australia Inc. (HELD) is the peak body for end-of-life doulas in Australia.  HELD has its own Code of Conduct for its members in addition to the National Code of Conduct for non-registered health care workers.  There is also a comprehensive complaint reporting process.

Preparing the Way provides certificated and accredited training for end-of-life doulas across Australia and New Zealand.  They have developed the world’s first and only Certificate IV in End-of-Life Doula Services which is now subsidised by the NSW Smart and Skilled funding.  This adds further recognition to the importance of the End-of-Life Doula role as a part of the care teams for the ageing, dying and those living with life limiting conditions.

REFERENCES

1.      Preparing the Way – https://preparingtheway.com.au/

To find and End of Life Doula, https://preparingtheway.com.au/find-an-end-of-life-doula/

2.      Palliative Care Australia - https://palliativecare.org.au/resource/end-of-life-doulas-and-palliative-care/

3.      Holistic End of Life and Deathcare Australia Inc. (HELD) – https://held.org.au/