End of Life Doulas

End of Life Doulas

An informed companion to bring calm and provide support for the dying and their carers

How can end of life doulas nourish you?

An end of life doula assists people to arrange after-death care and experience a peaceful passage to death. They are also known as death doulas[1], end of life consultants, death coaches, death walkers[2], death midwives, soul midwives or transition guides. The role of end of life doulas may include continuous care through the stages of terminal diagnosis, deterioration, death and post-death grieving.   

An end of life doula offers non-clinical care, unlike palliative care[3] professionals who provide medical services. End of life doulas provide physical and spiritual support to the terminally ill and to those around them. Their role is to provide education and options, and work to “preserve the quality of life, wellbeing and self-worth[4]” of those who are dying. The end of life doula’s role is consistent with holistic hospice care[5] in that it may entail emotional support and practical support such as organising informal support systems, funeral arrangements, vigil planning[6], or arranging a will and power of attorney.

The end of life doula title originated in New York in 2000, when a volunteer program called "Doula to Accompany and Comfort" focused on pairing so-called "Doulas" with terminally ill people. The term doula, usually associated with a birth assistant, is derived from the Greek word 'doulé' meaning “woman who serves”.

In countries such as Oregon, USA, death doulas are required to be licensed by the Oregon Mortuary and Cemetery board[7]. Australia is working towards accredited end of life doula training and a centralised governing body to professionalise the services provided by an end of life doula. amidst calls for government regulation[8]

To ascertain an end of life doula’s suitability, it is advisable to enquire about[9] their experience, training, fees, whether they have a spiritual motivation and the scope of their duties. 

Benefits of end of life doulas

Dying is a crucial time that can be challenging and confronting for many. End of life doulas can offer support, information and coordination of care through the difficult process and fill in any gaps[10] in the dying client’s care. The end of life doula acts in accordance with the terminally ill patient’s wishes and needs. They are also there to educate and empower loved ones to care for the dying person and to fulfil their after-death wishes.

Surveys indicate that up to 70% of Australians want to die at home but only approximately 14% achieve this[11]. An end of life doula can help to facilitate a person’s desire to die at home by organising all essential aspects. 

End of life doulas can compassionately navigate the terminally ill and their loved ones through all the decisions around dying and death. This can create calm, improve communication, ease emotional suffering, forge deeper connections, help with legacy projects[12], finalise legal matters, eliminate regret and allow grieving. 

End of life doulas may assist in relieving issues related to:

Anxiety
Brain fog and clarity
Communication and self-expression
Concentration, focus and problem solving
Grief, bereavement and loss
Love and Relationships
Mood imbalances
Sadness
Stress and tension

What to expect from an end of life doula session

A end of life doula’s duties differ according to their expertise and the client’s requirements. The initial meeting with a end of life doula will establish if they can meet the client’s needs, whether it be in the home, hospice or residential facility. The end of life doula will identify what is personally, culturally and spiritually relevant[13] for the terminally ill person and their loved ones.

Sometimes an end of life doula addresses a single issue such as funeral arrangements but they generally assist in various areas over a period of time. The end of life doula may act on behalf of the client to enquire about possible arrangements and options, but should always honour their client’s beliefs, needs and wishes.

As clients are often confused in this new territory, an end of life doula can clarify all the decisions that need to be finalised with wisdom, delicacy and compassion. The end of life doula can also ease the carer’s load by taking on tasks[14] ranging from domestic duties to legal matters and providing companionship to the dying. They may also act as an advocate for the dying by liaising with medical care, funeral homes and other service providers.  They may even provide cooling beds[15], allowing the deceased’s body to remain at home prior to the funeral. 

As with any complementary practice, please consult your medical professional before consulting an end of life doula. If you have any concerns at all, also speak to your end of life doula, who will be happy to address these and evaluate whether it is a suitable option for you.

References

  1.  About End of Life Doulas | preparingtheway.com.au
  2. In Person Deathwalker Training | Natural Death Care Centre
  3. What is palliative care | Monash Lens
  4. End Of Life | ADC
  5. Principles of palliative care | International Association for Hospice & Palliative Care
  6. Your First End of Life Doula Vigil | INELDA International End of Life Doula Association
  7. Oregon Senate votes to regulate death industry | oregonlive.com
  8. What role do Death Doulas play in end‐of-life care? A systematic review | Health and Social Care in the Community
  9. 7 Questions to ask when hiring an End of Life / Death Doula | End of Life Doula Directory End of Life Doula Directory
  10. Demand for end-of-life doulas on the rise as palliative care need increases | ABC News
  11. What can we do to help Australians die the way they want to? | The Medical Journal of Australia
  12. Family Caregiving  Care at Home | AARP
  13. Learning to die – death doulas tell their stories | SBS
  14. What role do Death Doulas play in end‐of‐life care? A systematic review | Wiley Online Library
  15. Resources & Services Available | Natural Death Care Centre