End of life doulas respond to being excluded from the federal government’s new End of Life Pathway

From July 1, as part of the Australian government’s welcome aged care reforms, older people with a life expectancy of less than three months will have access to $25,000 worth of services to help them live and die at home.

The funding associated with this new End of Life Pathway can be used to engage a range of services including nursing, respite care, art therapy, acupuncture, social work, continence management, house cleaning, transport, etc. (There’s a long list of the permitted services here.)

Death doulas/end of life doulas/end of life consultants/death midwives/death walkers are not included on the services list. (Yes, lots of titles that mean the same thing.) The omission has been criticised within the sector, with proponents arguing that the inclusion of doulas in the End of Life Pathway should be “a no-brainer”.

The Pathway

Part of the new Support at Home program, the $25K End-of-Life Pathway is in addition to the palliative services provided by their state or territory. The funding is designed to better support older people at home, keeping them out of hospital. (Read more about the nuts and bolts of the Pathway in my blog here.)

Doulas a ‘no brainer’

Independent funeral director Rebecca Lyons is an end of life doula and a vocal opponent of the decision not to fund doula services. She said doulas are already readily retained by aged care providers, hospice services, and community-based service providers.

“It is a no brainer that EOL doulas play a pivotal role in the provision of good holistic end of life care for people in both institutions and in the community, but the government and medical silos seem for the most part, continually steadfast in their ignoring the value we add,” she said.

Doula trainer Helen Callanan and Chair of emerging lobby group HELD said that doulas “bridge the gaps between scheduled care visits, late-night worries, and the deeply personal questions that don’t fit into a clinical framework”. Their long list of roles can include:

• Offer companionship and good listening
• Advocating for a person’s wishes when they may no longer be able to speak
• Providing information about the many end of life choices a person has
• Facilitating legacy work and meaningful rituals 
• Helping families understand options and navigate complex decisions
• Bereavement support – helping pack things, sell things, etc.
• Supporting carers, family and friends
• Encourage advance care directive planning, enduring power of attorney, will preparation
• Ensuring a person’s cultural, spiritual, and other needs and preferences are met

Ms Callanan, doula and HELD vice-chair Shannon Beresford, and trainer and recruiter Dee Cookes are unified in their criticism of the decision not to allocate government funding to doulas.

“If the goal of this funding is to support more people to die well at home, it makes no sense to exclude the very practitioners trained to accompany people through this time and the many stages it encompasses. We’re talking about holistic, person-centred care.

“Why fund music therapy, counselling, or massage but not doulas, who are trained in all-of-life and end-of-life navigation?  Doulas who are death comfortable and death literate?”

Helen Callanan, Shannon Beresford, Dee Cookes

No public policy for end of life care

There has been considerable research into the benefits of holistic non-medical services in aged and end of life care, yet there is no associated public policy.

Rebecca Lyons said, “We have the Royal Commission into Aged Care Quality and Safety findings, the Australian Productivity Commission findings, the eight National Palliative Care Principles, the Grattan Institute findings, Australian Commission on Safety and Quality in Health Care… all of these have offered research or frameworks stating the important of non-medical services and yet none of these frameworks actually address what a holistic approach to end of life and death care looks like.”

A care system stretched to the limit

Denise Love, a death doula with 27 years of experience and a trainer in her field, has firsthand insight into the current aged care system.

Receiving in-home care herself, she’s witnessed the failings of the current overloaded system and thinks doulas could ease some of the strain.

“As an older person with health challenges, I experience a lack of availability of staff in both Sydney and country Victoria.

“Those who have visited me are mostly new arrivals to the country or only work during school hours. They have limited English and, whilst delightful carers, they have very few personal care skills. They don’t want to chat about personal things, nor can they support me emotionally.

“Doulas come with those skills and, as part of a person’s care team, can fill the gap,” said Ms Love.

“We need to be better understood in the health and aged care system.”

Current staffing challenges

Having worked as a palliative care nurse and doula for many years, Denise Love has been delivering community care for decades. She’s frustrated by the lack of available palliative care and allied health services for her clients.

“It can take weeks to find an allied health provider, and that means I’ve also had clients who were unable to go home to die.

“My dream is that we will integrate into the system just as social workers, occupational therapists and physios have done, with our own provider codes under a simple but sustainable Code of Practice for Doulas,” said Ms Love.

What now?

The Support at Home program will replace Home Care Packages from 1 July 2025. While the program’s End of Life Pathway funding is a positive development, a shortage of providers and staff to deliver the extra services may limit the number of people who can be supported to die well at home.

Doulas are indeed a no-brainer, but there might be a way to go. Helen Callanan said HELD is working with the Department of Health and Aged Care to advocate for Pathway inclusion and is preparing formal submissions and proposals to support pilot programs across community, aged, and palliative care.

What’s in a name?

There’s considerable work to be done if doulas are to be integrated into publicly-funded, in-home care and government policy. For now, the sector appears fragmented. To ensure competency, which is what the federal government will (and should) be looking for, the sector will need to provide evidence of proficiency standards. This will require a uniform approach from the sector.

Furthermore, raising awareness and building trust are key. Given the limited public understanding of end of life doula roles, and societal sensitivities surrounding death, it’s important to demonstrate the reliability and expertise of doulas in supporting individuals and their families at the most confronting and overwhelming time of their lives.

The first step in creating awareness will be consistency of language for death doula service offerings … or should that be end of life doula services … um… or end of life consultants … er… death walkers … death midwives? Perhaps the difficulty in agreeing on a consistent title foreshadows the challenges ahead for the sector.

Update and correction: An earlier version of this blog incorrectly stated that the End of Life Pathway funds are in addition to any federal home care package support the participant may already be receiving. The new Support at Home program will have eight classifications, replacing the current four Home Care Package levels. Each classification and budget will be determined after an assessment, and based on their needs. The top classification, for those with the highest needs, classification 8, has a quarterly budget of $19,500. When someone has a life expectancy of three months or less, they will be moved onto the End of Life Pathway, with their budget increasing to $25,000.