When it became clear that 88 year-old John Binder was dying, his daughter started making preparations to quit her job and travel nearly 1,000 miles across the country to take care of her elderly dad.
The retired mechanic, who suffered kidney failure as a result of diabetes, couldn’t be looked after by his wife, as she was also elderly and had recently undergone cancer treatment, and he refused to go to a hospice center.
But then, a church leader recommended the family contact a death doula.
When most people hear the word doula, they think of the person who provides support to pregnant women – but there is another camp of doulas who specialize in the dying.
In addition to all death doulas do, a newer aspect of their work may now be offering guidance to patients who want to apply for medical aid in dying, known as MAiD
The formal role of death doulas in conventional medicine is relatively new — though the practice has been around for centuries.
Mr Binder’s daughter eventually hired Ashley Boydston, a death doula close to her parents’ home in Kansas City.
Ms Boydston would do everything from helping maneuver him into comfortable positions, to reading him scripture readings from the day’s Mass, to translating complex insurance paperwork.
And according to his daughter, Trina Wafle, the doula’s services were a ‘godsend.’
Ms Wafle told The Kansas City Star: ‘I want everybody to know about this. Thank God Ashley was there.’
According to a DailyMail.com investigation, this Kansas family is far from the only one to turn to death doulas in the months approaching the death of a loved one.
Death doulas, who can charge up to $3,000 for their services, say they are increasingly in demand amid the growing number of medical aid in dying (MAiD) policies that allow terminally ill people to choose when to end their lives.
This, combined with the increasing problems accessing quality end-of-life care, has made death doulas especially popular.
One doula-training company reported its membership nearly doubled from 2018 to 2023.
While many doulas volunteer their time for free, others offer tiered ‘packages’ that include in-home visits, education on the dying process and supporting loved ones through the grief process.
These packages can run between $1,800 and $3,000 dollars but are only the tip of the iceberg.
Some doulas charge even more for ‘a la carte’ services, including throwing a goodbye celebration, having day-after-death support ($225), assisting with MAiD ($1,600) and even planning a funeral ($225).
Death doulas speaking to DailyMail.com have said some patients simply want company during their darkest hours.
Washington DC-based death doula Laura Lyster-Mensh told DailyMail.com a lot of her services take place in a hospice, where she spends time with people who have no family in their last days, holding their hands as they die: ‘ I do a lot of literal hand holding.’
She said: ‘I think that service really calls to me because I don’t think anyone should die alone. It is important to give dignity and humanity to people who are ending their lives without loved ones around them.’
While it is not clear how many Americans die alone in hospice care, there is a loneliness epidemic among the elderly in the US, with more than one-quarter of people older than 60 living by themselves.
Death doulas are not required to have formal medical training, although some come from a nursing background.
Their responsibilities range from personal care, like helping patients get to the bathroom and wash, to helping plan a funeral or burial arrangements, navigating the legal system around MAiD laws and planning end-of-life rituals or gatherings.
Many are present during the active dying phase to alleviate some of the burden on loved ones.
Death doula Wilka Roig told DailyMail.com: ‘Dying is a personal, natural event and not a medical one. The death doula movement… indicates we are beginning to reclaim our rights for how we wish to die.’
Death doula Wilka Roig told DailyMail.com they are advocates, activists and educators who ‘contribute to evolving our death culture’
It is difficult to estimate how many death doulas there are in the US, as there is no central organization that oversees them and no central registry, but one organization that trains death doulas, the International End-of-Life Doula Association (INELDA), said it has certified 6,545 in the United States.
To become a death doula through INELDA, people must undergo a 40-hour certificate training program including lessons on everything from how to deal with specific end-of-life scenarios to grief counseling.
Unlike hospice or palliative care, which can be expensive and hard to access, end-of-life doulas do not interfere with the medical needs of a terminally-ill patient.
Nearly 70 percent of Americans have said they want to die at home, but insurance coverage of in-home medical services is limited and availability can be strained.
A 2019 report from the Center to Advance Palliative Care and the National Palliative Care Research Center noted that the services in the US ‘do not meet the needs’ of terminally ill people and access varies widely across the country.
Those in the northeast have ‘significantly’ increased access, while people in southern parts of the US struggle the most to get hospice care.
Additionally, despite the desire to want to die at home, a 2020 report found some states do not cover hospice care under Medicare or have recently eliminated benefits.
In the states that do cover it, restrictions apply to certain groups of people seeking the services based on age, disease and life expectancy.
And availability and coverage for hospice services for minority or rural patients is even more lacking.
Douglas Simpson, a death doula and executive director of the International End-of-Life Doula Association (INELDA), told DailyMail.com this is where the doulas come in – to fill in when hospice fails.
He said: ‘There’s a real gap in access to equitable [end-of-life] healthcare’ in the United States, ‘so we’re filling a gap.’
Mr Simpson added: ‘Hospice organizations do great work and provide a needed service and care, but most of the time there’s a caseload and there’s just so many people, so that’s when doulas can step in.
‘They can add value and add to the care being provided.’
Death doula Kacie Gikonyo, who is a registered nurse based in Ohio and founder of the Death Doula School, told DailyMail.com hospice providers often have a large caseload and can only afford to spend one to two hours per week with their patients, which ‘means the majority of the caregiving responsibilities fall on loved ones.’
Ms Gikonyo said: ‘We [death doulas] can also work alongside hospices to provide a higher level of care than what hospice alone can offer.
‘I always like to say, “YODO: you only die once.” So, ensure you have the best care and support at the end for yourself and your loved ones.’
In addition to what they already do, a newer aspect of death doulas’ work may now be offering guidance to those who apply for medical aid or assistance in dying, known as MAiD.
In the US, laws surrounding MAiD, previously known as physician-assisted suicide or medically assisted suicide, vary state-to-state.
Currently, it is legal in Oregon, Washington, Montana, Vermont, California, Colorado, Washington, DC, Hawaii, New Jersey, Maine and New Mexico.
Even within the states, however, laws differ, including the process of applying and being evaluated and who can administer the end-of-life medication.
Mr Simpson told DailyMail.com death doulas will play ‘a supportive role’ in the MAiD process.
He said: ‘I can see us as doulas holding space and sitting with the circle of care of the dying person and supporting the autonomy of the dying person. If your uncle or father has chosen [MAiD], how do we honor their choice?’
Mr Simpson stressed they will not step in and replace the role of a trained medical professional.
He added: ‘If our focus is the autonomy of the dying. We need to be aware of what choices are out there and then honor the decisions [people] make based on their options and their dying plan.’
Douglas Simpson, a death doula and executive director of the International End-of-Life Doula Association (INELDA), told DailyMail.com with the expansion of MAiD policies, he feels death doulas will play ‘a supportive role’
Support could even mean helping the dying person research MAiD or connecting them to the proper organizations or providers.
Ms Gikonyo told DailyMail.com death doulas who support MAiD can also work with lawmakers and politicians in their areas to, ‘assure that everyone has the right to choose MAiD if it feels right for them.’
In addition to working in people’s homes, death doulas can work in intensive care units, delivery rooms, hospices, AIDS service organizations and other spaces where patients or caregivers go to receive death and dying support.
Ms Lyster-Mensh, who became an end-of-life doula during the Covid-19 pandemic, told this website it has been a ‘transformative’ experience.
Through her work, she said: ‘I’m quite reassured that dying can be a peaceful time and a safe landing if we as a society do a better job… but we still leave people alone.
‘If people were less afraid to be with dying people, that would be better. It is not scary being with a dying person.’
As death doulas become more of a staple in people’s dying experiences, those in the field are advocating for insurance companies to reimburse them for their services, which many provide for free.
Mr Simpson said working with insurance companies to have death doulas be acknowledged as a vital part of someone’s ‘circle of care’ is vital.
Regardless of payment, these doulas feel working with people who are dying is a calling.
Ms Gikonyo told this website: ‘Being a Death Doula is written on my soul. It’s my calling and my purpose in life… it feels deeply ingrained in my soul — it’s truly what I am meant to do.’
