Doulas have long been present at one of life’s most important milestones: the birth of a baby. Now, some are trained to provide support during individuals’ final moments as End-of-Life Doulas (EOLD). As the number of EOLDs grows, hospices are increasingly coordinating their efforts with providers of these services and in some cases are training their own cadres of doulas.
An EOLD is a non-medical support provider who is trained to care for someone physically, emotionally and spiritually during the process of death. EOLDs have a specific scope of practice: For the person dying, they facilitate conversations regarding the dying process, discuss advanced care planning, hospice election, and advocate for the patient’s wishes in his or her final days.
“Patients actually have more decisions that they can make regarding their end of life than they realize,” said Suzanne O’Brien, founder of the International Doulagivers Institute. “We want to put the power and control back in the hands of the people who may feel like they just lost all control following a terminal diagnosis.”
This process involves working through the patient’s wishes for their last days, including asking questions such as whether the patient will elect hospice, who should be at the bedside, their goals for end of life, and whether they wish to have a pet present, among other concerns.
“The emotional component can cause the most pain at the end of life,” O’Brien stated. “Doulas are trained to walk patients through these questions and often end with a life review to address questions like, are there any regrets, are there any relationships they want to repair, and then they can help the patient move toward those goals.”
In 2017, New York’s Hudson Valley Hospice began working with the International End-of-Life Doula Association to train their interested volunteers to become doulas. This came from a perceived need to expand on their offerings to patients and provide an approach to not only educate families but to alleviate the fears and anxieties that come along with dying.
Through the 18-hour training, volunteers are trained in the signs of imminent death, how to teach families to make decisions about the end of life such as, vigil planning, legacy projects, and bereavement work. “We teach volunteers who want to become doulas guided visualization techniques to help alleviate patient anxiety and bring them peace,” said Terri St. John, assistant director of Volunteer Services.
“We want our doulas to be involved as soon as possible in the process to build trust with families and nurture the educational process,” said Michael Kaminski, Hudson Valley Hospice CEO. “Unfortunately, doulas often are brought in too late to really take advantage of the expertise and benefits they offer.”
The benefits of hospices working in conjunction with EOLDs can be twofold. Non-medical doulas can spend more time with a patient than a hospice nurse or a volunteer can, leading to better support and satisfaction. Doulas are trained to spot medical issues when they arise and can alert hospice nurses to major changes. This teamwork makes an immeasurable difference in the care and safety of patients.
“When I was a hospice nurse, if my patient was stable, I might only be able to spend about an hour or so with them,” O’Brien told Hospice News,What happens the rest of the time?”
Secondly, the education that doulas provide to families can help alleviate some anxiety and could help the patient move into hospice earlier in the course of their illness. Earlier election allows patients and families to benefit fully from hospice services, improves the patient’s quality of life in their final days, and supports the hospice’s bottom line by increasing the number of patient care days.
Earlier election also provides a boost to hospices’ publicly reported family satisfaction surveys. The number one complaint that most families have about their loved one’s hospice care is that they wished they could have received those services sooner, according to the U.S. Centers for Medicare & Medicaid Services.
Educating families about their options after their loved one’s death is part of a doula’s work. Most patients say they wish to die at home, but a rising number of families are also holding wakes, funerals and memorial gatherings in their homes, often with the deceased present.
“Death is the second leading source of fear in the United States and this creates dysfunction,” explained O’Brien. “When a doula is present, it gives the family permission to step outside of their comfort zone and to see the beauty of this transition.”
While some doulas are employed in connection with hospices, hospitals, and community organizations, others practice privately. There are currently no state or federal regulations for practicing as an end-of-life doula, and services can be offered free of charge or for a fee. When doulas do ask for compensation, services are paid for out of pocket but are often offered on a sliding scale.
Doulas are not under government licensure and operate outside of a system of reimbursement. This allows varying curriculums to be taught to prospective EOLDs. Some programs focus on companion and vigil training while others add medical information such as, the top ten diseases and their progression along with knowledge of the death process. All doulas are versed in advanced care planning, cultural sensitivities and rituals, and the care of the mind, body, and spirit, all of which correlates with the mission of hospice.
“End-of-life doula care is actually elder care,” said O’Brien. “We need to have these important conversations regarding a patient’s passing and wishes earlier in the process, perhaps while they are still healthy, even before a terminal diagnosis is made, to alleviate the stress and fear that death can bring to patients and their families. Only then will we really be comfortable with death as a part of life.”
Written by Audrie Roelf