By Chris Haring

End-of-life services like death doulas, advocacy, and support organizations are making a critical difference in an era of increased isolation and loneliness.

End-of-life services are becoming more available as the need for compassionate care grows. Due to many factors, including the COVID-19 pandemic and other trends in elderly loneliness over the last few years, more people are living longer lives without needed emotional and physical support. This growing recognition is spurring a movement to improve end-of-life services and offer essential, critical care.

A recent study documented the rise in loneliness among older adults

A March 2023 report from the University of Michigan’s National Poll on Healthy Aging revealed about a third of adults between 50 and 80 reported feelings of isolation in its most recent year. The study also found that 37% of older adults experienced a lack of companionship, and 33% had infrequent contact with people outside their home.

Advocacy organizations offer crucial support in response to increased need

Organizations such as the No One Should Die Alone Foundation, established in 2012, can help ensure that patients in hospice care do not die without a compassionate caregiver. This foundation hires caregivers to be with patients during their final moments, providing emotional and physical support. A caregiver’s presence can significantly improve the quality of a person’s final days, ensuring they do not die alone and in despair.

Similarly, the No Veteran Dies Alone program focuses on providing end-of-life support to veterans who find themselves alone during their last days. Inspired by the No One Dies Alone initiative, this program trains volunteers in military culture and the dying process, enabling them to offer specialized care to veterans. These volunteers provide companionship, understanding, and comfort, ensuring veterans receive the honor and respect they deserve in their final moments.

The essential role of death doulas in end-of-life care

Death doulas, also known as end-of-life doulas, offer invaluable support to those nearing the end of their lives. They focus on the emotional and practical needs of the terminally ill patient and their family, providing various services from helping with personal care and navigating legal matters to offering companionship and facilitating end-of-life rituals.

In a recent Daily Mail article, Alexa Lardieri highlights the increasing demand for death doulas, especially as access to quality end-of-life care remains challenging for many. Most insurances do not typically cover death doulas, which makes them inaccessible to those who can’t afford to pay out of pocket. However, many doulas also volunteer their time or work with non-profit organizations to offer services to those in need.

As Laura Lyster-Mensh, a death doula based in Washington, DC, says, the role is deeply personal. She describes her work as “literal hand holding,” comforting those alone in their final days. Another death doula, Wilka Roig, highlights the personal nature of dying, stating, “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.”

Another doula, Ohio registered nurse and founder of the Death Doula School, Kacie Gikonyo, explains, “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.”

How death doulas support medical aid in dying

As medical aid in dying becomes more widely accepted and available in the United States, death doulas provide guidance, support, and companionship throughout this process, helping patients and their families navigate the legal, medical, and emotional aspects of aid in dying.

Executive Director Douglas Simpson of the International End-of-Life Doula Association (INELDA) explains that death doulas “hold space and sit with the circle of care of the dying person, supporting the autonomy of the dying person.” They ensure that the patient’s choices are respected and honored, providing a sense of dignity and peace during a profoundly personal decision.

Volunteering opportunities abound for compassionate end-of-life care

For those interested in becoming a death doula or volunteering with organizations like No One Should Die Alone, INELDA offers training programs and resources to teach the skills and knowledge needed to provide compassionate end-of-life care. Training programs cover various aspects of end-of-life care, including the legal, medical, and emotional support necessary to provide patients with the best end-of-life options.

If you want to volunteer as a death doula, consider contacting the International End-of-Life Doula Association (INELDA). To get involved with the No One Should Die Alone Foundation, visit their website here.