End-of-life care is seeing a whole new beginning as families eschew hospitals and mortuaries for death doulas and home funerals.
Christine Barker brought her mother home to die. Donna Cooper, then 59 years old, was in late stages of liver failure and each hospitalization seemed to drain her physically and emotionally. Barker moved her mother into her living room and personally provided around-the-clock care for her in the weeks leading up to her death.
When Cooper did finally pass on, the Barker family tended to her body at home and also held a funeral in the family’s living room. In doing so, the Barkers joined a movement of Americans quietly changing their approach to end of life care. Increasingly, families are utilizing services like hospice care, the National Home Funeral Alliance, deathbed singers, and even doulas who specialize in gently guiding people across their final threshold.
Much like those who choose to birth their babies at home (and the Barker family has indeed birthed babies in their living room), families choosing home funerals are doing so because they find the current model overly medicalized, ripe with interventions, and coldly impersonal. Within the checklists and procedures that help hospitals and mortuaries run efficiently, individuals feel lost.
Barker watched a documentary about “home death” and felt drawn to the idea of personally tending to her mother’s body, honoring her memory in her own home, and then transporting her remains to be cremated. But the idea is not so simple as that—each state has regulations regarding the preparation of bodies and the transportation or burial of human remains. When people request forms or paperwork outside the norm, they often run into resistance, since this very old way of tending to our dead has become extremely foreign to our modern-day culture. Barker enlisted a friend who had had home funerals for her own loved ones, to make sure she had an outline of what specifically she needed to do when the time came.
Kateyanne Unullisi, public relations chair for the National Home Funeral Alliance, says Barker’s experience is becoming increasingly common. The NHFA, whose membership has nearly quadrupled to 530 individuals in the past year, came together as a resource to support families looking for minimal, non-invasive, environmentally friendly care for the deceased. They aim to facilitate maximum involvement from family members in taking charge of the funeral process.
While the term “funeral” typically brings to mind a ceremony of sorts, Unullisi is quick to remind me that a home funeral might just mean visitation in the home or even preparation of the body before driving it to the cemetery for a traditional funeral service. A home funeral or home death allows grieving families privacy, space, and time to be present with the body instead of saying farewell under glaring lights at a funeral home.
The NHFA offers information about everything from how to file necessary paperwork to how to physically prepare and clean a body once a loved one has died. “People are more and more wanting to do death and end of life in their own way, with values that match their own,” Unullisi says. “If you want to be more hands on and take responsibility for your loved one, we want everyone to know that is legal and available.”
The comparison to homebirth continues with the terminology used to describe individuals who work with families planning to care for a dying loved one at home. Job titles like “death doula” and “death midwife” are creeping up across the Internet. People, overwhelmingly women, are doing all different kinds of work around the end of life and since this type of work is new for our culture, there is a struggle to identify terms and job descriptions. In a broad sense, a death doula can be understood as someone who knows something about this life transition and can advocate for the dying person or family.
Before there is even talk of a funeral, however, there is the person who has been given a terminal diagnosis. This person quickly becomes a “dying person,” and Amy Levine, founder of the Doula Program to Accompany and Comfort, says this becomes very isolating. She trains volunteers who commit to spending one-on-one time each week with patients to focus on their life.
“Our mission focuses on minimizing physical and psychological isolation and loneliness,” Levine says. The client drives the relationship, which means the volunteer’s time with them might be spent watching Wheel of Fortune, not discussing big issues. The volunteers are not medical professionals—there are always medical teams overseeing a client’s care—but are simply committed to fostering a relationship until their clients die. Doula volunteers undergo specialized training to bear witness and provide a human connection to a person who is still living through the completion of a terminal illness.
Kate Munger notes that the first sound we all hear is that of our mother’s heartbeat. So, it makes sense to her that the last sounds we hear might be the soft voices of women, singing a cappella in harmony. She founded a network of deathbed singers called Threshold Choir, women who practice together and go, when invited, in trios to sing at the bedsides of the dying.
There are over 100 chapters of the choir throughout the United States, Canada, and Australia, singing original songs in dozens of languages. Cindy Harris has led the Pittsburgh, PA, chapter of Threshold Choir since 2008. There are about 30 women involved, singing at bedsides at least once a week, though Harris says she would need at least 20 pairs of singers every day to cover the demand in Allegheny County alone.
Harris, a musician who studies the effect of the singing voice on the listener, describes a range of effects from the choir. She wrote via email, “The stories range from the sublime—a woman who hadn’t spoken or opened her eyes for a week who heard us singing, came up from the depths to say ‘Wow!’—to the hilarious, such as a patient with dementia who joyfully sang tunelessly and loudly along with us and was joined by the hospice dog, who raised his voice in a howl.” She says she can tell all the patients hear the singers, responding visibly in some way. “I’m pretty sure those who have not yet figured out how to let go hear our voices as the voices of angels and take that as permission,” she says. “It is extremely common for us to hear that a patient we sang to has died within 24 hours of our visit.”
At the center of this movement to provide ease and comfort at the end of life lies hospice care. Threshold Choir partners with hospice organizations for referrals, as do Levine’s doula program and many families planning a home death or funeral.
Unfortunately for the Barker family, Cooper passed away before the Affordable Care Act opened hospice care to more individuals (the services are now covered by Medical Assistance and Medicare). Where Christy Barker personally provided around the clock care for her mother, she would now be eligible for home health aides and in-home nursing support if she chose.
Cooper was eligible for some hospice services toward the very end of her life, and Barker says, “they were always available for phone support and they are still involved. I get letters from them with information about bereavement groups and they sent me roses on the one-year anniversary of my mother’s death, which I thought was phenomenal.”
Larua Sokolovic, public relations chair for Three Rivers Hospice and Palliative Care in Pittsburgh, PA, says hospice care provides support wherever their clients reside, offering assistance with everything from bathing to social workers, funeral arrangements, and spiritual support. Sokolovic’s organization even provides companions for clients, much like the doula volunteers who work with Levine’s program. Because hospice providers are bound by regulations, Unullisi explains that families receiving hospice services still appreciate additional services from doulas or guides, who can help with special requests or remain with families longer than the hospice time frames.
For Barker, bringing her mother home and caring for her body personally was a healing experience for the whole family. Her wishes for her mother were new to the hospice agency, and Barker felt like the group learned from her desire to involve her whole family in a home funeral.
Barker says, “My husband made my mother’s coffin from a pine box, planed the wood from a tree cut by our friends. My son helped him build the coffin and painting it provided art therapy for me.” Barker, who had previously been estranged from her mother, says, “I wanted to know I did everything I could, to know in the end that I did right by her.”
A growing number of Americans seems to agree that “doing right” at the end looks different from the status quo.
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