In Puerto Rico, End-of-Life Doulas Dismantle Cultural Taboos

SAN JUAN, PUERTO RICO — Paola Correa remembers the moment when she realized her big sister was going to die. Her sister, Nancy Marie Rivera, then 37, was facing complications from ovarian cancer, so she couldn’t attend her son’s 10th birthday celebration. That’s when Correa knew.

Rivera had been diagnosed in November 2021. She went through surgery and chemotherapy, but the cancer was attached to her pelvis and there was no way to treat it. On July 9, 2023, she died in her home, with harmonious music playing, surrounded by her relatives and holding a small stone in each hand, one turquoise and one rose quartz. Correa treasures those stones.

Although this was the culmination of nearly two years of illness, the family still had more to manage. Correa says that by then, her family was exhausted. “My mom was very burned out. We all were. Everyone had done the most they could have done.”

Families that care for people with terminal illnesses can become emotionally drained and, when confronting the loss, they must also grieve, experts say. This makes tasks such as funeral and legal arrangements, and even cleaning up after the death, more difficult. Professionals known as end-of-life doulas make the impossible easier. They provide companionship and support to those approaching death, as well as handle post-death procedures, freeing friends and family to navigate their bereavement with more consciousness and peace. They help guide families during the grieving process, especially since grief still causes discomfort in Puerto Rico.

Alexander Aldarondo leads AMORir, an organization that provides education, preparation and support for dealing with death. He heard about the possibility of becoming an end-of-life doula while taking a course on being a birth doula and decided to obtain his certification through the International End-of-Life Doula Association. “That moment of death holds a lot of truth for me. No one can escape it. It equalizes everyone, and social status doesn’t matter,” he says.

Gabriela Meléndez Rivera, GPJ Puerto Rico

End-of-life doulas hold death education workshops, where participants discuss loss and grief.

The services of an end-of-life doula can include specific forms of support, for example, managing bereavement, creating advance directives, companionship in the last moments of life, education about death, processing the remains and belongings of the deceased, and coordinating funeral arrangements.

“Sometimes there would be procedures to manage, and Alex was there. I didn’t want to wrestle with it,” Correa says. “There was a lot I wasn’t capable of. I had already reached my limit.”

The family’s end-of-life doula received the doctor who certified the death of Correa’s sister. He secured and coordinated funeral services and cleaned up the bedroom, living room and kitchen the day she died. “He freed me from imminent responsibilities,” Correa says.

Alberto Alers Serra, a thanatologist and clinical psychologist with 18 years of experience in grief management, says this support is essential. “When grief occurs, psychological and emotional disruption is normal,” he says. “When a loss occurs, you feel like you are [floating] in the air, anesthetized and numb.”

Correa tries to remember other ways Aldarondo helped her family. “There was so much pain in those days,” she says, “that my mind has erased many things.”

“Death is the only thing that is certain”

Janice Karana has been curious about death since she was young. When she finished her nursing studies, she decided to pursue naturopathy and obtain her certification as an end-of-life doula — an unregulated profession in Puerto Rico — by taking a course with Going With Grace, an organization founded by Alua Arthur. Karana blends naturopathy with palliative care, preventing and alleviating pain when circumstances involve possible terminal illness. This allows her to provide pain-management services in tandem with her support as a doula.

Jessica Rodríguez remembers her father as a man “full of life.” Then, when he was 70, doctors found a tumor in his stomach. After an operation and roughly 20 chemotherapy sessions, he was expected to recover. However, the stomach pain would not allow him to sleep, and Rodríguez contacted Karana for acupuncture services. Karana “performed the acupuncture on him, but she also spoke with him. He was in such a deep depression that, at the very least, talking was good.”

In October 2022, Rodríguez’s father died. She still keeps his smiling photo with some of his belongings in a beaded trinket box.

“People are accustomed to [the idea that] you do not talk about death,” Karana says. “Death is the only thing that is certain. You don’t know if you’re going to get married or if you’re going to have children, but you still prepare for that. But for the one thing you are sure about, you don’t.”

Gabriela Meléndez Rivera, GPJ Puerto Rico

Alexander Aldarondo listens to stories from participants in a grief workshop that he and Janice Karana led in Loíza, Puerto Rico.

In Puerto Rican culture, death is still a taboo subject, and people are not sufficiently educated about bereavement, says Alers Serra, the thanatologist. “Familial structures, religious beliefs and socioeconomic elements have an impact on how we work through grief.” Familial structures can complicate the grieving process when conflicts arise, and relatives feel pressured to stay strong.

Religion, experts say, can place an emotional and psychological burden on people because the system of rewards and punishments can make accepting a loss more difficult. Meanwhile, those with limited financial resources cannot always afford the assistance they need to manage their grieving.

To raise awareness about grief management and death, Aldarondo and Karana run educational workshops. Part of their mission as end-of-life doulas is to promote cultural change that humanizes and normalizes death in Puerto Rico.

Gabriela Meléndez Rivera, GPJ Puerto Rico

Jessica Rodríguez poses with a photo of her father, Víctor Antonio Rodríguez Deynes, in San Juan, Puerto Rico.

The decline of Rodríguez’s father was her first close experience with death. “It was difficult for me. If you talk about these issues, people think you want them to die.”

Today, Rodríguez tenderly recalls the last time she and her father played padel together and watched the sun set over San Juan Bay. And Correa laughs when she remembers how, when they were teenagers, she made her sister flashcards so she could learn coffee recipes when she worked at a local cafe. Both Rodríguez and Correa are navigating their bereavement with their families.

“What else is there to worry about when someone dies other than grieving together, crying and celebrating what that person did?” Aldarondo says. “What a wonderful impact on society when a death inspires life!”