The manner in which one leaves this world can be as meaningful as how a life was lived. This is why when the prospect of death approaches it’s important to make this last life ritual as special as possible. As prepared as we think we might be when faced with the grim reaper himself, the dying and grieving process for many families can be scary and overwhelming in its manifestation. In Joan Didion´s acclaimed memoir “The Year of Magical Thinking,” about how she grieved her husband´s death, she wrote about that overwhelming human emotion.
“Grief, when it comes, is nothing like we expect it to be. And when it does come, it unweaves the very fabric of our being. When love is lost, we lose the part of ourselves that did the loving — a part that, depending on the magnitude of the love, can come to approximate the whole of who we are.”
Lessening that pain and sorrow is what hospice care in the United States aims to do and with Covid-19 cases showing up among Latinos and people of color at higher rates across the nation, many are grieving the deaths of family and friends by video camera or by phone because of social distancing. It’s a dark time where family members can´t be together during their last minutes of life and this leaves a lasting impact on survivors. Grieving can also be especially hard in a pandemic because people feel isolated and because many right now are also losing multiple people in their lives in a short period of time.
The Mayo Clinic defines hospice care as services that are provided by a team of health care professionals who maximize comfort for a person who is terminally ill by reducing pain and addressing physical, psychological, social and spiritual needs. To help families, hospice care also provides counseling, respite care and practical support. Unlike other medical care, the focus of hospice care isn’t to cure the underlying disease. The goal is to support the highest quality of life possible for whatever time remains.
Joshua Magariel, 37, National Director of Patient Experience at Seasons Hospice & Palliative Care in Illinois, is mindful that grieving can be more difficult for everyone right now. During a phone interview with BELatina News, he said that during a pandemic such as this, there isn´t always the same level of in-person support that he and his team always aim to offer, although they are finding ways around it.
Magariel is a licensed clinical social worker who specializes in bereavement and grief counseling. Perhaps one of the most touching parts about his work is how he and his team help a patient and their family break down barriers between them before death. Magariel helps them have what he calls a “life closure conversation.” This usually includes four elements made of the phrases: I forgive you. Please forgive me. I love you. Thank you. “We help people say those words. Before the pandemic we did most of this in person. Now we do it by video or phone call if that’s the only option.”
Pre-COVID , Seasons Hospice built community around their patients and those close to them with spaces where someone could hold a hand and cry, where they could be face to face. At Seasons, which provides both home hospice care nationwide in 19 states and care at their hospice inpatient centers, aside from care from physicians and nurses, a patient is usually visited by a Chaplain, a music therapist, a social worker, and in some cases art therapists or volunteers of every type (like pet therapy), to sit at their bedside to provide comfort.
During this pandemic, critical stepping stones in the grieving process such as funerals, memorial services and burials are also being limited, cancelled or postponed. “These are rituals that help us move forward and heal,” says Magariel. “These days it doesn’t have to be elaborate, but we encourage people to do something. Inter-generational ancestral memorials, altars, offerings, or finding a space in their homes for mementos are some options.”
Hospicio? Lost in translation, but finding new meaning for Latinos
I´ve never had a loved one in hospice care, so I did not know much about it until my conversation with Magariel. Most of my relatives in Colombia or in my native New York have always died at home or in a hospital. In my family, old folk’s homes, for example, were considered something that only distant and practical gringos did for their elderly, not something that loving close-knit Latin American families did. Involving an institution with strangers in your family life, could be viewed as if you had given up on or abandoned the idea of caring for your sick. In fact, when you translate the word hospice into hospicio its Spanish definition means just that: a place for either orphans or the poor. Nope, it’s not a term my Spanish-speaking family would trust.
Traditionally, the Latino population has been reluctant to engage in palliative care or hospice services. One study found that less than 6 percent of Latinos used hospice care in 2010, linking it to a lack of diverse staffing and cultural barriers as important factors. Thanks to outreach programs, Spanish-speaking staff and materials in Spanish that hospices like Seasons now include, those numbers are growing and quickly. The Medicare Payment Advisory Commission reported that while in 2000 only 21 percent of Latinos died using hospice services, by 2017 that rate nearly doubled to 42 percent.
While there still may be cultural and language barriers to overcome to make an end of a life the most meaningful moment for all involved, the universalities of death and grief still link us all. Like those who work at funeral homes (think the HBO series “Six Feet Under”), many might wonder like I did about what draws someone to hospice work in the first place. The majority of hospice workers, explains Magariel, are usually folks who have lost someone they were close to and have seen what hospices can offer people at the end of their lives and thus pursued opportunities in this field. “It is a powerful and life changing experience that dictates our life,” says Magariel of dying. “The beautiful part about my work, although it is centered on the arrival of death, is witnessing the incredible amount of love and community that people offer at the end of someone’s life. There are endless acts of love.”