Maria Torres* immigrated to the US from Mexico almost 40 years ago to start a new life. An unskilled laborer, she worked hard for decades to earn a living and take care of her only daughter Rosa. At 65 years of age, Maria was looking forward to spending the rest of her life in quiet retirement. However, what started as a simple abdominal pain led to a terrible diagnosis. The doctors told her that she had advanced incurable ovarian cancer and admitted her to home hospice.
A short time later, Maria’s daughter, Rosa, was diagnosed with incurable widely metastatic breast cancer and admitted to the same home hospice agency which was caring for her mother. Each woman had an individual nurse assigned, but the rest of the team, including the Chaplain and the Social Worker, cared for mother and daughter together, as they had expressly stated that they wanted to be together as much as possible for their remaining days. Maria, despite being terminally ill and in a lot of pain and distress, immediately slipped into the all too familiar role of a caregiver for her dying daughter. She would be at Rosa’s bedside throughout the day assisting her, and providing care.
As a hospice volunteer, I had the privilege of caring for Maria in the final chapter of her life. I also got to know Rosa fairly well. Both women were aware that they were dying, but I was struck by how neither ever used the words “death” or “cancer” even once during the entire process. It was nothing overt and there were no discussions about what they would or would not talk about. They both had some implicit communication patterns they were following, perhaps unconsciously, and simply did not talk about these taboo topics. This was especially true for Maria who was a very traditional Mexican American with Limited English Proficiency, and deeply bound by the norms and values of her culture.
Maria knew that she was dying as was her daughter. While she bravely comforted her Rosa, reassuring her that she would be with her every step of the way until the very end, she had no way of knowing this as she herself was terminally ill. Her biggest fear was that she would predecease Rosa and that her daughter would have to die alone. While she talked to me and her nurse about her worries and fears and about Rosa’s pain, she never talked about the cancer or death itself.
The Hispanic/Latino American ethnic group is very large and rapidly growing, spanning several countries and including vast cultural differences between said nations. The top five causes of death among the Hispanic/Latino American population are heart disease, cancer, stroke, diabetes and lung disease accounting for 70% of the deaths for this population. Members of the Hispanic/Latino population are, in general, not as engaged in physical activity as non-Hispanic white and black older adults. Socio-economic factors such as poverty, Limited English Proficiency, limited health literacy and living in a minority community neighborhood are barriers to palliative care access. Also, in many traditionally bound families, death and dying are still taboo topics and so they may avoid end of life conversations even when faced with known fatal illness like metastatic cancer. There is a great need for culturally effective Hospice and Palliative Care for Hispanic and Latino persons, as early access to Palliative Care will improve quality of care for seriously ill persons and their families.
Caring for Rosa and Maria , I learned that seriously ill people are most afraid of dying alone. Maria understood this very well and wanted to protect her beloved daughter from this terrible loneliness. True to her word, Maria held on to her own life until her daughter died. Maria outlived her beloved Rosa by one day, and mother and daughter were buried together.
*Names and information altered to protect patient confidentiality.
This article was written by Luz Tur-Sinai Gozal, who is an iSAGE mini-fellowship program student and a sophomore at Stanford University majoring in Philosophy and English with an emphasis in Creative Writing. Luz was born in Jerusalem, Israel, and since then has lived in multiple countries around the world and is fluent in several languages. Luz has enjoyed being a Hospice Volunteer for over four years.