Quality End-of-Life Care for Hispanic Americans

Hello everyone, and thank you for that introduction. And I am so excited and honored to be here tonight.

So, I come from a small community in Deep South Texas, about 15 minutes from the Mexico border, and we call that place the real Rio Grande Valley. Family values run deep there, and respect for your elders is central. We also think about multi-generational homes. We live with our grandmas, our aunts, our cousins. So that’s really important for us. Eighty-five percent of the community speaks Spanish in the homes, and it’s culturally rich. But I do have to say that we do come from an area that has proud Hispanic heritage, but the real Rio Grande Valley does face some of the country’s most severe economic and healthcare challenges, especially when it comes to end-of-life care. Access to healthcare is limited, and also resources are scarce. But I was on a mission to change all of that.

Now, I’ve been a nurse for 24 years, and 13 of those have been as a practicing nurse practitioner in hospice and palliative care. Thank you. And that passion started because of a terrible experience of watching my grandparents die. I was on a mission to bring high-quality end-of-life care to the Rio Grande Valley. Now, that journey led me on a very difficult road, which was driving and traveling thousands of miles from my home to receive advanced education, learn everything that I could about palliative care, build programs, and spend thousands of dollars that I did not have. I was trying to build resources so that families in my community could figure out what people were getting across the country because we deserved it. Not to mention, it helped me build enough courage to knock on the doors of palliative care giants to simply get a small piece of advice from them to teach me how to care for the very sick people of my community. And then COVID hit, that highlighted the importance of end-of-life care in my community. But thank God, some of that hard work had already been done. By this time we had built a palliative care program in an inpatient, uh, an inpatient center at the hospital, and we had just launched a 25-bed freestanding unit. So, to say the least, the emotional and psychological toll was profound for my community. The heartbreaking reality that families had to face of losing loved ones without the ability to give a proper goodbye.

In August of 2020, I lost my mother to COVID. My mother was a stunning, funny lady. She was full of life. She also was a nurse. And so my mom knew exactly what she wanted when she was nearing her end of life. She didn’t want to be intubated, and she wanted to be cremated. Now, I will have to admit, my mother was a very vain woman. And I asked her, “Mom, why do you want to be cremated? I mean, we’re Hispanic. We come from a big family. All of us were going to join, you know, in our funeral, in her memorial.” And she said, “Andrya, I cannot risk that the funeral home will not get my hair and makeup right.” And I said, “I remember thinking, ‘Mom, but morticians are not beauticians.’” And she said, “Exactly, burn me. I can’t risk it.” That was my mom. We had a plan. We knew.

So, I will have to share that, right, five days before my mom passed away, she called and she said, “Andrya, I’m dying.” And I remember thinking, “Mom, don’t say that. You know, there’s a lot of things that are coming out on the television. You’re O-positive blood type, and on top of that, there’s a lot of experimental treatments that are now starting to come out.” But I was in denial. I was lying to my mom because I knew my community didn’t have those resources, and I didn’t listen. I had lost the opportunity to have a valuable conversation with my mom. And let’s not forget, by this time, I was knee-deep in palliative care. I had built a program. I had made great connections across the country, and I knew that we could take care of patients. But I didn’t understand COVID, and I didn’t know what was about to come. I was not prepared for the devastating loss I was about to experience.

And I also would call myself the Bob the Builder of palliative care in the Rio Grande Valley. I had created this toolbox full of skills and resources, and yet, once again, I was not ready. But this time, it was me. And so, while I had trained people in my community, and we went to conferences, and now we had a doctor who was going to help take care of patients, I found myself being my own palliative care team. Now, I had to prepare my mom. Now, I had to talk to my siblings, and on top of that, I also had to be my own grief counselor. So I had to prepare a funeral and think of all the things that were coming. But I was still in denial. I was clinging to any hope that I could find. And the night before my mom passed, an anesthesiologist called me and said, “I’m calling you because your mother is refusing to be intubated. And I’m asking for your consent to do so.” And I remember telling him, “Well, can you help her?” And he said, “Yes, I can, but I cannot promise that she will come off the ventilator once I put her on.” Immediately, I thought, “Okay, um,” and I heard my mother yell in the background, “Andrya, I said no. You better not intubate me.” And then I thought, “Well, as much as I wanted to say yes, I had to say no.” And I said, “The answer is no.” And after that, all I could think about were the 18-wheeler refrigerated trucks that were lining up outside of the hospital that had come out in the news the day before. And I remember thinking, “Oh no, I don’t want that for my mom.” It was images of piling bodies in this freezer.

The next day, my mom died alone, with strangers. Before COVID, my mom and I had a plan. We were going to write letters, watch movies, because she loved movie popcorn with extra butter. And the amount of gut-wrenching guilt and disappointment that I had that I couldn’t give my mother what I had given so many patients before. We were robbed of that opportunity.

The Lord responded to my sorrow when my aunt called me and said, “Hey, my friend from high school, she owns the funeral home we were going to use, and she’s going to pick up your mother immediately.” And I thought, “Oh, we spared my mom going to the freezer.” Then we showed up to the funeral home. Behind a glass, on a steel table, there lay my mom. Her hair, unkempt, roots up to here, and she was swollen from her face. And I remember thinking, “Oh, Mommy, we saved you from that fate you so did not want.”

Leaving the funeral home with my siblings, I got a call, and it was a military veteran nurse practitioner who had some palliative care experience and had been caring for my mother. And she said, “Andrya, I hope you don’t mind, but I got your phone number from your mother’s chart, and I wanted to call you because I wanted to tell you that your mom was so courageous at the very end.” And I said, “Can I just ask what her last words were?” And she said, “She said, ‘I asked her, do you know what’s going to happen when I turn all these things off?’ And she said, ‘Yes, I’m going to go be with Jesus.’” And that brought me so much comfort to know that she had resigned to her faith. It gave me so much peace. But that peace was short-lived.

Fifteen days later, my stepfather of 33 years was also gone. He had passed, but his story is a little bit different. In my life, I hadn’t had that crucial conversation with him. I didn’t know what he wanted. I had never talked about it. But more importantly, I thought I made all of his appointments. He called me when he was sick. I went to 50% of those with him, and I never, never asked the questions. We had fallen victim to the cultural barriers that exist today, at gender roles of a father and a daughter, where I thought he’s the authoritarian, and he’ll let me know when he wants to talk about it. You know, and also thinking that I needed to respect him, and maybe they were conversations we don’t have. It’s taboo. You know, as Hispanics, we don’t talk about sex, and we definitely don’t talk about dying. So all of those things continue to play in my mind. And once again, I had this disappointed feeling that I had failed him.
And when I talk about falling victim to some cultural traditions, taboos, and practices, I want to share that some of those things are, for example, language. Language isn’t always translated easily. For example, the word “hospice” in Spanish is “hospicio,” but that means “a place for the unwanted.” And then it’s not just about the language, it’s about trust. How could I have my community trust me when I couldn’t even communicate clearly? We didn’t have the words to describe what we wanted to give them.

And then there was respect. We show respect with a simple head nod, and unfortunately, sometimes that goes misunderstood or is represented as understanding or agreement, but it’s just a simple sign of respect. It’s a head nod.

Then, faith and religion are very important to us. It’s something that really impacts the way we make decisions at the end of life. Fatalismo is something that we also can see among the Hispanic culture. It’s the belief that suffering is predetermined, it’s God’s will, it’s the way it’s supposed to be. But it also influences the way we seek pain management because if we believe we should be suffering, then we will suffer. Life-prolonging treatment, hey, that was my fate. I accept it, and I move on.

Familismo: family always comes first with us. Palliative care is patient-centered, family-focused, but among Hispanic families, we elevate family first. That’s more important than what I want or what I need. So maybe we could switch that around and make it family-centered and patient-focused. Decisions among us are made collectively. For example, waiting rooms are ginormous, right? Um, and so I want you all to take these. Because to my community, I want you all to remember:

Rio Grande Valley. I will always continue to fight for and champion hospice and palliative care in my community.

To the broader community, I ask that we create spaces for patients where they feel seen, heard, respected, and safe. Because those three people didn’t realize that they gave me the ability to consent. They gave me the ability to hear a story and honor my mother. And at the very, very end, I could not have done it alone.

Sometimes we don’t get it right. We work hard. And for the people out here who are championing the cause all alone, I’m here to tell you: find champions or be that champion for someone else. Thank you.