Quality End-of-Life Care for Hispanic Americans

So, I come from a small community in deep South Texas, about 15 minutes from the Mexico border. We call that place the Rio Grande Valley.

Family values run deep there, and respect for your elders is central. We live in multigenerational homes with our grandmothers, our aunts, and our cousins. That’s really important to us.

About 85 percent of the community speaks Spanish at home. It’s culturally rich, with a proud Hispanic heritage. But the Rio Grande Valley also faces 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 resources are scarce.

But I was on a mission to change all of that.

I’ve been a nurse for 24 years, and I’ve spent 13 of those years practicing as a nurse practitioner in hospice and palliative care.

That passion began because of the 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. That journey led me down a very difficult road. I traveled thousands of miles from home to receive advanced education, learn everything I could about palliative care, build programs, and spend thousands of dollars I did not have.

I was trying to create resources so families in my community could receive what people were getting across the country, because we deserved it too.

It also helped me build enough courage to knock on the doors of giants in palliative care, simply to ask for a small piece of advice and learn how to care for the very sick people in my community.

And then COVID hit.

It highlighted the importance of end-of-life care in my community. But, thank God, some of the hard work had already been done.

By that time, we had built a palliative care program and an inpatient center at the hospital. We had also just launched a 25-bed freestanding unit.

Still, the emotional and psychological toll on my community was profound. Families faced the heartbreaking reality of losing loved ones without being able to say a proper goodbye.

In August 2020, I lost my mother to COVID.

My mother was a stunning, funny lady. She was full of life. She was also a nurse, so my mom knew exactly what she wanted as she approached the end of her life.

She did not want to be intubated, and she wanted to be cremated.

Now, I have to admit, my mother was a very vain woman. I asked her, “Mom, why do you want to be cremated? We’re Hispanic. We come from a big family. All of us are going to be there for your funeral and memorial.”

She said, “Andrea, I cannot risk the funeral home getting my hair and makeup wrong.”

And I remember thinking, “Mom, morticians are not beauticians.”

She said, “Exactly. Burn me. I can’t risk it.”

That was my mom.

We had a plan. We knew.

Five days before my mom died, she called and said, “Andrea, I’m dying.”

And I remember thinking, “Mom, don’t say that. There are a lot of things coming out on television. You have O-positive blood, and there are experimental treatments starting to become available.”

But I was in denial.

I was lying to my mom because I knew my community did not have those resources.

And I didn’t listen.

I lost the opportunity to have a valuable conversation with my mother.

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. I knew we could care for patients.

But I didn’t understand COVID, and I didn’t know what was about to happen.

I was not prepared for the devastating loss I was about to experience.

I used to 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.

I had trained people in my community. We had gone to conferences. We had a doctor who was going to help care for patients.

Still, I found myself becoming my own palliative care team.

Now I had to prepare my mom. I had to talk to my siblings. And on top of that, I had to be my own grief counselor.

I had to prepare a funeral and think about everything that was coming.

But I was still in denial. I was clinging to any hope I could find.

The night before my mom died, an anesthesiologist called me and said, “I’m calling because your mother is refusing to be intubated. I’m asking for your consent to do it.”

I remember asking him, “Can you help her?”

He said, “Yes, I can, but I cannot promise that she will come off the ventilator once I put her on it.”

Immediately, I thought, okay.

Then I heard my mother yelling in the background, “Andrea, I said no. You better not intubate me.”

As much as I wanted to say yes, I had to say no.

I said, “The answer is no.”

After that, all I could think about were the refrigerated 18-wheelers lining up outside the hospital. They had been on the news the day before.

I remember thinking, “Oh no. I don’t want that for my mom.”

I had images of bodies being piled inside those freezers.

The next day, my mom died alone with strangers.

Before COVID, my mom and I had a plan. We were going to write letters and watch movies because she loved movie popcorn with extra butter.

The guilt and disappointment I felt because I could not give my mother what I had given so many patients before was gut-wrenching.

We were robbed of that opportunity.

Then the Lord responded to my sorrow.

My aunt called and said, “My friend from high school owns the funeral home we were going to use. She’s going to pick up your mother immediately.”

And I thought, “Oh, we spared my mom from going into the freezer.”

Then we arrived at the funeral home.

Behind a glass window, on a steel table, lay my mom. Her hair was unkempt, her roots had grown out, and her face was swollen.

I remember thinking, “Oh, Mommy. We saved you from the fate you so badly did not want.”

As I left the funeral home with my siblings, I received a call.

It was a military veteran and nurse practitioner who had some palliative care experience and had cared for my mother.

She said, “Andrea, I hope you don’t mind. I got your phone number from your mother’s chart. I wanted to call because your mom was so courageous at the very end.”

I asked, “Can I ask what her last words were?”

She said, “I asked her, ‘Do you know what is going to happen when I turn all of these things off?’ And your mother said, ‘Yes. I’m going to go be with Jesus.’”

That brought me so much comfort.

Knowing that she had surrendered to her faith gave me so much peace.

But that peace was short-lived.

Fifteen days later, my stepfather of 33 years was also gone.

His story is a little different.

I had never had that crucial conversation with him. I didn’t know what he wanted. We had never talked about it.

More importantly, I thought I knew everything. I made all of his appointments. He called me when he was sick. I attended about half of those appointments with him.

But I never asked the questions.

We had fallen victim to the cultural barriers that still exist today, including the gender roles between a father and a daughter.

I thought, “He’s the authority figure. He’ll let me know when he wants to talk about it.”

I also believed I needed to respect him, and maybe these were simply conversations we did not have.

It was taboo.

You know, as Hispanics, we don’t talk about sex, and we definitely don’t talk about dying.

All of those things continued to play in my mind.

Once again, I felt disappointed. I felt that I had failed him.

When I talk about falling victim to cultural traditions, taboos, and practices, I want to share a few examples.

The first is language.

Language does not always translate easily.

For example, the Spanish word hospicio can be understood as a place for people who are unwanted.

And it’s not only about language. It’s also about trust.

How could I ask my community to trust me when I could not communicate clearly? We did not have the words to describe what we wanted to offer them.

Then there is respect.

We show respect with a simple nod of the head. Unfortunately, that can be misunderstood as comprehension or agreement.

But sometimes it is simply a sign of respect. It is only a nod.

Faith and religion are also very important to us. They deeply affect the way we make decisions near the end of life.

Fatalismo is something we also see within Hispanic culture. It is the belief that suffering is predetermined, that it is God’s will, and that it is simply the way things are supposed to be.

But that belief can also influence the way we seek pain management.

Because when we believe we are supposed to suffer, we will suffer.

We may also accept life-prolonging treatments by saying, “That was my fate. I accept it, and I move on.”

Then there is familismo.

Family always comes first for us.

Palliative care is described as patient-centered and family-focused. But among Hispanic families, we often elevate the family first. What the family needs can feel more important than what I want or need as an individual.

So maybe we need to reverse the language and describe it as family-centered and patient-focused.

Decisions among us are made collectively. That is why our waiting rooms are enormous, right?

So, I want you all to remember a few things.

To my community in the Rio Grande Valley, I will always continue to fight for and champion hospital-based palliative care.

To the broader community, I ask that we create spaces where patients feel seen, heard, respected, and safe.

The three people who helped me during my mother’s death may not have realized what they gave me. They gave me the ability to honor my mother’s decision. They gave me the chance to hear her story and honor her at the very end.

I could not have done it alone.

Sometimes we don’t get it right, even when we work hard.

And to the people out there who are championing this cause alone, I’m here to tell you:

Find champions.

Or be that champion for someone else.

Thank you.