Last year I lost my father, Felipe, to colon cancer. He was 66 years old. As I sit in my home office reminiscing, I can’t help but wonder if I could have done more for him. He wanted to live. He never complained. In fact, he didn’t even mention feeling ill until he was admitted to the hospital. So many truths came to light during his battle with cancer.
My father’s illness and death left me with many questions—about my dad, about myself, about the patients at the community clinic where I work as a nurse practitioner. Like my father and me, many of my patients are immigrants. Losing my dad has opened my eyes to their need for something different than a one-size-fits-all approach to preventative care. I’ve become passionate about the value of listening, asking uncomfortable questions, and truly understanding my patients and their point of view. I hope that learning more about what went wrong with my father and the experiences of patients like him will inspire you, too.
What happened to my father
Until last year, my father, Felipe, lived with his wife and my half-brother in Managua, Nicaragua. My dad frequently visited the United States to see me and other relatives. A Type 2 diabetic with hypertension and chronic kidney disease, he began to experience severe constipation and bloating around the age of 63. No one knew about those symptoms at the time. My dad believed such matters to be private and “no one else’s business.” He treated his symptoms with natural remedies such as prune juice. He visited a natural healer for teas to relieve bloating and gas. He thought his symptoms would just go away, but instead they got worse. By the time he finally visited the doctor, he was unable to have bowel movements. The diagnosis: advanced-stage colon cancer, which had already spread to his liver and lungs.
At the time of my father’s first hospitalization, doctors found and surgically removed a large tumor, but my dad couldn’t tolerate chemotherapy or any other treatments. He became very sick, stopped eating, and frequently vomited. He suffered from recurrent acute gastrointestinal bleeding, which worsened his anemia. At the time of his cancer diagnosis, he was also diagnosed with COVID-19 and H. pylori infection. In the end, he developed heart issues, too. He passed away within a year of his cancer diagnosis.
What I wish had happened
Around the time my father became ill, two of my friends lost family members to colon cancer. All passed away in their 60s and had similar cultural backgrounds to mine and my father’s. As I comforted my friends, I wondered: What could have been done differently for my dad and others like him? What could I have done? Why didn’t these people seek preventative care? What could caregivers have done to better understand the barriers that clearly held them back? My questions and experiences have led me to these three wishes:
1. I wish I’d asked more uncomfortable questions
Before my father became ill, I suspected something was wrong. I could see he was getting thin. I commented on his weight loss, but I didn’t ask him if he’d spoken to his doctor. He attributed the weight loss to healthier eating. Never did I imagine (or maybe I was in denial) that my dad had cancer. I felt that I failed to plant a seed to encourage him to go get screened. I wish I had.
After all, I understood his culture, preferences, lifestyle habits, and upbringing. I understood him. I knew that he would only visit the doctor if he was truly suffering. He viewed his body as a temple and took care of it the best he could, but in a natural way. His mother—my grandmother—felt the same way.
I see similar practices in many of my foreign-born patients. They believe natural medicine is the first step to take when they feel ill. They visit natural providers for pills and teas made from roots, plants, and fruit. They may visit a Sobador, who massages the body to help it heal. My father believed massaging the abdominal area improves digestion and processing of the stool.
Many people, like my father, go to the doctor only after they’ve exhausted these natural methods. That’s why they often only receive medical treatment near the end of their lives. To urge them to pursue preventative care takes a high-trust relationship. It also takes a little prodding. To truly motivate people to pursue preventative care, we need to go beyond yes/no questions and dig deeper into the reasons why they make certain healthcare decisions.
I wish I’d asked my father more questions. If I had, he might be here today.
2. I wish I’d listened better to build trust and understanding
Sometimes as a provider, I’m so busy creating rigid plans of care, which leads to not taking the extra time to dig further into why patients aren’t getting better, or why they didn’t do what I recommended during their last visit. I have learned through some of my patients that their natural caregivers can provide more time and listen to their preferences more than any other healthcare providers in a typical clinic setting.
In addition to many barriers (and specifically the communication barrier), colon cancer screenings are a difficult subject matter. Most patients won’t open up about the subject unless they feel comfortable and there’s a trusting relationship where they don’t feel judged. I wish I’d spent more time listening to my father. Lending a listening ear can help build trust. It can also provide a window into how people view preventative healthcare.
At my clinic, I see people from different cultures, with different ethnicities, upbringings, and beliefs. I’ve learned that, when I take time to truly understand people and where they’re coming from, I can do so much more for them.
3. I wish I’d suggested alternatives to colonoscopy
We all know that if chronic diseases are caught early, patients have a chance to live longer, with fewer illnesses and treatments. Preventative care is good for everyone. So why do so many people resist it?
For many patients, it’s not about the cost. Several of my patients have insurance that covers everything, yet they still decline preventative care, especially colonoscopies.
Why is that? In my case, the barrier is often ethnic, cultural, and religious practices—or a failure to understand them. Oftentimes, it’s men who say no to colonoscopies due to cultural or religious beliefs that a colonoscopy is a violation of their manhood. They avoid what they believe is an invasive procedure when there is no sign of illness.
Hispanic women avoid preventative care for different reasons. They’ll put off a colonoscopy because it takes time away from their homes and families. They put themselves and their own health last.
I try to remind patients in a gentle, caring way that suffering and early death are preventable; and even as inconvenient as a colonoscopy sounds, it can save their life. I explain the process and try to negotiate. But I also respect their point of view. I often suggest screenings that are less invasive than a colonoscopy. For example, patients can bring in a stool sample or send it by mail and they’re done for the year. If the results show something abnormal, a colonoscopy is the next step. I wish I’d suggested this type of screening to my dad.
Closing the gap: Making wishes come true
Wishes can only take us so far, but they’re a start! I’m happy to report that, when the time comes, my brother plans to have a colonoscopy, whether the experience is uncomfortable or not.
How can I help reach others? Last fall I spoke on Radio Caliente 97.9, a local Hispanic radio show, about the importance of a colon cancer screening. I hope to use my skills as a bilingual nurse practitioner for community outreach as well. I’d like to share information at places people visit often, like churches, to help them become more comfortable with the notion of preventative care, especially screening for colon cancer.
I hope my experience and wishes will inspire you to ask questions, listen, and reach out, too. Together, we can help close the gap in healthcare disparity and help people like my father live longer, healthier lives.
Rosaoleana Aguilar Audeo, DNP, RN, FNP-BC, is a Family Nurse Practitioner within the Wheaton – Ascension Health System in Milwaukee, Wisconsin, USA. She is a member of Sigma’s Psi Lambda Chapter.