The following op-ed, “An Advance Directive Could Have Prevented Our Family from Being Torn Apart,” by Ana Romero was published in the LA Times en Español on September 19, 2022. The op-ed has been translated to English below.
My 37-year-old husband, Juan Fernando Romero, died after a severe brain injury left him in a vegetative state with no chance of recovery.
Five years have passed since his death in June 2017, but not a single one goes by without me talking about the importance of completing advance directives outlining your end-of-life care preferences, regardless of how young you are. This simple document could have avoided a legal battle over my husband’s end-of-life care and a family dispute that tore our family apart.
National Hispanic Heritage Month starts this week. One way to honor our culture is by speaking about the importance of advance directives.
I wish Fernando would have had an advance directive so our family could have avoided a bitter legal battle over whether to keep him alive artificially with medical machines against his end-of-life care preferences that he told me about, but not his parents or sister, and not in writing in an advance directive.
It is no secret that Latinos avoid talking about death. We are a community with the highest rates of life-threatening illnesses like diabetes, yet we are the least likely to complete advance directives.
People with advanced directives are less likely to receive unwanted and invasive treatments, such as feeding tubes, being put on a ventilator, and recurring hospitalizations during their last months of life.
Fernando and I were young, newly married and had not prioritized putting our end-of-life care preferences in writing. However, he told me numerous times before his injury that he never wanted to depend on medical machines to be kept alive.
But again, he did not state it in writing.
My husband’s health slowly and gravely deteriorated after his brain injury, and he required 24-hour care in a nursing facility. His doctors said he had no chance for recovery. Since he had irreversibly lost his capacity for consciousness, he was unable to tell the doctors his end-of-life care preferences.
After seeing him languish for 18 months, I made the painful decision a few weeks before Christmas to bring Fernando home, where he could get palliative care to relieve his symptoms and keep him comfortable, so he could spend the holidays with our young daughters and me.
Little did we know he would never make it home.
Bitter Family Battle
On December 9, 2016, the day before I had arranged to bring Fernando home, his sister and parents filed two lawsuits.
The first lawsuit sought to overturn my healthcare decision-making authority as his wife, while the second lawsuit urged the court to appoint Fernando’s sister to replace me as his healthcare proxy so she could keep him on life support.
The lawsuits focused on what Fernando would have wanted, since he had not completed an advance directive.
Fernando’s family claimed he showed signs of consciousness. But every doctor who examined him, including experts who testified for both sides in the lawsuit, concluded he was permanently unconscious and could not possibly understand what anyone said to him, let alone respond to questions about what he wanted.
My 37-year-old husband died of natural causes on June 3, 2017, despite being on life support, shortly before the trial arguments.
In early 2018, a Los Angeles Superior Court Judge ended the legal battle that had raged for over a year. The judge ruled that as Fernando’s wife, I was in the best position to know his end-of-life care preferences. The judge also noted that my decisions about Fernando’s end-of-life care had been consistent with his preferences and in compliance with both Catholic doctrine and California's Health Care Decision Law.
Unfortunately, the judge’s decision came too late for me to honor my husband’s end-of-life care preferences. As a result of the litigation, Fernando pointlessly lingered for six months.
Since my husband’s death, I have made it my mission to raise awareness about preparing for death, despite my relatively young age.
I share my story to urge others to speak to their loved ones about the importance of filling out advance directives. These legal documents let your loved ones and healthcare staff know whether you want — or don’t want — life-sustaining medical treatments. They also let family members and medical staff know your advance end-of-life decisions that you want them to honor in case you cannot communicate for yourself. You can get free information about advance care planning and the documents you need to complete for it at https://compassionandchoices.org/our-issues/advance-care-planning.
Fernando would have been heartbroken if he knew about the lawsuits that tore his family apart. But this tragedy will serve a greater purpose if it can inspire others to complete an advance directive so that your loved ones will know what your end-of-life care preferences are before you can no longer speak for yourself.