Abstract

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Guatemala is a lush, green country as seen by many tourists. The volcanoes, flowers, and amazing weather make it a fantastic place to visit and enjoy. But the real Guatemala is a country of poverty with garbage strewn across the countryside, children running down the dirt roads with no shoes, and emaciated dogs and cattle running wild. This is the Guatemala I saw when I arrived in San Raymundo with a busload of 45 other volunteers for a week-long medical mission. Our team was made up of many different clinicians including our group of graduate nurse practitioner (NP) students, practicing NPs, physicians, surgeons, dentists, and lay people with unique skills. We quickly unloaded our belongings, claimed bunk beds, set up examination rooms, three operating rooms, labs, and a pharmacy, and, most importantly, formed into a team of colleagues.
During this mission trip, I saw sicker patients with more grossly abnormal clinical findings than I've seen in my 8 years of caring for oncology patients in a tertiary medical center. This is due to the lack of access to routine medical care for preventative screenings. I and other team members also cared for patients to whom we simply had to say, “I'm sorry, there is nothing we can do for you; your condition will ultimately lead to your death.” My experience on the bone marrow unit has shown me that this can be a very difficult conversation to have in any setting, yet, I expected the cultural and language barriers in Guatemala to add to the challenge. However, I would take away a very different memory.
In the group of Guatemalans that would patiently line up outside our clinic starting at 3
I expected that delivering the news of Maria's terminal condition would be an emotionally demanding experience. My nerves and that of other team members were on edge mostly because we were unsure how the patient and her family would react to this news from a cultural perspective. We made sure we had the best translator in the clinic to properly express our empathy and to allow for questions. My colleagues and I sat down next to Maria and her family, all of us taking turns speaking through the translator. The dermatology NP told the patient she had a severe skin cancer that had spread quickly and is very deadly. The surgeon told the patient that normally this type of cancer can be removed if it is found early, but her cancer had spread throughout her body and it would not make her live any longer to have a major surgery. I watched Maria's reaction and that of her family while the translator spoke these words. I knew that the translator had found the right words in Spanish to describe cancer and terminal illness when Maria and her loved ones started crying and began hugging and kissing each other. I told them that I was an oncology nurse and often cared for dying patients in America. I offered to answer all of their questions. I was surprised and relieved when the women of the family turned to me, asking how to care for Maria properly while she was dying. I drew upon my palliative care skills to include this family in the goals of comfort for their loved one and to offer suggestions about end-of-life care given the very limited resources in their village and homes. I realized that Maria had an amazing family ready to take her home and provide any care necessary to make her remaining days good ones. This family was the ultimate hospice team that would have to manage without the expertise of skilled clinicians. But, I knew that they were prepared to love and care for her in the way that Maria needed in this final journey. As Maria and her family left my clinic room, she clung to me, kissed both cheeks and said, “Dios bendiga usted.” At that moment, I felt enormously proud of our team for providing a great deal of care for a family all in one meeting, but also I felt proud of Maria's family for accepting palliative care as real care, and not “doing nothing.”
For me, this experience is summarized by the quote by Viktor Frankl, “Everything can be taken from a man or a woman but one thing: the last of human freedoms to choose one's attitude in any given set of circumstances, to choose one's own way.” My patient and her family chose to face death in their own way and to choose love over fear or hate rather than the anger that some express when given a diagnosis of terminal illness. My decision to read Viktor E. Frankl's book, Man's Search for Meaning, on this mission trip was driven more by the size of the book than any lofty goal to understand suffering. Yet, I found inspiring his ability to use his experience of losing everything he ever loved or cherished during the Holocaust including his family, a lifetime of research, and his freedom to contribute the exceptional piece of scholarly work on suffering and spirituality that emerged from this deprivation. Frankl's work inspired me to see the parallels in Maria and other patients I care for during their times of suffering and terminal illness. Patients take bad news in many different fashions such as expression of fear, guilt, anger, denial, and sometimes acceptance. I had the opportunity to deliver bad news to Maria and her loved ones and to see, in a very compressed time frame, how they were able to move beyond the negative feelings of knowing her life was coming to an end and focus on making the most of the time remaining.
I did not expect to provide palliative care on this mission trip to Guatemala. But Maria and her family and the words of Frankl showed me that choosing one's way, especially when faced with terminal disease, is at the heart of hospice and palliative care. Her family members embodied strength for me as a caregiver of the dying in their simple act of not blaming me for delivering bad news. I experienced that family love is universal and transcends country, culture, and language. As a future advanced practice nurse, I will take these lessons when I hold the hands of dying patients, offer comfort medications, and help families to care for loved ones they do not want to let go. From my experience in Guatemala, I have returned a better oncology and palliative care nurse, better teacher and student, and more content in my personal life as a daughter, sister, and a friend. “Dios bendiga usted!”
