The Importance of Relationships in the Case of Gabriela Rivera
This case represents an increasingly common scenario in U.S. health care settings as many more people from other cultures are surviving to the age of chronic illness. Divergent attitudes toward mortality may come between these patients (and their families) and medical personnel who treat them, without either side having a good sense of how to relate to the other.
Doña Gabriela Rivera is an elderly Latina, who has lived a long life with an "old country" philosophy. Her innate sense of community has been instilled into her family, who have stepped forward to support her in her old age. This is evidenced by the physical and spiritual assistance they have provided, which have allowed her to survive 80 years. Unfortunately in our busy society, negotiation of the medical care bureaucracy requires much more personal advocacy and outright rugged individualism than an elderly person from another culture and her working class children can muster, despite their best efforts.
Chronic disease management is very complicated and, although it's evolving, the pace is slow. At the Community Health Center (CHC), where I practice, we participate in the National Health Disparities Collaborative, which tracks chronic disease care of at-risk populations. This would include those with limited English speaking skills, who commonly use CHC. The approach the collaborative is recommending emphasizes education about self-management of disease and recommends psychological approaches to understanding and improving chronic disease outcomes. In the past year we have instituted an annual Learning Needs assessment that every patient undergoes. Additionally we are in trials of a simple, rapid diabetic screen called the PHQ-9, developed for primary care practices by Dr. R. Spitzer. The collaborative strongly advised this project because of the known correlation between chronic diseases, such as diabetes, and depression, and the under-diagnosing of such affective disorders that too frequently plagues primary care practices.
In Doña Gabriela's case, her busy primary care physician (PCP) likely would not have the language skills to negotiate an effective emotional survey interview. All too often, we resort to whatever family member may be present to help with translation, but this can be a problem. Culturally, Gabriela would feel that communication through her teenage granddaughter about such emotionally laden topics as mortality would not be appropriate. Despite the young teen's likely fluency in English, she would not fully understand her grandma's old country descriptions about "nervios" and anxiety.
In my own practice, I recently lost my oldest patient in a very similar scenario. Over the years I saw the patient, a 96-year-old Mexicana, in my office, she was accompanied by four or five different family members, ranging in age from 13 to 60. I was quite fortunate as she approached "advanced" old age that her family convinced her to be placed in a skilled nursing facility. Certainly the situation was not ideal, but my communication with her family became more regular, as the surviving older children transported her to her office visits.
Doña Gabriela's case became more complicated because, once she became ill, she ended up in an emergency room, further adding to the bureaucracy the family had to negotiate. Increased emotions, new staff, loud machines, and the specter of financial considerations all cloud the environment for learning in the hospital setting. The discussions seem to become briefer, more urgent, and less caring. A transition has occurred. Relationships have changed. Foreign people, save her PCP, are now entering this personal discussion. What in Doña Gabriela's culture should be a family, home-based transition or crossing over has become a sterile, mechanized, loud, cross-cultural schism.
The rest of the family, symbolized by Marcos, who is trying to raise a family in an American manner, seem to be too busy working to have established a relationship with their own physicians, let alone Doña Gabriela's medical caregivers. When staff starts that very delicate discussion about advance directives, Marcos has no solid, literal foundation to base a decision upon. As a consequence, his response is based on abstraction, or worse yet, emotion. This explains his vehement reaction to the discussion about withholding care from his mother. In all likelihood, a large city hospital would require that a clinical social worker come in to improve the communication with the family, but even with this intervention, a new relationship needs to be developed.
My elderly patient's terminal condition, like Doña Gabriela's, was renal failure. Fortunately, and through persistence, I had been successful in obtaining an advance directive from the patient's family member who held the Healthcare Durable Power of Attorney, before her final hospital admission. I was able to see the patient in the Emergency Room the day of admission, and remarkably had sufficient time over the first 12 hospital hours to prepare the family about the inevitability of imminent death from multi-organ system failure. We were able to avoid the Intensive Care Unit, involve the local hospice agency, and afford a home death for my patient with her family. I feel that the understanding I had with her family on the basis of a long-term relationship allowed me to advise them correctly and at the appropriate time. This holistic opportunity is becoming less and less possible in our too-fragmented health care system.
To contextually define relationship, I would include respect for culture, mores, and styles of the migrating group. With the Latino population in particular, efforts to understand and speak the language are most beneficial. The Latino mantra with Arabic roots, "Mi casa, tu casa," or roughly, "I want you to feel comfortable in my home" needs to be extended metaphorically into our medical workspace as we seek to offer patients a "healthcare home" to improve care coordination. I have been impressed over the years how relieved patients become when I greet them in Spanish, politely, as we begin our interview; although I may stumble to find an exact word or phrase, the effort is clearly appreciated. In addition, I have found the nuances of language (including non-verbal communication like body language, respectful intonation, etc.) tremendously helpful in relating to patients of such a high-context culture. And I have found that once a relationship is established, loyalty and trust ensue and allow the best care for all.
John E. Silva, M.D., has practiced medicine in Salinas, California, since 1987. He presently serves as medical director of Clinica de Salud del Valle de Salinas. Silva is also president of Cross Cultural Health Care Concepts, Inc., a health care consulting group specializing in cultural competency within health organizations.