Case Presentation:
This is the case of a 52-year-old Korean female diagnosed with non-invasive high-grade papillary urothelial carcinoma. Due to unknown reasons, she refused initial tumor resection and opted for alternative medical therapy. Unfortunately, the progression of the tumor worsened to the point of complete obstruction of the ureters with the urgent need of bilateral nephrostomies. A couple months later, for unknown reasons she opted for removal of the nephrostomies. Subsequently, she was admitted to University District Hospital under the services of internal medicine in a critically ill state, with serious kidney organ damage, a non-resectable metastatic bladder malignancy and alarming electrolyte disturbances secondary to obstructive acute kidney injury. After an interdisciplinary medical review among physicians, a general consensus agreed that palliative care was the best medical approach.
The real challenge of this case surged upon attempting to explain the risks versus benefits and final outcomes to a young, non- medically trained, non Spanish nor English language speaker, and with unique Korean cultural idiosyncrasies. Initial attempts of communication through close family members lead to confusion and contradictory decisions easily perceived through the patient’s demeanor. After a while, we began to observe that family members, including the son and daughter were not allowed to serve as communication means between the physician and the patient. As time progressed, we noticed that every discussion had to be done exclusively through the patient’s husbands. This and the clear submissive demeanor presented by the patient raised serious concerns about our ability to respect and safeguard the patients’ autonomy. Fortunately, an objective approach was achieved through a professional Korean translator, who captured the true wishes of the patient. In the end, she agreed to hospice care, do not resuscitate (DNR) status, and opted to let the disease run its natural course. The patient died 10 days after discharged home in the company of her daughter and husband.
Discussion:
Cultural idiosyncrasies present more and more as a real challenge in the medical field and have been a topic of extensive research. Most of the time, we are inclined to focus in the western notion of autonomy. A concept reflected by the doctrine of informed consent, one extensively protected by our legal system, which assumes that individuals should make decisions about their medical management by themselves. Although the principle of self-autonomy is generally adopted by most societies, there is great debate about its generalized implementations. In particular cases, it could be argued that true autonomy is culturally sensitive. In some cases, autonomy may present through the doctrine of informed waiver that enables competent patients to forgo their right to receive medical information and permits them to delegate decision making to others.
Conclusions: Cultural disparities and communication barriers between patients and physicians could represent a real threat to personal autonomy at the moment of critical decision-making. The importance of physician advocacy is fundamental for guaranteeing the individuals capacity for self -determination and self-governance. Integrating medicine, law and ethics as a holistic approach during medical management is vital to protecting the patient’s best interest and end of life directives.