An American Indian Patient Experience

American Indian women in the Southwest United States experience higher ovarian cancer mortality rates compared to White women.¹ High rates of overall cancer mortality and morbidity are attributed to delays and obstacles in seeking and receiving cancer screening or care.^2,3 This commentary highlights several recommendations based on an American Indian ovarian cancer patient's experience during treatment and end-of-life care with the goal of improving care for other American Indian cancer patients.

On September 14, 2018, our mother, a 77-year-old American Indian woman, lost her battle with ovarian cancer. Our mother, like many other American Indians, had multiple comorbidities including anemia, congestive heart failure, asthma, type 2 diabetes, sleep apnea, obesity, and arthritis, among others. She was a widow, spoke English as a second language, had a 7^th grade education, and had not been gainfully employed since 1963. Our mother's comorbidities and socioeconomic status no doubt played key roles in her care and experiences.

First, clinicians need to be prepared, forthcoming, and comfortable with imparting negative information; in doing so, they are adhering to the principle of respect for autonomy, one of the moral principles that apply to clinical practice.⁴ My mother and our family knew that the diagnosis of cancer was serious and were looking to the experts for guidance and information. No matter how negative the diagnosis and prognosis, clinicians need to impart what they know about a patient's disease, its expected progression, and options for care to the patient and the family, including how to prepare for decisions that may need to be made. Furthermore, clinicians can better facilitate communication by identifying the preferences of the patients and family members on how to disclose bad news.⁵ So much confusion and frustration on our part could have been minimized if the clinicians had just been straightforward with us. Something as simple as informing our family that bowel obstruction⁶ is common in ovarian cancer patients would have been quite helpful. We also did not know the potential outcomes of malignant bowel obstruction and that percutaneous endoscopic gastrostomy (PEG) tube placements are a common treatment.⁷ Perhaps, more importantly, we were not aware and were not told that this procedure would make our mother ineligible for further chemotherapy. Although our mother made her own medical decisions, she relied on us for questions, translations, and interpretations of what the health care providers were saying.

Second, we recognize that our medical care systems, especially emergency departments (ED), are understaffed, overwhelmed, and underfunded;⁸ nonetheless, when dealing with a patient with a serious illness like ovarian cancer, every effort should be made to listen to the patient's concerns to obtain appropriate consultations. Through upholding clinical standards of care, the clinicians are adhering to the principles of beneficence and non maleficence.

On May 11, 2018 (a year to the day we are writing this), we took our mother to the local teaching hospital emergency department (ED) at 3:56 p.m. with complaints of shortness of breath, swollen ankles, and a distended abdomen. Our mother waited three and a half hours to be seen (one hour in the waiting area and two and a half hours in the exam room). At 12:30 a.m., our mother started vomiting, and she continued to do so throughout the night. We continuously called for a doctor and the nurse. The nurse did come in several times and we relayed our mother's continued vomiting and at 3:58 a.m., she brought in "a sandwich to settle your mom's stomach." The doctor did not come and despite hearing and seeing our mother's distress, a discharge was initiated.

Finally, at 6:15 a.m., 14 hours after presenting to the hospital, the gynecologic oncologist on call was finally paged, but only after the ED doctor finally came to our mother's room and personally witnessed the vomiting—which we had been reporting since shortly after midnight. After being seen by the oncologist, our mother was not discharged and...