Cancer and the Family: The Silent Words of Truth

Abstract

Sima was admitted to the Internal Medicine Department for fever and abdominal bowel obstruction for the third time in 1 month. She was diagnosed with breast cancer, which had metastasized to the liver and bone. She was treated with a combination of capecitabine and trastuzumab, without response. Sima was a 69-year-old religious Jewish female, who was born in a small town in Morocco and arrived in Israel at the age of 18, already married with two children. Her husband, 75 years old, worked as a handyman until retiring, whereas Sima fulfilled the role of a housewife. Her family consisted of five children, four of whom were married with children and grandchildren. One of the patient’s daughters, a 37-year-old single woman, had been diagnosed with stage II breast cancer 6 months before her mother’s diagnosis. After a lumpectomy, she refused chemotherapy because of her desire to have a child. She only told her oldest brother about her illness; it was their secret. Sima had a close extended family of six sisters and three brothers. Her mother and two of her sisters had died of cancer. As her severe abdominal pain increased, Sima was given low doses of morphine. Transfer to the oncology department was strongly recommended by the treating physicians. After several attempts at having an open discussion with the patient about her medical condition were prevented by the family, the physicians tried to explain in simple terms to family members why Sima should be treated by cancer experts and why it was important for her and for the family to tell the truth about her rapid physical deterioration. Given their history as a high-risk family, the physicians discussed with them the possibility of being carriers of a genetic mutation. During a family discussion with the senior oncology consultant, Sima’s two oldest sons verbalized to the medical team that it was their family and their responsibility alone to care for each family member and to answer only to God. Accordingly, they decided not to talk to their mother or to the other relatives about her condition and prognosis and, consequently, not to transfer her to the oncology department. Following is the transcript of the physician’s (P) and family’s (F) statements. F: “Sorry Doctor, but you do not understand. The entire family—those here and at home—made the decision together not to tell mother the truth about her medical condition. This is the ‘family truth.’ Our decision is not just for Sima. It is for our family, our children, our grandchildren, our sisters’ and brothers’ children....” P: “We want to help your wife and your mother. She needs to understand the importance of her illness and the consequence of it. I can explain to her that it is not her fault or any of the family members’ fault to have cancer. We can help her and also prevent other members from becoming sick.” F: “What do you think the ‘truth’ will do to her children and grandchildren’s future, when they want to start their own families? It will only bring them shame, isolation and stigma. Our family was already cursed by ‘it’ in the past—by the name of your ‘medical truth.’ But just a small part of the family knows. It is a ‘secret.’ And we live with this secret, and now we will also live with Sima’s secret. It is a contagious illness—a curse—and one that can devour the family’s soul. It is an illness of shame and guilt.” F: “There are many things doctors cannot prevent; and, therefore, they should not interfere. They are exclusively in God’s purview.” After several weeks of repeated requests by the family, Sima was discharged. During a final meeting with her physician, the family decided to take her home. The physician was confronted by the strong religious traditions that had shaped the family’s ability to adjust, cope, and function within a strong system of internal support and coherence. According to Sima’s father, brothers, and sisters, knowledge did not always help or provide answers for physical illnesses. In the absence of a cure, silence could protect from pain and shame. Sima was cared for at home by a private nurse who administered morphine. Her husband was constantly at her bedside with his prayer books, sustaining himself with only bread and water. During several of my (L.B.) home visits, he would sing songs of their youth to her, songs of love, as he had done in Morocco. Sima died surrounded by all of her family. Her death was announced with the words, “and God JOURNAL OF CLINICAL ONCOLOGY T H E A R T O F O N C O L O G Y VOLUME 28 NUMBER 7 MARCH 1 2010