What are the Healthcare and Human Costs of Saving Lives?

     According to hospital protocol, a chaplain is considered “following” a patient, once the chaplain signs the chart and summarizes a report of each visit. If a family meeting is called, the medical team will invite the chaplain to participate.

         I was following, Kamel, a thirty-eight-year-old Iraqi with leukemia. He suffered for many years before being admitted to the hospital for a bone marrow transplant. After the transplant, however, he contracted the deadly graft-versus-host disease.  It is relatively rare, but it is a condition that occurs when the donor’s bone marrow or stem cells attack the recipient. As a result, Kamel showed no signs of recovery from this treatment.  After many months of suffering, his condition had worsened and weakened his heart.

         Since I didn’t speak Arabic, I never had a conversation with Kamel on my visits. I recited the prayers I knew in Arabic, and we connected with eye contact. Kemal would often grace me with a smile of appreciation.  However, after his heart attack, he slipped into a coma. I felt so bad for him, I continued to visit, despite his being unconscious. I would sit for a short time at his bedside and play tapes of Qur’anic recitation.

         The nurses on the floor initiated a family meeting out of concern for Kamel’s severe bedsores that added to his misery due to his long hospital stay. They specifically asked the hospital’s Ethics Committee to attend and confided to them that Kamel’s quality of life was so poor they were tempted to lift the covers and show his family the bedsores, with the hope of convincing them to stop the ineffective treatment. The medical team agreed to bring the family up to date on Kamel’s suffering and rather hopeless condition.

         After one of my visits, Kamel’s social worker invited me to the family meeting.  She also asked me to call Kamel’s wife and health proxy, Fatima. The social worker had been trying to contact Fatima, who had not returned the calls or visited for several weeks. I agreed to call Fatima, hoping she would respond to a call from the “Muslim” chaplain. And she did.

         Fatima spoke to me in strident tones. “I am extremely disturbed by this whole situation. Every day, every single day, my mother-in-law calls me from Iraq, asking about Kamel. ‘How is Kamel? What is happening? Is he getting good care?’”                  

         I listened as Fatima was unraveling at the seams. She worked every day and could not take time off to visit Kamel.  She was “under a lot of pressure” from his mother.  She said, “What can I know about her son’s condition that I can report every day? Honestly, I have to tell you; I don’t want to make any decisions about his care. And I don’t want to be his, whatever it is, his health proxy.”

         I mentioned the importance for her to attend the meeting and stressed that Kamel was suffering. Fatima said, “I trust the doctors to do whatever they can to save Kamel’s life. I don’t see why I have to come to these meetings when whatever happens to Kamel is in God’s hands.” 

         That ended our first conversation, which I shared with the social worker. Meanwhile, Kamel’s condition worsened. At this juncture, no further treatment could cure him, but the medical team needed permission from his health proxy (Fatima) to either perform a minor medical procedure on his lungs or stop treatment altogether. The head nurse asked me to call Fatima again. Thinking of poor Kamel, wasting away in his bed with no end in sight, I said I would.

         “Salaams, Fatima. I wanted to let you know that Kamel’s condition has worsened. The doctors and nurses want to help him but can’t do anything without your permission.”

         “What? Oh, no, no. I do not want to be responsible for his life.  His mother keeps calling me every day. Really, I don’t know what to tell her. What can I do?”

         “Fatima, I want to help. Can you tell me a little more about you and Kamel?”

She was patient enough to stay on the phone with me. She told me that Kamel was from northern Iraq and had arrived in America in the early 1990s. They were living in Quincy, in an Iraqi enclave.

I knew that during the early 1990s, the Iraqi dictator, Saddam Hussain (a Sunni Muslim), had tried to exterminate the Shi’a Muslims in that northern region – his own people.  

         Understanding the importance of her ethnic community, I asked Fatima if someone in her Iraqi community could accompany her to the meeting. After a brief pause, she said, “Okay. I will ask Kamel’s cousin to come with me, but I don’t want to be Kamel’s health proxy any longer.”

         After giving her the scheduled date and time, I hung up with only a shred of hope that she would attend.

         The meeting took place in one of the large patient-family rooms on Kamel’s floor. Gathered at the long table were various medical specialists, the head of the Ethics Committee, Kamel’s case worker, the social worker, the nurse manager, the nurse educator, the head nurse of the oncology floor, and my chaplaincy supervisor.

         While we waited for the family to arrive, the head of the Ethics Committee asked me to explain to the team if there were any possible cultural or religious influences to consider that might affect the family’s decision to stop or keep treating the patient.       

         No single answer came to mind. I explained what I had learned about the family’s background. It was safe to say that as Shi’a Muslims, they had probably fled Saddam Hussain’s genocidal attack in the 1990s, but I couldn’t see how this would affect their decision about Kamel’s treatment.

         Fatima arrived on time with a small entourage. There were two women pushing baby carriages and several men.  Once everyone was seated at the table, the tallest man introduced himself as the “spokesperson.” He said, “The family has appointed me to speak. I am Kamel’s cousin. . . you can say. I am happy to act as his health proxy if that’s okay with you.”

         The committee nodded in agreement, and the doctors described Kamel’s condition, making it clear that further treatment would not produce any positive results. When they finished, Kamel’s cousin launched into a speech about the core principles of Islamic law and the obligation to preserve life.

          “Kamel survived the murderous intent of Saddam Hussain and left his family and his homeland, so he could practice his religion freely in America. As Muslims, we can never give up on a human being. So, I ask you to please continue to treat Kamel.” 

         I tried to hide my disappointment. Fatima remained silent throughout, showing no emotion. I asked the cousin if they had consulted with an Imam about Kamel’s condition and continuing his treatment “when there was no hope of his recovery.” The cousin bristled at my question and declared defensively, “Absolutely!”

         I had asked the question because I wanted the medical team to know that consulting an Imam was the Islamic protocol for such a critical situation. But Kamel’s cousin had taken offense, and I immediately regretted sticking my neck out and appearing like the novice in the room.

         The medical team listened respectfully to the speech and adhered to the family’s wishes without further discussion. Once the family left the room, the team held a brief post-meeting assessment. The head of the Ethics Committee commented that she had heard a holocaust survivor express a similar sentiment and stated, “They would never give up hope, even in the worst situation.”

         Eleven days later, Kamel died after more than one hundred days of suffering in the hospital bed. I was relieved for him. 

         In terms of the mindset of holocaust survivors, this experience was followed by a similar situation. A few weeks later, I was called by a nurse to comfort the adult children of a woman who was on a ventilator. They were three sisters, and they explained that their mother was completely lucid and mentally competent and, by writing a note, had asked her doctor, the head nurse, and her daughters to be taken off the ventilator and allowed to die. Her doctor was an Orthodox Jew, and his reply to the patient and family had been, “Absolutely not. No, Mrs…. You are going to walk out of here!” 

         The daughters were outraged. They wanted their mother’s wishes respected and asked the chaplain to intervene and speak with the doctor. The head nurse, who had witnessed the mother’s lucid request and read the note, was willing to support the patient and her daughters.

         When I approached the doctor, he told me that in his “tradition,” he would never give up on a patient and dismissed any further discussion. However, after a few days, the doctor requested a meeting with the family and the hospital’s Palliative Committee.

         At the meeting, the doctor agreed to “hand over” the patient to a doctor he knew on the committee. Fortunately for the family, per the protocols of the Palliative Committee, the patient was taken off the ventilator, and comfort measures were implemented.

         According to Islamic principles, as stated by Kamel’s spokesperson and in keeping with the Orthodox Jewish doctor’s traditions, saving a person’s life is paramount, no matter the cost. However, during my residency training at the hospital, I thought a lot about the cost of saving a life. In conclusion, I realized that modern medical treatment should not be the only option when its high costs are extracted in patient or family suffering, or in hospital expenses. For another option, I support Palliative care.