Letting Go of a Loved One

Last December, I woke up in the middle of the night to the sound of many text messages ringing on my phone. My sister in Lahore, Pakistan, was frantically trying to reach me in Connecticut to share laboratory reports and radiological images of our mother. I quickly processed the medical information and had no doubt that she had a terminal pancreatic cancer. It was an unexpected finding even though for the past few weeks she had lost both her appetite and weight, and had developed pruritus and jaundice. The cancer was advanced; the prognosis poor. Knowing I would not be able to go to Pakistan, I felt immediate guilt about not being able to be with her in what was likely to be the last few months of her life.

During the next six weeks, her health deteriorated faster than expected. There were five emergency room (ER) visits and four hospital admissions caused by delirium, infections, and electrolyte imbalances. She even went twice for radiotherapy and waited for up to four hours to get treatment. She consulted several specialists but unfortunately none had knowledge or expertise in end-of-life and palliative care, nor could they refer her to anyone who did. These important subjects are entirely missing in medical school curricula and in the training of physicians in Pakistan, and this knowledge gap is reflected in clinical practice.

Her major complaint during this time was a constantly growing pain in her abdomen that prevented sleep at night. Tramadol was barely helpful and, due to limited opioid formularies and restrictive policies, morphine, the only other opioid available in Pakistan, was extremely difficult to obtain. She finally had a celiac plexus block, but it was helpful for only one week before the pain returned. When she went for her next ganglion block procedure, she became unconscious on the operating table and had to be transported to the ER where she was diagnosed with acute kidney injury and septicemia. Physicians advised admission to the medical floor to help her to stabilize. In the hospital, my sister, the caretaker of our mother, called to discuss this latest development.

Throughout this process, I was struggling with my desire as a physician for my mother to receive the best medical treatment available, and the emotion I felt as a son facing the prospect of losing someone I loved. Were my feelings impeding my judgment? I began to ask myself why are we trying so hard to keep her alive in misery? I collected my courage and began to share my thoughts with my family. Do we really want her frail and tired self to be in the hospital one more time? She may get a lease of one more week on life, but is it worth it that she stays that week in the hospital? I said all this calmly and I hoped in an affirmative tone. I expected strong resistance and even condemnation. To my surprise, there was nothing but acceptance of my thoughts. My sister—who acknowledged that she felt the same way but had been afraid to say so—consulted other family members and all agreed that from now on our mother would not spend any more time in hospitals. At around midnight she was discharged from the ER and returned to her own comfortable bedroom in the home she shared with her three granddaughters.

For the past two weeks, she has rested at home doing what she most enjoys—taking an interest in her grandchildren's education, saying her prayers, and occasionally talking to other women relatives and neighbors. She enjoys sips on her favorite drink, lassi, and sometimes small bites from an ice cream bar or a bite on an orange, without worrying much about her blood sugar. During the day, she lies on her cot in the courtyard and enjoys the warm sun. The whole family provides nursing care and sometimes a visiting nurse helps them. She usually does not complain about pain; for some reason it has subsided. Many times she has pleaded not to go to the hospital again, even if her health falters.

During this time, she has developed occasional high fever, infections, and anemia. On the phone, her primary care physician very strongly recommended that she be admitted to the hospital for appropriate care. Her physician was acting in good faith to the best of his knowledge. He even said that by not taking his advice we were actively planning the death of our mother.

Once again I was feeling under immense pressure, as my family looked to me to help them make decisions. I felt psychologically and emotionally crushed under the pressure and cried bitterly. I tried to stay objective, but sociocultural and particularly religious pressures sorely tested my thinking. However, I stayed firm and resisted admitting her to the hospital. It was an extremely hard decision to refuse medical help, but I was able to calmly reassure my family that it was the right decision. My words had a calming effect on their nerves as well; they probably wanted a validation that this decision was in the best interest of our mother. We agreed to a plan to care for her at home with blood transfusions and a course of antibiotics to treat her infection.

A few weeks ago I felt tremendous remorse for not being able to help my mother in the last days of her life. For me, to let go of a loved one from a few thousand miles away has not been easy. However, I now feel content that even from a distance I am able to serve her, to make the remainder of her life better both for her and her family. I am helping her to live with dignity and to pass away in comfort.