In 1994, my family promised my grandmother, just diagnosed with metastatic cancer, that we would help her—and prevent her suffering—till the end. We promised she would die at home, and that she would not be in pain. But, like popular NPR host Diane Rehm discovered as she cared for her dying husband, we soon discovered how hard it is to deliver on such promises, especially in a time and place where aid-in-dying was and is illegal.
When she became ill, the entire family rallied to care for my grandmother, our matriarch. Eventually, her pain, which had spread to her bones, became impossible to manage. She had was a stoic woman, and admitting to pain indicated how unbearable it had become.
Doctors call this intractable pain: Experiencing or witnessing it is seeing. Despite being enrolled in hospice, with its promises of dignity and relief, issues around opioids prevented adequate pain management. Hospice nurses were not there to hasten her death, they said, or cause addiction. In the case of someone already near death, why does it matter?
On one of her last nights alive, we spent terrified hours trying to get someone from hospice to her home. By phone, we begged her nurses to help us. One suggested that such suffering reflected God’s will. (Not our God, I said.) While we stood helpless and distraught around my grandmother’s bed, a nurse called adult protective services. (more…)