“Doctor,” the woman hesitated, as she struggled to accept what she had been dreading during the many weeks that her father had been in the hospital. “How exactly, you know, does the deed happen? Will he suffer?” As I watched our patient’s daughter struggle with the realization that her elderly father may never recover or be able to return home, I imagined the questions racing in her head, trying to grasp what her father’s final days may look like. Even acknowledging the reality by using the word “dying” or “death” was overwhelming for her, and speaking in euphemisms like “deed” seemed more comfortable. The doctor calmly explained to her what she could expect, what the team of doctors and nurses could do to ensure her father’s comfort, and what support was available to the daughter during this difficult time. While there was little that could be offered from a curative perspective, there was still hope that her father’s final days would be meaningful, memorable, and comfortable.
As a medical student, I only spent two weeks rotating with the palliative care service, yet I was astounded by the many conversations like these which I had the privilege of observing and sometimes partaking in — conversations between doctors, patients, family members, nurses, and social workers. I was touched to see that palliative care truly restores meaning, hope, and beauty to patients and families, and even to healthcare providers, during times that otherwise appear hopeless. For patients suffering with chronic illness and their families, often times each day brings new aches and pains, worsening prognoses, and limitations on what one was previously able to do. In each of these moments, accepting this new reality can be a process of loss and grief. Palliative care providers have the power to carry patients and families through these difficult transitions and transform these moments by redefining hope. These are opportunities to discuss what the patient values and is aiming for, how these goals can best be achieved, and what is most important in the remaining time. These are also opportunities to explore uncertainty in an authentic way, acknowledging that there is much about medicine and illness which we (as healthcare professionals, as patients, as family members) cannot control; however, the things that we can control can be optimized to respect each patient’s goals and values.
In his book Being Mortal, Atul Gawande states, “You may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.” Perhaps the most important lesson I learned during my palliative care rotation is that as health care providers, we have the privilege of empowering patients to reclaim authorship of their lives when they feel their reality, their purpose, and their hope has been stripped away. We can assure them that they will not be alone during life’s difficult transitions. In the midst of uncertainty, we can return the pen to our patients and remind them that they still get to write the final chapters.
