“I don’t know how you do what you do.” About 90 percent of the time, this is the response I get when I tell people that I am a hospice physician. “Isn’t it sad to work with dying people all the time? You lose all of your patients… that must be so difficult.”
Having been exposed to the many different ways that people can die throughout my medical training, I see what I do as a massive privilege. I get to help patients die a peaceful and dignified death, liberated from all of the tubes and machines that modern medicine has created to prolong life. Our patients spend their last days surrounded by those dearest to them, hearing the noises of laughter and loved ones’ voices instead of beeping monitors and the voices of medical staff coming in and out of their rooms all day to check vitals, draw labs, and subject them to further (often futile) tests and treatments.
Here’s what might surprise you. Do you know what the hardest part is? When patients don’t die. Yes, you read that correctly.
So often, a patient will come to the hospice inpatient unit and family anticipates a quick death. Several days later, they look at us with longing in their eyes, wondering why they are still waiting. “How much longer do you think it will be?” You can see the mixed emotions and can hear the silent question that no one wants to ask out loud. Often, we will say, “It’s OK to wish that things would end. You don’t have to feel guilty about that.” The sense of relief is palpable. Having never had personal experience watching a loved one die, I cannot even imagine the mixed bag of emotions that this must bring. One of my favorite things to say to families at the bedside is, “You know, it’s OK to feel whatever you are feeling. This is messy, and there are no right or wrong ways to feel.”
Medicine is so complex, and our understanding of the human body continues to evolve in ways that our predecessors likely never even fathomed. However, death is the one process that remains a bit of a mystery. No matter how many signs point to imminent death, we are humbled every single day by patients who linger despite every part of their physiology suggesting that this should be impossible. “We are not in charge of when we leave this earth,” I frequently tell patients’ families as they sit, watching and waiting for the inevitable.
I have recently discovered an even more difficult scenario. One particular patient will stay with me forever. After surviving an attempt to end their life, a complication during hospitalization suggested a terminal diagnosis. They came to our inpatient hospice unit. However, things began to turn in the other direction, and they were not dying as we expected. Each morning, they looked at us with eyes that seemed to beg and plead for a way out. Years of chronic illness and a more recent decline had left them without any quality of life. And we are helpless except to say, “I don’t think this is the end.” And it was sometimes hard to keep my own emotions in check. I cannot even imagine the anguish of wishing that your body would give out on you while watching it do the exact opposite. For so many people, this would be a miracle, an answered prayer. Not for this person. My heart went out to them and their family every single morning when we went into the room and had to face the reality of being “better,” but still not well enough to have any quality of life. Left to languish in a nursing home, watching the hours tick by on the clock all day, angry at what didn’t happen. That person has finally found peace in their eternal home, for which I am so grateful. But that experience will never leave my thoughts. A longer life is not always a blessing or a miracle. And that patient’s spirit will live forever in my memory as the one who taught me this very valuable lesson.
As a hospice physician, I have learned to cherish every moment that I spend with my patients and their families. I am constantly humbled by the strength and resilience of the human spirit in the face of death. And I am honored to be able to provide comfort and care to those who are facing the end of their lives.
While death may be a mystery, I have come to believe that there is nothing more powerful than the love and compassion that we can offer to those who are dying. It is a privilege to be able to bear witness to the final moments of a person’s life, and to help them find peace and dignity in the face of death.
So the next time someone asks me how I do what I do, I will tell them that I am grateful for the opportunity to be a hospice physician. And that while the work can be challenging at times, it is also incredibly rewarding. Because at the end of the day, what matters most is not how many patients I lose, but how much comfort and care I am able to provide to those who are facing the end of their lives.
Lauren Roth is a family physician.