I never planned on being a hospice doctor. I had almost no training in end of life care during my Family Practice Residency. I learned about ethics, about patient’s rights to refuse care and to die with dignity, but caring for patients during the dying process was not part of the program.
One of my first exposures to end of life care in practice was when my aunt died of cancer in 2002. I loved my aunt and had fond memories of her but we were not close. I had not even been told she was dying. It was not until the last few days of her life that I knew how grave her circumstances were. It was then that I received a call from my grandmother. She told me my aunt was in terrible pain and the hospice doctor did not seem to be doing anything about it.
I drove to her home in south Orange County to see first hand what was going on. She was moaning in pain, even though there was a nurse present. My aunt was not fully lucid, and I asked the nurse what medications were being prescribed for pain. I was stunned at the response. I did not consider myself an expert on the treatment of cancer pain but I knew she was on a very low dose of morphine. The IV was delivering only 1 mg an hour, a dose so low that pain relief was extremely unlikely. I did not know much about cancer pain but I knew I could do better, so I volunteered to assume the supervision of her hospice care. I instantly doubled the dose of morphine. When her pain continued, I doubled the dose again. I repeated the process every few hours until she was comfortable. She did not achieve a pain free sedated state until the next day when the dose reached 100 mg an hour.
When she died a few days later my grandparents thanked me for taking care of her. They had watched her suffer for days, and I had changed that. The experience also changed me. After caring for my aunt I made myself a promise. No patient would suffer under my watch. I would personally manage every hospice patient in my practice. I knew I couldn’t save every patient but I could darn sure make sure they did not die in pain.
For the last 16 years I have kept that promise, making house calls and responding to calls from hospice nurses anytime, any day. I have aggressively managed pain, increasing doses as needed, committed to the relief of suffering. I have been consistently able to make all my patients comfortable.
Until the last few weeks. I had a patient whose pain I could not relieve.
He had aggressive lung cancer in his left upper lobe. The cancer had grown upwards into the soft tissues of his chest and shoulder, compressing the nerves that supplied his left arm. Nerve pain is the worst type of pain, and his was resistant to everything I tried. Multiple medications, from narcotics to nerve medications, failed to reduce the agony. I consulted pain specialists, palliative care doctors and radiation therapists in search of a treatment that could relieve his pain. I tried everything, hoping that the next medication, the next change in dosage, would prove to be the one that worked. After each adjustment in medication or dose I called to ask him how his pain was. The answer was almost always the same, ten out of ten. One the rare occasions when the pain went down the relief was only temporary. The pain would peak again in a matter of days.
The last week of his life, as the end was clearly approaching, I encouraged the nurse to get more aggressive with his medications. His dose of morphine reached a remarkable 400 mg every few hours, yet his pain remained. I called the best end of life doctor I know, and he recommended a change to methadone. The pain persisted. We added sedatives, hoping he could find a way to rest. He ultimately passed in his sleep. I can only hope that he did so without pain.
I was a heartbroken when he passed. I mourned the loss of man I considered a friend, of my inability to be at his side in his final days (I was out of town), and most of all, the knowledge that he had suffered so much. I was, and am, grateful in the knowledge that his suffering has ended, but find myself wishing I could have done more.
He suffered. He remained positive and kind to the end, but he suffered every day.
His passing makes me acutely aware of the limits of my profession. No matter how hard I try, there will be conditions beyond my reach, diseases I can’t cure and suffering I cannot relieve. It is the reality of life.
Even more, his pain causes me to again wonder as to the purpose of suffering. It is hard to see the good in circumstances so bad, hard to see the hand of a loving God in the midst of such agony. For this patient and I, it was our shared faith that sustained us. We both clung to the hope that his faith assured an eternity free from suffering, and reminded each other of this hope in our times together. We also prayerfully shared the hope that God would somehow, someway, use his last days to touch the lives of those he loved, that God had a purpose.
I do not know what these purposes are or might be. The answer may not come in this life. All I can do is focus on the purpose that I know God has for me right now, which is for me to do the best I can to love his family and encourage them. I can share the story of his faith with others, of the hope that we shared, that others may find similar assurance. And I can do all I can to comfort and care for the other dying patients God brings my way.
- Bart
Thanks for reading and sharing. If you are so moved, consider saying a prayer for the man's family. There loss is profound. Comments and questions are always welcomed. I can be reached via the contact button on this website, or followed on twitter @bartbarrettmd.
