When I first met Joe, he was very weak, fatigued and had almost completely lost his appetite. He was depressed and could not stop thinking of his decline despite, devoting all his waking hours to a cure that evaded him. Now he even needed help just getting out of bed.
So I pulled a chair next to his bedside and sat quietly, saying nothing for a long time. Finally, he started to tell me his story. He was the oldest of four children raised in Massachusetts. To help support his family and lead the way for his brother and sisters, he worked many jobs in addition to going to school. They were poor and life was not easy for them.
Ultimately, he finished law school and entered a law practice. He met his wife while in college and soon married. With their three children, they moved to Maine in 1982, having fallen in love with the small town life and seacoast during a vacation. Once he became established with his job in a new law firm, he joined the local Kiwanis Club, a church and regularly got together with his newfound buddies play golf or go fish.
He was so proud of his children. One son was also a lawyer, another an architect and his daughter worked as an art historian. His five grandchildren brought him great joy and his wife’s love and support was unwavering.
Joe faced a serious illness. After traveling to the ends of the earth and sparing no expense in his quest to be cured at the Mayo Clinic in Minnesota, he knew his best treatment was no longer in seeking all that modern medicine had to offer.
With great hope and anticipation, Joe had undergone treatment after treatment only to be told that they were not working. He never gave up hope and continually pushed for more experimental treatment even after multiple cycles of radiation and different types of chemotherapy.
Finally, his doctors told him that there was nothing more they could do. Joe felt lost and disillusioned from the promised miracles by modern medical treatments. For some time, he felt it was time to give up. He did not know that the focus of his care could now shift from cure to “care.” Until he took his final breath, he still wanted to try to derive the most from life. He just did not know where to go once the Mayo Clinic told him that they could do no more.
Now at 76 years old and in poor health, he felt the support of his friends and family but missed hanging out with his buddies. He was exhausted from the many trips to Minnesota for his cancer treatment. While he was very disappointed in his doctor’s inability to cure him, he was still glad to be home and relax for a while. His doctors could not tell him how much time he had left, but he remained hopeful and prayed daily to God for more time.
A great many patients have difficulty shifting their focus away from the relentless pursuit of miracles. They think that once the doctor says “we have nothing more to offer” that there really is no more to offer. In reality, there is so much more…there is gentle medicine that is very effective and healing of soul and spirit. That is usually when I am called to help.
I explained what I did as a doctor. I told him that my job was to “improve the quality” of his life. I would try to help him feel better physically, mentally and spiritually. Palliative care would aim to help him regain the joys of living so he could do the things he loved most. He was pleased to hear this but was surprised that that really could be the focus of a doctor’s work. Nevertheless, he was willing to see what I could do.
The first step was to consider the 22 different medications he took every day. We reviewed each one and cut the list down to just six that would help maintain his health in a meaningful way. He agreed he no longer needed “that cholesterol medication” intended to prevent a heart attack 20 years in the future.
I suggested adding only one medication: a cortisone tablet taken once or twice a day. I found it worked wonders to give patients a sense of well being, improved appetite, provided more energy and often less pain from the spread of his cancer. I advised him of potential side effects which were few and easily managed when the cortisone was used for only months.
I told him we had “license to throw out all the rules.” He could eat anything he wanted and follow whatever whimsy he desired. He admitted that he was unable to do anything that required much physical strength but he hoped to just hang out with his friends again. Maybe even go fishing.
Within a few weeks on this “gentle medicine regime,” he found that he had more energy, his appetite had improved, and he actually regained some of the weight he’d lost. He required less pain medication and was even enjoying life again.
Sometimes, the most important medical device is a chair, the most powerful treatment is listening, and the most effective drug is patience, while giving patients all the time they need.
Joe was glad to get off the roller coaster of endless treatments and to focus his time and energy on what was really important to him. All he needed was some gentle medicine and permission to follow his bliss. The final chapter of his life was filled with joy, laughter, love and healing of spirit. He was content.
Learn more about Pen Bay’s Palliative Care.
Ira Mandel, M.D., MPH is a Palliative Medicine physician and is medical director of Pen Bay Healthcare’s Hospice and Palliative Care program. He provides compassionate care with a team of health professionals who honor the wishes of patients with serious illnesses. His monthly column seeks to inform the public about choices they may wish to consider. Disclaimer: All people described in this column are not actual patients but are derived from many hundreds of patients Dr. Mandel has treated over many years.