For patients diagnosed with mesothelioma the way they handle the diagnosis and the reality that the remainder of their time on earth can be limited, can be a challenge. Like all of us, we know on an intellectual level that we are all going to die, but to face death and dying and make choices on the way we want to live out our final days, can require support and courage. Sometimes, and hopefully all the time, support can be found with family, friends, community and your medical team.
Medicine has recognized that there is a need for specialists to look at the big picture in a patient’s treatment. What is important to the patient? How are the symptoms of their disease affecting the way they live? Palliative care specialists are focused on what is important to the patient, not just in the context of their disease but in the context of their lives.
In the January 3rd, 2017 edition of the New York Times there is an article by Jon Moolallem about B.J. Miller a doctor who also is a triple amputee. The article is about Dr. Miller who is a pain and palliative care specialist, in a part of the article he tells the story of the tragic death of a young mesothelioma patient at the Zen Hospice in San Francisco. The back story of Dr. Miller’s life is woven into the story of how he became a physician, how he handled his accident in college, and his philosophy on living and on how we die. Palliative care focus is on relieving symptoms so that you can lead the best possible life. The article is well-written and worth reading.
The story of the death of Randy Sloan from mesothelioma at the age of 27 at the Zen Hospice is inspiring. By chance Dr. Miller and Randy knew each other as Randy had worked at a motorcycle shop and had worked on specializing a motorcycle for Dr. Miller a year before he was diagnosed with mesothelioma. Randy’s journey with mesothelioma was quick and devastating. He had an aggressive course that robbed him of his life very quickly. Through the Zen Hospice, Dr. Miller, his family, Randy’s death was on his terms. One of the things that Randy wanted to experience was having an ordinary day. A day he did not have to think about chemo, sickness, he was sick of being sick. Dr. Miller explained that the hospice house he ran was the best chance of living out his life the way he wanted to. Although the patient Randy was uneasy he did move in 5 days after his conversation with Dr. MIller. As he got comfortable his friends could be his friends, his mom could be his mom and he could live the way he wanted to.
How one person faced a challenge- his accident and amputations, became a doctor and continues to help other people face their challenges is inspiring. By allowing someone to face death the way they want, on their terms, he has made a difference.
However long a patient’s journey is with mesothelioma or any other disease, palliative care specialists remind all that it is the patient’s choice what treatment he undergoes and when he has had enough.
– Ellie
