Faced with terminal illness, man chooses end-of-life option
Five years ago, 64-year-old Ray Perman was diagnosed with terminal cancer.
Perman, a designer and consultant who lived in the San Francisco Bay area, had sarcoma carcinoma, a rare and terminal cancer that affects only about 200 people a year in the United States. He also had a common, low-grade, progressive prostate cancer, not unusual for men his age.
The sarcoma caused a large, rapidly growing tumor to form in his prostate and nest against his colon. At the suggestion of his oncology team, he immediately underwent surgery to have his prostate, bladder, numerous lymph nodes and other flesh removed.
At the time of surgery, biopsies showed that both forms of cancer had metastasized, spreading the cancer to other lymph nodes. For a year, he and his doctor decided to wait instead of pursuing further cancer treatments.
A year later, the sarcoma reappeared in the form of a 5-inch, football-shaped, rapidly growing tumor in his lower abdomen, and later 12 quarter-inch and 1-inch tumors appeared in his lungs.
He was told he had two to six months to live.
Perman, at the suggestion of his oncologist, decided to try an unusual combination of two of the most powerful chemotherapy drugs available: Taxotere and Gemzar. The treatment was predicted to have about a zero to 30 percent chance of “doing something.”
The combination was so toxic, Perman said, that it caused his legs to swell, his fingernails to fall off, excessive bleeding, loss of body fluid and neuropathy, a nerve disorder that causes weakness, numbness, tingling, pain and balance problems in the arms, legs, hands and feet.
Miraculously, the treatment worked.
The large, aggressive abdominal tumor in his lower abdomen and the 12 in his lungs shrank, extending his life.
A second round of chemotherapy began about a year and a half later, when more sarcoma tumors appeared in his pelvis, tailbone and rib cage, but this time it had little effect.
“When it became obvious that treatment wasn’t working, that the side effects of the treatment were worse than the disease and that I had only a few months to live, I knew I had some decisions to make,” said Perman. “And I decided to seek only palliative care through hospice at my home and began to investigate the use of the California End of Life Option that went into effect on June 9, 2016, and authorizes medical aid in dying.”
Barbara Coombs Lee, president of Compassion and Choices, a nonprofit organization dedicated to expanding and protecting the rights of the terminally ill, says that in the states where end-of-life options are legal (Oregon, Washington, Montana, Vermont, California and Colorado), the fear of liability has been lifted and patients are able to talk frankly with their doctors about their fears and hopes and how to end life peacefully.
“When you’ve watched someone suffer, you will quickly become a convert for peaceful end-of-life options,” said Coombs Lee, adding that when people don’t have options, they revert to denial.
According to a recent Gallup poll, 69 percent of Americans said they agree that “when a person has a disease that cannot be cured ... doctors should be allowed by law to end the patient’s life by some painless means if the patient and his or her family request it.”
And doctors mostly agree, according to a Medscape survey of more than 7,500 doctors from more than 25 specialties. In the 2016 survey, 57 percent agreed that “physician-assisted dying should be allowed for terminally ill patients,” while 29 percent were opposed. In Medscape’s 2010 survey, 46 percent were in favor and 41 percent were opposed.
Dr. David Grube, national medical director of Compassion and Choices, said he’s found that in states where end-of-life options are legal, patients most often bring up the topic with their doctors. Those doctors, he said, are then ethically bound to be sure their patients understand the parameters of end-of-life laws.
To participate in end-of-life options, a patient has to have a terminal disease with less than six months to live as corroborated by two doctors and has to be psychologically capable and physically able to self-administer oral medication.
“One third of those (in Oregon) who do get a prescription don’t use it, but it makes a huge difference for a person to know that he or she is in control and has the right to self-determination,” said Grube.
For Ray Perman, once it was clear that there was no further viable treatment for the cancer, the key issue became quality of life.
He spoke with his ex-wife and adult children, who had been supportive, and began the end-of-life options process required in California. He got confirmation from two oncologists that he was terminally ill with no chance of recovery; told his doctors of his wishes; and was competent and able to self-administer the life-ending medication.
His prescription was filled.
“I know I am going to die, and this end-of-life option has given me the freedom to enjoy the rest of my life without the fear of losing control over my own existence,” Perman said. “I don’t want to be described as struggling or battling cancer. I am living and breathing and singing and playing music with cancer, and most of all, I’m enjoying the profound beauty of life.”
On Feb. 4, Ray Perman took his end-of-life medication, and surrounded by his family, he died peacefully.
Barbara Sadick is a freelancer.
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