Like most Americans, I believed modern medicine could relieve the most severe pain imaginable. I discovered I was terribly wrong after witnessing the excruciatingly painful, five-week dying process of my younger, 66-year-old sister Elizabeth Martin.
Elizabeth originally received a colon cancer diagnosis four years ago. Then in June, she learned she had Stage 4 liver cancer that had spread to her lungs, spine, kidneys and adrenal glands. She was taken to an emergency room and opted for hospice care after she received a terminal prognosis, meaning she had six months or less to live.
Elizabeth endured seven painful operations when she had colon cancer. When her cancer recurred this year, Elizabeth wanted only palliative care to keep her comfortable. Her greatest fear was dying in pain. She asked her doctor to please help her go to sleep, so she could die peacefully with dignity. He said he could not honor her request.
Why? Because we live in California, one of the many states where aid in dying is an unrecognized and unauthorized medical practice. Aid in dying offers mentally competent, terminally ill adults the option to request a prescription for medication they can self-administer to end their dying process if it becomes unbearable.
However, Elizabeth’s doctor assured me her pain would be managed, her quality of life would be good and she would never be put in a nursing home to die a prolonged death. That was her other great fear. He advised her about the legal option in every state to advance her time of death by voluntarily stopping eating and drinking (VSED). He said it would take four or five days to pass.
Initially, Elizabeth received hospice care at my home. We quickly realized morphine was not even touching her pain, even with increased dosages. She could sleep comfortably only two hours at a time.
I vividly remember my sister crying, moaning and saying: “You promised you would help me.” This vision still haunts me.
She also experienced dramatic personality changes and delirium from her medication. Just a few days into hospice care with a regimen of palliative pills, Elizabeth was wandering around my house speaking to invisible friends.
Elizabeth continued to deteriorate. We decided to admit her into a post-acute care center. She broke out of there the first two nights. She wandered off twice.
Finally, I called a sympathetic palliative specialist who prescribed phenobarbital injections to sedate her. From then on, she received these injections every six hours and remained non-responsive. But it took seven, seemingly endless days without food or fluids before Elizabeth finally passed.
Everything that could go wrong did go wrong. I did not want my sister to suffer at all. Instead, our whole family endured the horrors of seeing her simultaneously experience agonizing pain and morph into a different person.
Elizabeth’s experience was not unusual. In fact, five to 10 percent of all dying patients do not achieve substantial pain relief, according to a founder of the American Alliance of Cancer Pain Initiatives. That means up to 7.5 million of the 75 million baby boomers in my sister’s generation could experience a similarly painful death.
No one should suffer as my sister did from this kind of nightmarish, inhuman, traumatic, and tortuous treatment that harkens back to the dark ages.
That is why I am now a passionate advocate for allowing death with dignity from coast to coast and why I am dedicated to making it happen by working with the nation’s leading end-of-life choice advocacy organization, Compassion & Choices.
Most people share my belief in death with dignity. A new poll by Goodwin Simon Strategic Research shows nearly two-thirds of California voters favor it, including majority support from nearly every demographic group. Polls in other states and national surveys show similarly strong backing for this end-of-life option.
Currently, five states have authorized aid in dying: Oregon, Washington, Montana, Vermont, and New Mexico. I could not give my sister the peaceful death she desperately wanted. Now, it is my mission to ensure that all Americans have this choice at the end of life. Elizabeth deserved that choice. All of our loved ones do.
Anita Freeman lives in Long Beach, California. Watch Anita tell her story at: bit.ly/anitafreeman
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