How one terminally-ill woman fought for years for the right to die - but then changed her mind

Katie Kim (left) and Freddy Kalles (right) were together for 12 years before Mrs. Kim died of Multiple System Atrophy (Freddy Kalles).
After New Jersey passed euthanasia for the terminally ill in August 2019, Katie Kim was the first resident to publicly declare that she wanted to use the option for the end of life.
Ms. Kim was diagnosed with Multiple System Atrophy (MSA) in 2015, an incurable neurological disorder that affects the body's involuntary functions - such as breathing, bladder control and motor skills. The prognosis for the incurable disease is seven to nine years.
Despite being officially diagnosed in 2015, Ms. Kim's battle with MSA began in 2011 when she first developed symptoms of "restless walking" and trouble sleeping. Doctors at the time diagnosed her with REM sleep disorder - a diagnosis that is sometimes made before a patient is diagnosed with Parkinson's-like disease.
Ms. Kim was then mistakenly diagnosed with Parkinson's, a central nervous system disorder that affects movement, in December 2013 before it was discovered two years later that she actually had MSA.
"She was in incredible pain," Ms. Kim's husband, Freddy Kalles, told The Independent about his wife's condition towards the end.
After receiving medical euthanasia in New Jersey in 2019, Ms. Kim battled MSA for more than seven years, including the time she was misdiagnosed.
For someone in New Jersey to receive medical assistance in the event of dying, the patient must have an incurable disease with a prognosis of six months or less. You will also need to be examined by two separate doctors, have a mental evaluation, and be able to self-administer the drug.
Mr Kalles did not want his wife to die - be it from her incurable disease or with the help of medical help while dying. But he supported his wife as she pondered the end of life option as she was in so much pain.
"I never wanted her to go," he said. “I loved her so much that I didn't want to lose her. But then I loved her so much that I understood that she would be better if she let her go because she was in so much pain. "
"She was afraid to die"
The passage of New Jersey's Aid in Dying for the Terminally Ill Act caught a snag after Supreme State Judge Paul Innes issued an injunction on Aug. 14, just 14 days after the law went into effect.
This restraining order prevented doctors and pharmacists from complying with patients' end-of-life requests, and it did so because Yosef Glassman, an Orthodox Jewish doctor in New Jersey, said the law had hampered his religious beliefs and oath to become a doctor .
Ms. Kim's story, however, found widespread public support when the passage of the law was re-examined in the court. The restraining order was eventually lifted a few weeks later, and citizens were allowed to seek medical assistance as they died if they qualified.
Two doctors and a psychiatrist evaluated Ms. Kim in September 2019 and found that she was physically and mentally qualified to take advantage of the end-of-life option.
At the time, Ms. Kim was bedridden and reliant on an oxygen tank and tracheostomy tube to breathe.
The tracheostomy tube was placed in 2017 after 90 percent of her neck was closed, which affected her ability to breathe on her own. Doctors told Ms. Kim and her husband that she would have to live with the tracheostomy tube for the rest of her life.
Her vocal cords were also attacked by MSA and she lost her ability to speak.
When Ms. Kim went to her second doctor to confirm whether the prescription drug should end her life after advocating for it, she surprised her husband and doctor with her response.
"She said 'no' and I was surprised," said Mr Kalles. "I was shocked."
Ms. Kim later changed her mind a few days later and asked about the drugs on what Mr. Kalles called a "bad day" but ultimately decided to forego the option.
In October 2019, Ms. Kim was no longer entitled to euthanasia because she was unable to physically administer the drug, which is a legal requirement.
"She was afraid of dying when it came down to it," said Mr. Kales. "Even though she had all [qualifications], she chose not to persevere."
The end-of-life option is available in nine states and the District of Columbia. However, because a patient is asking about the option, it does not mean that they are necessarily going to go through it.
According to a 2019 study published on JAMA Network Open, 25 to 33 percent of patients who have been prescribed the drug don't take it. The study analyzed all of the data on patients seeking the end of life option in Oregon, the first state to receive medical assistance in the dying, and Washington state.
"Approximately a third of patients die without taking the medication, which could indicate that the patients just wanted the safety of a way out, but it could also indicate that they died before using the medication or changed their minds about the use have, "said Dr. Daniel Sulmasy, acting director of the Kennedy Institute of Ethics and professor of biomedical ethics at Georgetown University and legal critic, wrote in a written comment that accompanied the study.
"The disease consumed her"
Although Ms. Kim spoke out against the use of the drug, Mr. Kalles said it was further evidence of the law's benefits.
"For those who want to take the drug and put it in the refrigerator so they have it when they are ready, they can," he said. “The law is good for those willing to apply it. I would work for it. "
From October to January, Ms. Kim's health continued to deteriorate as she battled her terminal illness. Her weight dropped to about 70 pounds, with her tailbone and vertebrates sticking out from under her skin.
"She no longer looked like a person," said Mr Kalles. "It was horrible. The disease just devoured your body."
During these months and many years before, Mr. Kalles went to great lengths to improve Ms. Kim's quality of life, including the involvement of a beautician at home, transfer to restaurants, and the hospice at her Fort Lee, New Jersey home to practice putting avoid them in a care facility.
"We're not a wealthy family, but I've done everything I can to make them as great as possible over the past few years," he said.
This included a two and a half week trip to France and Italy and another trip to Israel in the early years of her diagnosis before Ms. Kim lost her ability to walk.
Ms. Kim died of her illness on January 31, 2020.
Speaking to The Independent, Mr Kalles said he believed his wife probably regretted not having given medical assistance while she was dying, given the suffering she had endured in her final months.
"In retrospect, she probably regretted it," said Mr Kalles.
"I loved her, but she couldn't even speak anymore," he added of her final months. “She couldn't even move a finger. She would blink for yes or no. If she didn't blink, it was no. If she blinked it was "yes". It was that bad. "
Ms. Kim was on both morphine and methadone, narcotics that were prescribed to help minimize severe pain, in her final months.
"When she was awake, she wanted to be deaf," he said.
One reason opponents use against medical aid in dying has to do with religious beliefs. Ms. Kim has been identified as a Buddhist and Mr. Kalles is Jewish.
People accused Ms. Kim of "not being religious enough" because she was considering the end of life option, Kalles said. But he had a different perspective on the matter.
"If you don't go through it, you don't know what you'd do," he said. "To see the pain and agony and tailbone through her skin is just terrible ... No one should have to go through this."
Mr Kalles was with his wife for 12 years before she died. The couple married after being misdiagnosed with Parkinson's disease in 2013.
"Half the time we were together, she was sick," he said, "but we had an incredible relationship."
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