[In Fact] Patients Unable to Decide Life-Sustaining Treatment Cannot Die Without Family (Part 2)

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*Following <Wife Charged with Murder for Removing Husband’s Ventilator, Doctor Charged with Aiding Murder (Part 1)>

*In the past, euthanasia referred to the choice made by a person confirmed to have an incurable disease to refuse life connected to numerous tubes while lying in bed and to end their life. The definition inevitably changes when many people live longer and want to end their lives positively, but the situation where death rarely comes becomes commonplace.

*In 2002, the Netherlands became the first country in the world to legalize euthanasia and established a strict inspection system based on law. Every year, regional euthanasia review committees are obligated to submit reports of the previous year to the Minister of Health. They publish summaries of cases judged not to meet euthanasia requirements or complex cases that met the requirements but were later discussed, to be used for public discussion among doctors and citizens.

*According to a 2019 public opinion survey commissioned by Seoul Shinmun and the nonprofit public research network Gonggongui Chang to the research agency Jowon C&I, 80.7% of 1,000 adult men and women nationwide responded that euthanasia should be allowed in South Korea as well. Currently, South Korea only permits the discontinuation of life-sustaining treatment such as ventilators with the consent of the patient or family when death is imminent. Euthanasia, which artificially hastens death by stopping nutrient supply or directly injecting lethal drugs by a doctor, is not allowed.

*The British think tank The Economist Intelligence Unit developed the "Quality of Death Index," which evaluates the development level of medical systems that alleviate pain for terminal patients and psychological distress for families. In 2015, it ranked 80 countries. South Korea ranked 18th. It was behind advanced countries like the UK (1st), as well as major Asian countries such as Taiwan (6th), Singapore (12th), and Japan (14th). Considering South Korea is regarded as a country with top-five medical technology and health insurance systems globally, this is a low record.

*In 1998, Dr. Jack Kevorkian in the United States sparked worldwide euthanasia debates in a shocking way. In 1990, after being asked for help by an Alzheimer's patient, he went to Oregon, where euthanasia was not punishable, and performed the first euthanasia using anesthesia and drugs inside a parked car in an outdoor park. When authorities suspended his medical license and banned drug purchases, he helped patients inhale carbon monoxide while covering his face to assist death. He helped euthanize about 130 people this way. Kevorkian was indicted six times and stood trial four times but was acquitted each time. In 1998, he helped euthanize a patient with Lou Gehrig's disease, recorded the entire process on video, and released it through the American CBS news program "60 Minutes," sparking controversy. He was arrested and tried for second-degree murder but was paroled in 2007 on the condition he would no longer assist euthanasia. He died in June 2011 from pneumonia and kidney failure.

*Karen Quinlan was the first public and legal case in medical history concerning the "right to die." At 21 years old, on April 15, 1975, she lost consciousness and collapsed. Despite extensive tests, the exact cause was unknown. Quinlan could not breathe on her own and had to rely on a ventilator. Months passed, but she remained unconscious. Experts agreed the chance of brain function recovery was slim but did not declare brain death. Therefore, both the doctors caring for her and medical experts testifying in court concluded that removing the ventilator was not only against common practice but amounted to euthanasia. At that time, modern medicine was just developing and was saving patients in states like Quinlan’s. However, definitions of brain death, vegetative state, and indeterminate conditions were not yet established. Quinlan’s parents initially believed she could recover and asked doctors to do everything possible to save her. But as time passed with no mental recovery, they sought advice from their parish priest, who judged that removing life-support devices would not violate Roman Catholic Church doctrine under the circumstances. The Quinlans requested the hospital to stop all external means keeping their daughter alive, including the ventilator, and agreed not to hold doctors or the hospital responsible for the consequences. However, neither the doctors nor the hospital agreed to stop the ventilator. Her mother, siblings, and friends testified that Quinlan had said she did not want to use special means to sustain life after witnessing the deaths of close friends’ families. It was rare for a 21-year-old woman to leave instructions for parents or doctors in case of unconsciousness. Moreover, most lawyers and medical experts at the time were unfamiliar with advance medical planning. The lower court ruled that the medical staff’s duty to treat and the judiciary’s duty to protect the right to life outweighed the personal rights claimed by the Quinlans on behalf of their daughter. It ruled that parents had no constitutional right to demand the "right to die" for their incapacitated daughter. The Quinlans appealed to the New Jersey Supreme Court, which overturned the lower court’s decision and granted the authority to remove the ventilator. It held that constitutional personal rights include the right to refuse medical treatment in certain situations. They judged that if Quinlan could decide, she would choose to stop using the ventilator even if it caused death. Furthermore, her personal rights took precedence over public interest, thus guaranteeing her right to die. This case was significant in recognizing that terminal patients have a constitutionally protected right to refuse medical treatment and that designated guardians can make medical decisions for incapacitated patients. It helped shift the medical community’s authoritarian attitude toward protecting patient autonomy. Quinlan gained the right to die with dignity, and in March 1976, medical staff gradually removed her ventilator. She continued to breathe on her own afterward, so her parents decided to continue artificial nutrition. She lived nine more months and died at 31 from respiratory failure due to pneumonia in 1985.

*There was another euthanasia debate involving a healthy young woman. Nancy Cruzan had a car accident on the night of January 11, 1983, in Jasper County, Missouri. She was thrown from the overturned car and found lying face down in a drainage ditch. No breathing or heartbeat was detected. Emergency responders inserted a tube into her airway to restore breathing and used drugs to stimulate her heart, but consciousness did not return. She suffered severe brain damage and irreversible oxygen deprivation. Cruzan remained in a coma with no signs of brain function improvement. She breathed on her own but could not swallow, so she received nutrition and hydration via a feeding tube. Despite weeks of intensive treatment, her condition did not improve. She was moved from a rehabilitation facility to her home, cared for by family and a live-in nurse. On October 19, 1983, Cruzan was hospitalized again with pneumonia at Mount Vernon Hospital, where she entered a permanent vegetative state. Her parents became her joint guardians and decision-makers. After four years without improvement, in 1988, they asked the court to allow stopping artificial nutrition and hydration. After extensive testimony from doctors and nurses, the court concluded Cruzan had lost higher cognitive functions and swallowing ability and was in an irreversible state. It ruled that denying the parents’ decision-making authority would deprive legally protected personal decision rights and ordered the hospital to remove the feeding tube as requested. The court-appointed guardian appealed this unprecedented case. The Missouri Supreme Court overturned the lower court’s ruling, holding that the constitution does not protect the "right to die" and that there was no clear and convincing evidence that Cruzan did not want to live in a vegetative state. Furthermore, it ruled that parents had no right to decide for their daughter. The Cruzan parents appealed, and in 1989, the U.S. Supreme Court held a hearing on the "right to die." Justice Sandra Day O’Connor concurred with the majority but added a caveat that the ruling did not grant decision-making authority to guardians in all states. Her opinion motivated federal and state governments to enact laws on advance medical planning. In 1991, the U.S. Congress passed the Patient Self-Determination Act, signed into law by President George H. W. Bush. Subsequently, all states enacted their own laws. Two months after the Supreme Court ruling, Cruzan’s parents requested the Missouri court to hear new testimony from some of her coworkers, who testified that Cruzan had expressed she did not want to live like a vegetable. The judge found their testimony clearly and convincingly proved Nancy’s intent and ordered the hospital to remove the feeding tube. This was carried out on December 14, 1990, and Cruzan died at 33, fifteen days later. This was six months after the Supreme Court ruling and nearly eight years after the accident.

*The U.S. Center for Advance Care defines palliative care as follows: "A specialty focused on improving the overall quality of life for critically ill patients and their families, emphasizing close communication, pain and symptom management, and collaborative treatment. Palliative care is provided by a team of professionals including the primary physician. At some point, it is appropriate for critically ill patients to receive palliative care alongside curative treatment."

*Religious groups and the World Health Organization (WHO) recommend hospice as an alternative to prevent euthanasia. Hospice aims to provide medical, psychological, and spiritual support so that people facing death can spend their final moments peacefully, comfortably, and with dignity. It manages pain and other symptoms to keep patients comfortable while conscious and offers support programs for families. Hospice is a concept of tailored care especially for terminal patients with no chance of recovery. It embraces life positively, views death as a normal process, and employs palliative care that neither hastens nor delays death.

*Modern hospice began in the UK in the 1950s. Most hospices today are run by nonprofit organizations, some independent and some affiliated with medical institutions like hospitals. In the U.S., over 15 million people receive hospice services annually, and it is becoming an indispensable part of the healthcare system.

*Hospice teams consist of doctors, nurses, social workers, pharmacists, clergy, nutritionists, other professionals, and volunteers. Services are mainly provided through home visits. Initially, they meet patients and families to assess their wishes, needs, and financial capacity. Then they visit the patient’s home to prescribe painkillers and nutrients, consult with families, and provide caregiving education. They supply nursing care, medical devices, special foods, and equipment. Depending on patient needs, volunteers and professionals offer various services such as music therapy, reading, errands, and pet care.

*In France, euthanasia is treated as "voluntary homicide." On June 24, 1991, the French Medical Ethics Committee opposed all amendments allowing doctors to perform active euthanasia at patients’ requests. In Germany, Poland, and other countries, euthanasia is distinguished from intentional murder as "requested killing," receiving lighter penalties. For example, in Germany, penalties range from six months to five years, reduced depending on motive. In Denmark, penalties range from 60 days to three years of simple imprisonment.

*Former U.S. President Ronald Reagan informed the public by letter that he had been diagnosed with dementia. "I recently learned that I am one of the many Americans diagnosed with Alzheimer's disease. (Omitted) Unfortunately, as Alzheimer's progresses, families often bear the greatest burden. I only hope there is a way to ease the pain my wife will endure. And over time, with your help, I am confident my wife will face reality with faith and courage. (Omitted) Now I begin the journey toward the twilight of life. A bright dawn will always await America’s future. Thank you, friends. May God bless you all always..." President Reagan was able to enjoy a long life with the best personal care without burdening his family. However, most people with dementia face great mental and financial difficulties. Caring for a person with dementia in the U.S. can cost thousands of dollars per person annually.

*With aging populations, dementia and Alzheimer's are increasing, and more people live long periods in unclear consciousness, raising the need to officially designate someone to make medical decisions in advance. Especially for those without sufficient insurance or savings, serious or chronic illness often leads to losing assets and becoming destitute. Such people exhaust their lifetime savings on medical bills, and families fall into poverty. This is so serious that there is a saying that if one spouse has Alzheimer's, the healthy spouse should divorce to protect their assets. Beyond financial costs, the human cost is immense. Initially, Alzheimer's patients receive care at home, but as symptoms worsen, families struggle. Patients need help with basic daily activities like eating, dressing, and toileting and require constant supervision to prevent accidents. Over time, they need increasing care, sometimes losing control of bladder and bowel and unable to swallow solid food.

*South Korea’s Life-Sustaining Treatment Decision Act limits hospice eligibility to cancer, acquired immunodeficiency syndrome, chronic obstructive pulmonary disease, chronic liver cirrhosis, and chronic respiratory failure. According to academic societies, due to insufficient infrastructure, only 21.3% of eligible patients receive hospice care.

*In June 2022, a bill was proposed in the National Assembly to allow physician-assisted suicide for terminal patients as part of amendments to the Life-Sustaining Treatment Decision Act.

*The Life-Sustaining Treatment Decision Act stipulates that when a patient lacks decision-making capacity, decisions must be made with the consent of the spouse and all first-degree relatives. If none exist, only blood relatives within the second degree, siblings, and other blood-related family members can participate. Without family, it is almost impossible to die.

*Current guardianship systems and trusts are difficult to recognize, have limited rights, and are inaccessible to people without assets, thus offering little utility. The issue of appointing a last-life proxy or guardian for single-person households urgently requires new legislation and policy intervention.

Reference materials: Yoo Young-gyu, Lim Ju-hyung, Lee Seong-won, Shin Yung-ah, Lee Hye-ri, authors, published by Bookcomma, "It’s Not Because I Want to Die (2020)"; Oku Shinya, author, translated by Lee Sodam, published by RH Korea, "Everyone Has Aged but No One Dies (2023)"; Marcel Langeraadeijk, author, translated by Yoo Dong-ik, published by Courier, "My Younger Brother Chose Euthanasia (2020)"; Shin Ah-yeon, author, published by Book and Tree, "Visited the Swiss Euthanasia Site (2022)"; Ronald Dworkin, author, translated by Park Kyung-shin and Kim Ji-mi, published by Rhodos, "The Domain of Life: Abortion, Euthanasia, and Personal Liberty (2014)"; Dan Moheim, author, translated by Noh Hye-sook, supervised by Lee Il-hak, published by Anima, "A Better Death to Complete My Life (2012)"; Kim Hee-kyung, author, published by East Asia, "Aging Solo (2023)" etc.

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