She’s 51, a mother and a devout Catholic. She plans to die by euthanasia on Sunday.

Martha Sepúlveda is pictured with her son, Federico Redondo Sepúlveda. The mother, now 51, plans to end her life by euthanasia on Sunday.

By Samantha Schmidt and Diana Durán

It began with a strange feeling in her hand, a weakness in the thumb that made it difficult to hold a pen or grip a computer mouse.

In November 2018, a doctor gave Martha Sepúlveda her diagnosis: amyotrophic lateral sclerosis, the progressive neurological disease known in the United States as Lou Gehrig’s disease. In the months that followed, the Colombian woman lost control of the muscles in her legs — and she knew it would only get worse.

She would cry at night, overwhelmed by the thought. “What happens once I can no longer get into bed or use the bathroom without help?” she would ask her son. “How far am I going to go?”

Sepúlveda started reading about an option that could relieve her fear of what was to come: Euthanasia. Colombia, she learned, is the only country in Latin America — and one of only a few worldwide — that permits patients to end their lives.

Until this year, the option has been available legally only to those who are expected to live for six months or less. On Sunday, Sepúlveda, who considers herself a devout Catholic, plans to become the first person in Colombia without a terminal prognosis to die by legally authorized euthanasia.

Colombia’s constitutional court ruled in July that the right to euthanasia — recognized here in 1997 — applies not only to terminal patients, but also to those with “intense physical or mental suffering from bodily injury or serious and incurable disease.”

The ruling has divided the faithful in this majority-Catholic country. Church officials have described euthanasia as a “serious offense” to the dignity of human life; a member of the national bishops’ conference urged Sepúlveda to “calmly reflect” on her decision and invited all Catholics to pray that God will grant her mercy.

But Sepúlveda, 51, has been resolute in her response to those who question her plan — or her faith.

“I know that God is the owner of life,” she told Colombia’s Caracol News. “But God doesn’t want to see me suffer.”

This South American nation is an unlikely pioneer in euthanasia. An estimated 73 percent of the population is Catholic. Eleven Catholic feast days are national holidays. Access to abortion is sharply limited.

And yet Colombia was one of the first countries in the world to decriminalize euthanasia, and one of only a small number — alongside Belgium and the Netherlands — to extend the right to non-terminal patients. No U.S. state permits euthanasia; 10 states and the District of Columbia allow medically assisted suicide for terminally ill, mentally capable adults with a prognosis of six months or less to live.

Now, advocates here are hoping their movement will spread across Latin America, according to Camila Jaramillo, a lawyer representing Sepúlveda with the Laboratory of Economic, Social and Cultural Rights (DescLAB). Campaigns are underway in Uruguay and Chile. In Peru this year, Lima’s superior court ruled that a woman with polymyositis should be permitted to die by euthanasia when she decides she is ready.

How did a country of Catholics, often led by center-right politicians, become a leader in euthanasia rights?

Eduardo Díaz Amado, director of the Bioethics Institute at Pontifical Xavierian University in Bogotá, traces the development to the country’s long civil war and the violence wrought by drug lord Pablo Escobar. In 1991, in response to the country’s instability, Colombia rewrote its constitution. Unlike its “paternalistic” predecessor, Díaz said, the new constitution expanded individual rights, emphasized “the respect of human dignity” and underscored the separation of church and state.

The document also established a constitutional court to help define these newly recognized rights. Within six years, the new court, now with several progressive judges, took up a case from a plaintiff who argued that “mercy killings” should carry the same penalty as any other homicide.

The court disagreed. Instead of increasing the penalty, it moved to decriminalize euthanasia — becoming the only country to do so on the basis of constitutional arguments, Díaz said.

But it took more than 15 years for authorities to apply the ruling. As political leaders sought to avoid the subject, doctors such as Gustavo Quintana met growing demand for the practice. Known as the “doctor of death,” Quintana is said to have provided euthanasia to close to 400 patients before his recent death.

In 2014, the court ordered the government to issue guidelines so that hospitals, insurers and health professionals would know how to proceed with euthanasia requests.

The movement for euthanasia rights has drawn unexpected allies: Catholic priests. Alberto Múnera, a theology professor and Jesuit priest at the Pontifical Xavierian University in Bogotá, lectures his students on the “exceptions” to the “absolute value of human life” in church teaching. When Catholics follow their own consciences, even when that means choosing to end their own lives, he argues, they will “behave well” in the eyes of God.

Since the government began regulating the practice in 2015, 157 people have died by euthanasia in Colombia, according to official data. One hundred and forty-one had some type of cancer. But many others, including Sepúlveda initially, were denied requests because their illnesses were not deemed terminal in the short term. Last year, a team of lawyers filed a lawsuit asking the constitutional court to extend the right to patients with non-terminal diagnoses.

The court went further, recognizing a right to euthanasia for those with “intense physical and mental suffering.” That was a surprise even for the lawyers, who did not mention mental illness in their complaint. And it drew immediate rebuke from church leaders and conservative politicians.

“It opens up the possibility for people who are depressed or simply don’t want to live anymore,” said Sen. María del Rosario Guerra, a member of the Democratic Center party of President Iván Duque. “We are promoting a culture of death

Bishop Francisco Ceballos, a leader within the national bishops’ conference, has criticized news outlets here for depicting Sepúlveda “heading toward death with so much joy.” He has emphasized the church’s support for palliative care as an alternative to euthanasia. “We believe that death cannot be the solution to suffering and pain,” he said.

The court’s ruling in July came less than a month after the death of Yolanda Chaparro, a 71-year-old Colombian woman with ALS who had requested euthanasia a year earlier but was rejected because her prognosis was not deemed terminal. She continued to deteriorate until she could no longer breathe without oxygen, struggled to move on her own, and lived with a fear that she could drown in her own saliva, according to her daughter. She was granted her wish to end her life in June.

Shortly before her death, Chaparro sat down with her relatives to explain her decision. “For me, to live is to fly,” she said, in an interview recorded by relatives. “To live is to walk, to create. To live is to commit to dreams you’ve formed your whole life. So seeing that each day everything is more difficult … all of that is over.”

When Federico Redondo Sepúlveda learned of the court ruling, he broke down in tears. The 22-year-old law student, Martha’s only child, had spent months helping his mother file a request for euthanasia.

“I didn’t think it would happen so soon,” he said. He had tried to find the strength to support his mother in what for him has been an excruciating choice.

“She kept saying the same thing, that if I loved her then I would support her,” he said.

They have spent his mother’s final days mostly watching Netflix — a joy she discovered during the coronavirus pandemic. They’ve watched and re-watched “The Pianist,” “Forrest Gump,” and “The Shawshank Redemption,” movies that remind them of years past.

The family doesn’t have special plans for his mother’s final night Saturday. She hopes to spend it as she always does, by going to bed early. She plans to end her life at 7 a.m. on Sunday, when she would normally be heading to church. Her son will be the only person in the room with her, he said.

Her body is to be cremated immediately. Federico plans to spread her ashes in the Caribbean Sea, off Colombia’s northern coast. But first, he will join with their family, her remains beside him, and take the Eucharist

Complete Article HERE!

Euthanasia Du Jour?

Doctors’ Hidden Truth On End-Of-Life Care

Amid an ongoing public debate in France on end-of-life palliative care, doctors tell Le Monde how they secretly help their patients die.

By Laetitia Clavreul

As the president of a doctor’s union says of treating the chronically ill, “We’ve all pushed the syringe” at some point in their careers.

Death is a topic that doctors rarely discuss among themselves. Too heavy, too personal. Instead, these things tend to be between attending physicians and their patients, who they follow until their very last minutes.

French President François Hollande has promised a draft bill on end-of-life assistance, and the role doctors play for chronically ill patients is at the heart of the debates. Some have agreed to tell us about their practice, whether anonymously or using their names.

“Doctor, will you help me?” The question is sometimes asked when the end of life is not that near. “I tell them that I am not the right doctor for that,” says doctor O., who has been a general practitioner in the west of France for the past 30 years. “I don’t claim to be the one to decide.”

But when the final moments truly have arrived, it’s a different story. He helps patients “go” when they are in pain, when life has become unbearable. Often, he says, “They do not voice any request. But when we touch their forehead with our hand and they are looking straight at us, they tell us with their eyes: ‘I’m ready.’”

He recalls a Saturday night at 11.30 p.m., when an entire family was holding vigil for a mother in pain and asked him to “do something,” because that was what she wanted. He repeated that he was not allowed to, that he could only increase the morphine dosage. “But I knew what the outcome was going to be,” he says.

Dr. Stéphane Pertuet, from the northern French town of Barentin, says a patient once asked him, “You’ll do what’s necessary, won’t you?” The patient was telling him he was scared. The doctor comforted the dying man, and said that he would.

Pertuet remembers a former military man, who made him promise not to hospitalize him “at the end,” and to do “what’s necessary” so he could die “in a dignified” manner. One day, when he was in a state of shock, he told the doctor, “Finish me.” “Of course, I didn’t do it,” Pertuet says. “But I made sure that he wouldn’t suffer by setting up a graded treatment, aware that it could kill him. If he felt that I was hesitant, it would have been a fiasco.”

Doctors use various drugs, all of them legal, to help ease a dying patient’s pain and usher them peacefully into death. Curare or potassium chloride would immediately lead to the death of the patient. But using those drugs would be a crime. What doctors can legally do is prescribe sedation to relieve suffering and agony. They can mix anxiolytics, morphine or other analgesics, leading to respiratory depression and death a few hours or days later. What the law forbids is “intentionally” causing death.

In the patient’s shoes

Words are important, says Dr. G., a general practitioner in southeast France. “Yes, I help people die,” he says. “Killing is different. It’s an immediate action. Increasing the dosage has nothing to do with euthanasia.”

When Pertuet arrives at the home of a patient he is treating, he doesn’t necessarily have a preconceived idea of what he is going to do, he says. “I suppose I sense that I will lead the patient to death, but I have no other choice. Otherwise, the patient suffers.” He tries to step into the patient’s shoes, taking into account his personality, culture and religion.

Bernard Senet, a retired physician working as a medical officer at an association advocating legalizing euthanasia, has worked in private practice and also in a palliative care environment. When patients are suffering agonizing pain, Senet says it is his duty to help them.

“When the patient is uncomfortable despite the morphine, we open up the automatic syringe and it all goes,” he says. Once or twice a year over the course of his career, he has found himself in this kind of situation, and it is no doubt the case for other physicians too.

In fact, he knows it is because he often receives calls from fellow doctors asking for his advice. “I’m not an exception,” he says. “For fear of judges, the others don’t want to say that we do it, in appropriate conditions, and that it’s never easy,” he admits. “But from the moment you stop the treatments, you know you are sentencing the patient to death. From the moment you dispense Hypnovel at the hospital, you know you will cause a respiratory arrest.”

“I assist until death”

Not every doctor is willing to assist their patients in death, but for the ones who do, they regard it as part of their job. “I remember my first assistance very clearly,” Pertuet says. “It is the quintessence of our commitment. It is then very important to be a good technician and a very good psychologist. But it always leaves a mark.”

Dr. R., a general practitioner specializing in palliative care near Paris, says he assists “until death, because death is part of life.” But recently, a seriously ill patient under 70 years old asked him if he would agree to give him “an injection.” Even if the law changes, the doctor says he would never go that far.

The law, in fact, is not necessarily at the heart of everyone’s concerns. Pertuet hasn’t really altered his handling of these cases over the years, he says. “I watch the debates between experts with amusement. They hide behind religious beliefs, sacrosanct ethics and palliative care. But for me, the more I think about it, the less sure I am.” What is important “is what they never talk about: humanity, technique, the doctor-patient bond.”

The French Leonetti legislation, passed in 2005, has made doctor G. more relaxed. “We used to be limited on a legal basis,” he says. “We couldn’t handle therapies when we knew we were at a lethal level.” Even the French medical college, which he characterizes as typically “quite retrograde,” last year announced its support of terminal sedation for patients with insurmountable pain, calling it “a duty of humanity.”

“It’s not a step towards euthanasia,” insists Dr. Jean-Marie Faroudja, ethics head of the national medical college council, pointing out the necessary commitment to the Hippocratic Oath. “Killing must remain prohibited.” He acknowledges that “between causing death and putting the patient to sleep until it arrives, the difference is narrow.” But it exists.

Complete Article HERE!

Assisted dying around the world

By Bob Roehr

Assisted dying goes by a variety of names from country to country.1 These are often chosen to shape public discourse, and the weight of different factors varies by country.

The practice is less likely in places and cultures that look more to family and society to make healthcare decisions, often to the point of shielding a patient from knowledge of a diagnosis and treatment options. Even in the western world, it’s not that long ago that patients were sometimes not told that they had terminal cancer.

The cost of care is often part of the debate: in many high income countries the government, or patients themselves through insurance, bear most or at least part of the direct costs of care. Religion is another: some religious groups are among the most potent foes of the right to die, and in countries where such groups provide a significant part of medical care they can wield an effective veto over such legislation.

Australia

The first person in the world to die under a specific law on the right to die was Bob Dent, in 1995 in Darwin, northern Australia. Two years later the Australian parliament took the highly unusual step of overturning the territorial law that had allowed the procedure.

In 2017 the state of Victoria passed a law on voluntary assisted dying based on the “Oregon model” that had emerged in the US (see “United States” below). Western Australia passed a similar law in 2018 that is now in effect, followed more recently by Tasmania (in 2019, to take effect in October 2022) and South Australia (in June 2021, with regulations and a start date yet to be decided).

Advocates expect that Queensland will vote for similar legislation in September 2021. New South Wales, which has about a third of the country’s population, “will be a tough nut to crack” because of the strong influence of religious forces in the state, says Marshall Perron, a political leader who sponsored the initial legislation in the Northern Territory.

Canada

The Medical Assistance in Dying law2 in Canada sprang from a 2015 high court ruling that assisted dying was a basic human right under the Canadian Charter of Rights and Freedoms, which forms part of the national constitution. It ordered the legislature to decriminalise assisted dying and create an implementation structure, much of which would reside in the provinces as administrators of healthcare. The initial 2016 law faced immediate legal challenges for being too restrictive, and in 2021 the court again referred the matter back to the legislature for remedy.

A major element of the new law is allowing medical assistance in dying on the basis of mental health issues. It gives jurisdictions until March 2023 to create regulatory mechanisms for requests based solely on mental health issues.

Colombia

In 1997 the Colombian Supreme Court set out the rights of a terminally ill person to engage in voluntary euthanasia. The health ministry issued guidelines in July 2021 that require a voluntary request, which may be through an advance directive, and a procedure for review.

Germany

The situation in Germany over the past decade has been confusing. In 2014 its courts declared that “passive euthanasia” was legal, but a year later the legislature also criminalised “assisted suicide,” with little clarity over the difference.

Then in February 2020, Germany’s highest court ruled that a person’s right to self-determination allowed for the right to die. As a part of this, assistance is allowed for altruistic motives, but concern has focused on assisted dying becoming a treatment option that could become a business.

How all of this will be regulated is still subject to much debate and may depend on the outcome of federal elections this autumn.

Japan

The legal status of both euthanasia and withholding treatment at the end of life are ill defined under the law in Japan. In July 2020 two doctors were charged with murder for helping a woman with amyotrophic lateral sclerosis to end her life.

The pair were later separately charged with murder for the earlier death of one of the men’s fathers, who had been terminally ill. The arrests and pending trials have revived discussion of a “death with dignity” bill in the legislature.

Netherlands

In 2001 the Netherlands passed a law that broadly allows voluntary euthanasia. A doctor must certify that the patient is suffering “unbearably without hope” from a physical or mental condition. It is allowed for people as young as 12 years of age. Regulations have been tightened to assure that patients are competent to make such decisions.

Neighbouring countries have since brought in similar policies: Belgium followed in 2002 by legalising voluntary euthanasia but not physician assisted suicide. In Luxembourg both practices have been active since 2009 despite initial royal objections.

New Zealand

The End of Life Choice Bill was enacted by the New Zealand parliament in 2019 and ratified by a public referendum in 2020, with 65.2% of the vote. The bill will take effect in November 2021.3<

Portugal

The legislature in Portugal passed a bill in March 2021 permitting assisted dying, and the president asked the constitutional court to rule on its legitimacy before signing it. However, the court found the measure imprecise and thus unconstitutional. The legislature is considering revision of the bill’s language to fall within guidance offered by the court.

Spain

Since 2002 a series of laws and public cases in Spain have expanded the rights of patients to refuse and discontinue treatment, dubbed “passive suicide.” Facing opposition from the Catholic Church and many medical professional organisations, but with overwhelming public support, the legislature passed a law allowing “physician assisted suicide,” which took effect in July 2021 and is largely modelled on the Netherlands’ approach.4

Sweden

A 2015 law gave patients in Sweden the right to participate in any medical decision, while physicians may not legally object to any procedure, including assisted dying. However, the legal ambiguity arising from a lack of regulations has contributed to there being few assisted deaths in the country.

Switzerland

Switzerland has no specific legislation outlawing or permitting assisted dying, but the practice has generally been allowed since 1937 under the Swiss Criminal Code, which allows for it under a person’s constitutional right so long as the people providing the assistance don’t have “selfish motives.” A physician must evaluate the candidate to assure soundness of mind, but there is no requirement of terminal illness.

Switzerland remains one of the few countries that allow foreigners to gain access to assisted dying, and a handful of groups have emerged to assist locals and foreigners in the process. One established provider says that about 60% of its foreign users come from Germany and 30% from the UK, paying $7500-$12 000 (£5440-£8700; €6330-€10 120) depending on the services provided.

United States

Assisted dying (or “medical aid in dying,” as it’s generally referred to in US legislation) came into effect in the state of Oregon in 1997.

“The laws require the person to be an adult, mentally capable and/or have a terminal prognosis of six months or less, and to self-ingest the medication, so they can change their mind at any time in the process,” says Sean Crowley, a spokesman for Compassion & Choices, which led the struggle in Oregon and is a leading voice nationally.

The Oregon model has been followed in eight other states—California, Colorado, Hawaii, Maine, New Jersey, New Mexico, Vermont, and Washington—as well as in Washington, DC. A Montana court struck down restrictions on assisted suicide, but no implementing regulations have been created.5

Complete Article HERE!

Of Death and Dignity

By Michael Dunn

In just four years, four States have passed ‘voluntary assisted dying’ laws to permit doctors to help terminally ill patients kill themselves. In the two remaining States, Queensland and NSW, similar draft Bills await debate. ‘Dying with dignity’ rallies the supporters of these laws. Is it dignified to kill oneself? Is dignity lost in struggling on in pain and suffering? The story of an elderly woman who died from Alzheimer’s dementia offers some answers to these questions.

Of Alzheimer’s, an American doctor wrote more than thirty years ago, in a popular book about dying: ‘There is no dignity in this kind of death’[1]. If you had chanced to walk into the elderly woman’s room, when she lay dying, you would have seen her wasted body unable to eat, drink or move herself, heard her speechless, ragged breathing, and looked at her static eyes. No dignity was on display.

Five years earlier, she lost her wedding and engagement rings. She had worn them every day of her married life. The loss distressed her. They were precious gifts from her husband and a part of who she was. She suffered an indignity. People would look at her left hand and see her as unmarried, or as something worse if they knew she had a husband whose rings she had discarded. Her husband, though often quick to anger, suffered the loss with surprising forbearance, as though extending his dignity to her, to compensate her loss.

Time passed, and she noticed how much longer and more complicated the routines of her life became. She had not read yesterday’s newspaper by the time today’s arrived. She had to go the hairdresser’s just when she was supposed to be making a family lunch. At afternoon tea, her leaden cake bore witness to the ingredient she forgot. Odds and ends of food inhabited the fridge and supermarket plastic bags ran riot in the garage. Disorder was creeping into the home. Suddenly, one Sunday lunch she passed out in her chair. In hospital, they cured the infection that overcame her, but her mind grew noticeably worse. Still competent, she gave her husband and her son powers of attorney and guardianship. This gift of trust, made as her own strength weakened, bound her husband and her son together in a duty for her care, a dignified and elevated role.

Her husband’s spirit steadied her, but his physical strength declined. Some months later, he suddenly became fevered and delirious. She called the ambulance, and they took him off to hospital for treatment. Being alone unbalanced her. Her phone calls became confused. When going out, she kept forgetting her keys and her next-door neighbour had to rescue her. The couple had to move into a care home. She could no longer fill her office as keeper of the home. She lost another dignity.

A photo taken on the moving day shows her, grave and seated, in her strange new room. She grieved at what was happening, but did not fight against it. She missed the freedom and the power to cook and clean. The organised activities and outings meant nothing to her. She wandered, sometimes going into other people’s rooms and taking clothes to wash. One Saturday she wandered out the entrance hall, and ended up confused but in the park she loved to walk in near her former home. A passer-by took her to her former next door neighbour’s place, and the neighbour drove her back to the care home. From that day on, they marked her as a ‘flight risk’, a potential escapee, another loss of standing.

The dignified person bears themselves in a manner that fits the occasion. Every six weeks or so, the family went out to a restaurant. At first, she took care over her appearance and put on her good clothes. Then dressing became confusing, and she mixed her clothes and wore two skirts at once. When going out, her son became her dresser, restoring the dignity she could not put on for herself. A year or so later, going to a restaurant disoriented her so much she could not eat her food. In time, even in the care home, she needed to be fed with all her meals, like a young child.

Her conversation splintered into fragments — some light and meaningful, others random or irrelevant. She soon stopped speaking altogether, a daunting silence that turned away her visitors. Her son recalled the story of a woman in a coma and her daughter who read aloud to her. When the coma ended, she told her daughter that the reading was the thing that kept her sane. So the son read aloud the poems his mother used to read him, and her husband read her stories which he always did so well. The reading broke the silence with a laugh or smile of recognition. She seemed lost to the world at large, but stayed present to her family and her carers. They gave her what she needed — the rhythms of her language, stories in which to dwell and a regularity of life.

The brain instructs the body, so as it perishes the body fails. Even in her eighties, she had walked everywhere. Seeing her smile could not repress the jolt of noticing a carer on each side walking her along the hall. Some months later, she could not walk at all, and spent all day in a chair and bed combined, made for those who cannot walk or hold themselves erect — a ‘princess chair’ they call it to dignify a sad decay. At the end, her epiglottis, guardian of the windpipe, no longer knew the difference between air and food. She could no longer eat or drink without the risk of catastrophic choking.

The vigil began. Morphine eased her pain, gel soothed the dryness of her mouth and nurses turned her body.  Her husband and her son watched and waited. On the sixth day, her husband asked: ’Does she even know I’m here?’ ‘Yes’, the senior nurse replied. ‘How do you know?’ he asked askance. ‘When you spoke, the rhythm of her breathing changed and she became relaxed’, and so it had. On the eighth day, in the morning, she looked at her husband and her son with a glance they knew was hers. In the silence one can miss these little signs the dying person gives to those they love.

Her suffering and destitution gave birth to a community of care and dignity around her. When lost, her neighbour took her in and drove her home. In care, they nursed and washed and fed her. Her husband loved and cherished her, as he promised at their wedding. Her son sought to honour her and guard her interests. A volunteer brought in a friendly dog for her to stroke. A man who cleaned toilets and bathrooms said: ‘The residents are our friends; although we are sad, because we know we will lose them’. In the last days of her life, individual carers would be found sitting quietly with her, sometimes holding her hand.

Now, a darker and despondent care exists for those whose illnesses are terminal. Doctors may prescribe and even carry out the fatal steps to kill their patients, if those patients ask them. Subject to detailed restrictions and procedures, the laws declare this is no crime. Where the laws mention ‘suicide’, it is only to declare its non-existence in this gloomy form of care. The death certificate issued to the family and executor must not record the patient died by their own hand, or with ‘assistance’, but from the disease that was expected to kill them. This untruth ‘protects the privacy of the person (and possibly their family too)’[2]. This privacy also hides the doctor’s role. Dignity means ‘worthy of honour and praise’. Dignified acts are known and celebrated, not kept in shame and secret from the public record.

Helping someone die begins with seeing suffering and wanting it to end. The vet shows mercy who kills a badly wounded animal when no treatment will succeed. The doctor shows mercy who gives morphine to the patient to relieve their pain, despite foreseeing, though not intending, that the drug itself will hasten their patient’s death. If the patient pleads for death and is dying anyway, the extra step of helping of them might seem merciful as well. This extra, fatal step abandons what is just and true. Death is not a personal entitlement. Life arrives without permission and gives no warranties against illness, pain or suffering. We cannot judge our own life’s worth. We have no right to implicate a doctor in a pact of suicide.

Nobody knows in advance what strength they may find in a contest. In many cases, those who seek ‘assisted dying’ do so out of fear. Tasmanian law acknowledges this fact. It says a person is suffering intolerably if, among other things, they persistently suffer from ‘anticipation of the suffering, or expectation, based on medical advice’[3]. Agony, against which the body fights, comes from the Greek agonia  — a struggle for victory. Fear and anguish are the enemies of life that urge sufferers to kill themselves. We are not competent to judge those who kill themselves, but feel a sadness in the life not fully lived. We dignify the runner that completes the race but dies exhausted at its end; we sorrow for the one who quits mid-course. Suicide silences life’s calling and shuts the book, abandons hope and blows out the candle.

Healing and relief from pain, and a promise to do no harm, united the community of medicine. From specialists to cleaners, everyone assumed a unity of purpose.  Together, they pushed death back and moderated pain. Having done so much together, this unity, once reserved exclusively for healing, is broken — causing death is now declared a healthcare practice. A new principality is born, an independent sphere of power, carved out for helping people to their deaths. It brings within its scope doctors, nurses, psychiatrists, pharmacists, those who issue, receive and dispose of fatal drugs, and even interpreters for non-English speaking patients. Public servants issue permits, register practitioners, authorise their training and organise a community of assisted dying practice[4]. Advocates of assisted death get appointed to its boards and offices. Over the past four years, each State has broadly followed the model in Victoria, from 2017, but with some variations that generally made the rules less strict in various ways[5]. The downward slope has slipped.

Let us return to the woman dying with dementia. In her agony, she struggled tenaciously for victory over death. At times she sank so low, her death seemed imminent and then she struggled up for air again. To share in someone’s agony takes on a share of their distress, of their sinking down and surfacing again. Why could she not depart in peace? Could a nurse or doctor help her death along and spare her struggle and the grief of those who mourn? Sharing in distress can confuse one’s motivation. For whom is mercy truly sought: the patient or the keeper of the vigil? The nurses and the doctor owe their duty to the patient, and never, until ‘assisted dying’ was made law, could seek the patient’s death. So they saved the keepers of the vigil from complicity in death. Nobody knows why the dying person struggles on — perhaps they have some task to finish, perhaps they want to show us something or perhaps their destination is not quite ready.

Before dawn on the tenth day, the woman died. The son took the news to his father. The father hugged his son, and all that had ever divided them was reconciled. They went to her room to see her. She looked serene at last. Her husband, not a churchgoer, recited the Lord’s Prayer. A disengaged observer might only see her losses, and say she lost her dignity. Those who loved and cared for her saw much more, because they knew her ways and saw her signs. They lent her strength and dignity which she returned to them in full, a thing no suicide could ever do.

Complete Article HERE!

The Dignified Exit

The Inevitable: Dispatches on the Right to Die

By Elena Saavedra Buckley

AS MEDICAL AND technological advances have made our world safer, it’s become much harder to kill oneself painlessly, even if one intends to. Asphyxiation by carbon monoxide, usually done by inhaling car exhaust in an enclosed garage, has gotten harder as the automobile industry’s emissions levels lower over time. Ovens have followed a similar trend, with natural gas models outplacing those that run on coal. The shift is especially true when it comes to medications. Use of Nembutal, the barbiturate that killed Marilyn Monroe, declined in the second half of the 20th century and was eventually discontinued in the United States, leaving available fewer substances that can cause a nonviolent overdose. (Other lethal medications have multiplied in price, sometimes threefold or more.) For those who desire “rational” suicide — done after consideration rather than, as is more typical, spontaneous despair — options are limited outside uncertain and gory methods. We live more protected lives than we once did, but, in exchange, the ability to end our lives peacefully is kept out of reach, like a bottle of recalled pills.

The subjects in Katie Engelhart’s essential, vulnerable book, The Inevitable: Dispatches on the Right to Die, question these barriers. Since the mid-20th century, conversations on assisted suicide have grown, as laws allowing it have passed around the world. In popular conversation, Engelhart writes, people who use assisted death usually fit an archetype: elderly, secular, white people, with terminal diseases and supportive families, take advantage of rare right-to-die laws soon before their likely natural death. They throw back a lethal cocktail of liquid drugs under the watch of a doctor and their loved ones. They fall asleep, and, within a few hours, their heart stops. “While most reporting about the so-called right to die ends at the margins of the law, there are other stories playing out beyond them,” Engelhart writes. “Didn’t I know that whenever the law falls short, people find a way?”

Engelhart, a former reporter for VICE and NBC News, profiles two rogue doctors and four subjects who seek assisted death in a variety of illicit shades: an elderly British woman who feels she has lived the life she wants; an American woman in her 30s with worsening multiple sclerosis; an American woman sinking into dementia’s abyss; and a 25-year-old Canadian man with complicated, severe depression. Engelhart profiles them as they either seek help with suicide, through mail-order chemicals or services overseas, or challenge the limits of their country’s laws. Engelhart is ever thoughtful; the approach can fall flat during meetings with secondary doctors or interviews with philosophers (summoning more than one description of office shelving), but Engelhart’s main portraits, and her careful relationships with her subjects, powerfully animate her central questions: what is dignity, and what does it mean to die with it?

As she chases dignity’s meaning, Engelhart meets early dead ends. Some of her interviewees brush off the question, saying that dignity amounts to feeling respected, making their own choices, and, mostly, being able to wipe their own asses. (“When someone has to change my diaper, I don’t want to live.”) But if dignity can be understood at an individual level, it is twisted by the systemic factors Engelhart describes that lead to death wishes: the specter of melancholic senior living facilities, unsuccessful mental health treatments, and impossibly expensive health care. The Inevitable is international in scope, but these pressures loom largest in the American medical system. When visiting Brussels, Belgium, Engelhart speaks to Wim Distelmans, an oncologist and euthanasia proponent, about whether assisted death should be offered to more people in the United States. “It’s a developing country,” he tells her. “You shouldn’t try to implement a law of euthanasia in countries where there is no basic healthcare.” A reader wonders, then, what it means to assert dignity within circumstances that do not do the same.

¤

Voluntary euthanasia may appear in Thomas More’s vision of Utopia, but doctors have long struggled to write it into their job descriptions. In 1995, the American Medical Association stated that “[p]hysician-assisted suicide is fundamentally incompatible with the physician’s role as healer,” and the National Hospice and Palliative Care Organization opposes the practice. The membrane between palliative care and assisted suicide is thin, though — in some cases, tending to fading life with pain-relieving drugs functions as a kind of assisted death, albeit a slow one. Engelhart roots this dissonance in the 20th century’s effort “to conceptually transform old age from a natural phase of life into a stage of disease,” she writes, “and, by extension, something to be defeated, rather than embodied or endured.”

Assisted suicide has been legal in Switzerland since 1940, and some other European countries, like Belgium, have allowed it since the 1990s. (Parts of Australia and Canada allow it, too.) Its American history is piecemeal. As health-care prices climbed sharply in the 1970s and ’80s, a string of high-profile cases of young white women on life support drummed up public conversation. Then, in 1994, Oregon became the first state to legalize assisted death. Other states followed Oregon’s strict parameters: a patient must be terminally ill and have six months or less to live, and they must have the mental capacity to make the decision, as determined by a doctor. On their chosen deathbed, a doctor will give them the lethal barbiturate, but they must lift it to their own mouth in a final, performative gesture of agency.

Opponents of assisted death have long argued that the practice will fall down a slippery slope of exploitation. Poor patients and the elderly, critics say, will feel pressured to die rather than rack up medical costs for their families. People with depression will choose it over trying more treatments. Historically, voluntary euthanasia and eugenics attract similar supporters, and today, some disability rights groups warn that the practices are “fatally tangled.” (One doctor Engelhart speaks with wants to create machines that can provide assisted death more easily than drugs; he sheepishly describes one of his coffin-like prototypes as “a little Auschwitzy.”) So far, though, there is no evidence from Oregon or other states that the laws have caused disproportionate deaths in any demographics. In fact, the opposite might be true. Engelhart spoke to doctors who knew of patients who qualified under the laws, and who wanted to die, but who could not afford the drugs. “Poor patients sometimes had to live,” she writes, “while richer patients got to die.”

¤

Like much great narrative journalism, The Inevitable powerfully justifies its form when mapping how people relate to each other outside dominant systems — in this case, how end-of-life care can exist away from, or in opposition to, big medicine. Beyond trickster doctors like Jack Kevorkian — the American pathologist, dubbed “Doctor Death,” who in the 1990s turned assisting suicides into a kind of civil disobedience — barely underground networks have offered assisted death to people who don’t meet the law’s eligibility. One of Engelhart’s subjects, Debra, is a widow in Oregon who does not want to fully succumb to her dementia. She ends her life before that happens with the help of the Final Exit Network, a group of volunteers who instruct the elderly on how to commit suicide and accompany them through it. When she is ready, two volunteers arrive at her house, hug her, and kneel next to her wheelchair while she uses a plastic bag and gas canister to stop her own breathing. Even with its analog methods, this moment feels dignified, closer to what care should look like — especially when put into relief by the police who show up to her door some hours later.

Other narratives are murkier. A woman named Maia, the only main subject from the book who is still alive, speaks with Engelhart while working through the decision to schedule her death at a clinic in Basel, Switzerland, seeking relief from multiple sclerosis. Maia is slowly and painfully approaching paralysis. “I believe the soul travels on and wants to be free from this prison that has become my body,” she wrote in her application to the clinic. Maia felt early, undiagnosed symptoms of her MS in her 20s, but, following the advice of her father, she hoped for the best and declined treatment. Once the debilitation became obvious, she wondered whether those early treatments would have prevented the disease’s severe progression. The future she is left with will require constant assistance and treatments. In the United States, it will send her into poverty. (She unsuccessfully attempts the most American of options: a GoFundMe for medical expenses.) Maia is sure of her plan, but she seems consumed by wondering whether she could have lived a different life or whether she has suffered enough to end the one she has. Even with her Swiss appointment, she closely follows right-to-die bills in the United States. “On an idealistic level,” she tells Engelhart, “I’m obsessed with dying in my own country.”

For Maia, it seems, dying in the United States would be a kind of acknowledgment, an agreement that her country shares responsibility for her distress. The Inevitable is interested in dignity and how people define it, but it does not ask so explicitly whether the state, and the laws it creates, can recognize people’s dignity in the first place. If our systems of governance fail to care for so many — and kill others on death row and in the streets — can they be trusted to control the choice to die? If a “developing country” without universal health care did offer wide access to assisted death, one wonders whether its use could make that country’s ills more obvious, more urgent, less ignorable. When The Inevitable snaps back to the perspectives of its individual subjects, the implications of these political threads can get lost; the perspectives of nonwhite patients, or people who harbor more doubt in the medical system from the get-go, are also mostly absent from the narrative. Still, the book’s brilliance is in how much fertile ground it lays for these questions.

Near the end of The Inevitable, Engelhart profiles Philip Nitschke, an Australian doctor who has become one of the most vocal supporters of the unrestricted right to die. Nitschke founded Exit International, another organization like Final Exit Network. His is far more boundless than others; they sell The Peaceful Pill Handbook (2006) to almost anyone with instructions for safe suicide methods, and Nitschke gives public “DIY death seminars” with his wife’s help. He is at the radical end of the book’s spectrum, yet after the rigid patterns of death barely evaded by Engelhart’s subjects, his beliefs appear risky but benevolently imaginative.

When Nitschke started his career, he only accepted assisted death on a limited scale. But as he met the kind of people who could be in The Inevitable: Dispatches on the Right to Die — a taxi driver with stomach cancer, for one, who died painfully without the legal right to die — these limits dissolved rapidly. What did age have to do with it, really? And, more than that, if physical pain was an acceptable reason to end one’s life, shouldn’t mental pain be, too? Doctors and lawmakers, he came to believe, couldn’t pick and choose. There was simply too much gray area. “Philip came to think that efforts to suppress rational suicide were ‘a sign of an increasingly sick society,’” Katie Engelhart writes. “They were a sign that, maybe, society wasn’t so confident in its reasons for insisting on life.”

Complete Article HERE!

What is right to die?

‘The End’ central character depicts reality of dying with dignity

Harriet Walter as Edie and Frances O’Connor as Kate in ‘The End’

The End’ talks about euthanasia and why it might be really important for people who want to die with dignity

By Aayush Sharma

‘The End’ is an Australian TV series that talks about euthanasia, gender identity and more in a quirky manner. It follows three generations of a family trying to navigate through life while facing obstacles at different points of their lives. The show mainly focuses on Edie (Harriet Walter), a woman who has lived the last decade in complete misery and doesn’t want to live anymore. On the other hand, her daughter, Kate (Frances O’Connor), is a doctor in Australia who specializes in palliative care.

Edie hasn’t seen her grandchildren in many years and believes that she doesn’t have any will to live now. She is one of those who advocate ‘euthanasia’. According to her, everyone should be allowed to die when they feel like they can’t take it anymore.

The most important aspect of the story is that it is not superficial at all. It is based on real-life experiences where we have seen people fighting for euthanasia and demanding that they should be allowed to decide when they want to end their life.

Harriet Walter and Frances O’Connor in ‘The End’

What is right to die and why Edie wants to end her life?

‘Right to Die’ is a concept based on the opinion that human beings are entitled to end their life or undergo voluntary euthanasia. Voluntary euthanasia is conducted with consent. It is understood that a person with a terminal illness, incurable pain, or without the will to continue living, should be allowed to end their own life by using assisted suicide or to decline life-prolonging treatment.

However, there is always a debate as to who is empowered enough to assist in such matters. Showrunner Samantha Strauss has worked beautifully to portray this issue in a quirky manner. The show mainly follows Edie (Harriet Walter) trying to end her own life. When a log rolls from the fireplace and prematurely sets her house ablaze, Edie decides to jump from her house’s window and end everything. However, Edie survives and suffers injury on her left arm. She believes that if someone is competent to decide, nobody other than that patient should have the authority to decide whether life is worth continuing.

Belinda Teh Walks from Kings Park to the WA Parliament with Euthanasia advocates on August 6, 2019, in Perth, Australia

The attempt forces her daughter to move her mother from England to Australia to keep an eye on her. During one of the scenes, we get to know that she is a survivor of breast cancer and she has also had a double mastectomy. As soon as she is relocated to a retirement village in Australia, we get to know that there are many who want to die with dignity and not suffer in pain.

This is the entire crux of the situation: the right to die with dignity. In one of the scenes, a character on the show blames the hospitals for making people like them “cash cows”. He also says that the hospitals put them in misery so that they can make money out of it.

Youssef Cohen, 68, sits while undergoing cancer treatment as his wife Lindsay Wright looks on, on March 17, 2016, in New York City

The decision about whether to continue living in such conditions is among the most important that can be made. Many patients in a persistent vegetative state or else in chronic illness, do not want to be a burden on their family members.

Furthermore, the right to die with dignity is not an ordinary law. It is not a right granted to someone to kill, but it should be seen as an option for a conscious and free person to be understood and helped in a special request that is to end his or her life.

As far as the show is concerned, the idea of euthanasia is something that you would feel conflicted about. However, to Edie, it doesn’t. She feels that rather than going to a retirement village and die while being in suffering would be much worse than taking her own when she knows that it is time. This is not something that most people will understand, but as you watch the show you’ll also realize that it tackles the issue of the right to live as well. When Edie is confident that she wants to end her life, in the process, she also gets to know why living is important.

Let’s just say that ‘The End’ might be one of the most important shows of our times and tells the world about people in suffering.

‘The End’ premieres exclusively on Showtime on Sunday at 8 pm ET.

Complete Article HERE!

New research maps global assisted dying laws for the first time

Research shows the UK, France and Portugal in orange and other western countries such as Spain, Germany, and the Netherlands in blue

By Sinead Butler

A new study into worldwide laws on assisted dying has launched the first map of its kind to demonstrate the difference in policy around the globe.

Humanists UK have found that more countries have passed assisted dying laws – affecting over 250 million people – since MPs last debated proposals on changing the law in 2015.

The research also uncovered two predominant models of assisted dying internationally.

The first provides assistance to those who have six or fewer months left to live – found in New Zealand, and some parts of the United States and Australia.

While the second enables choice for both those who are terminally ill and incurably suffering.

This model can be found in Austria, Canada, Belgium, Italy, Germany, Luxembourg, the Netherlands, Spain, and Switzerland.

A similar bill is also currently under consideration in the Republic of Ireland.

Elsewhere, both euthanasia and assisted dying are illegal in the UK.

Helping someone to end their life is currently a criminal offence and carries a maximum penalty of 14 years imprisonment in England and Wales.

Though terminally ill patients in the UK do have the right to refuse treatments that might extend their life – controversially, this is sometimes referred to as “passive euthanasia.”

MPs previously debated changing assisted dying laws in 2015 but voted overwhelming against the proposal – with 330 voting against and 118 in favour.

The British Medical Association (BMA) has historically stated their opposition to assisted dying “in all its forms” being legalised and “believes that the ongoing improvement in palliative care allows patients to die with dignity.”

It also “insists” voluntary and non-voluntary euthanasia should not be made legal in the UK.

But if euthanasia were to be legalised, the BMA says “there should be a clear demarcation between those doctors who would be involved in it and those who would not.”

As the map shows more countries have passed assisted dying laws in recent years, Humanists UK want the government to revisit the right to die debate.

The charity’s Director of Public Affairs and Policy Richy Thompson has called on lawmakers “to pay close attention to the international consensus on assisted dying.”

“The publication of this map makes it clear like never before that the UK’s laws on assisted dying are in urgent need of review.

He added: “It is highly significant that in the years since our lawmakers last considered proposals on assisted dying, progressive countries around the world have continued to roll back their bans in the face of overwhelming evidence.”

“But it is also notable that on the rare occasions when assisted dying legislation has been considered in the UK Parliament, it has almost always excluded those who are incurably suffering, like Tony Nicklinson and Paul Lamb – which is at odds with most other jurisdictions’ laws.

“With several more countries now having passed or looking set to pass laws which will prioritise a person’s quality – not quantity – of life, we urge lawmakers in the UK to pay close attention to the international consensus on assisted dying and immediately conduct an inquiry into the law.”

Though the Care Not Killing alliance who oppose euthanasia has criticised the Humanists UK’s map.

Dr Gordon Macdonald, Chief Executive of Care Not Killing commented: “We do not have “passive” euthanasia in this country and to suggest this is grossly misleading and wrong in law.”

He added: “What this map fails to do is to show the widespread discrimination against the elderly and disabled people, wherever euthanasia and assisted suicide (EAS) has been legalised, or how the laws have changed over time.

“We only have to look at the Netherlands and Belgium which introduced laws for terminally ill mentally competent adults or those suffering unbearable pain. Now both countries regularly kill disabled people, those with chronic conditions, individuals with mental health problems, such as patients with dementia, depression, anorexia even a victim of sexual abuse, non-mentally competent children and babies and want to extend this further to those tired of life.”

“Neither does this map show how in jurisdictions like the US State of Oregon, six in ten (59 per cent) of those ending their lives in 2019 cited the fear of being a burden on their families as a reason and further 7.4 per cent cited financial worries. While in Canada, 1,412 people cited loneliness as a reason for having their lives ended.

“There are other problems too. It fails to mention the growing body of research showing legalising EAS can lead to an increase in the suicide rate in the general population. As one major study from Oregon noted, legalising Physician Assisted Suicide was associated with an increase of 6.3 per cent in the number of suicides, once all other factors had been controlled. Among over 65s the figure was more than double that.”

Dr Macdonald concluded: “No, there is nothing progressive about legalising EAS. Quite the contrary.

“At a time when we have seen how fragile our health care system is, how underfunding puts pressure on services and when up to one in four Brits who would benefit from palliative care but does not currently receive it, pushing an extreme ideological policy not only is the height of folly but incredibly dangerous. ”

Recently in Scotland, a new bill to legalise assisted dying was lodged on June 21 at the Scottish Parliament, the BBC reported.

The bill aims to legalise assisted dying for terminally ill, mentally competent adults.

Although previous attempts to change the law have failed, a cross-party group of MSPs have signed an open letter in support of the bill.

Complete Article HERE!