Category: Extraordinary Measures

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My church seeks to deny a compassionate death … a good death … to those crying out for it

A MINISTER of the Church of Scotland has broken ranks with the Kirk and spoken out in support of a new bill to legalise assisted dying – despite longstanding opposition from the Christian community.
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The Reverend Scott McKenna said the religious arguments put forward by opposing faith groups, including his own church, “do not stand up” and believes voluntary euthanasia can “sit comfortably” within Christian faith.

He delivered a powerful speech at a conference chaired by Independent MSP Margo MacDonald, who has launched a second bid to legalise voluntary euthanasia.

The Kirk and the Catholic Church have come out strongly against the reform. But research suggests more than 80% of the British public is in favour of change.

The event, held at the Royal Society of Edinburgh on World Dignity in Dying Day, also brought together Ludwig Minelli, founder of the Swiss suicide clinic Dignitas, international representatives from the Right to Die movement, and Jane Nicklinson, widow of the late Tony Nicklinson, who this year campaigned for the right to die.

McKenna, Kirk minister at Mayfield Salisbury in Edinburgh, said his views had been shaped by supporting families through the death of a relative suffering from a terminal illness.

“The Church says, ‘You must not kill, ‘You must not take human life’. ‘God has forbidden it’,” he said. “What is wrong with this argument? There is no such commandment.”

“In the Bible, David killed Goliath, David’s armies killed thousands. In the Book of Exodus, in the original language, Hebrew, the sixth commandment is ‘You must not kill unlawfully’. This is a staggering difference. In the Bible there are circumstances in which killing is legally and morally acceptable, such as in battle or executing a death sentence. I am not offering you an obscure interpretation of scripture. It is mainstream: the Church is wrong.”

He said the Church’s other main argument, that life is a gift from God and only God can choose the moment of death, was also “deeply flawed.”

He said: “We are told that we shouldn’t interfere with God’s plan by shortening human life. This is bad theology. It portrays God as brutal and less loving than we are to our pets. When the Church speaks of compassion, it means to ‘stand in someone else’s shoes’ – yet too often the church seem distant, cold and paternalistic. They know best and, based on a flawed theology, seek to deny a compassionate death, a good death, to those crying out for it.”

The minister has previously campaigned in support of gay clergy and same-sex marriage. He delivered a sermon on assisted dying at last Sunday’s service and said the response from the congregation was overwhelmingly positive.

He said: “Almost everyone is speaking from personal experience. They have been at the bedside of a relative. I know people who have gone into a hospice and the family members know they only have a day left. Once they are pumped full of drugs they lasted 14 days. Why is that good?”

McKenna also said his position was supported by some Catholic theologians.

“Anecdotally there are significant Roman Catholic theologians who are in favour but you won’t hear that from the hierarchy. The churches can continue to have their own view but they shouldn’t be allowed to impose it. I hope that compassion will triumph over religious dogma and the decision to die be seen not as suicide or life-defeating but as life-enhancing and an act of immense faith.”

In its consultation response on the issue of the right to die, the Church of Scotland said: “We believe that any legislation which endorses the deliberate ending of a human life undermines us as a society. The Catholic Church has said the legislation would “cross a moral boundary”.

Complete Article HERE!

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End-of-life system is needed in Wisconsin

By Charles E. Cady, Joseph Hansen and Steve Hargarten

This is in response to the Oct. 17 Journal Sentinel article “End-of-life medical care initiative prompts worries about abuse.” The current status of advanced planning for end-of-life decisions is a system that is woefully lacking, and where tools exist, they are of limited utility.

Autonomy is a fundamental bioethical principle: Patients have the right to make decisions affecting their health care, including deciding on the level and type of care they want. The principle of autonomy is no more important than in end-of-life decisions.

These decisions should ultimately be made by the patient but clearly benefit from discussions with health care providers, family, religious leaders and others important in a patient’s life. These decisions should reflect the individual’s goals as guided by his or her personal values and beliefs.

The Wisconsin Medical Society’s Honoring Choices Wisconsin is in keeping with the importance of autonomy, and we fully support this. However, Physician’s Orders for Life Sustaining Treatment (POLST) also must be moved forward in Wisconsin.

As emergency medicine physicians, we have found that the current system of communicating end-of-life decisions is lacking. In practice, it is the opportunity for clear communication of a patient’s wishes at the end of life that is most challenging.

Wisconsin’s do-not-resuscitate (DNR) law is very limiting. While it is the only tool mandated to be recognized by paramedics and emergency physicians, its utility is minimal. The order is only active once a patient has lost his or her pulse (in other words, is already clinically dead) and only pertains to the withholding of CPR. It offers no assistance with regard to other care for a dying patient. Wisconsin advanced directives lack precision, are not orders that can be acted upon by a paramedic and can be very confusing in an emergency situation.

The power of attorney for health care (POAH) system is also imprecise. While this system is a very important component of end-of-life planning, it is limited in emergency situations. Following direction from POAHs is not permitted for paramedics. In an emergency situation, the POAH may also have a hard time remembering that decisions are to be based on the patient’s, not the POAH’s, wishes. Logistically, in an emergency, the POAH is often difficulty to contact.

Physician’s Orders for Life Sustaining Treatment are clear and concise orders that can (and should) be acted upon by emergency personnel. They have been successfully implemented legislatively in 15 states. They take the pressure away from a POAH to make decisions in an emergency and alleviate that sense of personal responsibility for death.

They eliminate the vagueness that is commonplace in current advance directives. They also provide for decisions about care before someone actually dies. Most important, they help plan for the last moments of a patient’s life when clarity in planning and comfort are paramount.

Along with our paramedic colleagues, we encounter patients at the end of life on a daily basis. We see that end-of-life planning is limited. When end-of-life wishes are clearly described, it is an honor to provide that care.

However, these situations are the exception rather then the rule. Consequently, our ability to follow a dying patient’s wishes is limited. The result is often prolonged, painful and futile efforts that may not be desired.

In order to avoid these painful situations and to promote discussion of end-of-life planning, we strongly support efforts to successfully implement POLST in Wisconsin.

Complete Article HERE!

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Death is part of our human experience

There are times when it is better to “let nature take its course”.

By SALLY FOSTER-FULTON

The debate around assisted dying is undoubtedly a difficult and sensitive one. However, Nelson Jones’s recent blog, conflating as it did two very different issues, served only to muddy the waters.

In the piece, Jones sought to argue that because, in certain situations, a clinical decision is made by medical personnel not to attempt resuscitation of the patient, this is essentially equivalent to the medical profession making the decision to end the life of a vulnerable person. It would be more honest, Jones argued, to allow the choice of when their life should end to be made by the patient.

There can be little doubt that medical technology is now such that we can artificially prolong the lives of people through interventions which are at times inappropriate. However, in our death-denying culture, there are times when we need to remember that death is a part of our human experience, and that not every death is the result of a medical failure. There are times when the better decision is to let go, to step back and “let nature take its course”. This is the purpose of the “do not attempt resuscitation” (DNAR) decision: that further medical intervention would be futile and of no benefit to the patient.

However, the withholding or withdrawing of medical treatment differs fundamentally from the deliberate ending of life. The Church of Scotland is active in many projects offering care, comfort and support to the vulnerable in many practical ways. We therefore find the prospect of legislation allowing assisted dying to be deeply concerning, as it has the potential to undermine focus on the care and comfort of all as they move through the last stages of life- especially those who are placed in a vulnerable position as a result of age, incapacity or other circumstance.

While personal autonomy is indeed an important issue, it is a dangerous fallacy to believe that a person can act independently of all others, with their actions having no consequences for anybody else. Interpersonal relationships are vital: life is lived and death experienced as part of community. Assisted suicide cannot be a personal choice because it will inevitably effect everyone, and how tragic if those most vulnerable in our communities begin to feel that their lives are somehow less worth our resources. What a tragically bleak view of human life- and how far removed from the call of the church to show love and concern, compassion and support for all around us.

Death, as a natural process, cannot be avoided: despite the inevitable sadness involved in saying farewell to a loved one, emphasis should be placed on ensuring that all participants in the process experience as fulfilled and comfortable a final journey as possible.

We would emphasise the need for all aspects of care to be improved; there is concern, however, that assisted dying legalisation will undermine, rather than enhance, other aspects of end of life care and the manner in which society values every human being. Clearly it would be a step too far if vulnerable patients felt pressured to opt for assisted dying because of a lack of resources to give them an acceptable quality of life in their last months.

In common with many people of faith, the Church of Scotland would affirm that the worth and dignity of every human life needs to be emphasised and celebrated. Indeed, the Gospel of Jesus Christ which the Church of Scotland seeks to live out emphasises the value and worth of all human life, no matter the circumstances. Any legislation to bring about the deliberate ending of a human life would be a sea-change in how we perceive one another. Society places a prohibition on the killing of others (because we understand the profound commonality of life): this is a line which we must not cross.

Complete Article HERE!

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Permitted assisted dying could increase protection for vulnerable people

The only person who can decide if a life is worth living is the one living it.

By: NELSON JONES

Tony Nicklinson may not have achieved his wish for doctors to be allowed to terminate his life at a place and time of his choosing, but he did manage to push the subject of assisted dying higher up the public agenda than it has been for a long time. And while he didn’t convince the judges at the High Court, public opinion would seem to be firmly on his side. A YouGov poll conducted on behalf of the British Humanist Association last week found that a massive 81 per cent of adults (and two thirds of Roman Catholics) would support the right of “mentally competent individuals with incurable or terminal diseases” to access medical support to end their lives. Only 6 per cent were “strongly opposed”.

Support, too, has come from some leading politicians, such as the newly-appointed health minister Anna Soubry, who called the present state of the law “ridiculous and appalling”.

Even so, opposition to any change remains entrenched and seemingly unmovable. Many MPs, almost all religious leaders and the official policy of the BMA are implacably opposed to legalising voluntary euthanasia, which the current BMA president has described as “a journey I just don’t want us to even start out on”.

For some, the question is forever out of bounds because life is sacred and can properly be terminated only by God. But there are more pragmatic arguments, too, that convince many that assisted dying is inherently dangerous. It’s said that if the law were changed, vulnerable people would feel under pressure to end their lives in order to spare their families (or the taxpayer) the “burden” of their continued existence. That a system of planned death, timetabled according to personal or medical convenience, would cheapen life itself, would enshrine in law the idea that some lives were not worth living, and could potentially lead to a eugenic society in which the chronically sick, the elderly and the disabled were seen as disposable, by themselves or by others.

Such an argument may sound plausible. But can we be sure that we don’t live in such a society already? Today we learned of the case of an unnamed man, aged 51, with Down’s Syndrome and other disabilities, who spent some time in hospital last year. After “AWA” was discharged it emerged that without the knowledge of his family or carers doctors had placed a “do not resuscitate” (DNR) order on his file. The sole reason given for the notice – which would have resulted in his inevitable death had he suffered a cardiac arrest or encountered serious breathing difficulties – was apparently his disability. He does not seem to have been terminally ill.

We must, of course, be careful. It is only one case. The NHS trust concerned has declined to comment on the ongoing legal action and there may be significant facts that haven’t been reported. AWA’s solicitor, Merry Varney however, described it as “one of the most extreme cases we have seen” and declared that “to use Down’s Syndrome and learning difficulties as a reason to withhold lifesaving treatment is nothing short of blatant prejudice.”

“Extreme” this case may be, but problems relating to DNR notices are far from unheard of. In another case currently before the courts, David Tracey is suing Addenbrooke’s hospital in Cambridge over a DNR issued in respect of his wife who died there last year, and which was apparently discussed neither with her nor with him. He was also being represented by Merry Varney, who argued that “a competent patient must surely know when a decision to withhold potentially life sustaining treatment has been made.”

A survey of 100 hospitals carried out last year by the Care Quality Commission found that at least five were in breach of medical guidance regarding consultation with families before issuing a DNR notice. On one ward, as many as a third of such orders were issued without consultation. The charity Action on Elder Abuse described such practices as “euthanasia by the backdoor”.

Even if such cases are not the norm, they might be seen as evidence of a callously utilitarian approach to questions of life and death even without legalised euthanasia. AWA’s case in particular suggests that vulnerable patients might be especially, well, vulnerable to such an attitude. Yet others tell a different story, of elderly and vulnerable or terminally-ill people, sometimes in pain, past all hope of full recovery and who in an earlier age would have died peacefully, being artificially kept alive by well-meaning doctors and by the death-cheating power of modern medicine.

In today’s legal and medical regime, it would appear, some people are allowed to die who would rather live, while others are unwillingly kept alive when they want to die.

These two undesirable situations in fact represent different sides of the same coin: the paternalist attitude that sees medical professionals, rather than individual patients, as the people best placed to make the decision about whether he lives or dies. Tony Nicklinson, intellectually fully competent and certain in his own mind, is not allowed to determine the manner of his death. Nor is the more obviously vulnerable AWA. A system supposedly concerned with protecting the vulnerable only succeeds in reinforcing the godlike power of doctors.

For that reason, I suspect legislation that permitted assisted dying would actually increase the protection currently afforded to vulnerable people, and increase respect for the value of life. There’s no contradiction between saying that all lives are valuable and that some have become intolerably burdensome. Rather, knowledge that they would not be condemned, in extremis, to a lingering agony at the hands of modern medicine would free some patients to live. And those who chose for reasons of faith or optimism to cling to every last painful moment of life could do so without causing others to feel guilt for their plight, which is the real “burden” which people with severe disabilities or who are in the last stages of terminal illness impose on their loved-ones.

The only person capable of deciding whether a life is or is not worth living, ultimately, is the one who is living it.

Complete Article HERE!

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A push to encourage end-of-life discussions

By Kay Lazar

Rabbi Howard Kummer spent years guiding others through wrenching life-and-death decisions. As a chaplain at Newton-Wellesley Hospital, he ministered to patients tethered to life support machines, and would later tell his wife he never wanted to be kept alive that way.

But he did not get around to discussing his feelings with their three grown children, even after he was diagnosed with a brain tumor.

Then he had a catastrophic brain hemorrhage that left him near death, and his children were unprepared. They hesitated when a physician suggested stopping aggressive treatment.

“I knew what he wanted,” said his wife, Nancy. “I had had this discussion many times with him, but the kids hadn’t and they weren’t ready to let go.”

With death and dying, most Americans engage in a conspiracy of silence, surveys show, failing to discuss their final wishes until it is too late. A new Massachusetts-based coalition aims to change that.

Called The Conversation Project, the national campaign encourages open and honest discussions among families and friends about how they want to live life at the end, so that their wishes will be followed.

There have been other smaller-scale efforts to spark discussions among families and with doctors, but The Conversation Project has big financial backing from foundations and big names, including Dr. Don Berwick, former head of the Medicare program, and former Boston Globe columnist Ellen Goodman, a winner of the Pulitzer Prize.

The effort also has a partnership with ABC News.

A “starter kit” on the project’s website helps jumpstart end-of-life conversations. It asks visitors to answer this question: “What matters to me at the end of my life is _____.”

It suggests gentle ways for people of all ages to prompt a conversation with family or friends, by saying, for instance, “I need your help with something.” And it describes issues for people to think and talk about, from the level of medical interventions they might want, to a primer about legal documents that stipulate a person’s wishes.

The project was cofounded by Goodman, who spent a career communicating other people’s stories but neglected to have a detailed conversation with her mother about her preferences.

“I knew my mother’s attitudes in the most general sense,” she said. “But I never thought to ask my mother, for instance, where on the continuum are you, about being afraid of not getting enough care and getting too much care.”

Goodman said that because they had not had those discussions before her mother was incapacitated from dementia, she was torn while making complex decisions for her medical care.

Goodman’s mother died six years ago.

The project’s website suggests people have an ongoing conversation, not one that happens in one sitting. Writing a letter can be one way to start the conversation.

“DON’T PANIC — IT’S OK,” is how Karen Boudreau, a family physician, started a hand-written letter to her family when she became involved with The Conversation Project during its formation.

At the time, she was a senior vice president at the Institute for Healthcare Improvement, a Cambridge organization that is collaborating on the project.

Boudreau’s letter advises her family members to not worry or feel guilty if they have to make decisions for her care that they had not previously thought to discuss.

“If you’re faced with a snap decision, don’t panic — choose comfort, choose home, choose less intervention, choose to be together, at my side, holding my hand, singing, laughing, loving, celebrating and carrying on,” wrote Boudreau, now chief medical officer at Boston Medical Center’s HealthNet Plan, and, at age 51, in good health. “I will keep loving you and watching you and being proud of you.”

The Kummer children, including one now a rabbi herself, ultimately chose less intervention, too, after their 67-year-old father’s brain hemorrhage.

They signed a form to not have him resuscitated if his heart failed.

“In a very short time, we put together a nice little ceremony,” said Nancy Kummer, now 81 and living in Dedham. “One of them talked to him, one sang songs to him, one read some psalms to him, each in his or her own way, and then we said our goodbyes.”

Yet 13 years after her husband’s death, Kummer admitted that she has not had an in-depth conversation with her children — now ages 52, 51, and 47 — about her end-of-life wishes.

Nancy Kummer, a former social worker, used to counsel people with terminal illnesses and now lives in a retirement community where, she said, she is “surrounded by increasing fragility and illness and vulnerability so it’s in my face all the time.”

Still, she is having a hard time starting that conversation.

“There is a human tendency,” she said, “to postpone uncomfortable or unpleasant tasks.”

Getting Americans to put their end-of-life wishes in writing has not fared much better.

More than three-quarters of those surveyed said it is important to express their written preferences, yet fewer than 1 in 4 have done that, according to a recent survey by the California HealthCare Foundation.

But momentum may be building. Since its launch in October 2008, there has been steadily growing traffic on the website Engage with Grace, an online campaign aimed at prompting end-of-life discussions, said cofounder Alexandra Drane, who runs a Danvers software company focused on health care.

Her firm particularly seems to be hearing from a lot of baby boomers who have had bad experiences with decision-making in their parents’ deaths because they failed to have meaningful conversations beforehand, and now want to help others avoid that mistake.

“We are coming across more friends, and kindred spirits,” Drane said, “who have decided this will be their mission.”

Complete Article HERE!

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Doctors criticise religious parents for prolonging treatment

RELIGIOUS parents of seriously ill children who expect miraculous intervention are challenging the withdrawal of therapies that medical professionals consider to be “aggressive”, “futile and burdensome”, a paper published in the current issue of the Journal of Medical Ethics suggests.

The authors of the article – “Should religious beliefs be allowed to stonewall a secular approach to withdrawing and witholding treatment in children?”- argue that, in place of protracted dialogue between parents and professionals, during which a child might be subject to pain and discomfort, it would be better to have a “default position” whereby the case is taken to court.

Dr Joe Brierley and Dr Andy Petros, both consultants at the Paediatric and Neonatal Intensive Care Unit at Great Ormond Street Hospital for Children, and the chaplain of the hospital, the Revd Jim Linthicum, reviewed 203 cases at the unit over a three-year period, where withdrawal or limitation of invasive care was recommended by the medical team.

While in the majority of cases parents agreed to withdrawal or limitation, in 17 cases “extended discussions” between parents and medical teams did not lead to a resolution. Of these, 11 involved “explicit religious claims that intensive care should not be stopped due to the expectation of divine intervention and complete cure together with the conviction that overly pessimistic medical predictions were wrong”.

Of the 11 cases, five – involving Muslim, Jewish, and Roman Catholic parents – were resolved after meeting religious leaders; one child had intensive care withdrawn after a High Court Order; and in the remaining five, all involving Christian parents, most from “Christian fundamentalist churches with African evangelical origins”, no resolution was possible, owing to “expressed expectations that a ‘miracle’ would happen”.

The authors report that the Christian parents who “held fervent or fundamentalist views” did not engage in exploration of their religious beliefs with hospital chaplains, and that no religious community leaders were available to attend discussions.

Of the total number of 17 cases where there difficulties with finding a resolution, 14 of the children died soon after intensive care was withdrawn; one died within a week of withdrawal; and two survived with “profound residual neurodisability”.

While the authors acknowledge that it is “completely understandable” that some parents oppose withdrawal of support, they call for a “different approach”, citing “considerable stress, tension and conflict” for parents and staff.

The paper argues that while “any solution should allow due deference to a family’s beliefs and shared involvement in decision-making”, the religion of parents “should not influence the management of their child”. It cites the example of giving the children of Jehovah Witnesses blood transfusions and also Article 3 of the Human Rights Act, which states that “no one shall be subjected to torture or to inhumane or degrading treatment or punishment”.

The argument of the paper is challenged in four commentaries also published in the Journal of Medical Ethics. They were commissioned by the journal, and appear alongside the article.

Professor Julian Savulescu, the journal’s editor, argues that: “Treatment limitation decisions are best made, not in the alleged interests of patients, but on distributive justice grounds.”

He suggests that, while it is difficult to say when a human being’s life is worse than death for that individual, “it is much more tractable to decide when one life is better than another and when one life is more worth saving.” In a publicly funded system with limited resources, these should be given to those whose lives could be saved rather than to those who are very unlikely to survive, he argues.

Dr Steve Clarke of the Institute for Science and Ethics argues that the comparison with Jehovah’s Witnesses opposing blood tranfusions does not stand up: belief in miracles is widespread, and opposing withdrawal of treatment in the hope of a miracle cannot be said to be against a child’s best interests. He cites “significant scholarly arguments for the conclusion that miracles are possible”, and suggests that doctors should engage with devout parents on their own terms.

“Devout parents, who are hoping for a miracle, may be able to be persuaded, by the lights of their own personal . . . religious beliefs, that waiting indefinite periods of time for a miracle to occur while a child is suffering, and while scarce medical equipment is being denied to other children, is not the right thing to do,” Dr Clarke writes.

Dr Mark Sheehan, an Ethics Fellow at the University of Oxford, describes religion as discussed in the paper as a “red herring”. There are, he argues, “other things going on in these cases”, and they would be better resolved by being interpreted accordingly, with a focus on “the well-articulated ethical reasons that apply to all”.

Charles Foster, from Green Templeton College at the University of Oxford, suggests that English law, in which the child’s best interests are paramount, is already adequate to the challenge posed by the cases described in the paper. He also argues that these interests cannot be judged only according to medical criteria, but as a “holistic exercise”.

He is critical of the assumption that “there is some sort of democratically ordained mandate to impose secular values on everyone.” He suggests that a parent’s refusal to withdraw treatment from a child is something that “a truly secular society, rejoicing in diversity, should be keen to respect, as long as it is consistent with the best interests of the child, as broadly viewed.”

Complete Article HERE!