How to help ensure you die on your own terms

By LISA ZAMOSKY

Earlier this year, Gary Spivack and his sister Betsy Goodkin lost their mother to cancer. Between her first diagnosis and her death in April, her children say, their mother was determined to overcome her illness.

Gary Spivack and his sister Betsy Goodkin

“She was a very stubborn and proud person who fought this and had a lot of support from immediate family and a lot of friends,” says Spivack, 49, a music industry executive who lives in Pacific Palisades.

“She was going to live out her final minutes as healthy and fighting it as much as she could,” adds Goodkin, 51, who describes herself as a “full-time mom” in the Cheviot Hills neighborhood of Los Angeles.

But even as their mother fought to stay alive and healthy, her children say, she made her end-of-life wishes known: If death was imminent, she wanted no heroic measures taken to save her life. And she insisted on dying at home.

They said their mother passed away April 13 in just the manner she had hoped: She was in her own bedroom with the lights low and the mood peaceful. She held hands with loved ones as she passed.

Dr. Neil Wenger, director of the UCLA Health Ethics Center, said most patients would prefer to die that way, but few actually do. That’s because they fail to put their final request in writing, he says.

Without advanced planning, he says, most people die in hospital intensive care units, “in not the most dignified circumstances, in a way most say they don’t want to die.”

Why the gap between what people say they want at the end of their lives and what actually happens? There are many reasons.

A recent study published in the American Journal of Preventive Medicine found that lack of awareness is the most common reason people cite for not having written instructions prepared in advance.

“People go into a mode of thinking — and are encouraged to — that ‘if I just apply enough technology I will survive it,'” says Barbara Coombs Lee, president of Denver group Compassion & Choices. They even continue “in that mode of thinking when it’s perfectly obvious they are actively dying.”

Doctors also avoid such talks. Some physicians incorrectly believe patients don’t want to discuss death. Others pass the buck, believing it’s some other doctor’s responsibility to have the discussion.

These talks take time and can be emotional. “Doctors are human and they bring to the table a lot of their own emotions about death and dying, and these can be very difficult conversations to have,” said Dr. Glenn Braunstein, vice president of clinical innovation at Cedars-Sinai Medical Center.

A report out last week by the Institute of Medicine stated that medical and nursing education fails to orient healthcare providers toward less aggressive forms of end-of-life care, and many providers simply lack the communication skills needed to have these conversations.

Also, the report noted, providers are still largely paid to deliver more services, rather than fewer — even when treatment is futile.

Experts offer recommendations for putting end-of-life plans in place and what needs to be considered.

Open up the lines of communication. Frequent conversations about end-of-life goals between doctors and patients are essential if unwanted treatment is to be avoided, experts say.

“When people fail to plan for the worst, often they find themselves in a struggle to avoid an imminent and inevitable death that ends up causing an enormous amount of suffering for them and for their family members,” Coombs Lee says.

“Anyone with a life-threatening disease should know their options and the efficacy rate of any treatment they are offered,” she says.

Insist on shared decision-making. End-of-life conversations should be part of shared decision-making between a patient and his or her doctor, Braunstein says.

“You take into account the patient’s preferences, their spirituality and a variety of things. At the same time the physician should be giving honest information about what the prognosis is, what we can do and what we can’t do,” he says.

Talk about comfort care: Conversations should include discussions about your various treatment options, including palliative care, which emphasizes a patient’s physical and emotional comfort. Braunstein said palliative care should start well before a patient is terminally ill.

Also important is to talk about hospice care — treatment when you are no longer attempting to prolong your life but rather focusing on staying comfortable and managing pain in your final days.

“We think of hospice care delivered in the home as the gold standard,” Coombs Lee says.

Research suggests that people who receive palliative and hospice care may live longer than ill patients who don’t.

Select an agent. It’s a good idea to name someone such as a family member or close friend to serve as your healthcare agent.

This should be the person you most trust to represent your best interests and who will make sure your wishes are respected and carried out. Your agent can’t be your doctor or other healthcare providers treating you.

Establish an advance care directive. These directives for your last days are legal documents. They allow patients to state their treatment wishes and appoint someone to make medical decisions on their behalf.

They should spell out what you want to have happen and what you don’t. They must be signed by two witnesses — not your doctor or the person you name as your healthcare agent. Alternatively, you can have the document notarized.

A copy should be given to your healthcare agent, other family members or friends, and to your doctor. Ask that it be included as part of your medical record.

Get your doctor’s orders in writing. A Physician Orders for Life-Sustaining Treatment is a frequently used document to be signed by both the physician and the patient.

It generally is filled out when a person’s anticipated life span is six months or less and is put in a prominent place where caregivers and paramedics can see it. “The document is pink so it stands out, and we tell people to put it on their refrigerator or where they’re sitting downstairs,” Braunstein says.

Goodkin of Cheviot Hills says she learned a lot from her mother’s passing in April, namely about how to die on your own terms.

“Everybody wants to die with dignity, bottom line,” she says. “Whatever that means to somebody, you just have to honor that.”

Complete Article HERE!

Study finds unwanted care near death

West Palm Beach, Fla. — Americans suffer needless discomfort and undergo unwanted and costly care as they die, in part because of a medical system ruled by “perverse incentives” for aggressive care and not enough conversation about what people want, according to a report released Wednesday.

palliativecareAlthough people repeatedly stress a desire to die at home, free from pain, the opposite often happens, the Institute of Medicine found in its “Dying in America” report. Most people do not document their wishes on end-of-life care and even those who do face a medical system poorly suited to give them the death they want, the authors found.

The result is breathing and feeding tubes, powerful drugs and other treatment that often fails to extend life and can make the final days more unpleasant. The report blamed a fee-for-service medical system in which “perverse incentives” exist for doctors and hospitals to choose the most aggressive care, inadequate training for those caring for the dying, and physicians who default to lifesaving treatment because they worry about liability.

Recommendations of the institute, a private nonprofit arm of the National Academy of Sciences, often make their way into U.S. laws and federal agency policies.

“It’s not an intentional thing. It’s a systemic problem,” said David Walker, the former U.S. comptroller general, who co-chaired the committee of 21 experts that issued the 500-page report.Palliative-Care

Advance directives including living wills have been unpopular and ineffective, the report says. It urges repeated conversations about patients’ wishes beginning far earlier than many would think — perhaps as teenagers — and continuing the talks throughout life.

“The fee-for-service model, the lack of coordination between medical and social services, the challenges that individuals face in finding a provider who’s willing and knowledgeable to speak with them about death and dying all conspire against them coming up with the right individual plan,” said Philip Pizzo, a doctor who was co-chair with Walker.

Pizzo wrote: “Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background. It is our hope that this report will lead to improvements in end-of-life care and the experience of dying for all.”

Palliative care praised

The report praised programs in palliative care, which focuses on treating pain, minimizing side effects, coordinating care among doctors and ensuring that concerns of patients and their families are addressed. This type of care has expanded rapidly in the past several decades and is now found in a majority of U.S. hospitals, but the report says many physicians have no training in it.

Palliative-Care2“This report is relevant to persons who are seriously ill, their parents, children, extended families which essentially means every American,” said VJ Periyakoil, director of Palliative Care Education and Training at Stanford University’s School of Medicine, who was not involved in the report.

In many ways, the report is a repudiation of the controversy created by the term “death panel” in response to President Barack Obama’s health care law. The claim centered on the government saving money by deciding who would live and who would die. The controversial proposal never found its way into the law, the 2010 Affordable Care Act.

In fact, the report says the very type of end-of-life care Americans say they want would shrink medical bills and reduce the governmental burden.

“They will have a higher quality of life, and it’s very likely to be less expensive,” said Rep. Earl Blumenauer (D-Ore.), a frequent voice on end-of-life issues who reviewed the report. “But the main key here is that we should be giving people what they want.”

Blumenauer has sponsored a bill to allow Medicare to pay doctors for having end-of-life conversations with patients. That is the very idea that set off the “death panel” fury, which generated the most widespread and high-profile conversations on end-of-life care in the United States since the case of Terri Schiavo, a brain-damaged Florida woman who became the center of a protracted court fight over having her feeding tube removed.

Complete Article HERE!

A ‘Code Death’ for Dying Patients

By JESSICA NUTIK ZITTER, M.D.

Sadly, but with conviction, I recently removed breathing tubes from three patients in intensive care.

As an I.C.U. doctor, I am trained to save lives. Yet the reality is that some of my patients are beyond saving. And while I can use the tricks of my trade to keep their bodies going, many will never return to a quality of life that they, or anyone else, would be willing to accept.

Code DeathI was trained to use highly sophisticated tools to rescue those even beyond the brink of death. But I was never trained how to unhook these tools. I never learned how to help my patients die. I committed the protocols of lifesaving to memory and get recertified every two years to handle a Code Blue, which alerts us to the need for immediate resuscitation. Yet a Code Blue is rarely successful. Very few patients ever leave the hospital afterward. Those that do rarely wake up again.

It has become clear to me in my years on this job that we need a Code Death.

Until the early 20th century, death was as natural a part of life as birth. It was expected, accepted and filled with ritual. No surprises, no denial, no panic. When its time came, the steps unfolded in a familiar pattern, everyone playing his part. The patients were kept clean and as comfortable as possible until they drew their last breath.

But in this age of technological wizardry, doctors have been taught that they must do everything possible to stave off death. We refuse to wait passively for a last breath, and instead pump air into dying bodies in our own ritual of life-prolongation. Like a midwife slapping life into a newborn baby, doctors now try to punch death out of a dying patient. There is neither acknowledgement of nor preparation for this vital existential moment, which arrives, often unexpected, always unaccepted, in a flurry of panicked activity and distress.

We physicians need to relearn the ancient art of dying. When planned for, death can be a peaceful, even transcendent experience. Just as a midwife devises a birth plan with her patient, one that prepares for the best and accommodates the worst, so we doctors must learn at least something about midwifing death.

For the modern doctor immersed in a culture of default lifesaving, there are two key elements to this skill. The first is acknowledgment that it is time to shift the course of care. The second is primarily technical.

For my three patients on breathing machines, I told their families the sad truth: their loved one had begun to die. There was the usual disbelief. “Can’t you do a surgery to fix it?” they asked. “Haven’t you seen a case like this where there was a miracle?”

I explained that at this point, the brains of their loved ones were so damaged that they would most likely never talk again, never eat again, never again hug or even recognize their families. I described how, if we continued breathing for them, they would almost definitely be dependent on others to wash, bathe and feed them, how their bodies would develop infection after infection, succumbing eventually while still on life support.

I have yet to meet a family that would choose this existence for their loved one. And so, in each case, the decision was made to take out the tubes.

Now comes the technical part. For each of the three dying patients, I prepped my team for a Code Death. I assigned the resident to manage the airway, and the intern to administer whatever medications might be needed to treat shortness of breath. The medical student collected chairs and Kleenex for the family.

I assigned myself the families. Like a Lamaze coach, I explained what death would look like, preparing them for any possible twist or turn of physiology, any potential movements or sounds from the patient, so that there would be no surprises.

Families were asked to wait outside the room while we prepared to remove the breathing tubes. The nurses cleaned the patients’ faces with warm, wet cloths, removing the I.C.U. soot of the previous days. The patients’ hair was smoothed back, their gowns tucked beneath the sheets, and catheters stowed neatly out of sight.

Then, the respiratory therapist cut the ties that secured the breathing tube around the patients’ neck. As soon as the tubes were removed and airways suctioned, families were invited back into the room. The chairs had been pulled up next to the bed for them and we fell back into an inconspicuous outer circle to provide whatever medical support might be needed.

I stood in the back of the room, using hand motions and quietly mouthing one-word instructions to my team as the scene unfolded — another shot of morphine when breathing worsened, a quick insertion of the suction catheter to clear secretions. We worked like the well-oiled machine of any Code Blue team.

Of those three Code Death patients, one died in the I.C.U. within an hour of the breathing tube’s removal. Another lived for several more days in the hospital, symptoms under watch and carefully managed. The third went home on hospice care and died there peacefully the next week, surrounded by family and friends.

I would argue that a well-run Code Death is no less important than a Code Blue. It should become a protocol, aggressive and efficient. We need to teach it, practice it, and certify doctors every two years for it. Because helping patients die takes as much technique and expertise as saving lives.

Complete Article HERE!

Aid In Dying, Part 1

“I asked my audience to keep that in mind that it’s this social dimension of the dying process that gives us the best context for understanding this delicate issue. I suggested that if we kept our discussion as open-ended as possible we wouldn’t be tempted to reduce the whole affair to the single issue of assisted suicide, because that does nothing but polarize the debate.”

There was a wonderful front-page article in the February 2, 2014 edition of the New York Times titled: ‘Aid in Dying’ Movement Takes Hold in Some States. The most astonishing about the article was that, not too long ago, this sort of even-handed presentation in “the paper of record” would have been unthinkable. I’m so glad this is changing. Because, despite where you stand on the issue, no one benefits from tamping down the discussion.AidinDyingphoto_medium

I talk about assisted dying frequently. Despite being the hot button issue it is, there’s a remarkable amount of common ground amongst the varying positions if one looks for it.

I was conducting a workshop on this very topic recently and before I could really get started, a man stood up and declared: “I need to say upfront that I am diametrically opposed to assisted suicide of any kind, including physician assistance. There’s just too much room for abuse. I can’t help but think about how things would be if we started eliminating the people we think are no longer productive. You could be sure that old and disabled people would be the first to get the ax. I’m afraid the tide of this culture’s prejudice against age and infirmity would overwhelm them. It is such a slippery slope that I don’t think we ought to venture out onto it.”

Not five minutes into the workshop and I already knew it was gonna be a bumpy ride. I asked the fellow for his indulgence and asked him to allow me to continue.

death midwifeI began by saying: “It’s my experience that very few people prefer to die alone. Most dying people express a desire to have company in their dying days. And given the option, most everyone would prefer the company of friends and family to that of strangers. Very few of us have the personal strength to walk this unfamiliar territory alone. We’re social beings, after all, and there’s nothing about dying that changes that.”

I asked my audience to keep in mind that it’s this social dimension of the dying process that gives us the best context for understanding this delicate issue. I suggested that if we kept our discussion as open-ended as possible we wouldn’t be tempted to reduce the whole affair to the single issue of assisted suicide, because that does nothing but polarize the debate.

I turned to address the man who stood up at the beginning of the workshop. “I thought it curious, sir, that you took the time to assert that you are opposed to assisted suicide of any kind, including physician assisted suicide. Is that all you thought we were going talk about?”

“Well, yes, that’s exactly what I thought. Isn’t that what assisted dying means?”

“Not the way I understand it.” I said. “It’s true, acting to hasten death in the final stages of a terminal illness falls under the general heading of assisted dying, but I don’t think it defines the concept. In fact, I believe that reducing the concept of assisted dying to a single issue would be a mistake for two reasons. First and foremost, it discounts all the other more common modes of assistance regularly being given to dying people across the board. And second, this more extraordinary form of assistance is relatively uncommon. So you can see why I’m so adamant about keeping the discussion inclusive and open ended. It just wouldn’t be balanced otherwise. I believe that the issue of proactive dying can become sensationalized, distorted, and even freakish if this option is not presented as an integral part of the entire spectrum of end of life care.”assisted_dying

I think a good metaphor for what I was talking about is the midwife. Like a birth midwife, a death midwife assists and attends in a myriad of ways. A midwife is the one who is most present and available to the dying person, the one who listens, comforts, and consoles. But a midwife may also bring an array of other basic skills, like expertise in the care of the body such as bathing, waste control, adjusting the person’s position in bed, changing bedclothes, mopping the person’s brow, or keeping the person’s eyes and mouth lubricated. A midwife may also be proficient in holistic pain management and comfort care such as massage, breath work, visualization, aromatherapy, relaxation, and meditation.

A midwife may take responsibility for maintaining a tranquil and pleasing dying environment. Often this means arranging the person’s home or room, not only in terms of the practical considerations, but also in terms of the aesthetic as well. This may include arranging flowers and art, reading aloud or playing music softly. A death midwife, like a birth midwife takes the lead role in the caring for and comforting the one who is dying. Without this kind of compassionate presence, few people would have the opportunity to achieve a good death.

Another guy spoke up: “That’s all fine and good, but I was hoping that we were going to talk about, you know, the more proactive aspects of assisted dying. I mean, I know I’m gonna want help in bringing my life to a close when the time comes and no amount of breathing exercises and adjusting pillows is gonna cut it. Am I making myself clear?”

“I understand what you are saying. You want some practical advice on how to end your life if the need arises.” I responded. “I can assure you that we well get to that. I just wanted to make sure that we all appreciate the context of our discussion.”

physician aid in dyingAn elder woman in the first row raised her hand. “I’m glad that you’re taking the time to help us frame the debate in this way because I’m confused. I have the same reservations as the first gentleman who spoke, but now I’m not sure my concerns are warranted. Maybe I need more time to figure out what it is we’re talking about when you say, ‘proactive dying.’ Is it euthanasia, assisted suicide, self-deliverance, what? And why so many different terms?”

“You make a very good point, ma’am. Unfortunately, there is no agreement, even among experts, about a common vocabulary for this debate. And thus the public discourse often generates a whole lot more heat than light. And the topic of proactive dying will continue to be a hot-button issue until we can come to a consensus about the parameters of the debate, and that seems like a long way off.”

I went on to say that I have trouble with most all the terms commonly used in the debate. I consider euthanasia is much too technical. Curious enough, at one time this word meant an easy, good death. Now, unfortunately, it is defined as mercy killing, a classic example of how language can be corrupted.

I also try to avoid using the term “assisted suicide” when I talk about someone hastening his or her death in the final stages of a terminal illness. The word suicide is inappropriate in this instance, because suicide usually denotes a desperate cry for help, which is rarely if ever the case for those facing the imminent end of life.falling leaf

Finally, I don’t much like the term self-deliverance either. It’s just one of those vague, contemporary euphemisms that does nothing to clear the air. In fact, when polled, most people haven’t a clue what self-deliverance means. I prefer the simpler, more straightforward terms ‘proactive dying’ or ‘aid in dying.’

Another woman spoke up: “I’m having a hard time with this too. I mean, it’s all so confusing and there are so many subtleties to consider. I guess I’d have to say that I’m not particularly comfortable with the notion of assisted suicide or, as you call it, aid in dying. But I wonder if I’d feel differently if I were in unbearable pain. And taking someone off life support; isn’t that technically assisted dying? Where do we draw the line between what is acceptable and what isn’t? And who is going to make that determination?”

I responded: “The simple answer is that doctors and lawyers are generally the ones who make the call. That is unless individuals are granted the right to choose. But even then, medical and legal concerns can and do trump a person’s wishes.”

(We will take up this topic again next time. I’ll discuss how best to approach one’s physician about aid in dying among other things.)

Poll finds Americans want to live longer, but not too much

* Survey finds Americans’ ideal age around 90
* Slight majority would refuse treatment to extend life
* Would living to 120 sap marriage, family, love of life?

 

By Tom Heneghan

How long would you like to live – 100 years? Maybe 120? Would extended life spans be good for society, the economy and the way people go through their lives?

With populations aging and medical science progressing, questions like these are moving from the science-fiction category to the realm of long-term issues that ethicists and policy makers are starting to consider.

Salustiano Sanchez, 112, the world’s oldest man according to Guinness World Records, resides in a retirement home on Grand Island, New York, July 30, 2013.
Salustiano Sanchez, 112, the world’s oldest man according to Guinness World Records, resides in a retirement home on Grand Island, New York, July 30, 2013.

The Pew Research Center, a Washington-based think tank known for its surveys into political and social trends, published a report on Tuesday exploring views about “radical life extension” and its effects in the United States.

Entitled “Living to 120 and Beyond”, the report said that “many Americans do not look happily on the prospect of living much longer lives”. Among the findings:

– The median ideal lifespan mentioned in the poll of 2,012 people was 90 years, about 11 years longer than the current average U.S. life expectancy of 78.7 years.

– Some 56 percent said they would refuse medical treatment to extend their lives, 38 percent would take it and the rest didn’t answer. But 68 percent thought that other people would seize the opportunity. Only 41 percent thought living to 120 would be good for society.

– Some 79 percent said life extension should be available to all, but 66 percent thought only the rich would have access to it and another 66 percent feared scientists would offer the treatment before fully understanding its health effects.

– Black and Hispanic Americans are more positive than whites about extending life, although the survey could not explain why. Religious views, gender and education did not seem to play a significant role in responses to the national survey.

ENDLESS LIFE “NO PARADISE”

Pew’s Forum on Religion and Public Life conducted the survey as part of its focus on emerging issues with religious and ethical implications, researcher Cary Funk told Reuters.

“Once we started talking to people whose job it is to think about ethical issues and the future, this came up over and over again,” said her fellow researcher David Masci.

The report stressed medical science is not yet able to offer radical life extension treatment and noted that three-quarters of those polled did not think average people in 2050 would be able to live to 120 or longer.

Only 10 percent said having more elderly in the population would be bad for U.S. society, although 53 percent thought it would not make the economy more productive.

The report said extending life spans would challenge the concept of life-long marriage and could confuse relations within families when “people may not look or act much older than their parents, grandparent or even great grandparents.”

It cited ethicists who asked whether postponing death until a distant future would make people appreciate life less.

While all faiths confront the issue of death, the report said none had yet taken a position on radical life extension.

But researcher Masci found that former Pope Benedict, who unexpectedly retired in February citing his old age, addressed the issue in a Holy Saturday sermon back in 2010.

Benedict, now 86, observed that modern medicine sought to delay death as much as possible and asked whether radical life extension would be a blessing.

“Humanity would become extraordinarily old, there would be no more room for youth,” he said at the Vatican. “Capacity for innovation would die and endless life would be no paradise. If anything (it would be) a condemnation.”

Complete Article HERE!

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!

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.”

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