Tag: Prolonging Life

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‘Warehouses for dying people’: Are we prolonging life or prolonging death?

By Peter Whoriskey

The doctor floated through the intensive care unit, white lab coat flapping, moving from room to room, scanning one chart and then another, often frowning.criticalcare_4c1

Unlike TV dramas, where the victims of car crashes and gun shots populate the ICU, this one at Sentara Norfolk General, as in others in the United States, is more often filled with the wreckage of chronic disease and old age.

Of 10 patients Paul Marik saw that morning, five had end-stage kidney disease, three had chronic respiratory ailments, some had advanced dementia. Some were breathing by virtue of machines; others had feeding tubes; a couple were in wrist restraints to prevent them from pulling off the equipment.

For a man at a highly rated hospital surrounded by the technology of medical miracles, Marik sounded a note of striking skepticism: Patients too often suffer in vain attempts to prolong life, he said, because of the mandate to “do everything.” The urge to deploy every last aggressive medical technique, in other words, was hurting people.

“I think if someone from Mars came and saw some of these people, they would say, what have they done to deserve this punishment?” said Marik, gesturing to the surrounding rooms. “People might say we are prolonging life, but we end up prolonging death.”

aggressive end-of-life care3Critics of U.S. health care have long marshaled evidence against the overuse of aggressive end-of-life care, but the idea that many Americans are dying badly — subjected to desperate treatments in ways that are not only expensive but painful and medically futile — has gained currency of late.

This fall, a photogenic 29-year-old with brain cancer made the cover of People magazine with the decision to end her life on her own terms. About the same time, Medicare proposed that doctors be paid for discussing with patients their options for treatment — or not — at the end of life. And on the best-sellers lists is “Being Mortal,” a surgeon’s critique of the way the United States handles decline and death.

In it, author Atul Gawande warns, among other things, that “spending one’s final days in an ICU because of terminal illness is for most people a kind of failure.”

Marik’s long-standing argument, which is notable in part for coming from an ICU doctor, is this: The nation has double or triple as many ICU beds per capita as other Western nations, it spends inordinate amounts of money in the last months of life, and worst of all, this kind of care isn’t what patients want.

His doubts about end-of-life care appear to be widely shared among his ICU colleagues.

A 2013 survey conducted in one academic medical center, for example, found that critical care clinicians believed that 11 percent of their patients received care that was futile; another 9 percent received care that was probably futile, it said.

Marik blames, in part, people’s unwillingness to face up to the inevitable.aggressive end-of-life care2

“Americans not only don’t want to die, they are unwilling to accept the reality of death,” said Marik, who is also a professor at Eastern Virginia Medical School and chief of critical medicine at the school. “Unfortunately, old people get diseases and die.”

It pays to provide treatment

The remedy lies, in part, with hospices, which are hired to take care of patients after they opt out of aggressive end-of-life care.

Amid rapid growth, that industry has been marked by infrequent government inspections and, in places, lapses in quality. But when the service has been properly provided, families sometimes describe it as a godsend, and experts say hospices serve a critical role in the U.S. health system.

A number of factors, economic and personal, keep many patients from enrolling in hospice care, however.

For starters, it pays to keep dying patients undergoing more treatment, according to experts.

“Financial incentives built into the programs that most often serve people with advanced serious illnesses — Medicare and Medicaid — encourage providers to render more services and more intensive services than are necessary or beneficial,” according to Dying in America, a massive report issued in September by the Institute of Medicine.

But strains at a more personal level also keep patients in treatment.

Doctors are reluctant to disappoint a patient with the grim truth, and knowingly or not, keep false hopes alive. Families meanwhile sometimes overestimate the power of modern medicine.

aggressive end-of-life careTake, for example, the use of CPR, the technique that can restart a heart, but which, particularly in the elderly, can result in broken ribs, and even if successful in reviving a patient, may lead to a much-diminished quality of life.

“Have you ever seen it done on television?” Marik asks, rolling down a corridor with a class of students behind him. “They all wake up right away. But in real life, only about 5 to 10 percent of people — if they’re over 70 — leave the hospital alive.”

Indeed, a 1996 New England Journal of Medicine an analysis of popular shows like “ER,” showed that two-thirds treated by CPR survived until discharge.

“When CPR became widespread in the ’60s, it wasn’t considered ethical to perform it on people who are unlikely to recover,” Marik said. “Now it’s done all the time, regardless of the consequences.”

‘A warehouse for the dying’

Marik has been making his argument in published papers at least as far back as 2006, and his criticism echoes others in the field. An ICU doctor in Gawande’s book, for example, complains that she is running “a warehouse for the dying.”

“We’re kind of powerless to change the system — this is what society expects of us and what we are legally required to do,” Marik said. “But many clinicians are frustrated.”

Nurses, who interact with patients more, may be just as adamant about the issue. They see patients grimacing as they clean wounds around tubes into the lungs or stomach; they see confused patients trying to remove breathing equipment; they treat the bed sores of patients immobilized for long periods.

“There are cases where you honestly feel like you are just causing more harm or pain to the patient and you wonder if their family really understands what’s going on,” said Karen Richendollar, a nurse at the intensive care unit at Sentara Leigh Hospital here.

Surveys of intensive care nurses at 14 ICUs in Virginia, published in 2007 in the journal Critical Care Medicine, found that the leading cause of moral distress arises from the pressure to continue aggressive treatment in cases where the nurses do not think such treatment is warranted.

“The distress comes when there is no hope that whatever we are going to do will provide any different outcome,” said Becky Devlin, the supervisor in the ICU here. “The patient is going to die anyway, and we are just prolonging things. That’s where the distress comes in.”

For example, Devlin and Richendollar said, a woman then in their care was more than 90 years old, with blood pressure and severe kidney problems as well as severe dementia. She was being fed through a tube and had a urinary catheter.

Most imposingly, the woman was breathing via a ventilator, and to prevent her from removing the tube that had been inserted into her mouth and down her throat, restraints tied her hands to the sides of the bed.

“No one can be comfortable with all of that,” Devlin said. “Some of the family members are against further treatment, but there are others that make the decisions and they want to keep going.”

End-of-life planning key

One key way to avoid unwanted treatment, according to experts, is to solicit a person’s preferences for end-of-life care before a crisis arrives.

Toward that end, Sentara, which was ranked this year atop the “Best Hospitals in Virginia” by U.S. News & World Report, joined a coalition of hospitals and agencies on aging that in November launched a program to promote end-of-life planning in the Norfolk and Virginia Beach area. It has set up a Web site, asyouwishvirginia.org.End-of-life planning

The program hopes to inspire people to write down their wishes and appoint a health-care advocate to speak for them if they can no longer do so. Organizers will blanket the region’s religious group and elderly care organizations to encourage people to make end-of-life plans.

“Unfortunately when these situations [in the ICU] come up, families will say, ‘Doc, what should I do?’ But that’s not something that doctors can really answer,” said David Murray, director of the group, known as the Advance Care Planning Coalition of Eastern Virginia. “We need to hear from the patients or their representatives — earlier than we do now.”

Take, for example, one of Marik’s patients, a 72-year-old woman who’d come into the emergency room last month after her family found her confused.

Living at home, she’d long been beset by multiple health woes, mainly congestive heart failure and respiratory problems and bipolar disorder. Given her fragility, it would have been natural to have elicited her end-of-life wishes.

No one did, however, and at the hospital last month the hospital staff and the family spent several anguishing days discussing how best to proceed with her care.

Her labored breathing — her inability to draw in oxygen — was the central problem for the doctors. As she struggled for air, the carbon dioxide levels in her blood rose to dangerous levels. She grew anxious as a result, and this only worsened her breathing.

She was moved to the ICU.

The staff placed an oxygen mask called a biPAP around her head, fitting it snugly around her mouth and nose. The device forces oxygen from a hose into the nose and mouth, but it is often uncomfortable.

As a result, the patient was at risk of removing it. So in addition to being sedated, her hands were restrained — tied by cloth belts to the sides of her bed.

She could be heard that Monday calling out, at times, unintelligibly.

“Take me, Jesus,” she shouted at one point.

She wasn’t the only one bothered by the arrangement.

“The nurses and I were really uncomfortable — this poor little old lady,” Marik said. “She was an elderly demented lady with chronic end-stage lung disease. . . . We were subjecting her to a lot of pain and indignity with very little potential for gain. We shouldn’t be forced into that kind of situation, but we often are.”

By Wednesday, the hospital’s palliative medicine team met with family members, and in the coming days, the patient’s sister and daughter decided to forgo aggressive treatment and opt for measures meant primarily to keep her comfortable.

The uncomfortable mask and the wrist restraints came off. Her vitamins and cholesterol drugs were stopped. She was given medicine for her anxiety, which family members said had been a long-running source of trouble for the patient.

The patient was also prescribed morphine, a drug sometimes avoided until the end of life, but one that relieves pain and calms breathing. Nurses were instructed to give her morphine when her breaths exceeded 20 per minute.

Placed under hospice care, she was sent to a nursing home the next Monday.

There, the patient seemed to rally, regaining the ability to interact with family members. The color returned to her face. She even said she was enjoying music they brought in.

A few days later, after the family had the chance to call in distant relatives, she died.

Marissa C. Galicia-Castillo, a doctor in the hospital’s palliative medicine department, said it is common for patients to die in the ICU hooked up to machines.

“Fortunately . . . [this patient] was able to get out of the hospital into a more home-like environment, enjoy some familiar comforts, visiting and talking with loved ones before the natural end of her life,” she said.

But it wasn’t without the torment before the family decided that the aggressive measures may be introducing more pain than relief. Sometimes frail elderly patients languish weeks or months before family members opt for the comfort measures. Sometimes they die hooked up to multiple machines. In this sense, this patient constituted a success.

“We all knew she was dying, and that was the tragedy,” Marik said. “We knew we were just prolonging her death.”

Complete Article HERE!

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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!

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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.

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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.

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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.)

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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!

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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!