10/8/17

Many kids dying of cancer get intense care at end of life

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By Lisa Rapaport

Nearly two-thirds of children and teens with terminal cancer receive intense care at the end of life, often in hospitals and intensive care units, a U.S. study suggests.

Certain patients, including kids under age 5 and teens aged 15 to 21 as well as ethnic minorities and patients with blood malignancies were more likely to receive aggressive care than other children, the study also found.

“The rates of medically intense end-of-life care we found in our study and the disparities we found raise the question: Are we providing a palliative approach to end-of-life care for these patients?” said lead study author Dr. Emily Johnston of Stanford University School of Medicine in California.

“I hope this study makes pediatric oncologists and others taking care of these patients reflect on the end-of-life discussions they are having, particularly with these high-intensity groups,” Johnston said by email. “I also hope it lets families experiencing the loss of a child due to cancer know that there are different ways for that death to happen, so they can think about and advocate for what is best for their child and their family.”

Many adult patients with cancer who know they are dying choose less intense care, and aggressive treatment is associated with worse outcomes for families and caregivers, Johnston and colleagues write in Pediatrics. But less is known about treatment choices for children, Johnston told Reuters Health.

For the current study, researchers examined data on 3,732 patients age 21 years or younger who died of cancer in California from 2000 to 2011.

Researchers examined the intensity of medical interventions at the end of life by looking at how often patients had cardiopulmonary resuscitation (CPR), intubation, intensive care unit (ICU) admissions or dialysis within 30 days of death. Researchers also looked at how often patients had intravenous chemotherapy within 14 days of death and how many patients died inside hospitals.

Overall, 63 percent of patients died inside hospitals and 20 percent were admitted to ICUs.

Children were more likely to receive aggressive interventions at the end of life when they lived closer to a hospital, or when they received care at a hospital that wasn’t a specialized cancer center, the study found.

One limitation of the study is that the results also may not reflect what would happen outside California, or represent more recent trends in end-of-life care, the authors point out. Researchers also lacked data on how patient and family preferences or other factors might have influenced care decisions.

“We do not know a lot about how the end-of-life experience of children impacts on family bereavement outcomes,” said Dr. Joanne Wolfe, co-author of an accompanying editorial and director of pediatric palliative care at Boston Children’s Hospital.

“Some earlier studies have shown that the child’s experience of pain impacts bereaved parents’ long-term outcomes including anxiety and depression,” Wolfe said by email.

Communication is also key, said Dr. Kim Beernaert of Ghent University and Vrije Universiteit Brussel in Brussels, Belgium.

“We know that communication and information about decision making, treatment options, prognosis etc. is very important for how bereaved parents cope afterwards,” Beernaert, who wasn’t involved in the study, said by email.

With the right information and support for parents and families, many children who die in a hospital might be able to die at home instead, said Dr. Amos Bailey of the UCHealth Palliative Care Clinic at the Anschutz Cancer Pavilion in Aurora, Colorado.

“However, it is physically and emotionally challenging to care for a loved one in the home through death, and parents and children may feel more comfortable and safe in a hospital where it is likely they have been admitted before and come to trust and depend on staff,” Bailey, who wasn’t involved in the study, said by email.

“It will be important to understand if more parents or children would want to die at home or out of a hospital if they were supported,” Bailey added.

Complete Article HERE!

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09/11/17

Doctors want to give their cancer patients every chance. But are they pushing off hard talks too long?

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Biff Flanagan, an esophogeal cancer patient, stands with his wife Patricia at their home in Sa Diego, CA on Wednesday, August 30, 2017. Mr.Flanagan received an experimental immuotherapy cancer treatment for his cancer.

By Bob Tedeschi

A new generation of immune-boosting therapies has been hailed as nothing short of revolutionary, shrinking tumors and extending lives. When late-stage cancer patients run out of other options, some doctors are increasingly nudging them to give immunotherapy a try.

But that advice is now coming with unintended consequences. Doctors who counsel immunotherapy, experts say, are postponing conversations about palliative care and end-of-life wishes with their patients — sometimes, until it’s too late.

“In the oncology community, there’s this concept of ‘no one should die without a dose of immunotherapy,’” said Dr. Eric Roeland, an oncologist and palliative care specialist at University of California, San Diego. “And it’s almost in lieu of having discussions about advance-care planning, so they’re kicking the can down the street.”

Palliative care and oncology teams have long been wary of each another. For many oncologists, palliative care teams are the specialists to call in only when curative treatments have been exhausted. For many palliative care specialists, oncologists are the doctors who prescribe treatments without regard to quality-of-life considerations.

But the new collision between immunotherapy and palliative care experts comes at an inopportune moment for health care providers, who have in recent years promoted palliative care as a way to increase patient satisfaction while reducing costs associated with hospitalizations and emergency room visits.

Dr. Cardinale Smith, an oncologist and palliative care specialist at Mount Sinai Hospital in New York, said she has seen a handful of patients who tried immunotherapy treatments after failing chemotherapy, and who were later admitted to the hospital in poor condition. Almost all of them died there, without having been asked about where, and under what conditions, they might prefer to die.

“These conversations are not occurring because of the hope that this will be the miracle treatment,” Smith said. “Unfortunately, on the part of the oncologist, treatments like immunotherapy have become our new Hail Mary.”

Immunotherapies work for only around 15 to 20 percent of cancer patients who receive them.

They have been approved by the Food and Drug Administration for Hodgkin lymphoma and certain cancers of the lung, skin, blood, kidney, bladder, and head and neck — but not for common cancers like prostates and most cancers of the colon and breast. A new type of immunotherapy, CAR-T, was approved earlier this week for leukemia.

But even for those cancers, oncologists and patients sometimes refuse to acknowledge clear signs that immunotherapies are failing, said Dr. Sandip Patel, a cancer specialist and immunotherapy researcher at the University of California, San Diego.

Patel said he now engages home-based palliative care specialists, who can provide supportive care while a patient’s health is relatively stable. “Then, at least when they transition to hospice, it’s not as much of a free fall out of the traditional health system, and if they’re one of the patients who respond to the therapy, great.”

He lamented the fact that patients who fail immunotherapy treatments spend more time in hospitals than with their families at home. “The flip side is, if I had a cancer with a 15 percent response rate, and if the benefit might be longer-term, I’d try it,” he said. “Who wouldn’t buy a ticket to a lottery of that importance?”

But not all patients have a clear idea of what that lottery ticket might cost them. Carrie Clemons’s father, Billy Clemons, who is 68 and is a former Texas state representative, last year stopped responding to chemotherapy for renal cell cancer that first struck him in 2002. His doctors recommended the immunotherapy Opdivo, which had recently been approved for his cancer.

At the time, he was symptom-free from his cancer, though scans showed it had spread to his lungs and some lymph nodes.

Two infusions of the drug, Clemons said, were followed by “eight months of hell,” during which her father became incontinent and had to use a wheelchair, lost his eyesight and most of his hearing and speech, and endured multiple weeks of intubation and care in the ICU. When his heart stopped beating, he needed to be resuscitated.

While immunotherapies trigger debilitating side effects much less frequently than chemotherapy, they can spur potentially life-threatening conditions, depending on the cancer type and the treatment approach. Fewer than 5 percent of patients overall face serious side effects, for instance, but more than one-third of melanoma patients who receive a combination of immunotherapy drugs can experience such conditions. The upside: Half of those melanoma patients will see their cancer shrink for at least two years.

Clemons’s doctors at Houston’s MD Anderson attributed the reaction to a runaway immune system that essentially attacked his central nervous system. To reverse it, he needed weeks of therapy to replace his plasma with that of donors, to clear away his blood’s overly active antibodies.

He slowly improved, though, to the point where only some slight vision impairment remains, and doctors recently declared his cancer in remission.

Although the family is thrilled at the outcome, Clemons said, they had little idea when they began that such side effects were possible, and doctors never engaged the palliative care team to either discuss side effects or help manage them.

She wouldn’t have known to ask about such care. “I always just equated palliative care with hospice,” she said.

Hospitals overall have made some headway in integrating oncology and palliative care specialists, with more oncologists referring patients to palliative specialists to help them ease side effects of treatments and achieve quality-of-life goals.But Roeland, the doctor at the University of California, and others say the integration is less smooth when it comes to cutting-edge cancer treatments.

Palliative care teams have not been able to keep abreast of the breakneck pace of cancer treatments, so they may not be offering up-to-date counsel to patients who ask about possibly life-changing therapies.

Meanwhile, most of the growth in palliative care medicine has happened among clinicians who work in hospitals, where they generally see only those who have done poorly on immunotherapies, for instance.

“They’re not seeing the super-responders,” Roeland said. “So their first reaction usually is, ‘Why would you do that?’”

Biff Flanagan, an esophogeal cancer patient, on a walk with his wife Patricia at their home in San Diego, CA on Wednesday, August 30, 2017. Mr.Flanagan received an experimental immuotherapy cancer treatment for his cancer.

Roeland understands more than most the seductive qualities of an eleventh-hour immunotherapy gambit. He had given up hope of curing Bernard “Biff” Flanagan, 78, of his esophageal cancer in late 2015, and referred Flanagan to hospice care to help him manage his extreme weight loss, fatigue, and the emotional distress he felt from not being able to swallow.

But Flanagan, who speaks with the gruff, seen-it-all humor one might expect from a career FBI agent in LA, wanted to keep seeking a cure.

Roeland said he knew that many hundreds of clinical trials were testing the therapies on other cancers, so he did some digging. A paper from a recent cancer conference showed that some people with squamous cell esophageal cancer responded to immunotherapy. He could arrange to get the drug through the Bristol Myers Squibb, for free.

He presented the idea to Flanagan and his wife, Patricia, with the caveats that it might not work, and could come with possibly significant side effects.

Flanagan jumped at the chance. Patricia, a former professional photographer, was less enthused.

“I ran into her later in the coffee shop,” Roeland said. “She looked at me like. ‘What the hell are we doing here? He doesn’t have a good quality of life.’ I’m feeling guilty now.”

Roughly six weeks into the treatment, Flanagan’s energy was returning, and he found himself at the fridge. “I grabbed a glass of OJ, knocked it down, swallowed it no problem,” he said. “And it was like a miracle. I had another one.”

Now Flanagan has no symptoms, and he experienced only the briefest side effect: a skin rash that abated with ointment. Patricia recently helped him dispose of the morphine and other medications the hospice team had given them.

“If he’d died in the hospital, I would’ve felt terrible,” she said. “If I were in his place at that point, I’d have tried to arrange to die at home at my own choosing, but Biff just didn’t have as strong feelings about that as I had.

“I had little hope that he was going to recover, but it’s just been amazing. He really is living the life he’s always lived.”

Roeland said that for the experience “is so immensely rewarding that it drives an oncology practice. It can be 1 in 100 that happens like that, and you say, well, is it worth it?”

Complete Article HERE!

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07/29/17

Facing the Abyss: Planning for Death

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By Kevin Dieter

“The hurrier you go, the behinder you get.”

 
Puzzlingly, the older and more “seasoned” I become, the more this bit of Amish wisdom is true. Especially when it comes to reading. I don’t have time to read. So, I was surprised when I found myself reading a recent publication from the National Quality Forum. However, as serendipity would have it, I am so glad I did. This publication, “Strategies for Change: A Collaborative Journey to Transform Advanced Illness Care“ had me hooked with the introduction. They had the beautiful audacity to suggest that physicians can and do have the ability to engage in conversation about the taboo (their term) subjects of death and mortality. As I read further, I was rewarded with a section devoted to “peaceful death and dying.”

There has been debate about whether we truly live in a death denying culture. I believe that we do. Strongly so. Ernest Becker, in his Pulitzer prize winning book The Denial of Death, makes a compelling case that western societies are THE most death-denying in all of history. I see the results of this everyday. Our mortality, the inevitable finality of this life, is routinely disregarded as an essential contribution to the plan of care. The result is a series of squandered opportunities for healing and even transformation at the end of life. Very sick patients are referred to hospice without a prior discussion of goals of care and resuscitation status. Very sick patients travel from hospital to hospice house, often dying on route. But even more common is a never-ending procession of the dying patients and their loved ones who come to the end of life totally unprepared.

The poet W.H. Auden described death as “the rumble of distant thunder at a picnic.” It’s a brilliant metaphor. In my mind, in that scenario, we have 3 choices. The first choice is to totally ignore the thunder and hope that the storm blows north, but when the storm does hit, we will be totally unprepared and will be in some danger. The second choice is to recognize that the storm is coming, and to feel dread that it will totally ruin the remainder of the picnic, and yet do nothing to prepare for it. The third option is to recognize the threat that the thunder represents, to reorganize priorities and enjoy the good weather while you can, and then be packed and ready to seek shelter when the storm hits. I believe these metaphorical choices are similar to our society’s attitude toward death. Most of us choose the first 2 options in regards to our own mortality.

The medicalization of death and dying, increasingly prevalent following World War II, has placed physicians in a difficult situation. Advancements in medical technology, the rise of consumerism, and the strengthening voice of patient autonomy have encouraged society to give us the responsibility of managing death, but for the most part we are poorly trained and generally not inclined to do so. We have, however, made significant progress in helping patients and their families negotiate the myriad of decisions and break points they encounter as their health fails and they traverse the healthcare system. This progress, through many variations of advance directives, follows the thread of “quality of life.” I picture the patient as Indiana Jones, running through the jungle, dodging spears and traps, tumbling and rolling, and finally seeing the clearing in the trees. With the screen focused squarely on their face, I see the expression go from anticipation and relief to dread as they look down into the 10,000 foot abyss. Advanced Directives and Goals of Care discussions may get them through the jungle, but when it comes time to die, they are horribly unprepared. Very little time, they realize, was spent considering the quality of their death. It is time to die, and they haven’t imagined themselves on this death bed.

Dying patients and their loved ones today enter a space totally unfamiliar. One hundred years ago, most Americans grew up in household where death occurred and dying was more accepted as a part of daily life. Today, many of us live on the surface of life, existing from Tweet to Tweet. Richard Groves calls this “the demon of busyness.” Our attention span has been measured in seconds. Dying, and being with the dying, often requires sitting with uncertainty for long periods of time. We are very uncomfortable being there. It often does not sound, look or smell nice. Dying is the ultimate time of transition for those involved in the loving and caring for the dying. Without experience, and with difficulty accepting uncertainty, many patients and families come to the dying time unaware of what to expect, and worse, how to prepare.

We need to work much harder at preparing our patients for end-of-life. This is not our responsibility alone, however. There seems to be a grassroots movement developing that encourages open discussion about death and dying. Social media is exploding with new and increasingly innovative ways to initiate and encourage this dialogue. The demon of busyness is being met head on by card games, like “GoWish”, and interactive art such as the “Before I Die “ walls. These social instruments allow our society to begin the uneasy discussion about what has been taboo. In medieval times, the practice of “ memento mori,” a constant gentle reminder of their own mortality, served the purpose of improving the quality of their life,  But it also improved the quality of their death. They heard the thunder, they prepared for it, and they enjoyed the picnic.

We can, and should, be part of the discussion. We should initiate it and foster it. Consider hosting a Death Cafe or buy and distribute GoWish card games. Volunteer at a local hospice doing bedside vigils, and write about what you learn. We can become more comfortable in talking about quality of death. We can improve the quality of our patients lives by helping them consider the quality of their dying. It will require that we  prepare ourselves by facing our own mortality.  We can and should be living and breathing versions of memento mori. We should not run and hide. Our death denying culture needs leaders to help our very sick and dying face the abyss. If not us, then who…?

Complete Article HERE!

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07/25/17

Want Control Over Your Death? Consider A ‘Do Not Hospitalize’ Order

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Eighty percent of terminally ill patients say they don’t want end-of-life care to be intensive.

By Ann Brenoff

Eighty percent of terminally ill patients say they want to avoid hospitalization and intensive care at the end of their lives. But such hospital stays nevertheless occur fairly frequently ― even though they don’t seem to make much difference. Studies have shown that people who received less intense care in the last six months of life did not have a higher mortality rate than people who received more intense care.

So it’s worth asking why elderly and terminally ill patients are put through stressful hospitalizations, procedures and medical tests that only wind up blemishing their final days.

One reason: Hospitals can do it, and Medicare will pay for it.

A report from the Dartmouth Institute for Health Policy and Clinical Practice notes that “the intensity of care in the last six months of life is an indicator of the propensity to use life-saving technology.” The institute found that if you live in an area that has a big teaching hospital with the latest medical equipment, chances are you’ll spend more of your final days admitted to it. In 2014, patients in Boise, Idaho, spent 3.9 days of the last six months of their lives hospitalized, compared to 13.7 days for New York City patients.

Some patient advocates and chronically ill patients want to reduce end-of-life hospitalizations through the use of advance care planning directives. The most common of these is the “do not resuscitate” order, which instructs the hospital and doctors that if your heart stops beating or you stop breathing, you do not wish to have CPR. Absent such a directive, hospital staff will try to help any patient whose heart or breathing has stopped.

Far less common ― but potentially much further-reaching ― are “do not hospitalize” directives, which stipulate that you don’t want your caregivers to take you to the hospital for care. A recent study found that these orders are indeed effective at preventing unwanted hospitalizations.

A small research study of nursing home residents in New York state found that overall, 6 percent of residents had DNH orders. Of those people, just 3 percent spent time in a hospital during their last 90 days of life, compared to 6.8 percent of people in the study who did not have a DNH order. In other words, the people who did not have an order were more than twice as likely to be hospitalized.

On a practical level, having a directive that says you don’t want to be admitted to a hospital ― except under certain conditions, specified by you ― basically means a nursing home or family caregiver will do what they can to treat you and let nature take its course. Hospice care is available through Medicare as well.

Family caregivers sometimes mistakenly think “do not hospitalize” means “do not treat.” But that’s not the case. A DNH order can stipulate that under specific circumstances, like if you are bleeding or in extreme pain, you do, in fact, want to be treated at a hospital.

Advance medical directives have been publicly encouraged for a long time, yet only 38 percent of Americans have them, according to a recent study. Perhaps it’s because death and dying are topics that make us uncomfortable. Or perhaps it’s just that directives don’t always work.

Doctors are not legally bound to follow your advance directive. The law gives them and others legal immunity if they follow your wishes ― but they are not obligated to do so. ƒIn fact, doctors can refuse to comply with your wishes if they have an objection of conscience or consider your wishes medically inappropriate. If that’s the case, they have an obligation to transfer you to another health care provider who will comply, according to the American Bar Association. But this is hardly a guarantee that your directive will ultimately be carried out.

A bigger problem may come from the ambulance crew. Advance medical directives are pretty ineffective once someone dials 911. The job of a first responder is to attempt to resuscitate the patient and transport them to a hospital. If you don’t want that to happen, why call?

Overall, DNH orders aren’t being widely used. In 2007, a Harvard Medical School researcher examined a national database of more than 91,000 nursing home residents with late-stage dementia, and found that just 7.1 percent had DNH directives.

But not everyone thinks that’s a bad thing. Dr. Rebecca Sudore, a geriatrician and medical professor at the University of California, San Francisco, said that while “DNH may be good for decreased costs, it is not always the best thing for the patient.”

“Although DNH may be appropriate for some patients, I am concerned about what widespread DNH orders may mean on a population level,” Sudore told HuffPost in an email. “It may be appropriate for some, and not appropriate for many other people. I think that other outcomes such as controlled symptoms, relief of suffering, quality of life, satisfaction, caregiver stress etc. are as important, if not more important, than hospitalization.”

She noted that the “the goal should be to honor patients’ wishes and to provide care that alleviates suffering

“For some people, staying out of the hospital may accomplish their goals if they have access to good quality symptom control and care,” she said. “For other people who are suffering from symptoms that cannot be controlled at home or in a nursing home, then being in the hospital may be the best way to honor their wishes and prevent suffering.” And those wishes should be optional, she said, and subject to change.

Complete Article HERE!

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04/19/17

At the End of Life, a Way to Go Gentle

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While confronting the prospect of death, people like me — grappling with a diagnosis of advanced cancer — often consider what sort of care they want and how to say goodbye. Given the delicate negotiations in which the dying need to engage, do intensive care physicians with their draconian interventions act like proverbial bulls in a china shop? My fear of pointless end-of-life treatments, performed while I was in no condition to reject them, escalated when I read Dr. Jessica Nutik Zitter’s book, “Extreme Measures: Finding a Better Path to the End of Life.”

Dr. Jessica Nutik Zitter

Dr. Zitter confronts the sort of scenario that haunts me because she works in specialties that are sometimes seen as contradictory: pulmonary/critical care and palliative care.

In her new book, she refers to the usual intensive care unit approach as the “end-of-life conveyor belt.” She argues that palliative care methods should be used to slow down and derail the typical destructive I.C.U. approach that often torments people it cannot heal.

Over the past few years, quite a few studies have indicated that physicians are less likely than the general population to receive intensive care before death. Many doctors choose a do-not-resuscitate status. Dr. Zitter highlights the insight upon which her colleagues base their end-of-life decisions.

According to Dr. Zitter, even what are intended to be temporary intensive care measures can put a patient on that conveyor belt to anguish and isolation. She writes of breathing machines, feeding tubes, cardiac resuscitation, catheters, dialysis and a miserable existence prolonged within long-term acute care facilities. In an account of the evolution of her own ideas about doctoring, she also explains why it remains so difficult to change intensive care units so they can better serve the terminally ill.

“Extreme Measures” analyzes a complex cluster of suspect but ingrained attitudes that bolster hyperaggressive methods. Medical training fosters a heroic model of saving lives at any cost. American can-do optimism assumes all problems can and should be solved. Both doctors and patients tend to subscribe to a “more is better” philosophy. If technology exists, surely it should be used. Physicians’ fears of litigation plays a part, as do patients’ fantasies of perpetual life. For too many, death remains unthinkable and unspeakable.

One of Dr. Zitter’s compelling patient narratives teaches a clear-cut lesson. It involves an 800-pound man “too large to fit into the CT scanner,” but “too unstable to be transported to the nearby zoo’s CT scanner.” Surgery would therefore be impossible. The patient, a 39-year-old she calls Charles, is bleeding from his intestinal tract, his heart is exhibiting erratic behavior, his kidneys have failed and his liver is foundering. Yet he and his relatives want the doctors “to do everything.”

Although Dr. Zitter tries to explain to Charles and his family that chest compressions would break his ribs and electric shocks would burn his skin, they insist on “a full-court-press resuscitation attempt when he died.” To Dr. Zitter, “Running a code on this dying man felt… akin to punching him in the face and would probably have had the same utility.” Honoring his wishes would require breaking the oath: “First, do no harm.”

Other case histories in “Extreme Measures” are more troubling because their moral implications are less obvious. After a dramatic brain bleed from a major clot, a 45-year-old she calls George faces an operation that cannot return him to who he had been. His wife wants to know what Dr. Zitter would do if he were her husband. She explains that her husband would accept paralysis if he could remain communicative with her and their children at home.

Although Dr. Zitter fears that the surgeons who operated on George never broached the topic of his quality of life after surgery, she is heartened upon his return to the I.C.U.: He gives a thumbs-up. “What if, as a result of our talk, his wife had not consented to the surgery? Would I have been his unwitting killer?” This moment of self-doubt is followed by another turn of the screw. When Dr. Zitter later phones George’s wife, she says: “I am a single mother, but with another angry child.”

“Extreme Measures” includes a number of stories that explore the difficulties of talking about the subject of death with dysfunctional families, wracked by depression or feuds, and across racial, religious and ethnic divides. Often and to her credit, Dr. Zitter finds herself baffled, unsure of how to balance cultural priorities, human needs and medical possibilities. Throughout, she struggles personally and professionally to redefine common responses to terminal conditions.

In place of hope for recovery, Dr. Zitter emphasizes “the miracle of time at home, of pain management, of improved quality of life. These are all concepts I have seen families embrace in place of survival — the only concept of hope previously imagined.” And to people refusing “to play God” by withdrawing a breathing tube, she asks whether “they were playing God by keeping [a relative] alive when her body was actively dying.”

For readers who wish to avoid the end-of-life conveyor belt, Dr. Zitter concludes “Extreme Measures” with some practical advice on, for example, procuring a Physician Order for Life-Sustaining Treatment (POLST), a legal directive that emergency responders, paramedics and emergency room doctors are supposed to follow (but sometimes don’t, as Paula Span reported in The Times earlier this week).

Without this sort of documentation of end-of-life wishes, Dr. Zitter writes, a 90-year-old with metastasized prostate cancer ended up paralyzed and tethered to machines after cardiac arrests. “Our well-intentioned resuscitative efforts had crushed his cancer-weakened neck bones, rendering him quadriplegic.”

Passionately and poignantly, Dr. Zitter reminds us that “conveyor belts, regardless of their destination, are not meant for human beings.” Sometimes less is more.

Complete Article HERE!

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04/13/17

Medical advancements have changed the way we die and view the process of death

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The process of dying is a more complicated issue today because of advancements in life-sustaining technologies

“Due to innovations in medical technology, our perception of death has changed as we are more able to alter the natural path of the human life.”

By Yasmine Mian

How we die is a profoundly personal journey.

As college students, we don’t consider the topic of death frequently, let alone the process of dying. However, it is a universal theme that does not discriminate against anyone, no matter their age.

Throughout history, the process of dying is represented differently across cultures and religions. While some religions, like Buddhism and Hinduism believe it marks the beginning of rebirth or reincarnation after death, others, like Christianity, believe it marks the beginning of a journey to Heaven.

Regardless of the beliefs, to fully understand the process of dying and its aftermath, we must examine how the dying process has changed over time.

Throughout our history—particularly recently with medical advancements—the human race has looked far and wide to answer a complex question: What is a natural death? With so many life-sustaining technologies to potentially keep us alive indefinitely, many don’t know what a natural death entails anymore.

Universities like ASU offer courses exploring the cultural and religious aspects of death and dying. 

While the biological process of dying is universal, the behaviors associated with expressing grief are very much culturally bound. Courses like these offered at universities allow students to learn how cultures have developed ways to cope with the process of dying.

Sally Johnson, a professor of psychology at Glendale Community College, believes that all students should study the cross cultural aspects of death.

“By learning about the way different cultures and religions treat the dying process, we can gain more insight into how they deal with the heartache and pain that comes along with death and how it manifests itself in the funeral/death process,” she said. 

However, it is important to remember that the process of dying has drastically changed over the past several decades with the development of modern resuscitative technologies. It seems as if a “natural death” has no place in our society anymore.

The idea of a natural death is merely a reflection of the social and scientific context of the time that death took place in.

When we picture a natural death, we envision an individual lying in bed surrounded by loved ones, taking their last breaths in a place of comfort and homeliness, a sight of peace and tranquility often dreamed of in literature.

However, with the help of modern medicine and innovative technology, our perceptions of natural death have now changed.

Thanks to modern medicine, diseases like polio, scarlet fever and others have been rendered preventable, treatable, or far less common now. This has led to a dramatic extension of life.

However, these new technologies have also been used to prolong the life expectancy of individuals with terminal illnesses, such a cancer.

While the idea of prolonging life might sound like a good thing, it often forces patients, their loved ones and their doctors to make difficult, painful decisions.

In some cases, when patients have no hope of surviving, we use technology and drugs to simply keep them alive in a biological sense. 

Families and doctors may feel as though they need to exhaust every available treatment or medication to prolong the dying process, however, that can be a naive and selfish outlook. 

But what we don’t understand is that there is a difference between being alive and living. Medicine can’t cure everything, but we often act as though death is optional.

The dying process is usually centered around the elderly, who are approaching there last few months of life due to natural causes. When younger individuals do die, it’s usually the cause of an accident or life-threatening disease.

However, individuals of all ages, especially students should be aware of the cultural significance of death, especially as we begin to cope with the loss of loved ones or go into professions where death is common. 

We must recognize the limits of our human knowledge and technology and accept the fact that eventually, all of us will die. As morbid as it sounds, it is a natural process of life and should not be pegged as a taboo topic. 


 

Complete Article HERE!

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04/12/17

Sharing One’s End of Life Choices – via a Mobile Device

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Patients can now use their smartphones to share their wishes for end of life care — whether or not they want to be intubated or have CPR, for example — with ambulance crews, loved ones, emergency-room doctors and hospitals.

No more fumbling for a piece of paper, signed by the doctor, to show health-care providers when a terminally ill loved one is rushed to the hospital. Patients in New Jersey can have their wishes become part of their electronic medical record and shared on mobile devices.

The online version of the “Practitioner Orders for Life-Sustaining Treatment” was launched Friday, almost five years after New Jersey authorized the use of a paper form for frail and severely ill patients. The online version will be part of a registry maintained by the New Jersey Hospital Association, with strict safeguards for patient privacy.

“We’re moving beyond having a green paper hanging on the refrigerator,” said Health Commissioner Cathleen D. Bennett, speaking of the paper version of the POLST forms. When patients articulate their preferences, it helps them to live on their own terms at the end of life, she said.

They can also express their goals for care, ranging from a full attack on their disease to palliative or comfort care. The form is signed by both the patient and the doctor or advanced-practice nurse, and is considered a medical order. Emergency personnel can follow it whenever the patient can’t speak for himself.

Joseph Carr, NJ Hospital Association Chief Information Officer, demonstrates how the emPOLST can be accessed electronically and how it can help inform care.

“Through this tool, more health-care providers will have immediate access to critical information they need to treat the patient according to the patient’s health-care preference,” Bennett said. “Patients with smart phones also will be able to share their electronic POLST form with a new physician, specialist or emergency-room doctor.”

In New Jersey, about 11,000 patients a year created POLST forms at each of the hospitals that participated in a study of it, said Joseph A. Carr, chief information officer for the New Jersey Hospital Association, who demonstrated the electronic version.

At a ceremony at the Villa Marie Claire Hospice in Saddle River, Bennett and Betsy Ryan, president of the association, signed an agreement for the association to become the online repository for the POLST forms. The villa, a former convent, is an inpatient hospice for 20 patients that is part of Holy Name Medical Center.

Talking about the end-of-life is one of the most important conversations a family can have, said Michael Maron, president of the medical center. The hospice’s decade of work has taught him that patients feel comforted and empowered when they are able to communicate their choices clearly and effectively, and they are understood by caregivers and loved ones.

The POLST form is available from the Department of Health or the New Jersey Hospital Association. For more information, also see National POLST Paradigm.

Complete Article HERE!

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