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The Choices We Make for Others at the End of Life

A palliative care nurse explains what to expect in the last days and hours.

A dying person’s attention turns toward a place we do not see and that they cannot explain. They are done with the business of the living, as it were, and more or less finished with us.

Excerpted from Advice for Future Corpses by Sallie Tisdale.

In Advice for Future Corpses, author and palliative care nurse Sallie Tisdale shares insight and contemplation into what constitutes a good death. Managing our own avoidance and fear, she writes, is key to shepherding a peaceful final passage. Here she describes what to expect, and consider, during the last days and hours.

Death takes many forms. One death is anticipated over months. Another death is stunningly abrupt. And now and then death is held back by technology. I have seen how these deaths are different, and they are all the same, in the end: A person breathes and then breathes no more. He enters a stillness like no other. Breath. Another breath, and then no more. But when the breaths are made by a machine or the blood pressure is sustained by powerful drugs, someone has to make an awful decision.

Many aspects of medical and nursing care become unnecessary or intrusive for a dying person. Will the result of a lab test change the plan? If not, then don’t do it. Why take another vitamin? Are you really worried about the cholesterol level at this point? You don’t need to check blood pressure routinely. But sometimes a person is already hooked up—intravenous fluids and drugs to raise blood pressure and support for breathing—and the only way to stop the intrusion is to unhook. The advent of machines like defibrillators and ventilators created a new kind of crisis for the dying. (One report from the time referred to “this era of resuscitatory arrogance.”) A lecture in 1967 about how medicine should define death was called “The Right to Be Let Alone.”

Futility is a legal term in health care. A doctor, a team of people, even a hospital, can invoke futility and refuse to continue treatment that only prolongs suffering. This doesn’t happen immediately; it’s a drawn-out, painful process. The vocabulary makes everything worse. Doctors speak almost glibly about “withdrawing” or “withholding” treatment. The nurse says, “There’s nothing more to be done.” Which is a stupid thing to say, because there are all kinds of things to be done; they just don’t involve trying to keep someone alive. Such comments create a terrible sense of culpability in a heartbroken spouse or child. But what is really being done is good care.

Journalist and author Virginia Morris pleads for a change of terms: “When we take a terminally ill patient off life support, we are not ‘pulling the plug,’ we are ‘freeing’ the patient to die. We are ‘releasing’ her from excessive technology and invasive treatments. When we allow death to happen, we are not killing people, we are caring for them. We are loving them.”

We want to put it off as long as possible. Even if we are sure that Mom or Dad wouldn’t want to be kept alive “on a machine,” in the moment of crisis when everyone is yelling at us to decide, we’re not prepared. We literally have no experience making such a decision; we may do it only once in our lives. 

The hardest part is the loss, but a close second is the need to shove your own fears and desires to the side. Surgeon and bioethicist Sherwin Nuland said that at the time when decisions about life support and life-prolonging treatments are being made, “everybody becomes enormously selfish.” He emphatically includes doctors and nurses in with the family. We may not recognize that selfishness is driving the words we choose or the kind of advice that’s given. Doctors may not have any idea they are doing this. When they offer yet another experimental drug, they may genuinely believe they know what’s best for the patient. But best: Best is subjective. Best is your point of view. Best is what you want.

Being able to make a decision like this for another requires an understanding of each other, and time for self-reflection. You have to consider the painful, scary, and unwanted fact of separation. You are the proxy for the person in the bed. What she wants is all that counts. You want the person to live. Or you want the person to die your version of a “good” death. Or you want him to live another week until the rest of the family arrives. You want the gasping holler of pain in your chest to go away. Can you choose a course of treatment that will allow the person you love most in the world to die? Can you say no on their behalf to something you would choose for yourself? Can you say yes on their behalf to an end you would never want? Can you set your own beliefs to the side? This inevitable conflict of interest—you are dying and I want you to live—is why a spouse or close family member often should not be the one making all the decisions. You have to ignore the begging chorus in your head, because it’s not about what you want.

In an old Japanese tradition, a person writes a poem on New Year’s Eve that will be read at their funeral if they die in the coming year. A modern addition to this practice includes having a professional funeral photograph taken and picking out the clothing you want to wear, in styles specially made for corpses. The Japanese word jōjū means ever-present or unchanging. I like the translation “everlasting.” The image of jōjū is often the moon. How can the moon, which is never the same from night to night, be everlasting? And yet it is always the same moon. Jōjū is that quality of unstoppable change and the eternal at once. Death comes even while we are alive.

In the early 1700s, Mizuta Masahide, an admirer of the great poet Bashō and a doctor by profession, had a fire at his home. It burned down his storehouse, leaving his family impoverished. His poem that year:

My storehouse burned down.

Now nothing stands between me

And the moon above.

Everlasting.

A dying person’s attention turns toward a place we do not see and that they cannot explain. They are done with the business of the living, as it were, and more or less finished with us. Now they are not a mother or a plumber or a friend. Now they are entirely a dying person, and the world begins to shine. In spite of going hours without speaking, in spite of needing help to button a shirt, he is busy. He may not have the energy to talk, because he is waiting for something and that takes everything he has left.

He may be waiting to understand why.

Laugh. Laugh! Sing. The last kiss, the last dream, the last joke to tell. I have been telling you all the many things we might say, and shouldn’t. Things to say as the end is coming: I love you. I hope the best for you. We will be all right. Go with peace.

Then we are listening again. We are returning to stillness, and to hearing what is being said without words. Most of us are not used to silence. It takes getting used to. The background noise of our lives is near-constant: endless voices, television, music, traffic, the ping from incoming texts, the demanding requests of daily life. Because we aren’t used to silence, we don’t understand how to be in it, how full it is. We may struggle against it, but silence is part of this world now. Silence is attention. Attention on this, right here, right now. Attention on the hand against the sheet, the texture of the cotton, the cool cotton. The hand rising to take a cup; the hard, warm curve of the cup. The steam. The heat. The sensation of the bending tendon in the hand, the scratch of a nail along the bedcover. Inhalation. Exhalation. All this in silence, filled with the music between words, what you might call the music of the spheres—the world’s hum. The faint vibration of breath and muscle and time.

The writer Dennis Potter died of pancreatic cancer. A few months before his death, he gave a remarkable interview on the BBC. His wife was also dying, of breast cancer, and he was her main caregiver. He was relaxed and smiling—his pain cocktail was a combination of morphine, champagne, and cigarettes—and full of his signature dark humor. Dying, he said, gave him a new perspective on life; it gave him a way to celebrate.

“The blossom is out in full now,” he said, describing what he saw from his office window. “It’s a plum tree, it looks like apple blossom but it’s white, and looking at it, instead of saying, ‘Oh, that’s a nice blossom’… last week looking at it through the window when I’m writing, I see it is the whitest, frothiest, blossomiest blossom that there ever could be, and I can see it. Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous.” He couldn’t really explain, he added; you have to experience it. “The glory of it, if you like, the comfort of it, the reassurance … not that I’m interested in reassuring people, bugger that. The fact is, if you see the present tense, boy do you see it! And boy can you celebrate it.”

He died nine days after his wife.

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Let’s talk about death

A growing number of medical schools are incorporating palliative care and end-of-life discussions into the curriculum. The result? Less suffering for patients and physicians.

by Amy Paturel, MPH

During her first rotation in internal medicine, Dawn Gross, MD, PhD, assessed a bone marrow transplant patient along with a group of fellow residents and her attending physician. When they left the young patient’s room, the attending said, “He’s going to die.” Two days later the patient was dead. 

“I remember thinking, ‘What did he see that I didn’t see?’” says Gross, who is now an associate professor in the department of palliative medicine at the University of California, San Francisco. Over time, she learned the science of illness and death and how to tell when a patient is dying. But what stuck with her was the fact that the patient had no idea he was going to die. 

Traditionally, a doctor’s primary job was to keep you alive, not discuss how you want to die — or even if you are going to. Now, the paradigm is shifting. Instead of employing extreme measures, doctors are increasingly learning how to stop interrupting death — and to talk about what that looks like. 

“Patients need to know what is happening to them, so they can plan,” says Tamara Vesel, MD, chief of palliative care and professor at Tufts University School of Medicine. “And doctors need to see illness and death as an opportunity for societal and personal growth instead of a societal and personal failure.” 

Unfortunately, data suggest most doctors feel ill-equipped to tackle end-of-life conversations. A 2014 study published in Palliative Supportive Care reported that more than half of respondents deferred conversations about advance directives to emergency room physicians. And in 2016, 88% of residents reported little to no training on end-of-life care during residency. But that is starting to change. 

“Doctors need to see illness and death as an opportunity for societal and personal growth instead of a societal and personal failure.”
Tamara Vesel, MD
Tufts University School of Medicine

Increasingly, medical school leaders are implementing end-of-life training that includes real-life practical skills. At the same time, more physicians are beginning to view end-of-life conversations as a medical tool that’s as important as any drug or device. The result: “Don’t die on my watch” is being turned upside down. 

A paradigm shift 

With advances in medicine and technology, Americans are living longer, often with ongoing or repeated hospitalizations. More than one quarter of all Medicare expenditures occur during a patient’s last year of life. But life-extending treatments have trade-offs. 

If faced with a serious illness, most people say they would prefer a natural death rather than exhausting all medical options, according to survey data. And more than two-thirds of people say they want to die at home, while less than a third actually do. Medical schools are uniquely positioned to help bridge the gap between what patients want at the end of life and what they’re actually getting.

“Just because we have the technology to prolong life doesn’t mean it’s appropriate to use it,” says Vesel. “The problem is, we’re so afraid of paternalism in medicine that we don’t use our medical knowledge and experience to sufficiently guide patients.” 

Instead, many doctors focus on presenting a smorgasbord of medical choices — “then we let the patient choose so we feel like we’re off the hook,” says Daniela Lamas, MD, a critical care doctor at Brigham and Women’s Hospital, Harvard faculty member, and author of You Can Stop Humming Now.

Yet, according to Scott Halpern, MD, PhD, MBE, professor of medicine at the Perelman School of Medicine at the University of Pennsylvania, the single most important determinant of the choices patients make is how doctors communicate. In a series of studies, Halpern and his colleagues discovered that seriously ill patients are more likely to select comfort-oriented care at the end of their lives if that was the default option they were randomly assigned. Similarly, when chest compressions, breathing machines, and feeding tubes were the default choices, they were more likely to select those invasive measures, too.

The goal for physicians then is to know their patients well enough to shepherd them toward the treatment path that best matches their values. “It is scary to ‘nudge’ a patient toward an end-of-life decision, but maybe that’s what it means to be a doctor — leading patients toward the decisions that are most consistent with their wishes,” says Lamas. 

That’s one reason insurers are paying doctors to have real conversations around end-of-life planning. The goal: to limit suffering for the patient and his or her loved ones — but also to provide a meaningful way for physicians to help guide patients through the natural process of dying.

A new wave of training

Currently, the Liaison Committee on Medical Education, the organization that accredits medical schools, does not require clinical rotations or courses on palliative medicine or end-of-life care. Part of the issue is that these skills “can’t be taught through lectures and demonstrations,” says Susan Block, MD, a professor of psychiatry and medicine at Harvard Medical School. “The only way to improve competencies is through field practice and feedback.” 

To that end, a growing number of medical educators are creating rotations within hospices, nursing homes, and assisted living facilities to give students and residents an opportunity to practice these skills. Institutions, including Tufts University School of Medicine, the Robert Larner, M.D., College of Medicine at The University of Vermont, University of California, San Francisco, School of Medicine, and others are weaving palliative care training into everything students do. “That’s a huge culture shift,” says Gross. 

To determine how best to train students to do this important work, Tufts University School of Medicine Dean Harris Berman has been meeting with the academic deans of four Massachusetts medical schools every six months since early 2017. The deans agreed upon a set of minimal competencies every medical student should have prior to graduation, and continue to work on next steps to meet and test these competencies.

As part of this effort, Tufts University School of Medicine plans to introduce a new curriculum in the fall of 2019. “Rather than a single class, a ‘Patient Experience’ thread — encompassing end-of-life and palliative care, advanced communication, and impact of health on patients and their families — will follow students through all four years of medical school,” says Vesel. 

The Larner College of Medicine, too, is equipping physicians-in-training to have these conversations. In addition to integrating palliative care and end-of-life training into all four years of medical school, third year students participate in a “bridge week” focused solely on hospice and palliative medicine. The 35-hour curriculum covers practical skills, symptom management, communication tools (with hands-on simulated training), and resilience, explains Stephen Berns, MD, director of education for palliative medicine and assistant professor of family.

Using tools developed by a nonprofit training organization called VitalTalk and Atul Gawande’s Ariadne Labs’ Serious Illness Care Program, Larner COM students learn how to share information, respond empathically, and drill down patients’ values. “It’s really about helping medical students and residents use their medical expertise to identify a treatment plan that matches patients’ goals,” says Berns. 

At the Perelman School of Medicine, Halpern lectures fourth year medical students about how patients, caregivers, and clinicians make end-of-life decisions. Their program also requires pulmonary and critical care fellows to participate in end-of-life communication training before beginning their fellowship. “Each fellow has to have a number of supervised conversations with real patients and family members,” says Halpern. “They’re also required to watch and listen to attendings engage in similar conversations.” 

Surveys consistently show that care providers who do this well can make a significant difference for patients. Research indicates that palliative medicine can reduce anxiety and pain, relieve symptoms, and improve quality of life and mood. It can also reduce spending, according to a recent meta-analysis of inpatient specialty palliative care.

Coming full circle

At the dawn of medicine, physicians were with their patients throughout the life cycle — and certainly at their death. Doctors viewed being at the patient’s deathbed as an honor, a privilege. Medicine is slowly returning to those values.

“We’re all taught a structure for taking medical notes. The first stop: chief complaint, abbreviated as ‘CC.’ My dream is that instead of the chief complaint, it’s ‘CW,’ or chief wish. What does the patient wish for? When we start to ask what’s getting in the way of doing that, it changes how we care for people.”
Dawn Gross, MD, PhD
University of California, San Francisco

Research consistently shows that doctors who are comfortable with end-of-life issues provide better care to dying patients than those who aren’t. “More and more clinicians are recognizing their professional and moral responsibilities extend beyond preserving life and include helping people whose life is coming to an end have their last days weeks and months be as comfortable and fulfilling and meaningful as possible,” says Halpern. 

Adds Gross, “We’re all taught a structure for taking medical notes. The first stop: chief complaint, abbreviated as ‘CC.’ My dream is that instead of the chief complaint, it’s ‘CW,’ or chief wish. What does the patient wish for? When we start to ask what’s getting in the way of doing that, it changes how we care for people.”

Complete Article ↪HERE↩!

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Patients in end-of-life care to be treated with magic mushrooms

A spokeswoman for Palliative Care Australia said anxiety is a common and distressing symptom for those entering the final stage of their life.

By Benjamin Ansell

Palliative care patients will be treated with the psychoactive ingredient in magic mushrooms in a bid to reduce their anxiety during end of life care.

The first of 30 patients in Melbourne’s St Vincent’s Hospital trial will be treated with psilocybin in April after a year-long battle to have the study approved by the ethics committee, as well as state and federal authorities.

Patients will be given a single dose of the psychedelic drug, which stimulates feelings of euphoria and is believed to be able to ease anxiety, fear and depression for up to six months.

Applicants will be screened, requiring a state government permit to take the medication, and will be closely monitored by two clinicians on the ‘dose day’ while the initial high wears-off.

“With therapists in the room providing therapy it will allow people to have a heightened awareness of their situation, see the problem and work through it,” Mark Bowie, director of Palliative Medicine at St Vincent Hospital, said.

St Vincent’s clinical psychologist Dr Margaret Ross said patients in the study will be given a single dose of the drug in capsule form.

A similar trial conducted at New York University found 70 per cent of patients later reflected on the psilocybin experience as one of the top five most spiritually significant experiences of their entire lives, while 87 per cent reported increased life satisfaction overall.

Vice President of Australia’s Psychedelic Research In Science and Medicine Association Dr Stephen Bright told 9News that the study “sets a precedent” for more research into the medical application of psychoactive substances.

Patients will be treated with the psychoactive ingredient in magic mushrooms.

“I think it’s fantastic this study has been able to obtain the requisite approval, there have been multiple attempts to use psychedelics which have all been knocked back,” Dr Bright said.

“The fact that this has been able to secure approval is very encouraging.”

Dr Bright, also a senior lecturer at Edith Cowen university, is currently attempting to secure funding and ethics approval for another study on the potential of MDMA to be used in the treatment of Post-Traumatic Stress Disorder.

A spokeswoman for Palliative Care Australia told 9News.com.au anxiety is a common and distressing symptom for those entering the final stage of their life.

“This can be triggered by concerns and fears about how they will die, how their families and loved ones will cope as well as existential or spiritual concerns,” the spokeswoman said.

Complete Article ↪HERE↩!

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4 Amazing End-of-Life Celebrations for Beloved Pets

By: Joel Boyce

John Grogan, the author of “Marley and Me,” perfectly sums up the unique love that humans have for their animal companions:

Such short little lives our pets have to spend with us, and they spend most of it waiting for us to come home each day.
It is amazing how much love and laughter they bring into our lives and even how much closer we become with each other because of them.

And he’s far from the only person to lament the short time we have with a beloved pet. After all, we’re together in sickness and health.

So what do you do when your animal friend inevitably faces the end of their life? Here are a few anecdotes that demonstrate just how important pets can be to their human families.

1. Mayor takes cross-country road trip with 10-year-old dog

As the mayor of a town in Massachusetts, Paul Heroux hadn’t taken a vacation in over three years. But that changed when his beloved Mura was diagnosed with an aggressive blood cancer and given only a few months to live.

Heroux dropped everything and embarked on a cross-country road trip that was all about making his dog happy. Mura has even been picking their destinations, apparently pulling him south toward California once they hit the Pacific Coast.

I definitely agree that when going out for a walk or a ride, your dog should be at least as involved in making decisions as you are.

2. Photographer spends 100 days remembering her beloved cat

Preston Gannaway, a Pulitzer Prize-winning photographer, processed her grief for her recently departed best friend, Isis, the only way she knew how: by poring through 17 years worth of photographs to share on Instagram for 100 days.

Sometimes pets are lost suddenly, and we don’t have much time to give a proper goodbye. In Gannaway’s case, she needed months after Isis’s death to finish saying her final farewell. The result is a testament not to a cat’s final days but to her entire life with her human companion.

3. Foster Family Has Goodbye Party for Dying Dog

It doesn’t happen as often, but sometimes it is the animal that loses their human first — and this was the case with Peanut. Fortunately, after her owner died, a rescue shelter and a foster family worked together to ensure that her final days were good ones. They even gave her a big goodbye party – an incredibly kind gesture to celebrate a dog that they had known only a short time but had fallen in love with nevertheless.

I’m sure the owner that predeceased her would have appreciated this loving gesture.

4. Veteran and His Dog Have a Perfect Day

In an excerpt from the book, “Going Home: Finding Peace When Pets Die,” author Jon Katz tells the story of Harry, a former soldier, and his canine best friend Duke. Suffering from a weakening heart, the dog was expected to pass away soon. To celebrate his life, Harry spent an entire day with Duke, visiting all of their favorite places — and even prepared a special dinner of sirloin steak for the animal.

Many little moments in this story make it special, but there are two important takeaways for me. First, Harry didn’t plan this perfect day just before an appointment for euthanasia. He didn’t let the day be soured by the thought that it would be his last day with his dog, because it wasn’t.

Second, this day was not about a huge grand gesture like a big party or a trip, but it was still special. It was all about revisiting and enjoying familiar sights, with a focus on making Duke happy — which, in turn, made Harry happy.

Complete Article ↪HERE↩!

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I trekked to a graveyard to learn how my ancestors died.

But can genealogy help predict how long I will live?

By Debra Bruno

Fascinated with genealogy, I’ve started spending too many hours chasing snippets of family stories. I figure if I can learn something about my family tree, it might shed light on my health and how long I will live.

I’ve become obsessed with two ancestors in particular: Permelia Van Valkenburgh and her son Amasa Matoon Van Valkenburgh.

Permelia was my great-great-great grandmother. Married at 17 to a distant cousin who shared her last name, she gave birth to 10 children over 18 years and died in 1855 at age 42.

Permelia was a 19th-century farm wife in the Catskill Mountains, a place where people didn’t roam alone at night for fear of panther attacks. Two of her 10 children died in infancy and one at 20. Her next-to-last child, Amasa, was my great-great grandfather. He was 9 years old when his mother died.

What killed her? If it was childbirth, there is no record of a child born or buried the year she died. If it was flu or tuberculosis or another contagious disease, there is no evidence of anyone else in her family dying in May 1855, although both were common causes of death in 19th-century communities. Maybe it was a laceration that became infected, picked up in unrelenting farm and housework. The month of May in the high Catskills could be chilly, and the winter stores of food would have been nearly depleted. Crops would not yet have produced anything. There was the occasional flash flood in the nearby creeks, so maybe she drowned.

Curious about what killed people in rural New York in the mid-19th century, I found the U.S. Census Mortality Schedules for the state from 1850 to 1880. The United States recorded this information once every 10 years and listed only those who died the year of the survey. Even so, I found some interesting details for Greene County, where she lived, in 1850: consumption (tuberculosis), cholera, dysentery, whooping cough, infection of lungs, infection of hand, infection of brain, asthma, childbirth, drowning and cancer were listed as causes of death. The most frequent cause was cholera. Many times, the named cause of death for people in their 80s and 90s was “old age.”

Did any of this have any meaning for me? Probably not. “The big picture is the shift from infectious disease as a major cause of death to chronic diseases,” said Charles Rosenberg, professor of history of science at Harvard. Causes of death such as tuberculosis were “background noise,” he said, so common that they were unremarkable. What drew more attention were cholera epidemics or influenza sweeping through communities.

Susan Speaker, a historian with the National Library of Medicine at the National Institutes of Health, said that before the 1920s, more Americans died of “microbe-caused diseases” than anything else. The balance started to shift by the 1930s and ’40s, she said.

In other words, a farm wife living in the country — while not exposed to the overcrowding and bad water of cities — would have had a number of other health challenges.

For instance, “if you came down with appendicitis in the 1900s in the country, you might be out of luck,” said Speaker, “unless you had a local practitioner who was a decent surgeon.”

While I was getting closer at making an educated guess at the cause of death, my mother and I ventured into the Catskill Mountains one Sunday morning in August after services at the First Reformed Church in Athens, N.Y., the village on the Hudson River where we both grew up and where many of our ancestors now rest.

We drove high into the mountains until the ski resorts and gift shops dropped away, the houses became more spread out, and the forests got thicker in the Catskill State Park, land first preserved by the state in 1885. Finally we reached the turnoff to Westkill, the hamlet of a hamlet, tucked between hills in a valley.

The cemetery was small, with maybe 40 stones. The grass had been newly mowed, and damp cuttings thrown by a power mower still plastered the white sides of the Westkill United Methodist Church (built in 1848) and, next to it, the Westkill Baptist Church (built in 1830). One or two graves had collapsed, leaving a deep, grass-lined trench in the earth. We peered inside the churches, but both had been long abandoned. Even the pews were gone.

Back at the far edge of the cemetery, just before the ground dropped off to a creek, I found a dark, mottled headstone. It read:

PERMELIA A.
Wife of Jacob Van Valkenburgh
Died May 7, 1855
Aged 42 years, 3 mo, 5 ds

Near her was the stone of James, the 20-year-old son who died just two years before her. Along with losing babies Elizabeth, Huldah and George, did James’s death in 1853 lead to her decline?

Just a few steps away was her son Amasa, my great-great grandfather.

Amasa M. Van Valkenburgh
Died July 1, 1890
Aged 44 years

Here was another ancestor who died young. Amasa married at age 24, had five children with his wife, Christina Smith, and died in the middle of the summer.

Town records in Lexington, N.Y., eventually turned up his cause of death: “acute peritonitis,” which is an inflammation of the abdominal wall. Untreated, as it would have been in pre-antibiotic times, peritonitis leads to sepsis and death. What is still a mystery is what caused the peritonitis. It could have been a puncture wound to the stomach. It also could have been cirrhosis of the liver, which often leads to peritonitis. NIH’s Speaker said it would be impossible to know whether the peritonitis resulted from cirrhosis, a perforated gastric ulcer, a burst appendix or a ruptured gall bladder.

Buried alongside him was his wife, Christina. She went on to remarry and outlive a second husband. Christina passed away in 1946 at age 96. She would have remembered the Civil War, World War I, women getting the right to vote and World War II.

Of her five children with Amasa, two lived into their 90s, and another to 87. And her grandson, my grandfather Orrin, lived to 97.

Does this mean, then, that I could count on a longevity gene?

A study published in Genetics shut down that fantasy. Looking at 400 million people born between 1800 and 1920, whose information had been collected from public family trees in Ancestry.com, investigator Graham Ruby found that only about 10 percent of human longevity is inherited. Previous estimates ranged from 15 to 30 percent.

Our intuition is that long life spans run in families, Ruby said. And yes, genetics does contribute to life span, he said, “but to a much lesser extent than we thought.”

“Honestly, all of us were a little surprised,” said Catherine Ball, chief scientific officer at Ancestry, which collaborated with Ruby at Calico, a California research-and-development company.

“What this work has shown is not that longevity isn’t inherited,” she said. “It is inherited, but the cause is not often genetics.” In other words, humans also inherit money, property and social status, which also influence longevity.

Both Ruby and Ball said that a much more important role in longevity is “assortative mating.” In other words, people tend to marry people who are similar to them in location, socioeconomic status and education, and those factors also influence longevity. People are more likely to match the longevity of their in-laws than their ancestors, Ruby said.

The research showed fascinating patterns such as a drop in longevity about 1918, when World War I and the Spanish flu were killing millions, Ball said.

“Over time, the types of things that caused mortality were very different,” she said. “Infectious disease was a much more important killer then than now. Childbirth was not something you really wanted to go through.”

In other words, both researchers said, much of what foreshadows our longevity today involves healthy lifestyles and access to medical care more than genes. I didn’t necessarily uncover any clues about my own health ancestry in my research, but I did develop a greater respect for the enormous achievements of modern medicine.

Complete Article ↪HERE↩!

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Death-Positive Movement Fueling Hospice Growth

By Bailey Bryant

With more than 1.4 million Americans receiving hospice care every year, the demand for high-quality end-of-life care is only projected to rise in years to come. In Minnesota, a “death-positive” movement is to thank, experts say.

The number of hospice patients in Minnesota has tripled since 2000 and currently accounts for more than half of all deaths in the state, according to an article in the Saint Paul-based Pioneer Press.

While the aging population is growing rapidly, a broader cultural shift is also largely to credit: More doctors are encouraging and accepting of hospice, more mediums are portraying it positively, and more people are discussing and planning for end of life.  

“There is a huge death-positive movement happening now,” Christin Ament, organizer of Death Cafes in the Saint Paul area, told the Pioneer Press.

Death Cafes are just one example. Created in 2004, the concept is to offer a place for people to eat, drink and talk about death. Beyond Minnesota, thousands of death cafes are currently operating in more than 60 countries worldwide.

Similarly, the spike in hospice use transcends any one state. Hospice admissions and utilization in the U.S. continued to rise in the second quarter of 2018, according to the latest trends report from Atlanta-based analytics and metrics firm Excel Health.

Experts say the biggest reason for the shift is a change in attitude among doctors, according to the Pioneer Press. Traditionally, doctors have focused on lengthening life by whatever means necessary, opting for curative care as opposed to services more closely aligned to patient comfort.

“At times, you were fighting against what the body wanted to do,” Lindsey Pelletier, a hospice nurse who formerly worked in intensive-care units, told the Pioneer Press. “At times, you were doing something unnatural.”

But now, hospitals have entire teams focused on palliative care, and doctors respect that high-quality end-of-life care is sometimes best for terminal patients.

In addition to making patients’ final days more comfortable, hospice care has also been shown to save money by curbing overall health care spending. With health care costs rising at an unsustainable rate, hospice costs only a fraction compared to many alternatives.

For example, intensive care bills from hospitals can cost thousands of dollars per day, while daily Medicare reimbursement for hospice is $180.

Besides death cafes, the international rise of “death doulas” is also emblematic of the death-positive cultural shift. A type of end-of-life care expert, a death doula carries out a dying person’s plan for how and where he or she wants to die, while also providing spiritual guidance and holistic support.

Some hospice companies have even begun to work with professionally licensed doulas as a way to separate themselves from competitors. On a high level, baby boomers are partially to thank to the the shifting perception of death, experts say.

“My particular demographic is a take-charge-of-my-own-life kind of demographic,” Synthia Cathcart, Compassus’ vice president of clinical development and education, previously told Home Health Care News. “We see more and more openness about, when there isn’t another option given, really embracing that stay-at-home, quality-of-life conversation.”

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What’s the last song you want to hear before you die?

By Mark Taubert

Windblown rain lashes against the hospital windows in an uncertain rhythm that seems even more unsteady as I enter the patient’s room near the nursing station. There is music in this room. Two people sit in chairs by the bed of a patient, a woman who is lying very still. I recognize the voice of Elton John coming from a tablet computer on the bedside table. He’s singing “Crocodile Rock.”

“She liked this,” says the woman’s daughter, smiling and rolling her eyes, as though to say “Elton John, really?” The dying woman’s husband glances at his daughter, then at me, and says, “We followed the advice from one of the nurses to play some music in her last few hours and days.” He smiles slightly, as if in apology for the jaunty tune ( I never knew me a better time and I guess I never will ) in this solemn setting.

His wife’s eyes are closed. Her breathing is steady. Her pulse is fine, about 90 beats per minute. She is much calmer than yesterday, when she was flushed, frowning and seemed in considerable pain. But she is dying. We are giving her as much support as we can to help her be free of distress or discomfort.

I’m a palliative care doctor. I work in Britain in a general hospital, a cancer hospital and a hospice. Sitting with someone you know and love who is dying can stir a craving for a bit of normality in what otherwise might seem a surreal setting. Not that dying isn’t “normal,” but nowadays death and dying are often hidden away in hospital wards or nursing homes, and many people don’t know what to do, or what not to do.

I often tell the family and friends of a dying person that they needn’t speak in hushed tones, that they are welcome to chat or share a joke or call out crossword clues. Or play some tunes. Putting on a favorite song can become a ritual celebration as you enjoy a moment you shared many times before.

Some people don’t need any encouragement — I have seen plenty of terminally ill patients die with music playing in the background. But in the past few years, as the benefits of music in these settings have become more apparent to me, I have paid more attention to what is on.

Music can even help with those who are severely ill but recovering. The father of one of my younger patients put his playlist on while his daughter was in critical condition. Through her delirium, she complained when a well-known rap song from the ’90s came on. Later, after she awoke and was more responsive, her father defended his back catalogue of music, and a debate about good taste ensued — their conversation accompanied by the usual hospital soundtrack of beeps and infusion drip alarms and squeaking cart wheels.

Listening to familiar musical passages can prompt significant emotional responses, causing the release of neurotransmitters such as dopamine. In particular, they are released in an ancient segment of our brains, known as the striatum, which is associated with emotional responses to rewarding inputs such as food, sex, drugs and . . . rock-and-roll.

What happens to the brain in our dying moments? The shutting-down process is not as straightforward as you might imagine. Most of the research on the topic has been done with rodents, so we may not be able to extrapolate too much. But dying rats experience heightened activity in their frontal cortical areas, when the oxygen and glucose have been taken away and there is a huge influx of calcium into their brain cells. Our ability to have conscious thought and experience depends on the strength of the connections between the frontal areas of the brain, associated with mental abilities, and those nearer the back of the brain that process sensory information. These connections, in dying rats, actually strengthened by five to eight times after cardiac arrest, compared with waking moments.

Such a surge in the human brain may explain why some people who have near-death experiences report heightened sensory information. Those who are dying may also be able to process auditory information better than is generally assumed. It is entirely feasible that, in our dying moments, we are more aware of what is happening around us than previously believed.

Over the past few years, my co-workers and I have compiled what amounts to a deathbed playlist of songs we’ve heard in rooms where people are dying. The entries range from Barry White’s “You’re the First, the Last, My Everything” and Harry Nilsson’s “Everybody’s Talkin’ ” to Mahler symphonies and Oasis’s “Wonderwall.” What will be on yours?

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