Category: Healing and Helping Professionals

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

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?”

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Medicare covers the cost of care-planning sessions

In 2016, the first year health-care providers were allowed to bill for an end-of-life consultation, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show.

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[T]he 90-year-old woman in the San Diego-area nursing home was quite clear, said Dr. Karl Steinberg. She didn’t want aggressive measures to prolong her life. If her heart stopped, she didn’t want CPR.

But when Steinberg, a palliative-care physician, relayed those wishes to the woman’s daughter, the younger woman would have none of it.

“She said, ‘I don’t agree with that. My mom is confused,’ ” Steinberg recalled. “I said, ‘Let’s talk about it.’ ”

Instead of arguing, Steinberg used an increasingly popular tool to resolve the impasse last month. He brought mother and daughter together for an advance care-planning session, an end-of-life consultation that’s now being paid for by Medicare.

In 2016, the first year health-care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News shows.

Nearly 23,000 providers submitted about $93 million in charges, including more than $43 million covered by the federal program for seniors and the disabled.

Use was much higher than expected, nearly double the 300,000 people the American Medical Association projected would receive the service in the first year.

That’s good news to proponents of the sessions, which focus on understanding and documenting treatment preferences for people nearing the end of their lives. Patients, and often, their families, discuss with a doctor or other provider what kind of care they want if they’re unable to make decisions themselves.

“I think it’s great that half a million people talked with their doctors last year. That’s a good thing,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit that promotes end-of-life discussions. “Physician practices are learning. My guess is that it will increase each year.”

Still, only a fraction of eligible Medicare providers — and patients — have used the benefit, which pays about $86 for the first 30-minute office visit and about $75 for additional sessions.

Nationwide, slightly more than 1 percent of more than 56 million Medicare beneficiaries who enrolled at the end of 2016 received advance-care planning talks, according to calculations by health-policy analysts at Duke University. But use varied widely among states, from 0.2 percent of Alaska Medicare recipients to 2.49 percent of those enrolled in the program in Hawaii.

“There’s tremendous variation by state. That’s the first thing that jumps out,” said Donald Taylor Jr., a Duke professor of public policy.

In part, that’s because many providers, especially primary-care doctors, aren’t aware that the Medicare reimbursement agreement, approved in 2015, has taken effect.

“Some physicians don’t know that this is a service,” said Barbie Hays, a Medicare coding and compliance strategist for the American Academy of Family Physicians. “They don’t know how to get paid for it. One of the struggles here is we’re trying to get this message out to our members.”

There also may be lingering controversy over the sessions, which were famously decried as “death panels” during the 2009 debate about the Affordable Care Act. Earlier this year, the issue resurfaced in Congress, where Rep. Steve King, R-Iowa, introduced the Protecting Life Until Natural Death Act, which would halt Medicare reimbursement for advance-care planning appointments.

King said the move was financially motivated and not in the interest of Americans “who were promised life-sustaining care in their older years.”

Proponents like Steinberg, however, contend that informed decisions, not cost savings, are the point of the new policy.

“It’s really important to say the reason for this isn’t to save money, although that may be a side benefit, but it’s really about person-centered care,” he said. “It’s about taking the time when people are ill, or even when they’re not ill, to talk about what their values are. To talk about what constitutes an acceptable versus an unacceptable quality of life.”

That’s just the discussion that the San Diego nursing-home resident was able to have with her daughter, Steinberg said. The 90-year-old was able to say why she didn’t want CPR or to be intubated if she became seriously ill.

“I believe it brought the two of them closer,” Steinberg said. “Even though the daughter didn’t necessarily hear what she wanted to hear. It was like, ‘You may not agree with your mom, but she’s your mom, and if she doesn’t want somebody beating her chest or ramming a tube down her throat; that’s her decision.’ ”

Complete Article HERE!

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Hospice service helps care for geriatric pets

Stacie Alves and Dr Julia Spade administer acupuncture and laser therapy to a dog with arthritis. Last Wishes has assisted more than 5,000 families with their pet’s care since November 2012. Earlier this year, the organization opened the first compassionate comfort care center for pets in Houston. The center features comfort rooms that are used for hospice and pain management consultations, therapeutic laser, acupuncture, and compassionate sedation-euthanasia.

By Vagney Bradley

People and their pets can build a strong bond together, and losing a pet can be difficult. When a pet becomes terminally ill, Last Wishes, Houston’s first pet hospice service, steps in to take care of a geriatric pet, from moment of diagnosis through death and aftercare.

Dr. Christie Cornelius is the owner and veterinarian of Last Wishes. She also co-owns Earthman Last Wishes, Texas’ first water-based cremation service for pets. Cornelius and her associate, Dr. Julia Spade, will become the first two veterinarians in the state of Texas to become certified in Veterinary Hospice and palliative care in October.

“I started imagining a better way to offer end of life services after a few years of general practice. I saw how difficult it was for pet owners to bring in their painful or otherwise ailing companions into an unfamiliar, sterile, noisy, scary environment for euthanasia,” Cornelius said.

“I started offering home services through a feline practice I was working for at the time and found it extremely rewarding to be able to provide a peaceful passing for a pet in their own environment, surrounded by loved ones. As the years went by, I convinced myself there was a real need and desire for this type of service in our community.”

In 2012, Cornelius branched out and started Last Wishes while working full time at another veterinary clinic.

Last Wishes has assisted more than 5,000 families with their pet’s care since November 2012. Earlier this year, the organization opened the first compassionate comfort care center for pets in Houston. The center features comfort rooms that are used for hospice and pain management consultations, therapeutic laser, acupuncture, and compassionate sedation-euthanasia.

Cornelius’ goal is to help educate the community about pet hospice, comfort care, pain management, and gentle water-based aftercare services for pets.

Dr Christie Cornelius and assistant Betty Rose Bryant perform an exam on a dog.

Some of the common conditions the organization works with includes, but are not limited to, cancer, heart disease, liver disease, osteoarthritis, organ failure, cardiovascular and neurological disease, and vestibular disease.

“Last Wishes is unique in that we want to make the most of the time that every pet has left with their family. Our doctors and staff don’t just focus on making euthanasia as comfortable as possible when it is ultimately needed,” Spade said. “Our expertise in multiple forms of hospice techniques allows us to consider what is truly beneficial for each case and help strengthen the bond between the pet and their family.”

The majority of services are done in the comfort of the family’s home and in the pet’s environment. Services at the center include consultations, acupuncture, laser, sedation-euthanasia, pet loss support groups, and aftercare. Last Wishes also provides pet loss support groups and continuing education.

“We have established a network of providers, such as our very own grief counselor, pet sitters, pet groomers, and volunteers set up to meet all of our patients and family’s needs when it comes to providing care for an ailing pet diagnosed with a terminal disease,” Cornelius said. “In addition, we sponsor twice monthly pet loss groups and host a private Facebook pet loss support page.”

Additionally, the organization assists disadvantaged families and individuals with their pet’s end of life care through the Last Wishes Fund, a non-profit organization funded by public donations.

Last Wishes provides provide a folder of pet loss/grief information for each family, a clay paw print memorial keepsake, and gentle transport of the pet for aftercare services from the client’s home.

“It is such an honor to be invited into the homes and lives of the families of Houston,” said Jennifer Rames, Last Wishes office manager. “While euthanasia is never easy, we feel honored to provide our services so that these precious furry family members can pass with dignity, in the place they feel safest and happiest, and surrounded by the people who love them the most.”

Cornelius and grief counselor, Marilyn Ladin, are developing a pet loss support program. The program offers in-person and online individual and group therapy.

“Our goal is to heal some long-broken hearts,” Cornelius said. “We also aspire to help other veterinarians and veterinary staff struggling with compassion fatigue, depression, and anxiety among other issues. Too many of our colleagues are causing their own deaths.”

This month Last Wishes plans to unveil of a public pet memorial gardens in Cypress. The garden will include four gardens and handmade stepping stones as a tribute to the pets the organization has helped. The memorial will also feature a special Rainbow Bridge. Families will have access to the garden on Sunday mornings as an opportunity to visit their pet in a peaceful and natural setting.

Complete Article HERE!

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How to Find Meaning in the Face of Death

By Emily Esfahani Smith

[T]he psychiatrist William Breitbart lives at the edge of life and death. As chairman of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center in New York, Breitbart specializes in end-of-life care for terminally ill cancer patients. For many of his patients, the most pressing question isn’t when they’ll die or how painful death will be. Rather, it’s what makes life meaningful. They are in search of a meaning that cannot be destroyed by death.

Breitbart has spent the better part of his career trying to answer that question. His ground-breaking research shows that while the specter of death often leads people to conclude that their lives are meaningless, it can also be a catalyst for them to work out, as they never have before, the meaning of their lives.

When people believe their lives are meaningful, according to psychologists, it’s because three conditions have been satisfied: They feel their existence is valued by others; they are driven by a sense of purpose, or important life goals; and they understand their lives as coherent and integrated. Psychologists and philosophers say that the path to meaning lies in connecting and contributing to something that is bigger than the self, like family, country, or God.

Breitbart’s interest in meaning took root in his childhood. Born in 1951, Breitbart grew up on the Lower East Side of Manhattan. His parents, Jews from eastern Poland, narrowly avoided Hitler’s death camps. When they moved to America, they carried their memories of the war years with them. Breitbart’s childhood was steeped in that tragic past. Every morning, his mother would ask him at the breakfast table, “Why am I here?” Why, she wondered, did she live when so many others had died?

“I grew up with a sense of responsibility to justify my parents’ survival and to create something in the world that would be significant enough to make my life worthwhile. It’s no coincidence,” he laughed, “that I ended up at Sloan Kettering.”

Breitbart began working at the hospital in 1984 during the height of the AIDS epidemic. Young men his age were dying all around him. As he tended to them, “They were constantly asking me to help them die,” he said. He was also working with terminal cancer patients. “When I walked in the room, they would say, ‘I only have three months to live. If that’s all I have, I see no value or purpose to living.’” They told him, “If you want to help me, kill me.”

If death means non-existence, Breitbart’s patients reasoned, then what meaning could life possibly have? And if life has no meaning, there’s no point of suffering through cancer.

By the ’90s, physician-assisted suicide was a hot topic in Breitbart’s circles and beyond. The doctor Jack Kevorkian had helped his first patient end her life in 1990. As the United States debated the ethics of assisted suicide, other countries were taking steps toward normalizing the practice. In 2000, the Netherlands became the first nation to make physician-assisted suicide legal. Today the practice is legal in the United States in California, Vermont, Montana, Washington, and Oregon.

As Breitbart heard more stories of assisted suicide, he began to wonder what specifically was driving the terminally ill to give up on life. At the time, he was doing research studies on pain and fatigue at the end of life, so he tacked onto those studies some questions that asked his subjects whether they felt a desire for a hastened death. What he discovered surprised him.

They no longer wanted to die. Their spiritual wellbeing improved. They reported a higher quality of life.

The assumption had been that the ill chose to end their lives because they were in terrible pain. But Breitbart and his colleagues found that wasn’t always the case. Instead, those who desired a hastened death reported feelings of meaninglessness, depression, and hopelessness. When Breitbart asked patients why they wanted a prescription for assisted suicide, many said it was because they had lost meaning in life. Unlike clinical depression, which has a specific set of diagnosable symptoms, meaninglessness was more of an “existential concern,” Breitbart said—a belief that one’s life has little value or purpose and is, therefore, not worth living.

Breitbart knew he could treat depression—there were medicines and well-developed psychotherapies for that—but he was stumped when it came to treating meaninglessness. Then, in 1995, he began to see a way forward. He was invited to join the Project on Death in America, which aimed to improve the experience of dying. Breitbart and his colleagues on the project—including philosophers, a monk, and other physicians—had long conversations about death and the meaning of life, “peppered with references to people like Nietzsche and Kierkegaard and Schopenhauer,” Breitbart said. “What I suddenly discovered,” he explained, was that “the search for meaning, the need to create meaning, the ability to experience meaning was a basic motivating force of human behavior. We were not taught this stuff at medical school!”

Breitbart became convinced that if he could help patients build meaning, he could decrease their suicidal thoughts and make their lives worth living even to the very end.

He developed an eight-session group therapy program where six to eight cancer patients come together in a counseling workshop. Each session, in one way or another, helps build meaning. In the first session, for example, the patients are asked to reflect on “one or two experiences or moments when life has felt particularly meaningful to you.” In the second session, patients respond to the question “Who am I?” to tap into the identities that give them the most meaning. One woman responded saying, “I’m somebody who can be very private … [and] have been working on accepting love and affection and other gifts from other people.” In subsequent sessions, they share their life story with the group and think about the role that love, beauty, and humor played in their lives.

In the final session, the patients reflect on the part of them that will go on living even after they are dead—their legacy. That could be their soul, or it could be something they helped to create that will continue to exist—their children, a work of art, or an organization. They present a “legacy project” to the group, generally something they do or create that represents how they want to be remembered. One man brought in a woodcut of a heart sculpted into a Celtic Trinity. “This is what I will teach my children,” he said, “that there is eternal love, and that I will be there for them, far beyond my passing.”

Breitbart performed three randomized, controlled experiments on the meaning-centered psychotherapy. When he analyzed the results with his colleagues, Breitbart saw the therapy had been transformative. By the end of the eight sessions, the patients’ attitudes toward life and death had changed. They were less hopeless and anxious about the prospect of death than they were before they began the program. They no longer wanted to die. Their spiritual wellbeing improved. They reported a higher quality of life. And, of course, they found life to be more meaningful. These effects not only persisted over time—they actually got stronger. When Breitbart followed up with one group of patients two months later, he found that their reports of meaning and spiritual wellbeing had increased, while their feelings of anxiety, hopelessness, and desire for death had decreased.

The time between diagnosis and death, Breitbart has found, presents an opportunity for “extraordinary growth.” One woman, for example, was initially devastated by her diagnosis of colon cancer—but after enrolling in the therapy program, she realized, “I didn’t have to work so hard to find the meaning of life. It was being handed to me everywhere I looked.” And that realization ultimately brought her—and Breitbart’s other patients—some measure of peace and consolation as they faced life’s final challenge.

Complete Article HERE!

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Nearly 1 In 5 Hospice Patients Discharged While Still Alive

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Hospice care is for the dying. It helps patients manage pain so they can focus on spending their remaining time with loved ones. But in recent years, nearly one in five patients have been discharged from hospice before they die, according to government reports.

A study published last month in the journal Health Affairs finds that hospices with the highest rate of so-called “live discharges” also have the highest profits. The lead author is Rachel Dolin, a David A. Winston fellow researching health policy. Her paper found an association between high live discharge rates and high profit margins, but it didn’t determine the cause.

“It’s important to continue to study this area to get a better sense as to whether profits are driving the decision to discharge patients from hospice, rather than patient preferences and needs,” says Dolin.

To qualify for hospice care, two doctors must certify that a patient is expected to live no more than six months. But patient James B. Nelson discovered that sometimes the doctors are wrong.

“It was decided that I was not dying fast enough,” he told Arizona Public Media in 2015. “And so, to put it most succinctly, I flunked the hospice program.”

Nelson died a few months after giving that interview, but his situation isn’t all that unusual.

Government reports show that the median rate of hospice patients discharged before death has climbed steadily since at least 2000, peaking in 2012 and 2013 at almost one patient in five, though more recently the percentage has declined somewhat. But the rate actually varies widely from one care organization to another. Some hospices discharge less than 2 percent of their patients prior to death, while others discharge more than 80 percent. Non-profits have lower rates of live discharge than for-profit hospices. Regionally, live discharge rates are highest in the South.

It’s important to understand, though, that when patients are discharged from hospice, they don’t necessarily go anywhere. Hospice agencies, whether they are independent or affiliated with an institution like a hospital, usually deliver services to patients in their homes.

Medicare pays the bills for the vast majority of patients receiving hospice care, at a cost to the government of at least $15 billion a year. Federal regulators have questioned whether high rates of live discharge mean that hospices are making money by admitting patients who aren’t actually dying.

But these decisions aren’t that clear cut, says Dr. Joe Rotella, chief medical officer for the American Academy of Hospice and Palliative Medicine. “We see more and more patients that have conditions like Alzheimer’s disease or Parkinson’s disease that don’t always follow a predictable course,” says Rotella.

Some who study aging are concerned that certain hospices are gaming the system. That’s a worry of Susan Enguidanos, an associate professor in the Leonard Davis School of Gerontology at the University of Southern California. For example, she says that some hospices may be trying to avoid paying for costly treatments by discharging patients temporarily when they need to go to the hospital.

“Individuals that are going in for these very brief health issues are coming out and then, they’re being readmitted to those [same] hospices,” says Enguidanos.

That’s not a good reason to discharge someone, says John Keyserling, senior vice president for communications and policy at the National Hospice and Palliative Care Organization, the trade association for hospice providers.

“Any association between profit margins and clinical decision making is inappropriate and not something that the hospice community supports,” Keyserling says.

That hospice community has nearly doubled in size since 2000. Susan Enguidanos says it’s also changed a lot.

“Hospice organizations started as grass root efforts and were largely non-profit for a long time,” she says. “Now we’ve had a huge increase in for-profit hospices.” There’s a concern, says Enguidanos, that by discharging patients early, some hospices may be “trying to avoid costs that they should be responsible for.”

Whatever the short-comings of some hospices may be, Keyserling says that his biggest worry is that people who could be helped by hospice aren’t taking advantage of it in time. He says about half of patients die within 17 days of being admitted. And that turns hospice into “crisis care” instead of the comfort care it’s intended to be.

Complete Article HERE!

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Learning to live before I die

By Roberta Ness

I am going to die.

I don’t mean right this moment and I don’t mean that I invite it. I mean that it is inevitable. Echoing in my mind ever louder is the old adage, “the only thing guaranteed in life is death.”

Most of my life – until the very end of it, for many of us – we simply deny death. We forget or don’t hear or don’t heed the echo. But I’m doing the opposite. Like the famous commentator Norman Cousins I’ve decided to embrace dying. Cousins said, “Death is not the greatest loss in life. The greatest loss is what dies inside us while we live.”

First, let me explain what seems like a morbid focus on my mortality. You can skip the next few paragraphs if you’re easily grossed out, and for a long time I didn’t tell anyone because it’s pretty disgusting. A couple of years ago, I developed life-threatening diarrhea. Imagine that dreaded clean-out prep you have to undergo for a colonoscopy. Except that it doesn’t just go on for a day; it goes on for days without end. Just keeping myself hydrated was a constant challenge. I laid on the couch pretty much unable to get up. Fortunately, my gastroenterologist made a diagnosis of an autoimmune disease like lupus – except that my immune cells seem to particularly love munching on my colon.

Also, fortunately, modern medicine has developed a special steroid that for me was a cure that helped me to be, thankfully, (mostly) symptom-free. Then I went to South Africa and all hell broke loose. My colitis symptom – eliminating huge quantities of brown water as often as every 15 minutes – recurred full blast. Again, a raft of tests revealed the diagnosis and a treatment. It was none other than traveler’s diarrhea – three types of E. coli were all partying in my bowels and a blast of antibiotics took them out.

Out of the woods again – whew – except I wasn’t. About a week later I got yet another series of bouts. This time my stool tests were clean. So what was going on? Just as I faced another colonoscopy I remembered the miracle steroid. I had tried it after South Africa and it did nothing. But that was when I’d been loaded with bacteria. Maybe the bugs had triggered a recurrence of the underlying disease? So I started myself back on the steroid and I seem to be OK again. But coming to terms with the fact that I will live the rest of my life with this autoimmune condition has forced me to acknowledge my own mortality.

As my friends age, each is confronting death. Those with chronic diseases are dealing with this reality more actively. But even in those who remain entirely healthy and robust, I see signs – mostly signs of denial.

Don’t get me wrong. Denial is a terrifically adaptive defense mechanism. But is it the best way to avoid dying while we still live? What does it look like for me to not just deny but actually welcome my lifetime limit? It looks like the Tim McGraw song:

“I went skydiving. I went Rocky Mountain climbing. I went 2.7 seconds on a bull named Fumanchu. And I loved deeper. And I spoke sweeter. And I gave forgiveness I’d been denying. And he said, ‘Someday I hope you get the chance to live like you were dying.’ ”

I’m not so sure about the bull riding and the skydiving, but other than that I’m living by McGraw’s recipe. I’ve taken up Ecstatic dancing. I’ve become a regular at ad lib storytelling events – although so far just as an audience member. I’ve been traveling more and to more exotic places. I’ve gone to my first rock ‘n’ roll concert. I’m even going (only because my 20-something children invited and are going with me) to Burning Man – a kaleidoscopic art and music happening in the Nevada desert. And, yes, I know that temperatures there range from 110 degrees during the day to 30 degrees at night, and I know I’ll need to truck in all my own provisions including tent, water and a face mask for the sandstorms.

Most importantly, I’ve been giving/asking for forgiveness. And I’ve become incredibly committed to loving more deeply. So yes, I’m dying. But inside I’m more alive than I’ve ever been.

Complete Article HERE!

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Facing the Abyss: Planning for Death

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…?

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