08/23/17

Hospice service helps care for geriatric pets

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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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08/15/17

How to Find Meaning in the Face of Death

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By Emily Esfahani Smith

The 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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08/11/17

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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07/30/17

Learning to live before I die

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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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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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07/24/17

‘Are you saying I’m dying?’ Training doctors to speak frankly about death

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Two employees from Alive Hospice take on acting roles as a terminally ill patient and a family member as part of a training simulation to help a doctor learn to speak openly about end-of-life care.

By Max Blau

The doctor pulls up a chair next to his patient, a 74-year-old woman with lung cancer. He tells her she doesn’t need more chemotherapy. Her eyes perk up; has she beaten her cancer? As it turns out, no. Her cancer has metastasized. She only has six months to live, at most. But her doctor is unable to find the right words.

“My cancer’s not gone? I thought it was getting better,” the patient says, bewildered.

“That’s the tough part …” the doctor replies.

“So, no further treatment?”

“I think we need to focus on quality [of life] over quantity.”

“Are you saying I’m dying?”

From the other side of a two-way mirror, Anna-Gene O’Neal listens closely. She’s set up this simulation — the prognosis is part of a script; the patient is an actor; the physician is being recorded — to improve the way he broaches the topic of death with real patients. O’Neal hears the mock patient all but pleading with the doctor to give her a direct answer. He struggles to do so. After a few minutes, she opens the door to end the simulation.

O’Neal, who runs Alive Hospice here in Tennessee, launched the SHARE simulation lab last year. Participants run through four scenarios. The actors playing patients reply with all the emotions — confusion, denial, anger, grief — that doctors might encounter in real exam rooms. Afterwards, O’Neal sits with the doctors as they watch tape of these interactions on a big-screen TV.

Faced with the uncomfortable task of discussing death, doctors often avoid the topic. Only 17 percent of Medicare patients surveyed in a 2015 Kaiser Family Foundation study said they had discussed end-of-life care — though most wanted to do so. Since that study, Medicare has begun reimbursing providers for having these conversations. Yet still, just a fraction of Medicare recipients at the end of life have those talks with their doctors.

In response, advocates for improving end-of-life care have launched training sessions for doctors around the country.

In California, Stanford’s palliative medicine department has trained dozens of hospice nurses using exercises similar to those carried out here by Alive. In New York, oncologists at the University of Rochester Medical Center observe their peers having conversations with real patients facing terminal illness. In Arizona, the administrators of Phoenix-based Hospice of the West hold regular training sessions, complete with small group discussions, at staff meetings.

Simulators with live actors have intuitive appeal, especially since doctors rarely get hands-on experience with these tough conversations in medical school. But Dr. Scott Halpern, director of the University of Pennsylvania’s Palliative and Advanced Illness Research Center, said there’s little evidence that simulators are any more effective than any other clinical training to improve end-of-life counseling. They show a “tremendous amount of face validity,” he said, but they must be held “to a standard of showing benefits for patients, not a standard of an appealing anecdote.”

O’Neal, 50, agrees more evidence is needed. But she’s also so gung-ho about her simulator that she’s pushing to expand it across the country. Four health organizations — including faith-based Ascension Health — have agreed to let Alive train their clinicians. Later this year, O’Neal plans to work with medical students at one school in Tennessee. Down the road, she hopes to get some independent practice associations to require their members to undergo her training.

“It’s about doing the right thing,” O’Neal said. “I feel strongly that if you do the right thing by people, they’re going to make different decisions.” That shift could lead to more of what she calls “good deaths,” with patients fully aware of their prognosis and able to choose whether they want aggressive, long-shot treatments or would prefer to simply have their pain managed while they spend their final days with friends and family.

Alive Hospice CEO Anna-Gene O’Neal chats with a doctor who went through a simulated scenario about how he can improve his communication with patients.

The little things that can make a big difference

Two of O’Neal’s closest friends died young from breast cancer. Seeing their hospice nurses bring light to the darkness of death prompted O’Neal to think back on her own professional experiences caring for babies as a neonatal nurse and for the elderly as a health care executive. What stood out: the power of clear, concise communication between clinician and patient.

O’Neal came to believe health providers in all specialties should be trained to have such direct conversations. In 2012, she was hired as CEO of Alive Hospice, a nonprofit chain of hospice care facilities serving more than 3,500 patients and families a year in central Tennessee. She soon realized that many Americans lived in “a crisis of denial of our own mortality,” in part because “medical institutions encourage us to never give up.”

So she launched the SHARE simulator. Clinicians pay to participate — $350 to work through four scenarios and then watch the videos and get feedback from O’Neal or her staffers. (To give doctors more privacy, Alive deletes the footage after each session, handing them the only copy so they can review it later if they’d like.)

The work unfolds in a low-slung brick building near Nashville’s Music Row, in a room that looks like a typical hospice or hospital room, set up with a bed, a couch, a box of tissues, and a stack of travel magazines. Tiny microphones dangle from the ceiling to record audio without intruding on the intimacy of conversations. Video cameras shaped like domes are mounted on the walls.

So far, O’Neal has trained 12 doctors and 65 other clinicians, including nurses and social workers. O’Neal said some have already tweaked their communication style: Maybe they’re more comfortable with long pauses after breaking hard news to patients, or more aware of body language that may come off as too stern.

“Watching yourself, you get a feel for your posture, whether you’re using specific phrases, looking a person in the eye, or keeping focus on them,” said pulmonologist Dr. Richard Fremont. “It was helpful seeing what I thought I was doing.”

Dr. Robert Taylor, a nephrologist based in Nashville, initially found the cameras in the training room unnerving. But the actors quickly pulled him into the scenario.

“It’s awkward to see yourself,” he said, describing the experience of watching the footage later. But he noticed little things, like his posture and the inflection in his voice. When he saw the mock patients’ reactions, he realized that little shifts in his own approach could change their perception of the conversation.

Taylor said he’s been committed to frank discussions with patients ever since he recognized, early in his career, that dialysis patients rarely got a full picture of their options. Their doctors were often focused on keeping them alive. But the disease and the treatments often make them “so fatigued that it’s not the quality of life they desire,” he said. Ever since, Taylor said he’s taken pains to better communicate all options to his patients; he wanted to go through the simulator to hone that delicate art. “It can alter what you do,” he said, “but also confirm your answers.”

O’Neal said the simulator challenged other doctors’ views that a patient’s death must inevitably be viewed as a failure.

“Once you get doctors into the training, you create an opportunity for them to be vulnerable and see themselves differently,” O’Neal said. “Whether they admit to change or not, they will change.”

A political divide over end-of-life conversations

When the idea of paying doctors to talk about dying was first debated – during the early, bitter fights over the Affordable Care Act in 2009 – conservatives warned that such conversations could be a pretext for pushing the frail and elderly to give up on treatment. Former Alaska Gov. Sarah Palin said funding of end-of-life counseling amounted to a “death panel.” Iowa Sen. Chuck Grassley said it could enable “pulling the plug on grandma.”

The debate still rages: Earlier this year Iowa Rep. Steve King introduced the Protecting Life Until Natural Death Act, which would end federal reimbursements for end-of-life discussions. King has described such conversations as “intolerable to those who respect the dignity of human life.”

But despite such efforts, O’Neal sees growing support for her approach on Capitol Hill. Last month, a bipartisan group of lawmakers — including Democratic Sen. Mark Warner of Virginia and Republican Sen. Johnny Isakson of Georgia — filed a bill that would provide $50 million to fund access, education, and training related to end-of-life treatment for terminally ill patients.

“Encouraging patients and their families to have these conversations with their physician helps provide peace of mind and undoubtedly increases the likelihood a patient’s care will be consistent with their wishes,” Tennessee Congressman Phil Roe, one of the bill’s sponsors, said in a statement.

O’Neal concurs: Such conversations, she said, empower patients to embrace death on their own terms — and can make those final days “the most meaningful part of the human experience.”

“If somebody’s faith is such that as long as there’s a beating heart, you keep doing everything, we’re 100 percent behind that,” she said. “But if someone says, ‘if I can’t walk to play 18 holes of golf, I’m done,’ we have to respect that as well.”

A doctor, sitting inside Alive’s training room, watches footage of his interaction with a patient and her daughter.

A second chance

O’Neal asks one of her staffers to turn on the big-screen TV in the simulator room so the doctor can review his performance with the 74-year-old patient. As the footage rolls, the doctor grips one of the arms of his chair, bearing a slight grin of discomfort as he watches his fumbling attempts to tell the mock patient she’s dying. Soon, he’s critiquing himself:

“I think I would have been much less polite if I wasn’t on camera …”

“I would’ve been more blunt …”

“That could’ve been done faster …”

After he’s finished, she chimes with nuggets of advice: Don’t let her chase answers. Communicate like it’s a conversation. Honesty is a form of compassion.

“It’s intimidating,” O’Neal reassures him.

The second scenario goes far better. In it, the same patient returns two weeks later with a slew of strange treatment suggestions a relative found on the internet, including a raw beet diet and blood transfusion at a clinic in Juarez, Mexico. The doctor listens intently, careful to let her finish, mindful of his body language.

After she’s done, he leans forward and steers the conversation in another direction. He makes eye contact.

Then, he says in a calm empathetic tone: “We need to start thinking ahead.”

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07/23/17

Caring for my beautiful husband as he died and through the days that followed

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After Morgan’s second surgery he couldn’t remember Fiona’s name, but when asked who she was he answered “the love of my life”.

Who is the best person to care for someone who has died? Sometimes, a person who loved them when they were living. Dr Fiona Reid shares her experience caring for her husband Morgan throughout his illness and in the days after his death.

My husband Morgan was a kind, active and talented man. I felt tremendously lucky when I met him and continued to do so throughout our years together.

Morgan was remarkably fit, working as a stuntman internationally. He trained every day and could perform feats of acrobatics and skill. So it came as a shock when he called me at work one day to tell me he was having difficulty spelling. My heart fluttered and my stomach turned over. I felt an intense sense of dread but tried to convince myself that I was overreacting.

I told him to stay at home and that I would be there shortly. I drove home and held Morgan in my arms. We both knew something was very wrong. Despite this, I was totally unprepared for what happened next; for the utter horror of watching his scan and seeing the large tumour in his brain. My legs wobbled. I wasn’t supposed to be in the CT room because today I was a patient’s wife and not a doctor, but no-one thought to stop me. I still think that was one of the worst moments – the moment the world ended.

“Are there any gremlins in my brain?” he asked. “Yes darling, there is a gremlin”.

Like most people, we had a lot of hope. Morgan was young, he was strong, I was a doctor. Surely the 14-month prognosis was not for him.

He endured two operations on his brain, chemotherapy, radiation therapy, three experimental treatments and more chemotherapy before finally in January 2016 we decided to stop most treatments and concentrate on what little time we had left.

By this time my gorgeous husband was struggling. He had lost half his vision, he couldn’t use the right side of his body, his face was swollen from steroids and he was very tired. It never occurred to me that I wouldn’t look after him. I began to prepare for caring for him at home.

I was lucky to have some knowledge of what caring for someone who is dying might entail, but whatever I knew as a doctor was a fraction of the real experience. I prepared though. I read blogs written by other women who had cared for their husbands through brain cancer. I researched the timeline, what might happen, how his death might be, what symptoms may occur. I tried to predict.

I learned that we continue to hope, even when things are deteriorating. So even if we only get a “good hour” we hope for another later or tomorrow. We learn to reduce our expectations, such that a smile or a squeeze of the hand seems like a victory and the promise of recovery. Therefore in order to prepare, you must force yourself to remember what happened yesterday and last week. When there are more bad days or bad hours than good ones, you know it’s time to make arrangements.

The hardest thing was doing this whilst still trying to keep up Morgan’s spirits (not that he needed much help; he was extremely positive right until the end). I tried to be open with him, but he looked a little hurt when I had the hospital bed delivered. I felt I had let him down a little, but he was struggling to sit up and I was finding it difficult to lift him.

The bed came just in time. A few days later he was unconscious and although he woke up, he never spoke or left his bed again until after his death three weeks later.

You need equipment if you are to care for someone at home. I needed a bed, a wheelchair, a commode, a bath board and later continence aids, pads, eucalyptus oil, face-washers, medications, liquid thickeners and bed shampoo caps. Most things were rented. I bought consumables from disability companies and the palliative care nurses provided some.

Mostly I needed strength, love and support from family and friends – they believed I could do it and the thought of giving him up to someone else’s care frightened me more than caring for him myself.

I decided early that as much as I loved Morgan he didn’t belong to me, and he deserved to be surrounded by love as often as possible. So I declared an open house. I told everyone that they were welcome to visit at any time and without notice, but I also warned them that I would not be providing food or drink and that if the house was full or it was a bad time they may be asked politely to leave.

I also asked for two hours each day to be alone with Morgan. I put on nice music, burned a candle, bathed him, cuddled him and had some quiet time with him. This was precious time for me. Usually, he would smile at me, then fall asleep as I washed him. I put eucalyptus oil in hot water to freshen the air and massaged lavender oil into his temples to soothe him.

It was during this three weeks that I began to think about “after”. His death had now become a real inevitability; he had stopped talking, eating and swallowing, and he slept more often than not. It felt awfully disloyal to start planning his funeral before his death but I was desperate to do something that honoured him and I knew that every funeral I had been to so far would fall short of his expectations. I had little to go on. He did not want to talk about it. He did not want to be cremated, he wanted to be buried somewhere “with trees” – not a manicured cemetery, and without religion.

I knew I wanted to care for him until the last minute – I never wanted to let him go – but I had no idea what was possible. My experience of death so far had been as a doctor working in a hospital and try as we might it is a cold environment, people are rushed through the death of a loved one and bodies are moved quickly to morgues.

I stumbled on home death care. I was looking at local funeral directors and I felt empty – they all seemed so cold, so scripted, the coffin so pointless. I had no idea what to do. By chance, I found a wicker coffin on an Australian site and I thought it looked beautiful, natural, easily degradable and strangely, comfortable. I looked for the local retailer and found Natural Grace holistic funeral directors. It was as if Natural Grace was made for us.

I watched an interview with managing director Libby Moloney and instantly felt that she was special. Libby specialised in home death care and I knew I wanted to keep Morgan’s body at home. She knew a natural burial site which was 10 minutes away from where we were married. It seemed perfect.

I called Libby, speaking softly and feeling awful guilt as I sat in the same room as my sleeping and alive husband. She was incredibly compassionate. She seemed to understand my hesitation and confusion. She was supportive and never pushed.

I crawled into bed with Morgan on the night of Easter Sunday. I knew this was it. I put my arms around him and a few hours later he took a final breath. It broke my heart.

Libby told me that when he died I should feel free to spend some time with him before calling her. I cuddled him and cried. I called his family and they came we spent a few hours together until 4 am, toasting him with single malt whisky and sobbing together. I called Libby and the palliative care nurses in the morning but asked everyone to leave me alone with him until noon. I wanted to wash and dress him and I wanted to do this alone.

Libby came to the house. It was the first time we had met and she was wonderful. The first thing she said was how beautiful Morgan was and then she asked if she could touch him. I was so grateful for that.

She showed me how to set up the cooling blanket then she talked me through what to expect and watch for. She was honest and very frank which I appreciated. We talked about fluids and smell and flies and all those horrible things that could potentially occur but didn’t. Then she suggested I take some locks of his hair.

She offered to do all these things for or with me but was sensitive to the fact I wanted to do it myself. I knew I had made the right decision; had an undertaker come to take Morgan away from me at that moment I think I would have screamed. The pain of his loss was unbearable and I needed a little more time.

I decided that the first day would be for family only, the following for friends and family. I made and received various calls. I warned everyone “Morgan is still here, he looks peaceful”. I told them not to come for my sake but that if they wanted to come and say goodbye they would be most welcome.

I had warned his family that I intended to keep him at home. They were very supportive but understandably surprised. They all visited and sat with us, and I think they appreciated it. On the second day, his brother decided it was time for him to say goodbye. “I won’t be back tomorrow,” he said.

Friends were varied in their response. I found that women wanted to come, but men were less sure. Most people seemed glad for the opportunity to say goodbye. Some wanted a few minutes alone with him (this was hard for me but I did it). Some tried to ignore his presence and just talked to me. I continued to sleep on the sofa beside him.

On the third day, I realised I had to let him go. I had sat by his side for a month. I hadn’t stepped outside or seen the sun, I had barely eaten and barely slept. I needed to visit the cemetery, pick out a burial site and organise the funeral. I needed to leave the house but I couldn’t leave his side.

Now when I looked at Morgan I could see he wasn’t there anymore; whatever he had been had left. I called Libby. She came, I helped, and everything was done with the tenderest care. I had arranged a wedding photo, an autumn leaf and a teddy on his chest in his hands and she asked about them so she could recreate it perfectly in the sanctuary at Natural Grace. It was terribly hard but I was glad I felt able to trust Libby to look after him.

I went to the cemetery to pick a site with Morgan’s sister. We didn’t speak about it but we both picked exactly the same spot, under a beautiful Candlebark tree. We went back to Natural Grace and I checked on Morgan. He was there in the sanctuary, looking just as undisturbed and peaceful, the items arranged just so. Then we discussed the funeral and Libby was open to everything we wanted or suggested. I asked if we could bring him to the funeral ourselves in his 1974 Bedford van (the Beast); “A wonderful idea!” she giggled. She recommended a celebrant. We wanted mulled wine served – “No problem”. I wanted guests to be able to tie messages and flowers into the casket – “Easy”. We would like Morgan’s father to play his pipes – “Lovely”.

On 1st April 2016, we buried my beautiful husband. We met at Natural Grace and I spent the morning sitting with him, holding his hand. I had picked flowers to place in the coffin with him. His family and I placed him gently into his wicker basket coffin. We arranged flowers around him. We placed him in his van. We said goodbye.

We held the service at the cemetery with 300 mourners. Libby looked after me, making sure someone gave me food and drink, and guiding me through the funeral, sometimes physically. She did not rush me, even though the service went much longer than anyone anticipated. Afterwards, at the wake, there must have been 100 people who told me how beautiful it was, and how “Morgan” it was. No-one had been to a similar funeral and they were amazed.

The decision to care for my husband at home before, during and after his death was simple for me but would have been all the harder, perhaps impossible, without the kind, attentive, professional support of Libby, and the loving acceptance of my and Morgan’s family. They allowed me to make these decisions and held my hand throughout this most devastating time. For this, I am eternally grateful to them.

Complete Article HERE!

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