07/31/17

Zen Hospice co-founder works to create mindful, compassionate care

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If someone is going to be a compassionate presence to the dying, “they have to look at their own relationships to these issues — to sickness, to aging, to dying and to suffering,” says Frank Ostaseski, with his cat Bodhi on his Sausalito houseboat.

By Colleen Bidwill

After losing both of his parents at a young age, Frank Ostaseski channeled his pain into a life of service.

Frank Ostaseski’s “The Five Invitations” shows what dying can teach about living.

Ostaseski, 65, of Sausalito, has been an advocate for contemplative end-of-life care, and was honored by the Dalai Lama for his years of service to the dying. In 1987, he co-founded the Zen Hospice Project, the first Buddhist hospice in America, and in 2004 created the Metta Institute, which teaches physicians, nurses and family members how to practice “mindful and compassionate care.”

His recent book, “The Five Invitations,” shows what dying can teach us about living.

Q What made you be a champion for mindful and compassionate care?

A Death and I became friends very early on, or at least we got acquainted very early on. My parents died when I was quite young. My mother when I was 16 and my dad a few years later, and then, I worked for a long time with kids who were severely disabled. That kind of introduced me to my life of service, and later, I worked in refugee camps in Mexico and Central America. Then, I came back and the AIDS epidemic was hitting and so, one thing was stumbling into another, in a way. And one of the things that I saw was what mattered most: not necessarily the treatment plan that the person was involved in, although that is important, but what mattered was the quality of the presence of people around him or her.

Q What are you teaching end-of-life caregivers?

A The first thing if someone is going to be a compassionate presence, is that they have to look at their own relationships to these issues — to sickness, to aging, to dying and to suffering. … We teach our physicians and nurses and others to learn to listen very precisely and not in the context of what is happening, but also to the emotional and to the somatic cues that person is giving. And then you give information in a way that is accessible to the other person.

Q You’ve sat by more than 1,000 bedsides of those who were dying; was that difficult?

A Oh, absolutely. It’s a lot. I try to be real with people, in other words, if I feel grief, I will share it. I’ll say, “I’m going to miss you.” “I’m really learning a lot from you.” “Wow, this is so sad to hear you say this.” So, it can be difficult but difficulty doesn’t stop me. During the AIDS epidemic I was working with 20 to 40 people a week who were dying, so I had to do things that really balanced me. I went to a hospital in San Francisco where my friends were nurses and they were taking care of babies that had been born to addicted mothers, and I would hold these babies in a rocking chair. There was something about that, that gave me the wherewithal, the strength, to continue and to do the work that I was called to do. I also did life-affirming things; I swam in the bay because it’s cold and it’s refreshing. I still do that.

Q What is a typical day for you?

A When I was running the Zen Hospice, I was on call 24 hours a day, seven days a week, that was my life. And I was raising four children at the same time. I retired from that, in about 2005, to focus my attention more on teaching and mentoring others. That happened partially because, after 20 years, it was time to let other people take that role, and also my children were growing up and my caregiver energy started to shift and my teaching energy came forward. I travel, quite a lot. My day often includes getting to and from airports, and then finding myself in front of a group of people, and my primary job is to keep them human. The expectations on [doctors] are really just unbelievable — they’re being driven mercilessly by a system that’s making unreasonable demands on them, so it’s natural that they start to shut down because that’s a strategy. So if we can help them stay engaged without burning out, that’s a huge gift to the world.

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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07/28/17

How to write about death

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By Michael Upchurch

In a beautiful passage, early on in her new book, Haitian-American author Edwidge Danticat explains, “We write about the dead to make sense of our losses, to become less haunted, to turn ghosts into words, to transform an absence into language.”

Danticat’s own masterpieces — her memoir of her father’s and uncle’s deaths, “Brother, I’m Dying”; her novel-in-stories about a Haitian torturer, “The Dew Breaker”; and her early collection of tales, “Krik? Krak!” — have done exactly that. Her prose is often cool and taut on the surface, yet also rife with hidden currents and flashes of warmth. At her best, Danticat taps into such tough subject matter as political exile, mob violence, and refugee desperation with a trickless, spellbinding clarity.

The strongest thread in “The Art of Death: Writing the Final Story” (one in a series of Graywolf Press titles addressing specific aspects of the craft of writing) is her account of her mother’s reaction to being diagnosed with stage 4 ovarian cancer.

“In the car on the way home,” Danticat remembers, “we were both lost in a terrible silence that should have been filled with tears. At a red light, where I stopped for too long, my mother spoke up for the first time since we’d heard the news and warned, ‘Don’t suddenly become a zombie.’ She was telling me not to lose my good sense, to keep my head on my shoulders.”

Her mother brought humor even to the most humiliating hospital situations. To a nurse who had trouble drawing blood from her, she wisecracked, “It’s too bad you’re not like those vampires on TV who just put their teeth on someone’s neck.” When, toward the end, she opted out of repeated rounds of chemotherapy, she couldn’t have been more straightforward about it. “I’m not necessarily dying either today or tomorrow,” she said. “But we all must die someday.”

Danticat’s portrait of her is kind and loving. It also is, inevitably, anguished in its sense of loss. “I was shocked,” she says, “by how quickly many others expected me to bounce back and rejoin the world.”

But “The Art of Death” isn’t simply a memoir. It looks at how other authors have dealt with death in their writing. Danticat’s focus is on Tolstoy, Camus, Chekhov, Gabriel García Márquez, Toni Morrison, Audre Lorde and more than three dozen others. She touches on her own work as well.

It’s an impossible task, and Danticat’s attempts to order her thoughts on suicide, bereavement, and death-row prisoners’ experience can be unwieldy. She’s less assured when analyzing someone else’s text than she is when evoking her own experience. Her extensive commentary on Morrison’s novels, for instance, can’t compete with Danticat’s direct dealings with death.

Danticat is a straight shooter as a writer, so perhaps it’s not a surprise that she gives no nod to the thumb-nosing irreverence toward death you find in Laurence Sterne’s “The Life and Opinions of Tristram Shandy, Gentleman” (or, more recently, Monty Python). Some readers may also feel it odd that she omits such obvious candidates as Virginia Woolf and — ahem — Shakespeare from this discussion.

But a full study of how authors address death in their work would run to multiple volumes, and the format of Graywolf’s “The Art of” series puts firm constraints of length on its authors.

Danticat does make many essayistic observations that serve the book well — conclusions that she, looking inward, came to on her own. She notes the way we sometimes find ourselves “rehearsing” our future bereavements. She questions how one can “prepare to meet death elegantly.”

“We are all bodies,” she writes, “but the dying body starts decaying right before our eyes. And those narratives that tell us what it’s like to live, and die, inside those bodies are helpful to all of us, because no matter how old we are, our bodies never stop being mysterious to ourselves.”

For authors, the elusive nature of death never stops posing a challenge.

“Having been exposed to death does help when writing about it,” Danticat notes, “but how can we write plausibly from the point of view of the dying when we have not died ourselves, and have no one around to ask what it is like to die?”

Far from being morbid, this small book is a bracingly clear-eyed take on its subject.

Complete Article HERE!

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07/27/17

Why it’s so hard to die in peace

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For those of us who had hoped that American attitudes toward death were shifting in ways that would promote a wider reconstruction of the health-care system, there’s discouraging news from Health Affairs, the preeminent journal of health policy. It devotes its latest issue to “end-of-life” care and finds that — at least so far — the power to make health care more compassionate and cost-effective is limited.

That was the vision. Americans would become more realistic about death. Through “living wills,” they’d reject heroic — often futile — treatment to keep them alive. Health spending would be lower (by one estimate, a quarter of Medicare spending occurs in the last year of life). People would die with dignity. They’d be spared needless suffering.

Superficially, the vision seems to be triumphing, according to the 17 studies in Health Affairs. By one study, a third of American adults — and nearly half those 65 and older — have some sort of living will. From 1999 to 2015, the share of Americans who died in hospitals dropped from more than half to 37 percent. Over the same period, the number dying at home or in a hospice rose from less than a quarter to 38 percent. Moreover, at 8.5 percent of health costs, spending in the last year of life is lower in the United States than in some other countries.

But on inspection, the gains seem less impressive. The share of people with living wills has remained stuck for six years. According to another study in Health Affairs, the increase in hospice care is not substituting for expensive hospital care but adding to it. Said the study by Melissa Aldridge of Mount Sinai hospital in New York and Elizabeth Bradley of Vassar College:

“What has emerged [is] a relatively new pattern of hospice use. . . . Hospice enrollment [has become] an ‘add-on’ in health care after the extensive use of other health care services and within days of death.”

Patients receive expensive care until nearly the end, when they’re switched to hospice care. This obviously limits the potential for reducing costs and for relieving patients’ suffering. In addition, spending for the last year of life, though significant, is still a small share of total spending, refuting the argument that the high cost of dying explains why U.S. health care is so costly.

“We found that U.S. health spending [during the last year of life] was less than one-tenth of total U.S. health care spending [8.5 percent] and thus cannot be the primary cause of why U.S. health care is so much more expensive than care in other countries,” concluded another study in Health Affairs headed by Eric French of University College London.

(The fact that the effect on Medicare is much larger reflects simple arithmetic: Because Medicare represents only about a fifth of total U.S. health spending, the spending in the last year is being compared with a smaller base.)

None of this means that end-of-life care can be ignored. Indeed, the problems will almost certainly worsen, because much care-giving is by families and friends. Already, 29 percent of the adult population — two-thirds of them women — consider themselves caregivers.

As the population ages, the burdens will grow. In 2010, the ratio of potential caregivers (people 45 to 64) to those aged 80 and older was 7-to-1; by 2030, it’s projected to be 4-to-1. Alzheimer’s cases are increasing. Spending pressures on Medicare and Medicaid will intensify.

Just whether the persistence of high-cost care reflects good medicine, a deep human craving to cling to life, or both is unclear. But the rhetoric about “end-of-life” care has changed more than the reality. To the question — Can we die in peace and with dignity? — the answer is “not yet.”

Complete Article HERE!

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07/26/17

Man dresses up as dead sister to help grieving elderly mother cope with loss

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Man dresses up as dead sister to help grieving elderly mother cope with loss

A 50-year-old man has been dressing up as his dead sister for 20 years to ease his elderly mother’s heartbreak over losing her daughter.

A video, which has gone viral across Chinese social media, shows the unnamed man wearing a traditional cheongsam dress while tending to his elderly mother.

The man, from South China, told the BBC his mother was so grief-stricken by his sister’s death two decades ago, she began showing signs of mental illness.

A 50-year-old man has been dressing up as his dead sister for 20 years to ease his mother’s heartbreak.

So he began wearing his late sister’s clothing, which he said made his mother feel as though her daughter had come back to life.

“She was so happy, so I kept doing it. I’ve basically been living as a woman ever since.”

The devoted son, who admitted he no longer owns any men’s clothing, said didn’t care what anyone thought, as long as his mother was happy.

The video, which has gone viral across Chinese social media, shows the unnamed man wearing a traditional cheongsam dress while tending to his elderly mother.

In the short clip, which has been viewed more than 432 million times, the man with long black hair is wearing a blue and white traditional dress.

He can be seen feeding the frail-looking woman and helping her stretch her legs, as she lies on a makeshift bed on the back of a small van.

The selfless gesture has been called an act of “filial piety” – a kindness towards elders, considered a key value in Chinese culture.

The woman says in Chinese: “She is my daughter. When my other daughter died she became my daughter.”

The man has told reporters he doesn’t care what people say because he’s “doing it for his mother”.

“Why would I be afraid of people laughing at me?” he asked.

The selfless gesture has been called an act of “filial piety” – a show of respect towards parents, elders and ancestors, which is is considered a key value in Chinese society and culture.

Complete Article HERE!

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07/25/17

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

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

By Ann Brenoff

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

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