Talking about death – Page 263 – The Amateur's Guide To Death & Dying

June 17, 2016June 17, 2016

Allina program offers life lessons for end-of-life patients

The LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.

Bob DeMarce made a living as a funeral director, but he didn’t think much about his own mortality until he developed cancer. He soon learned it took more than being sick to prepare him for death.

DeMarce became one of hundreds of Minnesotans enrolled in a research program that prepares patients and families for the end of life. Conducted by Allina Health, the LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.

DeMarce already had plenty of doctors, care coordinators and rehab specialists to attend to his medical needs. LifeCourse gave him a “care guide” — a nonmedical counselor — who met with him and his family to help them set goals and provide support.

“Most people would hesitate to talk about this sort of thing,” said the 75-year-old DeMarce, who has had two bouts of lung cancer in addition to colon cancer. “With the different scares I had with cancer … We did want to get things straightened out.”

One goal of the program is to increase the number of patients with advance care directives, which research has shown can reduce the amount of unnecessary and often unwanted care at the end of life.

And the results were dramatic: Patients in the LifeCourse intervention group had fewer hospital inpatient days, fewer emergency room visits and less intensive care, compared with a control group that was tracked but did not work with care guides. About 85 percent completed a living will, compared with 30 percent in the control group.

But the program also aims to improve the quality of life at a time when chronically ill patients and their families often feel overwhelmed.

“The model we chose was one that would be very personal,” said Dr. Eric Anderson, a palliative care physician at Allina’s United Hospital and one of the LifeCourse leaders. “There is an intimate connection between talking about what matters most and having effective advanced directives.”

In some ways, the program turns the patient’s focus away from the end of life to the life that can be lived.

“People want to have meaning in their lives, that is more important than anything else,” said Anderson.

“The lived experience for these patients and for their families is simply better. In a number of ways they feel more holistically supported, less anxious and they are using services in a more rational and effective way.”

Minneapolis-based Allina is so encouraged by the program that it plans to develop it beyond the research phase and make it available to patients at eight Allina clinics by the end of this year. It is also talking with other organizations that might adopt the LifeCourse model.

“We’ve got such a large number of people who will be over the age of 65 who will face serious illness,” said Heather Britt, Allina’s director of applied research, who also worked on the project. “Systems like ours have to figure out what to do differently.”

Setting a course

LifeCourse began in 2012, targeting patients with heart failure, advanced cancers and dementia using Allina’s electronic medical record.

“We figured out who was sick enough with those diagnoses, and that took a fair amount of tweaking,” Anderson said.

Eventually, 450 patients were enrolled in the intervention group and about an equal number in a control group.

Care guides meet with patients and their families monthly.
“I am helping them identify what their goals would be and what resources that they might need,” said Judi Blomberg, an Allina care guide since 2013. A lawyer by training, Blomberg was drawn to a health care job because she wanted to help people dealing with crises and trauma.

“Feeling overwhelmed is something that happens when we hit those crisis points,” said Blomberg. “One of my jobs is to help people anticipate what is to come.”

Using a set of questionnaires and assessment tools, care guides help patients set a course to achieve what matters to them.

For some patients, it could be medical goals such as staying out of the nursing home, controlling blood sugar, walking without a cane or losing weight. But many patients also set goals outside the medical realm: doing volunteer work, spending more time with relatives or putting together photo albums.

Toes in the ocean

Bob DeMarce and his wife, Marilyn, who were among Blomberg’s first clients, decided their initial goal was to develop a living will.

“One thing that we were bringing to them was a framework where they can talk about difficult things together that had been hard for them to talk with each other about,” Blomberg said.

“It felt very natural,” said Marilyn DeMarce. “They made it not hard to sit down and have a conversation.”

“She kept us on point and made sure we got it done,” said Bob DeMarce, who does not want any extraordinary measures to prolong his life.

In addition to completing a living will, the DeMarces resumed traveling, a favorite pastime, last November with a trip to Palm Springs, Calif., including a side trip so Bob could stand in the ocean.

“That was big on my bucket list,” he said.

Although Bob DeMarce is now cancer-free, he did fall and break his femur about two years ago. The DeMarces were able to rely on their care guide for help.

“It really provides extra support. When you are in crisis you need as much help as you can [get],” said Marilyn DeMarce. “When you are living with this type of illness you know that at any moment your life could just change.”

“The interest they have shown in my health for whatever reason has been beneficial to me,” Bob DeMarce said. “It prepares you to live with being sick but it also helps you to get ready to die.”

Complete Article HERE!

June 16, 2016June 16, 2016

Dying In A Hospital Means More Procedures, Tests And Costs

By Alison Kodjak

When it comes to the end of life, hospital stays are more intensive and more expensive than alternatives.

People who die in the hospital undergo more intense tests and procedures than those who die anywhere else.

An analysis by Arcadia Healthcare Solutions also shows that spending on people who die in a hospital is about seven times that on people who die at home.

The work confirms with hard data what most doctors and policymakers already know: Hospital deaths are more expensive and intrusive than deaths at home, in hospice care, or even in nursing homes.

“This intensity of services in the hospital shows a lot of suffering that is not probably in the end going to offer people more quality of life and may not offer them more quantity of life either,” says Dr. Richard Parker, chief medical officer at Arcadia.

Arcadia analyzed all the Medicaid claims data for a private Medicaid insurance company in one Western state and detailed how many billable medical procedures each patient received and where. Patients in hospitals were billed for far more medical interventions in the last days of their lives than people who died in other settings. The company declined to name the state or company.

The study showed that 42 percent of patients died at home at a cost of about $4,760 for their last month of life, while 40 percent died in a hospital at a cost of $32,379. Dying in a nursing home was the second most expensive locale, inpatient hospice was third and an emergency room was fourth.

“In the end, everyone died. They all died,” Parker tells Shots. “If we look at this retroactively, retrospectively — and we could go back and ask people — I bet most of them would say I’d rather be home with my family.”

Parker says the cost of hospital deaths paid for by Medicare or private insurance are likely even higher because they pay doctors and hospitals more for their services.

Many studies have shown that people, when asked, say they’d prefer to die at home rather than in a hospital. However, those wishes aren’t always realized if a person hasn’t given clear instructions to a doctor or family member.

Parker says hospitals are designed to cure people who are ill rather than to allow people to die peacefully.

“The culture of American medicine today and for the last several decades is to keep treating patients regardless of the quality of life,” he says. “A lot of physicians have been reluctant to admit that the patient’s life is coming to an end.”

The picture is more complicated than the data show, says Dr. Lachlan Forrow, a professor of medicine and medical ethics at Harvard University.

Many patients move from home to hospice to hospitals and back during the last 30 days of life. And some may end up in the hospital because their pain or symptoms weren’t adequately controlled at home.

Still, he says, hospitals are just not good at caring for dying people.

“We do lots of very expensive things in hospitals to people in the last part of life who would rather be home, and we do those in part because in the hospital they get paid for,” he says.

It’s the only way to justify keeping in a hospital the people who need around the clock nursing care but can’t get it at home.

“If we really tried to make sure people at home could have what they needed at home, we could take better care of them, with less medical system-caused suffering, at lower cost, sometimes much lower cost,” he says.

Complete Article HERE!

June 14, 2016June 14, 2016

How to talk to a queer person who is afraid of dying

By Carlos Maza

Josh Mercer wears a T-shirt in honor of two of his friends who were killed at the Pulse nightclub in Orlando.

I spent most of Sunday thinking about what I would text my mom if I was hiding in a nightclub bathroom and believed a gunman was about to kill me. I pictured the bathrooms of my favorite clubs. I imagined where I would hide. I imagined how I would try to barricade the door. I pictured what my body would look like on the floor.

I wish I could say I left my apartment that day and fearlessly celebrated Pride month. I wish I could say I attended a rally or a vigil, or even just got drunk at a bar with my queer brothers and sisters. I wish I could say I became a living testament to LGBT courage in the face of violence and hatred.

But I didn’t. I lay on my couch and imagined being shot and killed in a bathroom.

I understand why so many people have chosen to respond to the massacre in Orlando with proud public displays of solidarity with and support for the LGBT community. The history of LGBT people in the United States is a story of resilience, even in the face of incredible pain and loss. We respond to a world that asks us to disappear by chanting, “We’re here! We’re queer! Get used to it!” We celebrate Pride partly as an act of defiance and perseverance.

After the shooting in Orlando, it’s tempting to push ahead to the part where the LGBT community pulls itself up by its bootstraps and recommits to fighting bigotry and making the world a more welcoming place. I am tempted by that, too.

At the same time, LGBT people aren’t superheroes. What happened in Orlando opened wounds in people thousands of miles away from the gunman. LGBT people are grappling with the fact that there is no such thing as a “safe space,” that we created the idea of a “safe space” to stay sane, but it is an illusion.

It’s hard to overstate the mental and emotional damage that realization has on queer people. For me, it has been a profoundly isolating experience. Fear makes you want to retreat from the world, makes you want to stop talking and pull away from anything that might put you at risk.

I walked to work Monday morning, searching for copycat executioners in the eyes of strangers on the street. I packed gym clothes and caught myself wondering if my tank top was too flamboyant. I watched straight people discussing queer bodies on television and wondered how they could talk about Orlando if they didn’t understand what it’s like to walk into a gay club and think, “Finally, I’m safe — this is home.”

I don’t know what to do with any of that. Even now, I’m writing because I desperately want to feel like I have some control over what happens to me. To do something, however small, to make myself feel like I have a grip on things. It isn’t working.

If you have queer people you care about in your life, talk to them. Always, but especially now. Maybe they seem fine. Maybe they live somewhere that feels very far away, in distance and culture, from Orlando. Maybe it feels like an uncomfortable subject to bring up.

You should still talk to them.

Many LGBT people have spent years keeping problems — especially problems related to being LGBT — to ourselves. We have become masters of seeming fine, of convincing ourselves that we are fine, when we are not fine. Because we badly want to be fine.

There is a good chance your charming, confident, smiling gay friend feels deeply scared and unwelcome in the world.

Ask them how they’re doing. Tell them you love them. Tell them your love doesn’t come with caveats. Tell them it’s okay to cry. Tell them they don’t deserve to be scared. Tell them that it’s okay to be scared anyway. Tell them it’s okay to be afraid of dying. Tell them that they matter to you — and that you want them here, alive, now.

None of that will stop an LGBT person from being afraid of dying. Nor will it stop them from mourning the dead. The only way to deal with pain and trauma is to sit with it until it’s done with you.

Complete Article HERE!

October 31, 2015October 28, 2016

Dia de los Muertos (Day Of The Dead) 2015

More than 500 years ago, when the Spanish Conquistadors landed in what is now Mexico, they encountered natives practicing a ritual that seemed to mock death.

It was a ritual the indigenous people had been practicing at least 3,000 years. A ritual the Spaniards would try unsuccessfully to eradicate.

A ritual known today as Dia de los Muertos, or Day of the Dead.

The ritual is celebrated in Mexico and certain parts of the United States. Although the ritual has since been merged with Catholic theology, it still maintains the basic principles of the Aztec ritual, such as the use of skulls.

Today, people don wooden skull masks called calacas and dance in honor of their deceased relatives. The wooden skulls are also placed on altars that are dedicated to the dead. Sugar skulls, made with the names of the dead person on the forehead, are eaten by a relative or friend, according to Mary J. Adrade, who has written three books on the ritual.

The Aztecs and other Meso-American civilizations kept skulls as trophies and displayed them during the ritual. The skulls were used to symbolize death and rebirth.

The skulls were used to honor the dead, whom the Aztecs and other Meso-American civilizations believed came back to visit during the monthlong ritual.

Unlike the Spaniards, who viewed death as the end of life, the natives viewed it as the continuation of life. Instead of fearing death, they embraced it. To them, life was a dream and only in death did they become truly awake.

“The pre-Hispanic people honored duality as being dynamic,” said Christina Gonzalez, senior lecturer on Hispanic issues at Arizona State University. “They didn’t separate death from pain, wealth from poverty like they did in Western cultures.”

However, the Spaniards considered the ritual to be sacrilegious. They perceived the indigenous people to be barbaric and pagan.

In their attempts to convert them to Catholicism, the Spaniards tried to kill the ritual.

But like the old Aztec spirits, the ritual refused to die.

To make the ritual more Christian, the Spaniards moved it so it coincided with All Saints’ Day and All Souls’ Day (Nov. 1 and 2), which is when it is celebrated today.

Previously it fell on the ninth month of the Aztec Solar Calendar, approximately the beginning of August, and was celebrated for the entire month. Festivities were presided over by the goddess Mictecacihuatl. The goddess, known as “Lady of the Dead,” was believed to have died at birth, Andrade said.

Today, Day of the Dead is celebrated in Mexico and in certain parts of the United States and Central America.

“It’s celebrated different depending on where you go,” Gonzalez said.

In rural Mexico, people visit the cemetery where their loved ones are buried. They decorate gravesites with marigold flowers and candles. They bring toys for dead children and bottles of tequila to adults. They sit on picnic blankets next to gravesites and eat the favorite food of their loved ones.

In Guadalupe, the ritual is celebrated much like it is in rural Mexico.

“Here the people spend the day in the cemetery,” said Esther Cota, the parish secretary at the Our Lady of Guadalupe Church. “The graves are decorated real pretty by the people.”

Complete Article HERE!