05/14/17

We’re Bad at Death. Can We Talk?

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A dialysis center in Paterson, N.J. Illnesses like renal failure often prove terminal, yet their uncertain progression can make it hard for patients and their families to start the conversation about palliative care and hospice.

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Her last conversation should not have been with me.

I’d just arrived for the night shift in the I.C.U. when her breathing quickened. I didn’t know much about the patient, and the little I did know wasn’t good: She had cancer. Her lungs were filled with fluid. As her breathing deteriorated and her oxygen levels plunged, I searched the chart for her wishes in an emergency. Nothing.

I explained to her how rapidly her condition had worsened and asked if she’d discussed intubation and mechanical ventilation. She shook her head; she didn’t think it would get so bad so fast. Together we called her husband, who had just left for the evening, but there was no answer.

“If we do it, when will I…” she paused. “When will I wake up?”

I hesitated. It was as likely as not that she wouldn’t. I explained that we never leave patients intubated longer than necessary, but when people were as sick as she was it was impossible to know when — or even if — they would be extubated.

“O.K.,” she said. “Do it.”

There are, no doubt, differing opinions on what constitutes a good death. But this, inarguably, was not one.

For years the medical profession has largely fumbled the question of what we should do when there’s nothing more we can do. A new wave of research sheds light on what patients want at the end of life, and who is — or isn’t — getting it.

Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days. On average, patients make 29 visits to the doctor’s office in their last six months.

In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.

Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.

It’s not clear all that care improves how long or how well people live. Patients receiving aggressive medical care at the end of life don’t seem to live any longer, and some work suggests a less aggressive approach buys more time. Despite a popular misconception, doctors don’t die much differently: Physicians use hospice care and die in hospitals at rates similar to everyone else.

Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.

Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care. Family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about their loved one’s wishes. And earlier access to palliative care has consistently been linked to fewer symptoms, less distress, better quality of life — and sometimes longer lives.

We’ve made significant progress in recent years: The availability of palliative care services has increased 150 percent over the past decade, and compared with patients in other developed countries, older Americans with cancer are now the least likely to die in a hospital (22 percent versus up to 51 percent). But not everyone has benefited from the palliative care movement: Large disparities remain by geography, race and type of illness.

Ninety percent of hospitals with more than 300 beds now have a palliative care program, but only 56 percent of smaller hospitals do. Patients treated at for-profit and public safety net hospitals (known for taking in those who have no insurance) are much less likely than those in nonprofit hospitals to have access to palliative care.

Complete Article HERE!

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05/13/17

Doctors need to be more honest with families facing critical care choices

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by Jazz Shaw

This is something of a sensitive topic and though we’ve tackled similar ones before, these stories always give me pause. At issue is a frankly heart wrenching story in the Washington Post from last week by Doctor Yvette Youssef. When she was younger, just entering medical school herself, her mother fell terribly ill, prompting a painful discussion among the family. What followed was a brutal journey through the medical system where it became clear that her mother was dying, but the medical team at the hospital never came out and told the family that until her life was just about ended.

Sometimes it feels like the great unspoken secret between doctors and nurses. The words that we dare not utter to patients and families. Perhaps it is our hope that we’re wrong. Perhaps we dread providing unwanted news. Perhaps we don’t want to face reality or extinguish our patients’ hope.

As a daughter, I felt that sense of sadness and dread, waiting to hear the news that would not be told. It was September 1989, and I was only 20 years old and just beginning my first year of medical school. It was less than a week from my first exam when my mother developed intractable nausea and vomiting. After several days of suffering at home, she decided it was time to go to the hospital.

I distinctly remember her sitting at the dining room table and saying goodbye to each of her seven children, starting with the youngest daughter, who had just started kindergarten, and finishing with me, the eldest, who had just started medical school.

Dr. Youssef was initially in denial, even growing angry with her mother and insisting that with a bit of treatment she would be on the mend and back home again. Her doctors actually encouraged that thinking for quite some time, but when it became obvious to everyone that her mother had known the truth from the beginning she was left with many questions which haunted her for years. What if they had been more honest? Would they have put her mother through all those additional, painful procedures just to wring out a few more weeks of life, all of which was spent essentially in hospice conditions?

This story reminded me of some of the previous research I’d done on the subject. One of the most important essays I’ve ever found on the topic dates back to 2011 and was written by Dr. Ken Murray. It’s called “How Doctors Die” and I’ve referenced it here in the past. His story begins with the tale of an orthopedist who he only refers to as “Charlie” who was diagnosed with pancreatic cancer. The story of how Charlie’s life ended was far, far different from what happened to Dr. Youssef’s mother.

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds–from 5 percent to 15 percent–albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

As Murray points out, Charlie’s story isn’t unusual at all… at least among doctors. He knew he was dying and his colleagues who were caring for him knew it too. He could have undergone all of the chemo and radiation and all the rest and possibly squeezed out a few more months, but instead he had his colleague load him up with painkillers and went home to get as much out of his remaining days as he could.

But for most of us who are not inside the profession, that’s not an option which is discussed unless you demand it. Doctors immediately turn to the long, painful and frequently bankrupting procedures described above, allowing the family to think that just maybe their loved one will pull through in the end, even if the medical team knows that it would literally take a miracle.

And if a miracle is coming, shouldn’t they allow God to handle the heavy lifting in His own time?

This doesn’t sound like the sort of thing that could be easily addressed through government regulation even if you wanted to go that route. Perhaps, as Dr. Youssef suggests, the doctors are afraid of being sued. Or maybe they really don’t like giving bad news. But no matter the reason, it’s more of a cruelty than a kindness to the families to not at least tell them the truth and prepare them for all possible scenarios. I’m guessing that the best method to fix this is through pressure coming from the consumer end of the equation. Patients need to be more direct with their doctors, demand blunt answers no matter how painful they may be and similarly call for an honest range of options. Sometimes being at home with powerful painkillers is better than living in a hospital ward getting radiation for weeks on end if it’s not going to do more than allow you to cling on for a few more days. If that’s what you want to do, then so be it. But you should at least have all of the information at hand to make that choice.

Complete Article HERE!

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05/12/17

Med schools to teach how to discuss patients’ goals for care — and for life

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How patients answer questions about overall life goals can inform treatment decisions, especially near the end of life.

By Felice J. Freyer

The four medical schools in Massachusetts have jointly agreed to teach students and residents how to talk with patients about what they want from life, so future doctors will know how far to go in keeping gravely ill patients alive.

How patients answer questions about their overall life goals can inform treatment decisions, especially as people near the end of life.

“We’ve trained all doctors to ask people, ‘Do you smoke?’” said Dr. Harris A. Berman, dean of the Tufts University School of Medicine, who met with colleagues last week from the medical schools at Tufts, Harvard, Boston University, and the University of Massachusetts. “We’ve trained people to ask about sexual preference. That used to be a difficult discussion to have.”

Now, Berman said, doctors need to learn how to ask even more deeply personal questions, such as: What most matters to you? What do you need to make life worth living? In what circumstances would you rather not be alive?

The medical schools’ plans to change their curriculums stem from the work of the Massachusetts Coalition for Serious Illness Care, a year-old consortium working to ensure that every resident receives the medical care they want — no more, no less. Dr. Atul Ga-wande, the surgeon and author who helped found the coalition, approached Berman about coordinating an effort among the medical schools.

Meanwhile, on Tuesday, the coalition will mark its first anniversary with the release of a survey of 346 adults who live in Massachusetts, conducted this year. Nearly all residents surveyed said it’s important to talk about their wishes for medical care if seriously ill or near the end of life, but 35 percent had not had that conversation with anyone.

When end-of-life conversations with a health care provider did take place, they were initiated by the patient two-thirds of the time. But three-quarters of those surveyed who said they had spoken with a health care provider about their wishes found that the talk was not difficult.

“People think having the conversation is scary,” said Maureen Bisognano, the coalition’s cochairwoman and senior fellow at the Institute for Healthcare Improvement. “What we’re finding is, when people actually do it, there’s a sense of relief, a sense of peace that you have expressed your wishes to someone.”

Doctors should have this conversation with patients, Berman said, when asking about their medical and family history, before they become ill. And the conversation needs to continue throughout life as circumstances and attitudes change.

Berman said that the schools’ academic deans will collaborate on the best way to incorporate this philosophy throughout medical school and residency training. It can’t be taught in a single class, he said. He expects the curriculum changes to be adopted within a year.

In collaborating on a curriculum change, the medical schools will be building on a successful effort in 2015 to add instruction about prescription painkillers and opioid addiction.

The Massachusetts Coalition for Serious Illness Care started last year, when Blue Cross Blue Shield of Massachusetts brought together leaders in end-of-life care and dozens of organizations concerned with health care and aging. It is funded with $200,000 a year from Blue Cross and the Rx Foundation, which works to improve the quality of hospital care.

With 58 members a year ago, the group has now grown to more than 70. Each organization commits to promoting the coalition’s goals: that all adults have designated a health care decision-maker and have spoken with that person about their wishes; that all clinicians are trained to discuss advance care planning and serious illness care; and that systems are in place to make sure patients’ wishes are documented and honored.

Many of the coalition members had already been working on those issues for years. But they say the coalition bolsters those efforts. “Having to talk about it, being held accountable to a group of our peers — that makes you want to achieve things and achieve them faster. . . . It’s also really a way to hold people’s feet to the fire,” said Anna Gosline, senior director of health policy and strategic initiatives at Blue Cross, which offers workshops in advance care planning for its employees.

Dr. Diane E. Meier, director of the Center to Advance Palliative Care in New York, has been watching the Massachusetts coalition and praised it as “the kind of social movement we need.” Meier, who received a MacArthur “genius” fellowship for promoting palliative care — medical care focused on relieving the stress and symptoms of serious illness — said the coalition is on the right track in focusing on what is valuable in life rather than planning for death.

“The public knows we can’t plan for end of life,” she said. “You can’t know what’s going to happen. Asking us to make decisions about an unknown future is irrational.”

Elaine Seidenberg learned how complicated such decisions can be when she moved into Orchard Cove, a housing community in Canton that offers elders an array of social and medical services.

Seidenberg thought she had everything in order. She had a folder for each of her two children with all the legal forms laying out her end-of-life wishes. But a woman from an Orchard Cove wellness program threw her for a loop when she asked, “What are your goals?”

Seidenberg realized that she had not provided enough information for her children. “Usually when you’re doing end-of-life planning . . . it revolves around things that you don’t want done to you,” she said. “I never really thought about what made my life worth living, what I would be willing to tolerate, and what I wouldn’t.”

After a lot of thought, she realized she most values “giving back to the community, being able to communicate freely and effectively with other people.”

Last year, for the coalition’s launch, Blue Cross commissioned a survey of 1,851 Massachusetts adults. It found that more than half had not named a representative to make health care decisions if they were incapacitated, often because they weren’t sick and didn’t think it was necessary.

This year, surveyors reached out to 860 people from the original survey, and 346 completed a follow-up. The survey was conducted in February and March by the research firm SSRS and the University of Massachusetts Medical School.

Among those who reported a loved one’s death in the past two years, only half rated the care received at end of life as excellent or very good, and a little more than half said their loved’s wishes were followed and honored.

Gawande said those responses represent a “very poor” showing for end-of-life care. When asked about other types of care, such as surgery or cancer care, nearly all patients rate their care as excellent or good, he said.

“This an ambitious agenda,” Gawande said of the coalition’s work. “It’s going to take years to move the needle.”

Complete Article HERE!

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05/11/17

The Life of a Death Midwife

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Helping people through the dying process

By Claire Fordham

Olivia Bareham

Olivia Bareham wants to change people’s perception about death. “I want to break the taboo where we are excited about birth but dread death,” the death midwife said. “What if they were both explosive, incredible events?”

Part of a death midwife’s job is to sit with the dying at the end of their life. “To be able to bear witness to their dying process,” said Bareham. “The midwife is also looking beyond the last breath. We hold the space, not just for dying but for the funeral, burial or cremation rituals and even beyond that, to help the family and friends grieve.”

It’s hard to accept a terminal diagnosis.

“Some people can’t believe they are dying,” Bareham said. “It is unbelievable. It’s unbelievable that we’re even here. Once you play with the idea of the unbelievable-ness of everything, it’s not so unbelievable that you’re dying.”

Bareham believes a funeral or celebration of life service and properly grieving are important parts of the process.

“It’s declaring that the lost loved one counted and mattered and meant something to those left behind,” she said. “If you miss that, it’s sad, but perhaps it’s even more sad for the family and friends who have lost an opportunity to lean into their own mortality.”


Loved ones decorate a simple casket for a home funeral. Wooden caskets are also available. This cardboard one holds up to 200 lbs. weight.

Bareham has this advice for the living and dying: “Build a relationship with death. Befriend death. Be open to every little nuance of what it means to be alive — which includes pain, sorrow and loss — so you’re not thrown off by a catastrophe. Write your healthcare directive and death care directive because you never know when the end will come. And make peace with anyone with whom you have had conflict.”

All passings are different and not everyone gets a terminal diagnosis where they have time to plan their final moments. Having helped more than 200 people in and around Malibu as they die, or arranged their home funeral, Bareham has an idea how she’d like her own death to be.


Learning to lay a body in honor on a Death Midwife course. One of the attendees plays the body here.

“Some people want to be left alone at the moment of death. I wouldn’t mind having people in the room with me, but I wouldn’t want them touching me and close to the bed. Having a dear friend who totally gets me sitting vigil and holding the space is an anchoring that makes the dying feel safe.”

Just as there’s a popular movement toward natural childbirth, Bareham prefers the idea of a natural death. She isn’t saying don’t ever take morphine to help ease any pain, but suggests not taking so much that you aren’t aware of what’s going on. She may not want someone holding her hand or stroking her head at the end, “or telling me it’s OK to go,” she said, but is happy to do that for others, if that’s what they want.

For Bareham, a good death would be where she is aware of what is happening, where she is prepared and feels a sense of completion and fulfillment of the life lived — “so my dying is just another breath. I am ready and excited for what’s next.”

Bareham advises against waiting until you know you’re dying to forgive people who have hurt you or ask forgiveness of those you might have hurt. “It happens so quickly, and then you’re lost and scrambling. Try to stay in a state of consciousness that if death came, if a massive earthquake hit right now, you’d have a level of excitement,” she said.

People from all walks of life complete Bareham’s death midwifery course. “More young people in their 20s are doing it because they feel something is missing in our culture regarding death,” she described. “Some have been volunteering at a hospice, or are social workers. Others are intrigued with the idea that after the last breath, you can keep the body at home for three days and arrange a home funeral. Or they’ve had a horrible experience of death and are looking for healing.”

Bareham, who is fighting fit and looking forward to a long life, doesn’t find her career depressing.

“Death is just another chapter in life’s journey,” she said

Complete Article HERE!

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05/10/17

People who see death and trauma each day ask: WGYLM?

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UC San Diego Nurses use a clever guerrilla marketing campaign to get their colleagues thinking about advanced directives.

By Paul Sisson

Only one in four Americans has written down their end-of-life wishes in case they end up in a hospital bed unable to communicate — despite high-profile cases over the years that have plainly shown the emotionally painful, expensive and sometimes lawsuit-ridden consequences of not making those wishes known in advance.

A group of UC San Diego nurses and doctors is engaged in an effort to increase that ratio, building a wide-reaching campaign that started with just five letters and a question mark.

Operating like a guerrilla marketing group, albeit with the approval of two key hospital bosses, they began posting signs at both UC San Diego hospitals and its seven largest clinics. The signs simply asked: “WGYLM?”

At first, they refused to explain to others what those letters meant.

“We considered that a great victory to hear, that we were irritating people with our message. It totally primed them to be on the lookout for the answer,” said Dr. Kyle Edmonds, a palliative care specialist.

In March, the letters expanded from a five-letter bloc into the question, “What Gives Your Life Meaning?” There were small signs spelling it out and seven chalkboard-size whiteboards with the question written in large letters at the top. A bucket full of Post-It notes and pens was attached to each whiteboard display and very quickly, people wrote and pasted up their responses.

God has figured into many of those messages. There also have been plenty of first names, heart outlines and attempts at humor — including a note that said, “cheese biscuits.”

Some have been quite dark. Politics have been mentioned as well, including President Donald Trump and his proposed border wall.

The next step for the project group, after thousands of notes had built up, was to add the kicker question: “Have you told anybody?”

It’s not enough to answer the question for yourself, said Edmonds and colleague Cassia Yi, a lead nurse at UC San Diego. They want people to tell their loved ones — in writing — what matters most to them, including how they want to be treated upon death or a medical emergency.

The campaign’s organizers hope that getting people to think about the best parts of their lives will provide an easier entry point for end-of-life planning.

The National Hospice and Palliative Care Organization recommends that everyone fill out an advance directive to make their wishes known in writing. Also often called “living wills,” these are witnessed legal documents that confer medical power of attorney to the person you designate if two doctors certify you are unable to make medical decisions.

Each state has its own form, and California’s asks people to specify whether they want a doctor to prolong their life if they have an irreversible condition “that will result in … death within a relatively short time or if they “become unconscious and, to a reasonable degree of medical certainty … not regain consciousness.”

This has been fraught territory, with many high-profile cases in the courts of distraught families wrestling over the decision to remove life support without any knowledge of the patient’s true wishes.

That includes the case of Terri Schiavo, who was left in a persistent vegetative state after a heart attack in 1990 caused severe brain damage. Her parents clashed with her husband, Michael, who asked the court to order her feeding tube removed in 1998 on grounds that she would not have wanted to live in such a state. Because she had no living will, it took years of very public legal wrangling before life support was disconnected on March 18, 2005.

Yi said she and other nurses feel this type of gut-wrenching stress every time a “Code Blue” page sends them scrambling for a patient who needs immediate resuscitation. Most of those patients don’t have wills or other written indications of their wishes in place, even though every patient is asked if they have an advance directive upon admission to the hospital.

“Advanced care planning wasn’t happening until people were coding out. There is nothing advanced about that,” Yi said.

Even before the current awareness campaign, Yi and her colleagues had worked with computer experts to add special categories to UC San Diego’s electronic medical records system that provide a single collection point for this kind of information. Previously, such details could be entered in dozens of different places, depending on the whims of whoever was taking notes at any given moment.

The project team also got the computer programmers to add a shortcut that allows caregivers to quickly access an advance-directive template.

Since the revamped system went live in February 2015, Edmonds said there has been a 469 percent increase in the number of patient charts that include some sort of information about end-of-life care.

But the project was not reaching every patient — or enough of the university’s medical staff.

Yi recalled a trip that some UC San Diego nurses took to the CSU Institute for Palliative Care at Cal State San Marcos. There, they saw “WGYLM?” signs and learned what the acronym meant. At the time, Cal State San Marcos was in the early stages of creating the “What Gives Your Life Meaning?” project.

The nurses thought: Why not adopt that program for UC San Diego as well? They liked that the operation could be rolled out in a provocative way and that it didn’t simply ask people to fill out advanced directives.

“It just makes an introduction in a more positive, intriguing light,” Yi said.

So far, nearly 1,300 employees in the UC San Diego Health system have taken the pledge to prepare their end-of-life documents and talk with their loved ones about these issues.

Sharon Hamill, faculty director of the palliative care institute at Cal State San Marcos, said the “WGYLM?” campaign has been held on that campus for three years in a row and has spread to sister campuses in Fresno and Long Beach.

She said the signature question was created by Helen McNeil, who direct’s the California State University system’s multi-campus palliative care institute, which is also housed on the San Marcos campus.

Hamill also said the message resonates strongly with people of multiple generations, including college students taking care of ailing grandparents or even parents.

“I love it when one of them stops me somewhere and tells me they saw one of the signs and were thinking about it all the way to class,” she added.

For more information about advance directives, go to nhdd.org.

Complete Article HERE!

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05/3/17

A New Life for Dying:

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Death Doulas and the Death Positive Movement

By Kristi Pahr

Our great grandparents and their great grandparents and their great grandparents would have thought the way we die is strange. They died at home, we die in hospitals and nursing homes. They died surrounded by loved ones, we die surrounded by doctors and nurses. They died where they lived, we die where we die. Up until the mid-1800s, death was an everyday part of life. Members of multigenerational households, which were the norm, lived together and died together. Whether it came quickly or took its time, death happened in the home, just like birth. Just like life.

And when they died, their loved ones held space for them in their homes. Family and friends grieved them and remembered them and loved them through the transition and beyond. Today, though, death is scary. Death isn’t part of life anymore. We’ve removed it from the home and tucked it away in antiseptic, clinical, brightly lit spaces and it’s become foreign to us.

But, death doesn’t have to be frightening. Or solitary. Or clinical. Death can be peaceful and calm, serene and sacred. There is a movement of people taking death back. Pulling it from the cold, harsh confines of the hospital room, and bringing it back into the home and into the world of the living. Death doulas are on the forefront of the fight to reclaim grief and demystify death.

Death doulas, or spiritual midwives, serve a similar function to birth doulas or midwives, but on the other end of the spectrum. A birth doula helps the mother bring life into the world, a death doula helps when life is ready to depart the world. They provide support for the dying and the family, creating space, answering questions, asking questions and being a calm and loving presence during a time of great change.

Janie Rakow, president of INELDA, the International End of Life Doula Association, describes a death doula as, “… someone who acts as a guide and companion through the end phase of an illness. This work can start as soon as someone is admitted to hospice.” She says, “the doulas work with the dying person and their loved ones through the final dying process and into the early grieving stages afterward.”

Rakow explained that INELDA’s doula’s work generally runs in three stages. They begin by discussing death with the patient and the family, openly and honestly, allowing them to explore their feelings and their fears. The doula helps to establish what Rakow describes as “personalized, guided visualizations” and the dying’s preferences in music and readings are also defined. A vigil plan is also worked out during this time.

The second stage begins as the patient begins to actively die. The doulas hold space created during the establishment of the vigil plan and allow family to take breaks as needed, knowing that any changes will be relayed immediately. They don’t have to be afraid of not being present because the doula is trained to recognize the different stages and hallmarks of the dying process and can alert the family as things change. The doula is present during the death and stays with the family, providing comfort and support, until after the funeral home has come.

During the third stage, after the death, the doula helps the family to process their grief and answers any questions or concerns the family may be holding onto from the death.

While the term “death doula” is new, the concept of holding death and grief as sacred is not. Death becoming medicalized and moving into hospitals played a big part in it becoming something that families and loved ones feared. Grief over the loss of loved ones, the period of mourning after a death, were, until relatively recently, significant and special things. Now, however, we are encouraged to hide our grief, to consider it a messy and private thing, when, for generations past, it was a point of community. People were not expected to grieve alone when their loved ones died. They were lifted up within their communities and mourning was neither shameful nor private. They were given time and space to mourn.

Another group whose aim is to re-center grief and take back ownership of death is the death positive movement, begun by mortician Caitlin Doughty. She started The Order of the Good Death in response to the culture of fear that surrounds modern death. The group’s mission is to break down that fear and make death a part of life. According to The Order of the Good Death, the group is comprised of funerary professionals, academics and artists who strive “to bring death awareness and acceptance into a culture that is all too often death phobic.”

Both of these groups are working hard to bring death back into life and remove the stigma and fear modern society has pinned to the natural process. Both groups advocate for death as a sacred experience, a personal experience, a life experience.

By utilizing the services of a death doula, loss and grief can be refocused on the love and the sacred, instead of on fear and negative emotions. By joining, or just acknowledging, the death positive movement, people can help to de-stigmatize the process of dying, which in the end will make the idea of death much easier for everyone to digest.

Complete Article HERE!

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05/1/17

Seattle chaplain: Far too few know about Washington’s Death with Dignity Act, end of life options

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Washington’s Death with Dignity act was passed in 2008.

By Josh Kerns

It’s a subject few are willing to talk about: our own deaths.

And even though Washington is one of just six states where doctor-assisted death is legal, very few utilize it, and many know nothing about their options. But a dedicated group of volunteers is working tirelessly to change that.

Retired Seattle chaplain Trudy James says death has always been a part of her life.

“My first baby died at 4 days old, my father took his own life when I was 35, and I became a hospital chaplain when I was 47,” she said.

As a chaplain, she was at the forefront of the AIDS epidemic, working daily with people young and old facing death. She helped build a community of volunteers to support them.

“They were suffering and they knew that they were going to die,” James said. “And what we learned is when they had people around them and things to look forward to and people to talk to, they lived longer and they died better deaths.”

That led James to create the Heartwork end-of-life planning groups.

She began offering workshops and training volunteers in congregations, senior centers, private homes and elsewhere to help raise awareness about the options, and to help people take control of their own end-of-life decisions.

Death with Dignity

Voters approved Washington’s Death with Dignity Act in 2008. It allows terminally ill adults with six months or less left to live to request lethal doses of medication from a doctor, refuse life-saving medical treatment like resuscitation, and to stopping eating and drinking to hasten death.

There are a number of steps involved in this, such as exams and repeat oral and written requests to a doctor who chooses to prescribe the medication.

“A lot of people don’t even know we have this new law in Washington. And if they do know or if they voted for it, they have no idea how to access it or what it would mean or what it offers them,” she said.

There are plenty of people and organizations opposed to doctor-assisted death.

Many religious groups and right-to-life advocates argue doctor-assisted death interferes with God’s will. Doctors in some religious-based hospitals are prohibited by their employers from discussing the law.

After seeing scores of people die extremely painful deaths over the years, James couldn’t disagree more.

“I say dying in intensive care with machines hooked up to all of you and not being able to speak to your loved ones isn’t really a natural death,” she said. “It’s prolonging dying, but it’s not prolonging living.”

This is not suicide

One thing James and other end-of-life advocates underscore is that they are not promoting or encouraging death – just awareness of the options. Namely, that those suffering from painful, degenerative conditions — ranging from cancer to ALS — can hasten their death.

And these advocates emphasize that this is not doctor-assisted suicide. They argue the word suicide should only describe those physically well enough who would otherwise continue living.

“These are people who are going to die anyway and they’re just reducing suffering for themselves and their family,” she said. “That seems to me what God would want.”

James’ experiences with her ministry and the workshops inspired her to produce a short film she could show at senior centers, hospices and elsewhere.

What started as a 12-minute, simple short is now a full-fledged 30-minute documentary called “Speaking of Dying.” It’s basically people speaking from the heart about their own experiences with illness and death.

James says even though people don’t want to think or talk about death, when they can learn their options and plan for it, it can bring incredible peace of mind. And she says it’s something we should all be thinking about and planning for with our families, friends or doctors sooner rather than later.

“There’s nothing that says you’re not going to die until you’re 75 or 80,” James said. “Many people die young and it’s so comforting if they’ve done some work with them and talk with them and tell them what they want.”

James will be hosting a special screening of the “Speaking of Dying” on Saturday, April 29 at Seattle Baptist Church. The goal is to celebrate the film’s second anniversary and raise money to help show and distribute it to more broadly.

“There is always grief when someone you love dies,” she said. “But I say it’s better when they’ve had a peaceful ending.”

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