Death with dignity: dying to die

[I]n May of 2016, Judith Dale was diagnosed with incurable Stage IV colorectal cancer that had metastasized to her liver and lungs. Having taken care of her mother when she was dying of cancer and witnessing its ravages, Ms. Dale wanted to die with dignity, something the California legislature permits patients with a terminal illness to do.

California, like several other states, has an End of Life Option Act (EOLOA) which “allows patients who have a terminal disease (with a life expectancy of six months or less) to request a life-ending drug prescription from their doctor.” Ms. Dale sought to avail herself of her rights under California law.

Sadly, she was denied that opportunity.

Ms. Dale would not have chosen her physician and medical center where she was treated unless they agreed to “respect and help facilitate her right to a more peaceful death via aid in dying,” according to the lawsuit filed against the physician and medical center. That lawsuit claims that the medical center and physician committed elder abuse/neglect, misrepresentation/fraud, negligent infliction of emotional distress, and negligence by failing to assist Ms. Dale with her final wish as it promised it would do.

As a result of the defendant’s failure, Ms. Dale’s “final weeks were brutal” and she suffered a “horrific death,” according to the lawsuit. This unfortunate story, which will be resolved in the courts, presents an opportunity for long-term care owners/operators and all healthcare practitioners to learn from it.

If not, they fail to do so at their peril, risking legal liability, among other adverse consequences.

States with End of Life Options Acts

Currently, five states and the District of Columbia have a Death with Dignity Act or End of Life Options Act. Those states are: California, Colorado, Oregon, Washington and Vermont. Montana does not have a statute regarding physician aid in dying, but its supreme court has ruled that state law does not prohibit a physician from honoring the wishes of a competent and terminally ill patient to receive a prescription that will hasten death.

In the states noted above, in order to receive a prescription for a lethal dose of medication, the patient must be at least 18 years old, be a resident of that state and have a terminal illness. Additionally, the patient must make two separate requests from his/her physicians at least 15 days apart.

As a safeguard, in the states that permit physicians to aid in dying, the physician must certify that the patient is medically competent to make that decision. In some states, such as Colorado, the patient must be referred to a consulting physician to confirm the diagnosis of competency.

The Colorado experience

Mount Evans Home Health & Hospice, in Evergreen, Colorado, was one of the Colorado hospices that had to determine its position and develop a policy and procedure after voters in Colorado passed the State’s first End of Life Options Act last year.

“The Mount Evans Home Health Care & Hospice Board of Directors felt it was important to engage in careful and thoughtful dialogue into the many complexities of this important issue,” said Charley Shimanski, President and CEO of Mount Evans. “This included elements such as supporting our clinical staff, weighing the differing board member viewpoints, and considering other support mechanisms available to patients/families.

“At the same time,” he adds, “we feel strongly that regardless of the path a patient chooses, we respect their choice and will provide the same comprehensive compassionate hospice services to all of our patients.”

Intersection of law, medicine, ethics

The issue of physician aid in dying is controversial at best and implicates the intersection of law, medicine and ethics. While the law allows for physician aid in dying in the states noted above, not all professional organizations have embraced or supported this growing movement.

For example, the American College of Physicians notes in its position paper that it “does not support legalization of physician-assisted suicide” in part because it “fundamentally alters the medical profession’s role in society.” Likewise, the Society for Post-Acute and Long-Term Care Medicine/American Medical Directors Association’s (AMDA) official position is that “AMDA opposes any physician involvement in assisted suicide or active euthanasia of any person regardless of age.”

Notably, professional organizations seem to have an evolving position on the issue of physician aid in dying. For example, the American Academy of Hospice & Palliative Medicine takes a position of “studied neutrality on the subject of whether PAD [physician assisted death] should be legally regulated or prohibited.” The Colorado Medical Society also took a “neutral” position when the issue was on the ballot, noting, “Ultimately, Proposition 106 [Colorado’s EOLOA] represents the most personal of decisions that must be left to our patients to determine.”

Mona’s final journey

Last Thanksgiving, I exchanged holiday greetings with Mona, a lifelong and dear friend. Days later, Mona’s sister called to say that Mona had had emergency surgery the day after Thanksgiving and then chose to be in hospice due to a terminal prognosis. I flew to the hospital/hospice facility in Nevada where my dear friend from childhood lay unconscious and slowly dying.

The “terminal morphine drip,” as it is referred to in medical community, kept Mona barely breathing and essentially unconscious for days. In spite of her decision for a hasty and dignified death given her terminal prognosis, she lingered in that unconscious state for days until she gasped her last breath.

As I held her hand, feeling completely helpless, I wondered if this slow ending was what Mona really wanted. Understandably, we may be reluctant to “let go” of loved ones but in the final analysis, each competent adult has the right to choose if he or she wants to die with dignity or soldier on and fight as long as possible.

In Mona’s case, she did not have the luxury of living in a state with an End of Life Options Act. And so it is with most terminally ill patients.

Recommendations

The most salient recommendation for long-term care providers is to have a well-reasoned policy and procedure, consistent with state law. If you are in the majority of states, the policy is straightforward: The law does not currently permit physician aid in dying, although that might change.

Consider how rapidly states began to legalize medical marijuana once that train left the station. For providers who are in states where physician aid in dying is legal, it is essential to have a policy that comports with your mission statement and values while respecting patients’ right. For example, hospice agencies in states with an EOLOA may choose to be “all in” and allow their medical directors and attending physicians to write the final prescription. Or, they may want no part of that process. Many hospices take a position in between the two extremes.

Few, if any decisions are as personal and far-reaching as the decision to end one’s life. Long-term care providers should be aware that it is likely that more state legislatures will enact End-of-Life-Options Acts. Until then, terminally ill patients will rely on the incredibly caring and competent long-term care providers, including hospices, physicians, nurses, and social workers, to ease their final journey.

Complete Article HERE!

‘Bucket lists’ might help with end-of-life discussions

By Randi Belisomo

[S]haring your “bucket list” could be easier than discussing end-of-life medical preferences, and it might be just as useful to your physician, researchers suggest.

If you, like many Americans, have a “bucket list,” your doctor would be well-served by learning its contents, according to Stanford University researchers, who say a conversation about these goals might help guide future care.

Their study, published in the Journal of Palliative Medicine, found that 91 percent of participants had a “bucket list,” or a list of things they hope to do before they die.

Researchers say the bucket list conversation is a simple strategy to help patients consider health decisions. In learning these goals, clinicians are better suited to promote informed decision-making when discussing the potential impact of treatment options.

“The number one emotion I see in patients when they are dying is regret,” said study author VJ Periyakoil, director of the Stanford Palliative Care Education and Training Program in California.

Her team’s online survey asked more than 3,000 participants nationwide if they had a bucket list and what was on it, in order of importance. The average participant was about 50 years old.

Travel was the most prevalent desire. More than 78 percent submitted travel-related hopes. Among college-educated women, 84 percent had destinations in mind.

Accomplishing a goal, like finishing a degree and learning to swim, was important to about 78 percent.

Roughly half hoped to achieve milestones, like getting married, celebrating an anniversary and reconnecting with old friends.

Desire to spend quality time with friends and family ranked fourth, followed by hope for financial stability.

Daring activities turned up on 15 percent of lists. Respondents 25 and younger were much more likely to report daring activities, such as skydiving and swimming with sharks.

Participants who said religion or spirituality was important were the most likely to have a bucket list.

“Faith allows you to imagine something that cannot be verified,” Periyakoil explained. “The ability to imagine something is a proxy for a level of hope even in the face of little evidence. Those are the people who have things on their list and hope they can do them.”

The researchers did not have participants share their lists with physicians, nor did they ask physicians for their opinions on the idea of sharing patients’ bucket lists. Furthermore, the survey did not target people living with chronic or terminal disease.

Still, the researchers hope their findings will help shift end-of-life planning away from an over-reliance on documents.

“If we look at advance directives as the savior of our health system, it’s not going to work,” Periyakoil said. “I don’t want to wait for my doctor to tell me it’s time to do my advance directive. I would rather go to the doctor and say what’s on my bucket list.”

Such a discussion is more intimate than the more sterile conversations that sometimes accompany advance directives, said Susan Mathews, a bioethicist, nurse and instructor at Indian River State College in Fort Pierce, Florida.

“Advance directives are about death; a bucket list is about living,” Mathews said. “A bucket list, if prepared with a dose of serious reflection, gets to the heart of our relationship with self and the others for whom we care.”

Patients should still complete advance directives, she said, but with periodically updated companion documents that express goals.

Like advance directives, bucket lists can change.

The changing of a patient’s health status is one concern with the bucket list strategy, according to medical anthropologist Craig Klugman, who teaches classes on death and dying at DePaul University in Chicago. “Being asked about a bucket list could create anxiety that they should have a list and take efforts to fulfill it,” Klugman said.

Periyakoil said, too often, physicians don’t realize what patients want from life. If they ask about these desires, they can avoid the clinical vacuum in which treatment plans are too often made.

“We need patients to understand that it’s their life, have a better understanding of what they want to do, and understand that medical procedures are a pathway they are signing into,” Periyakoil said.

Complete Article HERE!

The 11 qualities of a good death, according to research

Opening up about death can make it easier for ourselves and our loved ones.

by Jordan Rosenfeld

[N]early nine years ago, I received a call from my stepmother summoning me to my grandmother’s house. At 92 years old, my Oma had lost most of her sight and hearing, and with it the joy she took in reading and listening to music. She spent most of her time in a wheelchair because small strokes had left her prone to falling, and she was never comfortable in bed. Now she had told her caregiver that she was “ready to die,” and our family believed she meant it.

I made it to my grandmother in time to spend an entire day at her bedside, along with other members of our family. We told her she was free to go, and she quietly slipped away that night. It was, I thought, a good death. But beyond that experience, I haven’t had much insight into what it would look like to make peace with the end of one’s life.

A recent study published in the American Journal of Geriatric Psychiatry, which gathered data from terminal patients, family members and health care providers, aims to clarify what a good death looks like. The literature review identifies 11 core themes associated with dying well, culled from 36 studies:

  • Having control over the specific dying process
  • Pain-free status
  • Engagement with religion or spirituality
  • Experiencing emotional well-being
  • Having a sense of life completion or legacy
  • Having a choice in treatment preferences
  • Experiencing dignity in the dying process
  • Having family present and saying goodbye
  • Quality of life during the dying process
  • A good relationship with health care providers
  • A miscellaneous “other” category (cultural specifics, having pets nearby, health care costs, etc.)

In laying out the factors that tend to be associated with a peaceful dying process, this research has the potential to help us better prepare for the deaths of our loved ones—and for our own.

Choosing the way we die

Americans don’t like to talk about death. But having tough conversations about end-of-life care well in advance can help dying people cope later on, according to Emily Meier, lead author of the study and a psychologist who worked in palliative care at the University of California San Diego’s Morres Cancer Center. Her research suggests that people who put their wishes in writing and talk to their loved ones about how they want to die can retain some sense of agency in the face of the inevitable, and even find meaning in the dying process.

Natasha Billawala, a writer in Los Angeles, had many conversations with her mother before she passed away from complications of the neurodegenerative disease ALS (amytropic lateral sclerosis) in December 2015. Both of her parents had put their advanced directives into writing years before their deaths, noting procedures they did and didn’t want and what kinds of decisions their children could make on their behalf. “When the end came it was immensely helpful to know what she wanted,” Billawala says.

When asked if her mother had a “good death,” according to the UCSD study’s criteria, Billawalla says, “Yes and no. It’s complicated because she didn’t want to go. Because she lost the ability to swallow, the opportunity to make the last decision was taken from her.” Her mother might have been able to make more choices about how she died if her loss of functions had not hastened her demise. And yet Billawalla calls witnessing her mother’s death “a gift,” because “there was so much love and a focus on her that was beautiful, that I can carry with me forever.”

Pain-free status

Dying can take a long time—which sometimes means that patients opt for pain medication or removing life-support systems in order to ease suffering. Billawala’s mother spent her final days on morphine to keep her comfortable. My Oma, too, had opiate pain relief for chronic pain.

Her death wasn’t exactly easy. At the end of her life, her lungs were working hard, her limbs twitching, her eyes rolling behind lids like an active dreamer. But I do think it’s safe to say that she was as comfortable as she could possibly be—far more so than if she’d been rushed to the hospital and hooked up to machines. It’s no surprise that many people, at the end, eschew interventions and simply wish to go in peace.

Emotional well-being

Author and physician Atul Gwande summarizes well-being as “the reasons one wishes to be alive” in his recent book Being Mortal. This may involve simple pleasures like going to the symphony, taking vigorous hikes or reading books He adds: “Whenever serious sickness or injury strikes and your body or mind breaks down … What are the trade-offs you are willing to make and not willing to make?”

Kriss Kevorkian, an expert in grief, death and dying, encourages those she educates to write advance directives with the following question in mind: “What do you want your quality of life to be?”

The hospital setting alone can create anxiety or negative feelings in an ill or dying person, so Kevorkian suggests family members try to create a familiar ambience through music, favorite scents, or conversation, among other options, or consider whether it’s better to bring the dying person home instead. Billawalla says that the most important thing to her mother was to have her children with her at the end. For many dying people, having family around can provide a sense of peace.

Opening up about death and dying

People who openly talk about death when they are in good health have a greater chance of facing their own deaths with equanimity. To that end, Meier is a fan of death cafés, which have sprung up around the nation. These informal discussion groups aim to help people get more comfortable talking about dying, normalizing such discussions over tea or cake. It’s a platform where people can chat about everything from the afterlife (or lack thereof) to cremation to mourning rituals.

Doctors and nurses must also confront their own resistance to openly discussing death, according to Dilip Jeste, a coauthor of the study and geriatric psychiatrist with the University of California San Diego Stein Institute for Research on Aging. “As physicians we are taught to think about how to prolong life,” he says. That’s why death becomes [seen as] a failure on our part.” While doctors overwhelmingly believe in the importance of end-of-life conversations, a recent US poll found that nearly half (46%) of doctors and specialists feel unsure about how to broach the subject with their own patients. Perhaps, in coming to a better understanding of what a good death looks like, both doctors and laypeople will be better prepared to help people through this final, natural transition.

Complete Article HERE!

We Need to Revolutionize End-of-Life Care — Here’s Why

Because it’s time to start thinking about death differently.

By Laura Dorwart

[W]hen Victoria Chang’s mother was diagnosed with pulmonary fibrosis, she didn’t have a single person she felt she could turn to. Six years earlier, her father had a stroke that led to significant neurological changes, and now the young poet realized she alone would have to care for them both. None of her friends had sick or elderly parents, so she felt completely isolated.

What followed was a decade of navigating America’s imperfect end-of-life health care system, without much guidance from the doctors and specialists she so frequently encountered. When asked what she would have done differently over the course of the stressful years, Chang says, frankly, “Everything.”

“Everything was a learning curve, everything new,” she says, noting how she wished there had been more help for people like her. “Emotions were high, and we needed a case manager or a consultant or something. Hospice seemed to help, but in the end, there was only so much they could do.”

Chang’s experience caring for seriously ill loved ones is sadly not unique. Thanks to a combination of denial, a lack of know-how and flawed systems, most Americans don’t have the support they need when it comes to end-of-life care. According to a study by the California HealthCare Foundation:

Furthermore, a majority of those surveyed had not even communicated their end-of-life wishes to the loved one they would want making decisions on their behalf. That’s where Dr. Ira Byock, chief medical officer of the Institute for Human Caring at Providence St. Joseph Health, comes in. A renowned expert in palliative care and the author of The Four Things That Matter Most: A Book About Living and The Best Care Possible, Byock wants to reimagine health care as a more personal, approachable system. He wants to boost the person-to-person communication and eradicate denial — an approach he and his colleagues call Whole Person Care.

Dr. Byock

“[Whole Person Care] attends not just to your medical problems, but to your personal priorities, values and preferences,” explains Byock. “You’re someone with bodily needs but also have emotional, relational, social and spiritual parts of your life, all of which need to be attended to.”

This perspective may not seem all that radical, but it is clearly not the current practice. American medicine is good in that it’s a “problem-based system,” Byock says. “It is organized around your problem list on your chart. Everything we do, by design, responds to a problem on your list.” But life isn’t just a set of problems to be solved; patients have lives that extend well beyond the walls of hospitals and waiting rooms. Health care, in Byock’s opinion, should address this reality at all stages of life.

Perhaps most importantly, Whole Person Care includes patients’ families at every level of care. Byock emphasizes the significance of the familial role in a patient’s comfort, as well as the ripple effects of a single individual’s illness on loved ones and their network of relationships. “Whenever one person gets a serious diagnosis, everyone who loves that person shares in the illness. It’s a family and community issue.”

Chang, for one, can attest to the need for a system like Whole Person Care. “Looking back, I can’t remember the past decade because I was so busy helping everyone around me,” she says.

When asked what advice she would give to those caring for a family member or spouse dealing with a serious illness, Chang emphasizes the importance of self-care and finding community support in whatever form that might take. Remember that “it is OK to think about yourself and to take care of yourself,” she says. “Seek out groups to share with and to get emotional support. I only did this toward the end when I started reading about and writing to people on the pulmonary fibrosis foundation website. Those forums saved my life.” She also encourages folks in similar positions to consider their options, including daycare, homecare and facilities, and weigh the pros and cons of each.

Byock also encourages those faced with these situations to manage their own health: “People can experience wellbeing even in the midst of serious illness.”

Complete Article HERE!

‘This Is Us’ shows Americans it’s OK to grieve

Americans often seek to move on and leave the deaths of loved ones behind — failing to resolve their feelings in the process — which is why “This Is Us” is such useful TV.

By Jennifer Wright

[I] love “This Is Us.”

Not because I think it’s corny, or over the top. I don’t watch it ironically. I love it with a complete and total earnestness. That is what it deserves.

Because NBC’s “This Is Us” is one of the only shows on television that honestly explores the ongoing nature of grief.

Each episode deals with a cast of characters who are still mourning the loss of their father, Jack Pearson, who died 20 years ago. The episode after the Super Bowl finally revealed Jack’s cause of death. Spoiler: It was that he ran back inside his family’s burning house to save his daughter’s dog and suffered a heart attack from smoke inhalation. A stunning 27 million viewers tuned in.

The show’s creator Dan Fogelman tweeted that, “My mom died 10 years ago, unexpectedly. It’s the hinge upon which my life swings. Jack’s death is the Pearson hinge. We look back. We move forward. That’s our collective journey.”

That attitude is quietly revolutionary in a country that doesn’t like to dwell on death, let alone the sadness it provokes. America exists in stark contrast to other cultures like Mexico, where the Day of the Dead is celebrated, or China, whose Qingming Festival is intended to remember ancestors who’ve passed away. In America, we’re expected to move tidily through the stages of grief and then not talk about our loss too much anymore.

Ongoing grief doesn’t fit with American ideals about being strong and resilient.

That doesn’t mean it doesn’t exist. According to Psychology Today, many people are incapacitated by grief. It notes, “approximately 10 to 20 percent of bereaved persons have severe enough, unremitting reactions to loss that result in a complicated grieving process that may require treatment.” When you consider that “8 million people suffered through the death of someone in their immediate family last year,” according to the National Mental Health association, that makes for a lot of powerfully bereaved people out there.

Teens — as the children in “This is Us” were at the time of their dad’s death — can be struck especially hard. An essay in Social Psychiatry on “Suicide following bereavement of parents” found that there is five times greater risk of suicide in teens following the loss of a parent.

For the most part, the Pearsons on “This is Us”s seem to have resumed their lives. But anyone who has lost a loved one can tell you that you don’t just grieve for a limited amount of time and then go back to “normal.” The normal that existed prior to that loss is gone. You can grieve on the days you expect (like Jack’s wife, played by Mandy Moore, who makes his favorite dinner each year on the anniversary of his death), but you can also be hit unexpectedly by it (as happens to Jack’s now-adult daughter Kate when she considers adopting a dog).

In a culture where death is often a taboo topic, “This Is Us” is a show that can get people talking about it.

You can see people on Twitter responding to the episode about Jack’s death by saying, as @littlestgrey did:

“Jack’s conversation w Rebecca about not being in the ground was almost word for word the conversation my Grandma had with me. Have I mentioned how cathartic this show is?”

Or, like @Kab_Fair, who tweeted:

“my mom died when I was young and I carry her with me every day, I think that is the message of This Is Us, she’s never gone, just physically unknown to those who occupy my life today.”

“This Is Us” does something incredibly valuable in showing us that it is OK to be sad. The characters in the show are able to grieve, but they’re also able to partake in life’s many joys.

It’s nice to see that, now that Jack’s death has been revealed, the show will go on to explore how the death of Jack’s brother in Vietnam affected him. And it will probably end up making us cry all over again.

On the show and his own grief Fogelman tweeted, “Sad? Yes. But when you look through a wide enough lens — it’s also outrageously beautiful.”
To grieve is to have known love.

The characters are dealing with a deep sadness that almost all of us will eventually experience. That’s true whether or not we want it to happen, and whether or not we want to talk about it. To experience loss is, as the show’s creator says, our collective journey.

Complete Article HERE!

Sinners, sailors and those who died by suicide: The adults buried in Ireland’s cillíní

Deprived of a Christian burial on the basis that they were unworthy, who are the adults in Ireland’s hidden graves?

Historian William Casey shows the site of a 1920 unofficial graveyard (cillín) a few miles from the village of Ballydehob in west Cork.

By

[A]cross the water the odd light twinkles on Heir Island. It’s an idyllic evening and the retiring sun shoots a last glance at Jeremy Iron’s castle dressed in its unusual orange.

We’re standing by the shore at Skeaghanore West near Ballydehob. Remote and beautiful spots, just like this, are now coveted by those who seek the beauty and solitude of West Cork – but this was once a place where untold sadness lingered.

In Famine times, people from neighbouring parishes would make the long walk to this spot to gather shellfish in a desperate attempt to stay alive. Exhausted and starved, many died once here and are buried in a cillín overlooking the shore.

With local historian William Casey I attempt to get a closer look at the grave, located on a former ecclesiastical site, pulling back the thick coverage of briars and torn bushes.

“You could have hundreds of Famine victims here,” explains Casey.

“Grown men and women as well as children. This was their last attempt to live but when they lost that battle for life they’d be carried here and laid to rest, one after the other.”

Though cillíní are generally recognised as unofficial burial grounds for unbaptised children, records show that adults, such as Famine victims, were often buried in them too.

And it’s shocking to discover why so many Irish adults were deemed unworthy, by the Catholic Church and wider society, of a traditional burial down through the centuries.

Those who died by suicide, sailors, strangers, mothers who died in childbirth, criminals, murder victims, those with mental illnesses or physical deformities, people who died in a duel, excommunicates, were laid to rest in remote cilliní alongside little babies and children.

“Canon law lists ‘Those to Whom Ecclesiastical Funeral Rites Are Denied’,” explains Dr Eileen Murphy, an archaeologist at Queen’s University Belfast, who has studied cillíní closely.

She continues: “While most people buried in cilliní were unbaptised infants we also have examples of older individuals such as a pregnant woman in the cillín at Tonybaun, Co Mayo. Her skull displayed unhealed weapon injuries and I think it is the violent nature of her death that may have necessitated her burial in the cillín. We also have a newspaper account from Co Down of the body of a suicide victim who died 30-years previously and was discovered in 1842.”

Tom Cassidy, Conservation Officer with Limerick County Council, worked on an archaeological survey of Co Galway in the early 1980s.

The foreshore where people searched for shellfish near the site of a 1920 unofficial graveyard (cillín) a few miles from the village of Ballydehob in West Cork.

He says: “Galway has the highest concentration of recorded cillíní in the country. We came across a burial ground near Gort where two adults were said to have been buried. One was a British soldier who met his end during the War of Independence (from 1919 to 1921) and was buried in a cillín so his body wouldn’t be found. The other, we believe, was a man who was killed in a faction fight during a fair in the town. You could see from the stone markers that these weren’t infant’s graves.”

Incredibly some cillíní were still in use up to the early 1980s. Officially there are 1,393 cilliní in the State but most historians believe this figure is a mere fraction of the real number.

Emer Dennehy, an archaeologist now working with Transport Infrastructure Ireland, explains that in some cases mothers and babies who died in childbirth were buried together.

“In some cases it’s recorded that the baby would be buried between the mother’s legs in what were known as ‘tandem burials’. And if the mother died without being ‘churched’ (a blessing given to mothers after recovery from childbirth) then she could be buried in a cillín as well.”

Dennehy carried out one of the most detailed studies into cillíní when she surveyed the hundreds of such burial grounds in Co Kerry. She told me about the logic behind the traditions – especially as they related to suicide victims.

“The thinking which came from the church was ‘if you bury the person who died by suicide in a normal graveyard then they will contaminate it for everyone else buried there’. It was all about fear. They reckoned that only God could decide when you die so these people weren’t welcome. It was considered they, and so many others, ‘died outside the Grace of God’ and the Church completely played on this.”

Understandably, families, so desperately fearful of the stigma associated with suicide, would attempt to cover up the cause of death.

It’s believed this practice continued well into the 20th century so that a conventional burial could be granted.

For many, interment of an adult family member in a cillín was the worst shame to be endured.

Archaeologist Noel Dunne tells of “Mags Kilteel” – discovered by a passing merchant as an abandoned baby in Kildare around the 1890s, she became part of the Broderick family. But when she died, in her mid-20s, she was interred in a cillín rather than with the rest of her adopted family. Forever an outsider.

A range of unsettling practices in cillíní have been recorded. According to folklore some children were buried face down if they were handicapped or illegitimate or when childbirth almost resulted in the mother’s death.

Along the coast, sailors, and other unknown individuals washed up on the shore, were buried in cillíní. Written accounts provided by the National Folklore Collection confirm sailors were buried on the Great Blasket Islands. Similarly, we know sailors were laid to rest at a cillín in Renvyle, Co Galway, as well as in Dooks, Co Kerry, and on Heir Island.

While convicts and criminals would also have been buried in unconsecrated ground Dr Linda Lynch, an Osteoarchaeologist, explains that most would not have been buried in cillín.

“As cillíní are mainly located in rural areas, its less likely convicts would be buried there. It would be more usual for them to be buried near prisons and urban centres – in prison graveyards.”

Like this cillín in West Cork, many such graveyards across the country are left untouched by farmers and landowners who know not to encroach on these places of mass burial.

Buried, too, beneath the thorns, the gorse bushes, the long grass and the ferns are stories of unimaginable pain, suffering and tragedy.

In many cases stones mark out the dimensions of the infant’s grave but what of the larger dimensions, the last resting places of so many adults labelled inferior to those buried in graveyards.

Shunned in life and then in death.

Complete Article HERE!

What is the Death Positive Movement?

By 

[S]ome of us think of it often, others none at all. Sometimes we joke about it, other times fear it. No matter your approach or point of view, the fact remains: we will all inevitably die. It is literally the one thing we all have in common. And, on top of that, we will have to bear witness to the deaths of those around us. Yet, in spite of this irrefutable fact, Western culture doesn’t seem to be able to talk about the big “it.” Instead of allowing this commonality to bring us together, it often alienates us from each other. This is where the Death Positive movement comes in.

It is allude to in popular culture, through commercials, music, and other types of media. It is the subject of films and novels, and even television series. But even though we are in many ways surrounded by representations of death and grief, its presence and role in our own lives is something many feel afraid or uncomfortable speaking about. It is this internal and societal conundrum that many of us experience that is the focus of the “Death Positive” Movement.

The Death Positive (or Death Positivity) Movement is represented by the general (and growing) movement toward opening platforms for discussion about the inevitability of death and dying. The movement focuses on the importance of encouraging open discussions on the reality of both our own death, and the death of others. This includes the creation of platforms and spaces where such discussions can transpire in a comfortable, honest, open, and curious environment; where individuals may come together with different perspectives and exchange them with one another.

It also has a very practical goal of teaching us how to speak to others (i.e. our parents and partners) about their end-of-life wishes, as well as our own. The hope is that death will become de-mystified, and that as a result, society (and the individuals that comprise it) will be able to prepare for death and the grief that often follows. More importantly, discussing death and dying actually enables us to think about our own immediate lives. It encourages us to lead the life we want to live, and appreciate the little things.

You may be wondering where it is that these death positive discussions take place? How can you become involved? We’ll give you hint- it doesn’t happen in mortuaries or creepy church basements over skeletons and ouija boards. There are in fact a number of platforms- both online and in physical spaces- where death positive discussions take place on a regular basis.

One of the most widely and regularly practiced organized series of discussions on death and dying are known as Death Cafés, and occur all over the world. First established in 2004 by Swiss social anthropologist, Bernard Cretan, with the intention of breaking the taboo surrounding discussing death, they have since been held in cities all over the world. At a Death Café people will gather over coffee and treats to discuss death, dying, and experiences of grief.

Much of this discussion enables the participants to understand what is most important in their lives, allowing them to focus on these positive elements to live more fully and happily. They are often held in different locations throughout a given city, but always with the intention of creating comfortable spaces to discuss personal experiences and questions about death, dying, grief, and all that’s in between.

We highly recommend taking part in a Death Cafe in your area!

Complete Article HERE!