The Four Words Nobody Likes to Hear

You’re Going to Die

You’re Going To Die is part open mic, part storytelling, centered around a more positive embrace of death.

By Emma Silvers

About two months ago, seated on a small airplane that was descending through a lightning storm on its way to land in Florence, Italy, I was 90 percent certain I was going to die.

My terror only lasted about 10 minutes—from the moment I saw the first flash in the dark outside the tiny window, through a half-dozen weightless-feeling, heart-stopping lurches, until the wheels touched down on the runway.

Which is to say, it was nothing compared to what the residents of Hawaii felt earlier this year when one click of the wrong button at a local government office sent warning of an imminent ballistic missile in an all-caps text message to everyone within state limits.

The mistake went uncorrected for 38 minutes—minutes in which, as a close friend who happened to be there for a wedding later told me, people did what anyone would do: panic and try to take shelter, yes, but also attempt to make peace with the inconceivable notion that there, on a previously unremarkable Saturday in January, they were about to die. Unable to assess the legitimacy of the threat, my friend called her parents and told them she loved them, then she and a few other wedding attendees headed for the beach. At the very least, they decided, they would die somewhere beautiful.

I can’t be alone in hitting a wall of cognitive dissonance when I try to think about death: it’s universal, an equalizer, one of the few absolute inevitabilities about the experience of being human (along with taxes, har har). And yet it’s also so personal, and unknowable: especially for those of us who don’t practice a religion with a sure-footed concept of the afterlife, what actually happens when we leave this mortal coil is the ultimate in unavoidable question marks. All of which makes it fantastically appealing to try to avoid the topic entirely—particularly if you live somewhere, like, say, America, that worships youth and the young.

But if the uptick in death-themed workshops and events geared toward young people is any indication, avoiding the topic of death is no longer working for a vast number of people.

“It’s a really a whole movement we’re seeing, in which people are asking different questions, having new conversations, saying they’re not satisfied with how death has been treated in our culture—which is, of course, to push it aside until you can’t anymore,” says Chelsea Coleman, a singer-songwriter and co-host of You’re Going to Die, an ongoing performance series in which participants are invited to share stories and songs about grief and loss. Coleman hosts the series’ first Oakland event this Wednesday, Sept. 26, at the Starline Social Club.

Founded in San Francisco in March 2009 by the writer Ned Buskirk, “YG2D” began as a monthly community open mic at the intimate, now-defunct venue Viracocha; it didn’t take long for the event to start regularly selling out. Buskirk soon restructured the night to highlight featured musicians at each event, eventually asking Coleman to join him as co-host.

Ned Buskirk founded You’re Going To Die in 2009.

Coleman attended her first event in 2012, shortly after the death of her grandfather, with whom she was very close. “I was with him when he died, and I wrote songs about it, so I was looking for an outlet to perform some heavy stuff,” says Coleman. “Often when you play at a bar, it’s like—sure, you can play songs about heartbreak, but ‘Here’s a song about my grandpa dying’ is really not the vibe most places.”

She was hooked after one show. “It was such a powerful space,” says Coleman. “Hearing other people speak and perform is always moving, but I also felt like what I was offering had more power there. In the past I had sometimes felt like what I was doing was a burden.”

“But people show up [at YG2D] because they want to have an emotional experience,” she says. “That changes everything.”

A selection from the You’re Going To Die Instagram feed, which offers regular reminders of the inevitable.

You’re Going To Die became a registered nonprofit in 2017. The organization has expanded swiftly in the last two years, forging new partnerships with prisons—including workshops and shows at San Quentin—and with hospice programs, in which volunteers visit with people who are dying to hear stories, and to write or play music with them. The events are spreading geographically as well, with workshops or shows planned for San Diego, Ohio and New York in the coming months.

In doing so, the nonprofit joins organizations like The Dinner Party, a grief support network for 20- and 30-somethings that began as a series of informal potlucks in LA; the network now includes meetups in the Bay Area, Washington, D.C. and New York. Death Salon, meanwhile, hosts pop-up events of academic discussion and performance organized by a group of medical historians, artists and funeral industry professionals who’ve positioned themselves at the forefront of the Death Positive Movement.

It’s tough, as an American, not to wonder if there’s some correlation between the growing call for such conversations and the events of the past two years—when macabre jokes about our president’s access to nuclear buttons have become part of daily life: one part gallows humor, two parts very real fear.

But for a vast number of Americans, of course, the reality of death is perhaps no closer than it ever felt before: black men and women contend with the reality that they might be killed every time they step out the door, for actions as simple as walking, driving or taking BART.  When a former coworker of mine, an activist and health care worker who was also a trans woman, died earlier this year, I felt (along with sadness for her family and close friends) a small sting of resignation: the numbers don’t lie. 

Coleman has a sense, however, that those not previously accustomed to considering death may have been moved in that direction by the “heightened” state of U.S. politics since 2016.

“I think a lot of people who have had the privilege of being in denial for a long time are starting to ask questions,” she says, as I flash on my brief lightning storm-induced terror. “A lot of communities haven’t had that privilege.”

Regardless of the timing, “I think things feel heavy right now for pretty much everyone, and it’s very clear to me that people are hungry for these kinds of conversations,” says Coleman, recalling the first YG2D event she hosted solo, without Buskirk. “I was nervous people weren’t going to want to talk, but from the moment we started, everyone wanted to tell stories.”

Oh, and keep that in mind if you’re heading to your first YG2D, as well. Coleman says some of the most powerful performances come from people who weren’t planning on performing. While the event has morphed over the years, the open-mic portion still makes up its bones. Audience members who’ve never sung or told stories publicly before quite frequently take the stage.

In other words, there’s perhaps something universal happening there as well. What would I do if I had 38 minutes to live? For a topic so commonplace, so obvious and so inevitable, people surprise themselves all the damn time.

Complete Article HERE!

Death Is Not An Emergency: How Recompose Is Redesigning The End of Life

Katrina Spade envisions more options for the end of life that draw on nature as a model. Spade was named a 2018 Ashoka Fellow for her groundbreaking work.

Ashoka

Katrina Spade wants to transform the U.S. funeral industry, making way for many more options for those facing death and for their families. She founded Recompose in 2017 to champion a dramatically new approach that reconnects death to natural cycles of life and engages people through meaningful participation. Ashoka’s Michael Zakaras caught up with Spade to learn more.

Michael Zakaras: What inspired your interest in the rituals and practices around death?  

Katrina Spade: I had a moment around age 30 when I realized I was mortal, and I became curious about what would happen to my physical body when I died. Because my family is not religious and most of my friends aren’t either, I thought, what will they do? And I discovered that there are really just two options in the U.S.: cremation and conventional burial. Both practices poison the planet — this struck me as the wrong punctuation for lives lived in harmony with nature.

Zakaras: Why do we have just these two options?

Spade: Much of it is convention, it’s just the way things have been done. Take modern embalming. Many people think of it as a centuries-old tradition — but it became popular in the U.S. only during the Civil War. A couple of enterprising young people invented and marketed it to soldiers on the battlefield as a way to get their bodies home to their families — for advance payment. They used arsenic instead of formaldehyde back then. Today’s funeral practices, and many of our laws, are based on the dual practices of selling caskets and embalming bodies from 150 years ago.

Zakaras: How big is the funeral industry today?

Spade: About $20 billion dollars, and it’s an interesting industry, with many funeral homes passed down generation to generation and a few large corporations that own a lot of funeral homes. One of the things that’s so interesting is the idea that every person can “own” a piece of land for eternity, in the form of a cemetery plot. This is not a sustainable model, especially for cities with space constraints.

Zakaras: That’s a good point. How much land would you need to bury everyone in, say, New York City?

Spade: We’d need over 200 million square feet of land, or 7.5 square miles! And besides the land use, cemeteries are filled with metal, wood, concrete, and embalming fluid, a known carcinogen.

Many people consider cremation to be a more sustainable choice, and its popularity is rising: by 2035 an estimated 80% of Americans will be cremated. But actually, cremation is an energy-intensive process that releases greenhouse gases and particulates, emitting more than 600 million lbs of CO2 annually.

Zakaras: So what’s the alternative?

Spade: With Recompose, we asked ourselves how we could use nature — which has totally perfected the life/death cycle — as a model for human death care. We developed a way to transform bodies into soil, so that with our last gesture we can give back to the earth and reconnect with the natural cycles. We’re also aiming to provide ritual, to help people have a more direct and conscious experience around this really important event. As hard as it can be, the end of one’s life is a profound moment — for ourselves and for the friends and families we leave behind.

Zakaras: If you are successful, what will look different in 10 years?

Spade: I’m hopeful that we will have many options for the end of life — from hospice care all the way through disposition. It won’t be the odd family who says, “Maybe we should have a home funeral” — it’ll be every family that says, “Okay, how are we approaching this? What feels right to us?” And it will be normal to ask: “What do I want my end of life to look like? What will happen to my body? Where do I want to be when I die?” These are things that should be up to us, but we’ve never really felt that we had the agency or the cultural support to decide them.

The funeral industry would like us to think that it’s difficult or impossible for us to care for our own after a death, but humans have been doing that for millennia. There are a lot of reasons to take back some of that work, the work of caring for the dead, because there’s so much beauty inherent in it and it’s such a personal thing.

Zakaras: Why is this a particularly important moment for this work?

Spade: There’s a growing realization of climate change, coupled with this incredible cohort of baby boomers — 10,000 Americans turn 65 every day — who are approaching the end of their life or seeing someone go through death and thinking, “Is this really the best we can do?” This is a generation that’s really good at saying “Wait a minute, we can do better than this.”

Zakaras: Do you ever get tired of talking about death?

Spade: I never do! We have such a long way to go, but a new relationship with death is totally possible. One of my favorite sayings is “Death is not an emergency.” This is a wonderful reminder that the very first thing we should do when someone dies is pause and take a deep breath and just be in the moment.

14 Death Festivals Around the World

By Lauren Cocking

Mexico isn’t the only country which sets a date with the dead.

Around the world, different countries, cultures, and religions have unique relationships with their dead. And yet, there are plenty of festivals of the dead—which take place over the course of days, or even months—that share spookily similar rituals. Think: offering food, cleaning tombstones, and thanking deceased loved ones for their care and guidance. Don’t let shared origin stories diminish the importance and significance of each one though—they’re all as fascinating as the last.

Hungry Ghost Festival

WHERE: China

China’s Hungry Ghost Festival—which has the best name I think I’ve ever heard—is actually a Hungry Ghost Month. In fact, only the final day of the month, when the boundary between life and death is most blurred, is known as the Hungry Ghost Festival, and Chinese Taoists and Buddhists mark the solemn occasion by  burning a lot of paper. Not only do they burn paper offerings—which signify the things living relatives wish to send to their deceased loved ones in the afterlife—they also release paper lanterns to help guide the spirits home.

Obon Festival

WHERE: Japan

The Obon (or just Bon) Festival is another Buddhist affair, and the Japanese equivalent of China’s Hungry Ghost celebrations (both take place on the fifteenth day of the seventh lunar month). However, the Japanese version is now usually celebrated on a fixed rather than fluctuating date, around mid-August. Depending where you are in Japan, you might see dances (like the Bon Odori), the release of floating lanterns, or bonfires marking the occasion, although visiting graveyards is a common countrywide ritual.

Chuseok

WHERE: North and South Korea

Unlike China and Japan, the Koreas honor their ancestors in the eighth lunar calendar month (roughly September/ October), in a celebration which also combines dance, food and general revelry over three days. The food, especially rice cakes called songpyeon, plays an important role, principally because thanks are also given to the deceased for their role in providing a good harvest. However, like other days of the dead around the world, graves are also cleaned and dances are also danced.

Samhain

WHERE: Celtic Peoples

Before Halloween (or All Hallows Eve) there was Samhain (or All Hallows), a Celtic tradition that admittedly has much in common with our present-day October 31 rituals. Take our fancy dress tendencies and giving of sweets for example. The day before Samhain, people thought that their ancestors returned from the afterlife to essentially press a giant reset button on the land and leave it empty just in time for winter. As a result, the night before (a.k.a. Halloween), they’d wear masks to blend in and leave food out for the returning souls. Sounds familiar, right?

Fiesta de las Ñatitas

WHERE: Bolivia

La Paz, Bolivia welcomes an unusual day of the dead ritual each November, as the Aymara people head to the central cemetery with their deceased loved ones’ skulls in tow. Displayed in boxes, and often adorned with flowers, the skulls are also given offerings (think: food and drink) in thanks for having watched out for their relatives from the realm of the dead over the course of the past year.

Gai Jatra

WHERE: Nepal

To catch a glimpse of the Nepalese Festival of the Cows (otherwise known as Gai Jatra), head to Kathmandu in August or September, where the eight-day affair is principally celebrated. Confused as to what a Festival of the Cows has to do with celebrating the dead? Cows are thought to help guide the deceased into the afterlife, so families with a recently departed loved one will guide a cow (or a boy dressed as a cow) through the streets to both honor and aid their deceased.

Qingming (a.k.a. Ancestors’ Day)

WHERE: China

Cleaning the tombs of the deceased forms a large part of China’s Ancestors’ or Tomb Sweeping Day, although consuming dumplings and flying kites are also important. Similarly, offering goods of value in the afterlife—such as tea and joss sticks—is also practiced on Qingming. It’s said that this memorial to the dead, which takes place in roughly mid-April, was established as a way to limit the previously overly-extravagant and all-too-regular ceremonies held in memory of the deceased.

Pchum Ben

WHERE: Cambodia

Pchum Ben, a 15-day-long ritual when the veil between living and dead realms is considered to be at its flimsiest, is celebrated countrywide in Cambodia. While the first 14 days, known as Kan Ben, are about remembrance, the fifteenth day—or, Pchum Ben Day—is when Cambodians gather en masse to celebrate. And, as with other festivals of the dead, food is offered to the souls of the departed, who it’s thought return to earth to both connect with their loved ones and atone for past sins.

Pitru Paksha

WHERE: Hindus around the world

Undefined by geographical bounds, Pitru Paksha is a Hindu festival which, like that of the Cambodian Pchum Ben, centers on praying and providing food for the deceased. However, Pitru Paksha lasts for 16, rather than 15 days, and those who take part apparently shouldn’t undertake new projects, remove hair, or eat garlic for the duration.

Radonitsa

WHERE: Russia, Belarus, and Ukraine

Radonitsa, the Russian Orthodox Church’s second-Tuesday-of-Easter memorial for the departed, stemmed out of a Slavic tradition which involved visiting graveyards and feasting with the dead. Nowadays, the rituals remain remarkably intact, as this joyful remembrance involves leaving Easter eggs on the tombstones of the deceased before dining beside them, as well as sometimes gifting presents to your in-laws.

Totensonntag

WHERE: Germany

For German Protestants, Totensonntag (a.k.a. Sunday of the Dead) is considered a day of remembrance, on which those who honor the occasion will typically pay a visit to the graves of their deceased loved ones. However, unlike some of the festivals of the dead mentioned so far, Totensonntag is a far more somber affair. In fact, it’s sometimes known as “Silent Day” and it’s actually forbidden to dance and play music in public in some parts.

Tiwah

WHERE: Indonesia

The beliefs of the Dayak Ngaju people of Central Kalimantan, Indonesia state that after death and the departure of a person’s soul, their body’s spirit remains on earth. In order to liberate that spirit and ensure they ascend to the highest level of heaven, it’s necessary to conduct a tiwah. Held anywhere from some months to years after a loved one is buried, the tiwah involves the exhumation and purification of bones and can be a prolonged event in which multiple families participate.

Thursday of the Dead

WHERE: The Levant

In the Levant—a historical geographic region which includes many modern day, Eastern Mediterranean countries—Thursday of the Dead (sometimes known as Thursday of Secrets, Eggs or Sweetness) brings together Christian and Muslim traditions to honor the souls of the deceased around the Easter period. Typically celebrated in the morning, sweets and breads are traditionally doled out to children and those in need.

Día de Muertos

WHERE: Mexico and wider Latin America

You can’t talk about global festivals of the dead without throwing in at least a few references to Mexico and wider Latin America’s Día de Muertos festivities. On November 1 (Día de los Angelitos) and 2 (Día de Muertos), people from across Mexico pay homage to and celebrate the lives of their deceased loved ones by building altars and displaying sugar skulls, amongst other things. In Guatemala, giant kites are flown, while in Ecuador, the Kichwa people memorialize their deceased loved ones by visiting, cleaning, and eating at their gravesides.

Complete Article HERE!

Author’s new book looks at dying at home

‘It’s my passion to demystify hospice’ — Karen J. Clayton

 

by

With more Americans living longer and aging in place, more also want to die at home.

Few, however, actually do.

Karen Clayton of Oak Harbor believes more terminally-ill individuals and their caregivers might choose home end-of-life care if they knew more about the physical and emotional support provided by hospice services.

“It’s my passion to demystify hospice so patients and families will use this truly extraordinary care,” she said. “I believe most people think hospice is a really good thing—for someone else. They do not realize they can have six months of quality end-of-life care wherever they live.”

Clayton’s just-released book, Demystifying Hospice: Inside the Stories of Patients and Caregivers, is based on years of experience working as a social worker in public and private hospitals, a hospice, and with the American Cancer Society. She plans to discuss her book and the topic of hospice care at a series of presentations and workshops around Whidbey Island this fall.

Clayton describes herself as a hospice social worker, sociologist, author and a story catcher.

Studies have shown that approximately 80% of Americans would prefer to die at home, if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home.

According to the National Hospice Foundation, many people at the end-of-life are being referred to hospice care too late or not at all.

Many Americans don’t realize hospice care is a benefit of Medicare, Medicaid, VA benefits, and many other insurance plans, Clayton said. Additionally, hospice organizations can help those with no insurance.

“Hospice offers at least six months of care for terminally ill patients and their caregivers,” she added. “So, it’s stunning that, in 2015, half of the U. S. hospice patients had this truly extraordinary care for 17.4 days or less and one-third for seven days or less.”

Home hospice services consist of a team of professionals who regularly visit patients at home and are available 24 hours a day. Nurses, social workers, chaplains and nurse aides comprise the main team and some services also provide massage therapists, even instrumentalists, such as harpists, to play soothing music.

Hospice services also supplies medication and delivers equipment, such as hospital beds, wheelchairs and personal hygiene items.

Clayton’s book doesn’t focus on medical problems but rather the emotional and practical help given by socials workers to patients, caregivers and families.

“The caregiver receives training and support from the team, and it is difficult,” Clayton said. “It helps to have someone to talk with about the types of feelings involved; fear, grief, anger, curiosity about how to help in the best way.”

She also provides caregiving tips and suggests ways to connect with people in their final days.

“It’s good when families spend time with photo albums, old family films, games, movies, playing checkers or chess, remembering the good times in their lives, the things they have contributed through their job or service,” Clayton said. “Quality of life can be maintained when patients are offered activities, food, family interactions within the limits they have.”

Clayton’s book describes the hope, healing and support that home hospice care offers.

Each story addresses some aspect of helping families through the caregiving and grieving process and it offers comfort and understanding to readers who may be going through similar experiences.

“These stories will lift your spirits and touch your heart,” Clayton said. “It’s a joyful thing to learn how to provide good physical and emotional care for the person you love.”

Karen Clayton will discuss hospice care and her book at the following free events open to the public:

Three Journeys: Writing, Caregiving, Publishing; 3 p.m., Thursday, Oct. 18, Friends of the Library, Oak Harbor Library

“Demystifying Hospice” workshop: 1:30 p.m. Monday, Oct. 22, Coupeville Library

“Demystifying Hospice” workshop: 2 p.m. Wednesday, Dec. 5, , Freeland Library

“Demystifying Hospice” workshop: 10 a.m., Saturday, Dec. 8, Langley Library

• More information  HERE!

Complete Article HERE!

Spotting Elder Abuse: Tips for Long-Distance Caregivers

From a distance, it can be hard to assess the quality of your family member’s caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going.

Perhaps you have already identified friends or neighbors who can stop in unannounced to be your eyes and ears. Sometimes, a geriatric care manager can help.

You can stay in touch with your family member by phone and take note of any comments or mood changes that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. Abuse can take many forms, including domestic violence, emotional abuse, financial abuse, theft, and neglect.

Sometimes the abuser is a hired caregiver, but he or she can also be someone familiar. Stress can take a toll when adult children are caring for aging parents, or when an older person is caring for an aging spouse or sibling. In some families, abuse continues a long-standing family pattern. In others, the older adult’s need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the middle to late stages of Alzheimer’s disease, the older adult may become difficult to manage and physically aggressive, causing harm to the caregiver. This might cause a caregiver to respond angrily.

But no matter who is the abuser or what is the cause, abuse and neglect are never acceptable responses. If you feel that your family member is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, talk to someone who can act on your behalf: your parent’s doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.

Learn more about the signs of elder abuse and how to get help.

Read about this topic in Spanish. Lea sobre este tema en español.

For More Information About Elder Abuse

Eldercare Locator
1-800-677-1116 (toll-free)
https://eldercare.acl.gov

National Committee for the Prevention of Elder Abuse
info@preventelderabuse.org
www.preventelderabuse.org

National Center on Elder Abuse
1-855-500-3537 (toll-free)
ncea-info@aoa.hhs.gov
https://ncea.acl.gov

Complete Article HERE!

How to ask your parents about their estate plan

Asking your parents about their estate plan isn’t always easy, but in the end, it’s about making their wishes come to reality.

By

Making plans for the end of life is important, but it’s a topic a lot of people tend to avoid. In fact, surveys show that some 60 percent of Americans lack a will or estate plan.

Yet, if you were to ask, most of them would assure you they want to care for their family after they die. They want to safeguard the assets they’ve carefully built over the years, keep them in the family, and make sure Uncle Sam doesn’t take the lion’s share.

How do you find out if your own parents have taken care of their plans? Adult children find it challenging to talk with their parents about such things. The subject can be sensitive and emotional. You may worry about appearing self-serving. Yet, it’s important for you to have such details so that you can be better prepared.

Here are some ways to make the topic easier to broach.

1. Watch for off-handed cues, such as your father mentioning his mortality or the reference to having attended a friend’s funeral. This is an opportunity to mention that as much as you don’t want to think about it, you want to respect their wishes, should a critical health situation come into play. Do they have an advance directive and power of attorney? Tell them you need to know in order to help carry out their wishes.

2. Ask your parents for advice on your own estate plan. Inquire as to how they have handled their own will or trust, and open with such questions as, “Who is on your team of professionals for your estate?” Refer to having reviewed your life insurance policy to make sure your beneficiaries are current and ask if they have checked theirs lately to make sure their beneficiaries are up to date.

3. Set an appointment to talk with your parents. If an opening does not come up to talk about this casually, set a time with them to discuss it. Let them know this meeting is about making sure their wishes for the future are respected. When you meet, assure them that you don’t want to guess about their desires and have some questions that address some delicate but important areas.

Once the door opens for you to talk with them about this, be sure you don’t shut it quickly. Assure them you have asked for this conversation in order to make sure they are well taken care of.

Once you begin exploring the details, don’t put your parents on the defensive. Asking why your parents have decided certain things the way they have can cause sensitivity. Instead, as they share information, mirror this back to them so that they feel heard.

An example would be, “What I hear you saying, Mom, is that you prefer to be cremated rather than buried, is that right?” Take it slow, allow them to express feelings about the choices they have made for their future. If they are reticent to talk about money, tell them numbers are not important – you just want to make sure they have planned well for what lies ahead.

If you can set the stage for an honest and candid discussion, be sure you include addressing the following four things: (1) A will or trust with a coordinated estate plan; (2) an advance health care directive; (3) a durable power of attorney; and (4) a list of assets and where they store important documents you might need when the time comes.

Complete Article HERE!

The cost of not talking about death to dying patients

Will you know when it is your time to die? It is a question that has permeated my mind since July 14, 2017. This was the day my mother died. It was a sad day, but it pales in comparison to the months preceding it. A breast cancer that had returned aggressively, a hasty port placement to receive chemotherapy that was too late  and an ICU admission that began many futile interventions that never saved her life, but prolonged my mother’s suffering.

As a registered nurse, I watched a scene unfold that I swore to myself I would never let happen to anyone I loved. Yet, there I was listening to an oncologist discuss a 30 percent chance she would respond to chemo (which did not mean she would be cured) and choosing this inappropriate treatment for my critically-ill mother. I was party to these decisions when my mother couldn’t make them and when she made some recovery in her mental status, she also chose to continue treatments.

Were these decisions well founded? They were missing a key piece of information, that even with my training, I failed to see. My mother was dying. She was dying and none of my mother’s care providers were able to say those words.

Would my family have chosen a different path for my mother, if there had been a more explicit conversation? Resoundingly, yes. If my mother’s health-care providers would have had a deliberate discussion about her impending death my family would never have chosen chemotherapy and instead chose to initiate hospice care.

As a nurse, I have a duty to advocate for patients. Advocating can take many forms, but most often, it is helping patients navigate the complexities of the health-care system as well as explaining the meaning of test results, procedures, and diagnoses. Often, answering the question “What does this mean for me?” In my own practice, I have helped many patients understand the life changes needed to manage, diabetes, heart failure, and coronary artery disease.

But, like the nurses who provided care for my mother, I struggle having explicit conversations about dying with my patients. This does not appear to be an isolated phenomenon. In a 2018 study, researchers in Australia surveyed acute care and critical care nurses to assess their understanding and utilization of end-of-life discussions and care planning. They found that nurses’ own knowledge and rates of participation are low when it comes to end-of-life care.

On the other side of this, is a patient who may not be making a well-informed decision, because they don’t understand their disease is life-limiting or that they are dying. When the focus is shifted from “fighting to live” to “death is imminent,” other care decisions can be made by these patients. They can choose hospice care. Patients who have a prognosis of 6 months or less are eligible.

In hospice, care is shifted from procedures, tests and medications that can cause discomfort or pain for the patient, to comfort measures that improve the quality of one’s last days. Medicare, who pays for this benefit, found that only 12-25 percent of beneficiaries’ days during the last year of life are being spent in hospice. Are we having these conversations with our patients too late? I have coordinated and provided care for patients who only hours before their death have been enrolled in hospice, even though their diagnosis had been terminal and had been known by the patient’s providers for months.

To be sure, there are nurses who are adept at having these difficult discussions about death with patients and their families. But it is not a skill that comes easy to the majority of the profession. Fortunately, there are resources available to help nurses facilitate these conversations in an effective way.

The End-of-Life Nursing Education Consortium (ELNEC) project, for example, is a national education initiative that seeks to educate nurses on better end-of-life care. Their curriculum includes coursework on how to lead effective communication during end-of-life care.  

Perhaps, we need to re-evaluate how we train our nurses to have conversations about death and dying. Have those who are experts at these discussions share their wisdom and teach nurses how to have these conversations in an empathetic and impactful way so that patients can receive the comfort and dignity of hospice care in a timely manner. If we can make these changes in our communication with patients and their families, perhaps, one day we will all know when it is our time to die.

Complete Article HERE!