Depression symptoms increase over last year of life

Dark times.

By Lisa Rapaport

Many people experience worsening depression symptoms over their final year of life, and a U.S. study suggests that women, younger adults and poor people may be especially vulnerable.

For the study, researchers examined data on 3,274 adults who participated in the nationwide Health and Retirement Study and died within one year of the assessment. All of the participants had completed mental health questionnaires and provided information on any medical issues they had as well as demographic factors like income and education levels.

Rates of depressive symptoms increased over the last year of life, particularly within the final months, the study found. By the last month of life, 59% of the participants had enough symptoms to screen positive for a diagnosis of depression, although they were not formally evaluated and diagnosed by clinicians.

“Patients with depression have worse survival outcomes than non-depressed patients, making depression a critical issue to screen for and manage in the context of serious illness,” Elissa Kozlov of the Rutgers University Institute for Health, Health Policy, and Aging Research in New Brunswick, New Jersey, and colleagues write in the Journal of the American Geriatrics Society.

And, “psychological symptoms, such as depression, have a negative impact on patients’ quality of life as they near the end of life,” Kozlov and colleagues write.

Researchers had asked participants whether they experienced eight things over the previous week: depression, sadness, restless sleep, unhappiness, feeling like everything takes effort, lack of motivation and loneliness. People with at least three symptoms might screen positive for depression, the study team writes.

Across the entire Health and Retirement Study population, including people who didn’t die within a year of their most recent assessments, about 23% of participants have at least three of these symptoms, the researchers also note.

In the current analysis, depression scores remained relatively stable from 12 to four months prior to death, then steadily increased. With four months to live, 42% of participants had at least three symptoms of depression, and with one month remaining, 59% did.

One year before death, women had higher depression symptom scores, with almost three symptoms on average compared to about two for men. With one month to live, both men and women had three or more symptoms and there was no longer a meaningful difference between the sexes.

Differences in depression scores based on age and income were also more pronounced one year before death, and became less pronounced closer to death, the study found.

However, the youngest and poorest participants had the highest depression scores at all points in time.

As death approached, nonwhite participants also had increasingly high depression scores.

And, one month before death, people without a high school education had the highest depression scores of all, averaging almost five symptoms.

The study wasn’t designed to prove whether or how terminal illness might impact mental health, or the reverse.

Even so, the results underscore the importance of screening for mental health problems and treating conditions like depression in the final months of life, the researchers conclude.

“Given the range of options to treat depression, unaddressed depressive symptoms in the last year of life must be a focus of both quality measurement and improvement,” the study authors write. “While depressive symptoms at the end of life are common, they are treatable and must be proactively addressed to reduce distress and ensure that everyone has the opportunity to experience a ‘good death,’ free of depressive symptoms.”

Complete Article HERE!

6 Ways to Reduce Stress at the End of Your Life

It’s not easy nearing the end of your life, but that doesn’t mean you need to be stressed.

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Death may be the ultimate stressful moment in our lives. Just thinking about the end is enough to cause your heart to beat faster. And while some levels of depression and anxiety are inevitable, those feelings need not overwhelm the death experience for you or your family. In fact, it’s possible to die well — to experience a sense of wellbeing as you approach the end. You can leave this life with a feeling of closure and a sense of contentment. That’s the difference between completing your life and merely ending it.

But stress disrupts well-being. It distracts you from prioritizing love, family, and dignity. Worry and fear interrupt precious time with family and friends. That’s no one’s idea of a good death. And while it’s easy to think you’ll skip this stressful step and go suddenly from a heart attack or stroke, the reality is the majority of us will need end-of-life care. So, put some thought and preparation into your passing now. Reducing stress will make it easier for you to say goodbye, and for your loved ones to let go. Here are six ways you can make dying the experience you want, rather than the experience you get.

Finalize Your Burial Arrangements

Preparing your burial arrangements lowers stress in several ways. For one, it puts you in control. Eliminate worry by outlining the type of service you want, the manner of internment, and the organ donation process. Burial arrangements also relieve financial stress from your family and friends. Carrying out your last wishes doesn’t have to be a financial burden for your family. So, find the best final expense insurance policy to cover costs. Or get a pre-paid funeral plan that kicks in after you’re gone. You’ll feel less stress knowing everything is taken care of.

Finally, by tending to your funeral arrangements yourself, your loved ones can focus more on spending time with you in your last day. And their grieving will be easier when they’re not weighed down with administrative tasks. Mourners often feel guilty devoting time to such business matters after a loved one dies.

Create a Living Will

If you become incapacitated before death, someone will have to make decisions for you. That’s a heavy responsibility to place on a family member or friend who may only have a rough idea of your wishes. But without a health care power of attorney (or proxy) to speak for you, you may end up being kept on life support longer than you’d prefer, or the opposite. An advanced directive or “living will” is a legal document that lists specific medical treatments you wish to receive and those you don’t. The directive takes the decision-making burden off your family’s shoulder.

To get started, have the end-of-life conversation with one or two people you would want to serve as your proxies. And also talk with your doctor so that everyone is on the same page. Living will forms vary by state. So, download your state’s advanced directive form to get started. If you don’t have the resources to create a living will, other forms of non-legal directives can work as some form of “proof” for your wishes. For example, write a letter to a family member expressing your wishes. Or record audio/video explaining what you want. While these aren’t formally recognized legal documents, they work better than nothing at all.

Make Amends

One thing that makes dying harder is knowing you’re leaving behind unsettled issues, old hurts, and past grudges. When possible, make amends with those you’ve hurt or who’ve hurt you. Now is the time for unburdening yourself and being honest with those you love. While you can leave those hurt feelings behind, your loved ones will carry them after you’re gone. And many will regret they didn’t say something when they had the chance. Knowing this will make leaving this life more stressful for you.

So, don’t put off making amends. Request a private audience with a loved one or wait for the right moment to broach the subject. Be honest and take responsibility for your part in the situation. Refer to the past event/issues that caused the rift, but don’t relive it all over again. And don’t bring up their responsibility; just explain your regrets and apologize. They will reciprocate. Think of this less as a discussion and more as a confession. So, listen more than you talk. The goal of making amends is to replace hurt and anger with forgiveness and love.

Revisit the Past

For those facing imminent death, the bulk of the conversation often focuses on medical needs, medications, or staff visits. While these are immediate needs are necessary, don’t forget the past. Revisiting old memories help us replace the current situation with one of our choosing — at least for a moment. Rather than a form of denial of death, recalling memories is an affirmation of our lives and our effect on others. For friends and family, recounting a past event is a handy way to show how a dying loved one impacted their lives. It’s often difficult for the dying person or loved one to find the right words in these moments. Words of condolence or regret can seem empty. But a pleasant or meaningful story can be a beautiful expression of our gratitude.

Recalling old memories is also a stimulating activity for Alzheimer’s patients. It fosters emotional connections and reduces anxiety. Use family albums, music, videos, or heirlooms to help prompt memories. Encourage family and friends who can’t travel or live too far away to send a short letter or audio recording. And don’t avoid humor. Include funny moments, old jokes, or humorous anecdotes. It may feel awkward at first, but laughter is nature’s way of helping us relieve stress and anxiety while connecting us.

Use Music Therapy

Studies suggest that music therapy has emotional and physical benefits for hospice and palliative care patients. Researchers found that patients who listened to music reported “less pain, anxiety … as well as an increase in feelings of well-being afterward.” Music therapy has a profound effect on people with cognitive and mental decline. The rhythmic nature of music requires little mental processing and helps stimulate memories. Choose music that your loved one enjoys, tunes from their childhood era, or a neutral New Age track. But don’t overstimulate; that can create stress. Take note of the other noises in the room. When mixed with many different sounds, even soothing music at a low volume to create a cacophony of stress.

Ask for Pain Medication When You Need It

Palliative care is about making patients feel as comfortable as possible until the end. And pain management and medication are part of this process. Unlike other vital signs, hospitals and staff can’t measure your pain. You have to help them know when you’re feeling discomfort. Still, some patients forego their pain meds because they want to stay awake to see their friends and family. Others see pain medication as “bad” substances or only for the weak or needy. But these are myths. Pain meds are integral to the palliative care process. And there’s no reason to forego pain medications that’s more important their your comfort. You may think you’re being strong for your family, but having to watch you fight intense discomfort will only increase their stress levels. Ask for pain medication when you need it.

These six tips will increase well-being and reduce stress when you’re nearing the end of your life. But once you’re faced with death, it’s important to know when it’s time to let go. Too often, we hold on too long out of a primal urge to keep going or fear of leaving our loved ones. Death is a natural process we all share. Take comfort in that immutable fact. Let your loved ones know you’re ready to go. They, too, will hold on to you, fearing that letting you go is “giving up.” This creates enormous amounts of stress. When it’s time, reassure them that — while you’re not ready to die — you have accepted it.

Complete Article HERE!

To die well, we must talk about death before the end of life

In a research study, 84 per cent of residents and families who received a pamphlet about end-of-life choices felt encouraged to think about their future care.

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I would like to tell you an all-too-familiar story. It begins with a long-term care home resident, Laura, who has multiple chronic conditions and gets an infection that doesn’t get any better.

Her health has been declining for months, but no one has talked to her about her preferences for end-of-life care. In the absence of that knowledge, she is sent to the hospital where she undergoes stressful tests.

The story ends with Laura dying in the hospital, alone and frightened. Her family is traumatized, and so are the staff who have cared for her over the past year.

It’s a simple fact that 100 per cent of us will die. Conversations about our future health care and what’s important to us — called advance care planning — have shown distinct benefits.

In fact, research shows that as many as one third of seriously ill, hospitalized older people are receiving invasive treatments they don’t want at end-of-life, because no one has talked to them about their wishes for future care. This is true even in long-term homes, where the average lifespan is less than two years.

Pamphlets help stimulate conversation

How do we change those statistics and give our older people the care they want — and deserve? My team’s research has focused on answering that question over the past six years.

We recently developed a series of pamphlets and distributed them in long-term care homes to try to get the conversation started.

The pamphlets were disease-specific (for example, focusing on dementia), and included information about life-limiting illnesses, what to expect and tips for talking about wishes for the future.

In our study, 84 per cent of residents and families who received a pamphlet felt encouraged to think about their future care and 70 per cent felt clearer about what to talk about.

Planning death is a great relief

Moving from thinking to discussion, however, was a different matter. Family members worried that bringing up the subject would destroy hope. Residents thought they should protect their families from thinking about their death.

And many long-term care home staff indicated that they did not feel trained to participate in these conversations — in fact, only 21 per cent handed out the pamphlets, preferring instead for families or residents to take them from a display board.

Encouragingly, the 56 per cent of residents and families who did have conversations after receiving a pamphlet expressed great relief. A typical response from families was: “It makes it easier for me right now because now I don’t have to guess.”

Death is taboo, globally

The problem goes beyond long-term care homes. A striking 93 per cent of Canadian participants in a recent poll think it’s important to communicate their wishes for future care should they become seriously ill, but only 36 per cent have actually done so.

That may seem shocking. But according to the World Health Organization, Canada is actually ahead of most European countries.

Clearly, talking about death and the end of life is still taboo around the world.

Informational resources such as our pamphlets can be a great first step in helping all parties gain clarity on what to be thinking and talking about. But because residents and families tend to protect one another, staff need to take more active roles in supporting such conversations.

Care home staff need training

That means we need to clarify roles and provide the necessary training to support long-term care home staff, especially those who develop strong relationships with residents.

We have an aging population, and thanks to technological advances, more of us are living longer with frailty and chronic conditions. We need to find ways to communicate what’s important to us, so that we receive the care that’s right for us.

I would like to be able to tell you a different story. It begins with a care home resident, Sam, who gets an infection and is not getting better, even with antibiotics.

Sam has been living with multiple chronic conditions for some time and his family knew frequent infections could be a sign that the end of life was near. The family also knew that he wanted to die in the long-term care home and not in a hospital — because they had talked about this when he was healthier and could communicate his desires.

Sam dies, but with dignity and in peace and, most importantly, in keeping with his own wishes.

Complete Article HERE!

End-of-life hospital care in California could soon include cannabis

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Updated 10/24: On October 12th, Governor Newsome unexpectedly vetoed SB 305, citing conflicts between state and federal laws as well as potential loss of federal funding. He did so “begrudgingly,” calling the federal government’s position on cannabis “ludicrous.” 


 

 

 

The awkward legal-ish status of cannabis is something that affects many. And out of those, perhaps terminal patients are the most in need. When someone is painfully dying in a hospital, they are generally pumped full of drugs that often leave them barely conscious, or fully asleep.

Ryan had stage 4 pancreatic cancer that had reached the point where he needed professional care, but his only option to treat the intense pain was morphine, and even fentanyl—which is up to 100 times stronger than already-potent morphine⁠—leaving him barely conscious, or asleep. The last days of his life were being stolen, and he wanted all the coherent time he could gather to spend with his 9-year-old son

So Ryan asked his father, Jim Bartell, to get him off the pharmaceuticals so he could function in some capacity during his last days. Jim located a hospital that would allow cannabis, and Ryan was promptly transferred to it. On the first day that Ryan was allowed cannabis, they had to spray a tincture under his tongue because he couldn’t even swallow.

But by the next morning, he was reportedly alert, talkative, and pain-free. Ryan was able to spend his last two and a half weeks of life chatting on the phone and taking visitors—connecting, laughing, and taking the precious time to say goodbye.

But Jim Bartell’s mission had just begun

Ryan Bartell passed away on April 21, 2018, but Jim wasn’t done with this issue. He drafted a bill that would allow terminally ill patients to use medical cannabis in hospitals.

In an interview with Leafly, he shared that as President of a San Diego firm that handles things like government PR, he’d been prepared for this mission—he’d already reviewed hundreds of government bills over the years.

After three long months of research and another three weeks of drafting, he took SB305 to Senator Ben Hueso at the end of 2018. Sen. Hueso agreed to sponsor it, and Jim and his staff continued to work together near daily until SB305 was submitted in February. Much of the pushback came from the California Hospital Association, who feared that they would lose federal funding as cannabis is still federally classified as a Schedule I drug.

But they worked through the opposition, drafting the bill so if the government were to change position and enforce federal prohibition against cannabis—then that hospital would be suspended from compliance.

And on September 11th, 2019, the California State Legislature unanimously approved their Senate Bill No. 305, which was aptly, and powerfully, titled “Ryan’s Law.” It’s now on its way to California’s pro-cannabis Governor Newsom, who is expected to sign it in the coming weeks. If all goes as predicted, it will come into effect on January 1st, 2020.

This means that starting next year, terminal medical cannabis patients with a prescription will be able to use cannabis in forms other than smoking/vaporization in hospital care. Cannabis will be procured by the patients, not the hospital. Hospitals will not be allowed to interfere with its administration, but will be allowed to help if needed.

Next steps for Ryan’s Law

Jim doesn’t plan to stop there. He says that this issue is affecting people like Ryan, and the people who love them, all over the country—so he’s doing something about it. First steps are to take on the geographically (and politically) close states of Oregon and Washington. And now they’ll only have to amend the bill with state-specific health codes instead of starting from scratch. Hopefully these states align quickly, and others as well.

Medical cannabis may be legal in many places, but patients in need of this medicine still face obstacles in terms of using it when and where they need it. While the chronically ill and those still in the fighting stages of diseases aren’t yet protected, this is an encouraging step in the right direction.

While some other states have on the books that they allow cannabis in hospitals, this will be the very first law that requires allowing it. Finally.

Even with such strict laws in place, a massive library of studies supporting the power of medical cannabis have amassed over the decades. It’s beyond time that medical cannabis became more accessible.

Complete Article HERE!

The Cost Of Dying

Hospice’s Biggest Fans Now Have Second Thoughts

The rapid growth of the hospice industry has exposed the burden of putting the family in charge of the death bed.

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The booming hospice industry is changing what it looks like to die in the U.S. Rather than under the care of doctors and nurses in a hospital, more Americans than not now spend their final days in familiar surroundings, often at home, being cared for by loved ones.

While hospice has been a beautiful experience during a difficult time for many families, a yearlong reporting project by WPLN finds end-of-life support often falls short of what they need.

“Our long-term care system in this country is really using family, unpaid family members. That’s our situation,” says professor Katherine Ornstein, who studies the last year of life at Mount Sinai Hospital in New York. “As we increasingly see that we want to provide home-based care, we’re relying even more on caregivers. And it does take a toll.”

The federal government has found that families often misunderstand what they’re entitled to when they elect hospice. And many still have to pay out of pocket for nursing home services or private caregivers, which Medicare rarely covers — all while the hospice agency is paid nearly $200 a day.

Hospice has catapulted from a sector led by nonprofits and volunteers to one dominated by investor-owned companies — including several based in the Nashville area such as Amedysis and Compassus — with more growth expected.

In the process, hospice has ballooned into a nearly $19 billion industry. It’s now the most profitable service sector in health care, as the industry’s business model relies heavily on unpaid family caregivers.

“This seems like it’s in sync with patient-centered care,” says Ornstein, “but the reality of that situation may be very, very challenging.

“I think we have a responsibility to really think about whether the families can handle this.”

‘A Longer-Term Thing’

The Fortners could be the poster family for hospice of old. On an overcast morning last May, they gathered with dozens of other grieving families at Alive Hospice’s residence in Murfreesboro for the nonprofit agency’s annual butterfly release.

McCoy Fortner, 8, opened a triangular box and a dormant monarch began to twitch.

“You can also whisper to it to tell the person in heaven what you want to say,” he explained.

He held the winged messenger on his forefinger until the black and orange wings perked up and stretched out. He relayed a few words to his father, Jeremy, who died two years ago of cancer.

“Thank you for being my best dad,” he said as the monarch took flight.

McCoy’s mom, Elicia, stood behind her son with tears in her eyes. Her husband called off endless chemotherapy. He was on hospice at home and then moved to a residential hospice facility where he passed away. Between the two, he was on hospice for 10 days.

Elicia Fortner said she just wishes they had stopped curative treatment and switched to hospice sooner.

“I don’t know if I really understood the options,” she said. “I didn’t realize hospice could be a longer-term thing.”

The Hospice Nudge

The average amount of time patients spend on hospice has been creeping up steadily, amid an industry-wide push that has aligned most of the interests in health care. The Affordable Care Act gave hospitals new incentives to reduce the number of deaths that occur in the hospital or shortly after a patient’s stay. Some studies suggest that’s caused an uptick in hospice use. And many doctors have been sold on the idea of prioritizing quality of life in the final days.

More patients are also eligible: Hospice has expanded beyond cancer to any terminal illness.

Very few people now die in a hospice facility. More often, hospice is received at home or, increasingly, in a nursing home.

But some of the biggest end-of-life evangelists are beginning to see unintended consequences of putting families in charge of the death bed.

Jessica Zitter, an emergency physician in Oakland, Calif., wrote a book about needlessly dying in the hospital on ventilators with very little consideration about quality of life. She advocates for prioritizing comfort care, which often means recommending hospice. When a patient has been told they have less than six months to live, Medicare and most private insurance will allow them to sign up for hospice services meant primarily to help them die in peace.

Zitter filmed one documentary called “Extremis.” It showed the impossible end-of-life decisions that have to be made in a hospital.

Then, she decided to make a second documentary, still in production, following a husband who took his wife home on hospice after ending cancer treatment.

Zitter met with Rick Tash and Bambi Fass for the nine weeks she spent in at-home hospice. The storyline didn’t play out as expected.

“It made me realize how naïve I — the doctor of death — was,” Zitter says. “This is this beautiful love story of these two people. Then you hear him say, ‘I didn’t sign up for this.’”

Tash became overwhelmed — from managing Fass’s morphine doses to getting her to the toilet every few hours.

With at-home hospice, everyday caretaking — and even many tasks that would be handled by professionals in a hospital or nursing home — are left to the family.

Medicare requires agencies to provide a few baths and a nurse check-in each week. But government data reveals that, on average, a nurse or aide is there at the house only about half an hour a day.

Zitter sat Tash down at his kitchen table, with his granddaughter on his lap. She encouraged calling in reinforcements.

“Asking for more support from hospice, if you need it, is really important,” she told him.

“Yeah, but what they offered me was a volunteer for two hours, one day a week,” Tash responded.

“That’s it?” Zitter asked.

“That’s what they offered,” Tash said.

Zitter was stunned. She realized Rick was getting all hospice had to provide, and it wasn’t nearly enough.

“The good death isn’t as easy as you might think,” she says. “We’ve got to put some things in place here so we can make it more likely that people can achieve that.”

Complete Article HERE!

Resting in Peace…

Death doula Jane Whitlock on end-of-life care, grief, and the importance of telling our death stories

Jane Whitlock

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When her husband got sick with kidney cancer and died four months later, Jane Whitlock, having had no experience with death or grief, found that the guidance and spiritual care provided by hospice just wasn’t enough. Resolving to find her own purpose while answering for the gaps she saw in end-of-life care, she followed her intuition and became a death doula.

A death doula, or end-of-life doula, is someone trained to provide holistic care to a dying individual. There is no nationally standardized certification program, which means there are multiple training options—a process that involves a set of training classes and documented hours of direct client support, plus whatever specific assessments a particular certification program requires. Death doulas represent a growing movement toward redefining our typical approaches to death.   

A death doula’s role is as nuanced as each individual who occupies that role, and Jane Whitlock sees herself first as a companion. She provides comfort and support to the dying individual and their “tribe”—as she often refers to the circle of family and friends—through a time for which most people may not be spiritually prepared. Through intentional connection, she deciphers how she and the tribe can best serve the dying person. She abides by the slogan, “Death: it’s a collaborative event!”

This Q&A has been edited for clarity and length.

The Growler: Why do you believe death doulas are important?

Jane Whitlock: A doula helps ask the big questions so this process is as spiritually comforting as it can be. Think of your deathbed and how you want to feel—at peace, right? So, how do you get there?

A doula also gives you some sense of what’s coming and can support you through these tough situations that you may not be prepared for. You haven’t been here before and often don’t have any bank of knowledge to draw from.

Cultures have evolved to include how we care for people who are dying and have died, and while some intact cultures can trace their beliefs back very far (to the Buddha, for example), Americans don’t have those deep ties.

Since the Civil War, the standardization of funeral homes, embalming, and the medicalization of end-of-life have removed death from the home. We no longer know how to care for people who are dying, how to have home vigils, how to mark significant transition points (leaving a body for the last time, a body leaving the house).

How can our modern standardized systems shift to accommodate what death doulas have to offer?

It would be amazing if hospitals employed doulas! Wouldn’t it be great if you could transfer someone who has died to a room to clean them up, bring the family in, and have someone guide them through rituals of saying goodbye and nurturing the body?

I think a lot of times this seems like a white lady movement—like, we want to cover everything in crystals and candles and aromatherapy or whatever. I push pack against that because there are so many other ways of experiencing death. This movement needs to be more inclusive, to change a whole bunch; being a death doula is a teeny, tiny door, and there is a lot of growth ahead.

What characteristics make an effective death doula?

You have to be able to empty yourself out, to be hollow and free of judgment, of any preconceived ideas about what should be happening. You have to listen without thinking and really be with someone when they’re suffering without trying to fix it. An effective death doula is someone who is calm, quiet, and vulnerable. It’s really so much about vulnerability.

I volunteer at a hospice and often have to practice that whole “soft belly” thing, to stop before every room and become wide open. Even when someone doesn’t want to see you, you have to think, “It’s not about me.” You just kind of clear your energy, go into the next door. You have to fight being defensive in order to just be vulnerable.

 

What are some ways to go about changing our death culture?

It really starts with your stories. We don’t tell our death stories; we tell our birth stories and our family stories, but we don’t tell our death stories. It would be great to just listen to a bunch of stories about how it happens, maybe know just some weird and messy stuff, too. What was it like? What would you have done differently? What went well? What surprised you?

There’s this guy, Dr. Allan Kellehear, who says our inability to talk about death is a public health epidemic. He refers to the AIDS epidemic and how you couldn’t shut a bathroom stall without a poster on the back teaching about prevention and safety. Wouldn’t it be great if we took that type of vast approach to shifting death culture?

Another maverick in the field, Suzanne O’Brien of Doulagivers, says there should be someone on every block who knows the end-of-life basics so that when somebody in your community is dying, they are supported.

Who do you think is the best at approaching death?

Well, the Buddhists, hands down. They’ve got the saying: “We are of the nature to get old; we are of the nature to suffer; we are of the nature to die.” Imagine if that’s how we started every morning—we wouldn’t be so shocked by death! There are people who think that aging is some kind of radical punishment or who feel entitled to live in a full healthy body forever. That’s just not our nature.

I would say that to prepare for death, you have to get your spiritual house in order, whatever that means to you. Life is finite, super fragile, and you are not entitled to anything! So, spend your time wisely and be grateful.

Complete Article HERE!

Toronto death doula helps take the fear out of dying

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“Everyone dies and that is OK.”

Those six words are something of a mantra for Kayla Moryoussef, a Toronto “death worker” who has spent the last six years immersed in death and dying. As the program manager of the Toronto Home Hospice Association’s “Death Café” initiative, she holds sessions for people to talk about death (more about that later) and, in addition, works to help people experience a “good death.”

What might make a death good? That probably depends on the person, but one of the main things Moryoussef works to get people to let go of is fear.

And she’s not alone. While it’s still a relatively niche corner of the death care industry in Canada, there are an increasing number of people with “death doula” or “end-of-life-worker” practices and, like Moryoussef, most are participants in the “death-positivity” movement.

“It’s not that we should celebrate the fact that people died,” says Moryoussef, who works with Toronto’s Home Hospice Association and has a practice called Good Death (www.gooddeath.ca) through which she runs “Death Café” sessions in Toronto. “But we should accept the fact that people die and, even though it’s not a good thing, it’s an OK thing that’s a part of life. As soon as we recognize that, it becomes less scary.”

In a nutshell, the theory is that we’ve lost touch with death, which used to be more a part of life than it is now. Prior to, say, 100 years ago, people often died at home and, if they lived in small communities, neighbours and family dealt with a lot of pre- and post-mortem issues. As it became more “hands off,” it also became distant, invisible and shrouded in mystery. As a result, we’ve become more afraid of it. Some people use euphemisms, like “passed,” others speak in hushed tones, as though something shameful has happened. At death cafés, people learn to talk about it more openly, in hopes of getting past the fear and awkwardness.

“People get together to talk about dying and death,” says Moryoussef. “They’re not support groups, they’re not grief and bereavement groups, they’re literally just open forum events, although, since we realize that certain populations have different needs, we started to make some population-specific, so we have LGBTQ cafés and, in November, we’re having our first death café for people with chronic illness and chronic pain.”

Death cafés (or “death salons,” as they’re sometimes called) are one of the most successful components of the death positivity movement, says Dr. Katherine Arnup, retired professor at Carleton University and author of “Family Perspectives: Death and Dying in Canada,” a report published by the Vanier Institute of the Family.

“I just looked at the most recent stats, and there have been 9,261 death cafés in 65 countries,” says Arnup, pointing out that this is pretty good given that they only started eight years ago. “I’ve been to a few and it can actually be kind of fun, with a lot of laughter surprisingly. I mean, 65 countries is pretty impressive and there are other ones like “Death over Dinner” and “Death at a Bar,” you know, those kinds of things.”

There’s obviously a demand for a different conversation about death and dying than the one most of us have been having, but public and private sessions aren’t all that death workers offer. Moryoussef has been called upon to join families sitting in vigil and help dying people settle on a “legacy” — usually letters, gifts or memoirs that are to be given to loved ones, post-mortem. This, along with dying at home (when possible), is all part and parcel of the philosophy of the good death. Some death workers even help families who want a home funeral clean and preserve the body.

There are some parallels between this and the big midwifery resurgence (circa 1960-1990s) that saw feminists objecting to a medical system that tended to keep women in the dark and gave them few choices. The modern midwifery movement worked to rectify that by giving women information, encouraging them to be active in making a birth plan and, in some cases, even empowering themselves to choose to deliver at home, instead of the hospital.

So, since birth and death — the only two inevitabilities of life — arguably faced many of the same problems, why didn’t we notice that the death care industry needed some changes, too?

Dr. Arnup says demographics played a big part in the shift in attitudes toward death.

“I don’t like the stuff around the Baby Boomers so much, how you see claims that Boomers changed everything, from the way we eat to the way we die,” says Arnup. “But I think there’s something to be said for the fact that, just because there are so many of us, some have a sense that we can do anything and control things. Certainly some Boomers pushed for medical assistance in dying, which is now the law of the land, and they’re also the people who are supporting hospice.”

Boomers aren’t alone in wanting to avoid the indignities of, say, a protracted death in a hospital, but the sheer number of people in that demographic who hope for pain-free deaths, surrounded by friends and family and, ideally, in their own home, is starting to reshape the industry by supporting alternatives like Moryoussef’s.

And, as she says. It’s still sad — for everyone. It’s not a celebratory moment. But since letting go is a natural part of life, it’s also OK.

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