End-of-Life Conversations Can Bring You and Loved Ones Closer

If the opportunity presents itself, honor the person by listening

By Lisa Fields

Before his mother, Dee Dee, died from emphysema in 2009, Larry Sernovitz spent a lot of time at her bedside, keeping her company. Toward the last few days of Dee Dee’s life, she wasn’t very responsive, so her son didn’t expect to connect with her meaningfully anymore. During one of the final visits, Dee Dee had mostly rested, and the two hadn’t interacted much. So Larry was surprised to get a phone call from his mom the next day.

“She sang, ‘I just called to say I love you,’” says Sernovitz, a rabbi in Cherry Hill, N.J. “I don’t know if I fully realized the power of that moment. She bounced back. She was singing to me over the phone. Within the next day, she was gone.”

Dee Dee had sung to Sernovitz often while he was growing up, but her melodic phone call toward the end of her life was an unexpected surprise.

“I said, ‘Thank you so much. I love you, too,’” Sernovitz says. “I didn’t fully realize what was happening: She was beginning to say goodbye. She just wanted to let me know, even though I didn’t realize it at the time, that no matter where she goes, she’ll always love me.”

At the end of life, many people choose to tie up loose ends, to make sure nothing critically important is left unsaid to the people who matter to them most. They may feel it will help them die peacefully, knowing that no loved ones will have any doubts about their feelings.

“Those are opportunities for people to take stock and say, ‘I want to be more intentional about how I want to relate to people in my life,’” says Dr. Jessica Zitter, author of Extreme Measures: Finding a Better Path to the End of Life and an attending physician in critical-care and palliative care medicine at Highland Hospital in Oakland, Calif. “Death should really be seen as the last opportunity that you have to make amends and clean things up before you’re in the next world, wherever that might be.”

A New Dynamic

The end-of-life period can spark honest, soul-baring conversations that let people grow together emotionally while reminiscing, apologizing, forgiving, thanking or recognizing the efforts of their most cherished relatives and friends. Such talks can be especially meaningful if they’re initiated by someone who doesn’t usually talk about his or her feelings.

“These conversations are refreshing and calming to the souls of all who engage,” says Hattie Bryant, author of I’ll Have It My Way: Taking Control of End-of-Life Decisions. “If the dying person says words that the loved ones around are not used to hearing, it can open up a new and deeper path.”

Recognize the Moment

Sometimes palliative care physicians will help their patients with life-threatening conditions facilitate these conversations, steering them in directions that can bridge differences, highlight commonalities and allow people to grow closer. It’s ideal to have these conversations during the final weeks or months of life rather than waiting until the last possible moment.

“We always think we are going to have more time than we do,” says Zitter, who appeared in the Academy Award-nominated short documentary Extremis, about end-of-life decisions and conversations. “I see so many patients who get caught off-guard by those final days, to the point where something happens, they deteriorate; they can’t speak anymore; they aren’t alert. You don’t want to wait until those final days because it may be too late by then.”

The Start of an End-of-Life Discussion

When someone at the end of life opens up about his or her feelings, it can initiate an emotional conversation, with everyone sharing perspectives to gain a greater understanding of each other’s feelings. And if one person says “I love you,” the other person may return the sentiment, which brings greater depth to the relationship. The further the talks go, the greater the intimacy of the relationship may increase.

“I’ve seen it go any number of ways,” Zitter says. “A dialogue. One-sided. Over the phone — for people who aren’t going to have the chance to see each other again.”

Staying on Topic

Some terminally-ill patients want to have emotional conversations but can’t get the words out because their relatives cut them off.

“A lot of people say, ‘Every time I want to talk to my kids, they put their fingers in their ears and say, You’re not going to die’,” Zitter says. “When someone is coming to you with that feeling, you want to open up and listen and support, not deny the sentiments that are bringing them to you.”

It takes a certain amount of bravery to initiate these conversations. Not everyone is able to bare a soul this way — especially if someone is in denial about his or her diagnosis or prognosis. So honor your loved one by listening.

“The problem is: So many in America today don’t have these discussions, as they are too busy thinking they are going to be cured,” Bryant says. “Our goal should be not to die fighting a disease but to die loving people.”

Nearly 10 years after his mother’s death, Sernovitz is still awed by the meaningful conversation he had with his mom when she sang about her feelings.

“It was such a powerful moment,” Sernovitz says. “We have to really pay attention to what people say because we never know what messages they’re trying to send us.”

Complete Article HERE!

Herb & Hospice:

How Medical Marijuana Is Helping End-Of-Life Care

by Emily Berkey

While terminal patients are finding that medical cannabis offers relief with fewer side effects, health professionals must navigate legal challenges to offer aid.

While medical and recreational cannabis are currently legal in 33 U.S. states and the nation’s capital, it still remains illegal at the federal level, fostering fears of punishment for professionals within the medical establishment who may want to prescribe cannabis as a medication. Cannabis’ federal illegality not only deters discussions between doctors and patients seeking relief for various ailments, but it also greatly limits scientific research that could help assist medical experts seeking to determine cannabis’ efficacy as a treatment for certain disorders. Hospice patients and those receiving end-of-life care — a group who could arguably greatly benefit from medicinal cannabis use — are often times uninformed about the plant’s therapeutic properties, because their doctors, nurses, and other medical staffers are often hesitant to speak with patients about the advantages and risks of consuming cannabis.

“As an administrator, I can tell you it’s not that we’re not allowed to talk about the use of cannabis, but there’s a fear that the federal funding [Medicare and Social Security] could be pulled, so we just don’t know what we can and can’t talk about. But as a nurse, I feel it’s our duty to advocate for any healing measure for the patient,” says Lance Pool, the main Registered Nurse at Stoneybrook Assisted Living in Corvallis, Oregon. “I’d fear losing my job if I spoke about it… many places I’ve worked would terminate you on the spot if you spoke about cannabis use.”

Lance and Cydney Pool of Treewise Holistic Nursing Services

Armed with a desire to create change in their fields, Lance and his wife Cydney, who is a death doula (someone who assists individuals and their families in the dying process by offering physical, mental, and emotional support, similar to a birth doula), created Treewise Holistic Nursing Services, a company designed to meet the needs of elderly patients and those seeking end-of-life care with the help of cannabis as medicine. “Some of my friends who are administrators in nursing homes and assisted living [facilities] said what they really needed was an outside consultant who they could refer people who have questions about cannabis to… so that’s how Treewise got started,” says Pool. “There are a lot of elderly folks who have questions, and we’re there to answer them as an outside source.”

Treewise offers private consultation to senior citizens who are curious about or need help using cannabis for various ailments. “State regulation requires that the facilities provide for the ‘holistic’ needs of their residents… There are several ways that facilities can [do that with cannabis medications]: they can assign a “caregiver” to visit the dispensary for their residents, [or] the dispensary can “deliver” to the facility. We are licensed as a patient and [a] grower, so we can provide any of these services,” explains Pool. Although they do not sell cannabis to patients, they assist in administering it, advising, and coordinating care and communication between patients and their caregivers. “We are new to Oregon, so we are building a client base and growing our own medicine,” says Pool. “It is nice to be in a legal state where our professional licenses are relatively safe. Federal prohibition has never held us back — we are doing exactly what we want to do and always have, but federal prohibition is holding our elders back from the ‘holistic’ benefits of nature’s medicine.”

Jennifer Rosenthal Iverson, an attorney specializing in medical marijuana in Monterey, California, explains why assisted living facilities may be apprehensive to get on board with medical marijuana despite it being legal at the state level since 1996: “In California, any entity receiving federal funding is concerned because [cannabis] it’s still a Schedule I narcotic. The fear or notion that the federal government will come after an assisted living place is very far off, but if someone is receiving federal subsidies, it would be a concern.” Many hospice companies run into the same dilemmas as nursing facilities — patients who are anxious, in pain, and lacking an appetite who could potentially benefit from cannabis as medicine — and an inability to speak about cannabis for fear of reprimand or loss of federal Medicare and Social Security funding. 

T Ngu, a hospice volunteer

T Ngu, the owner of Project Object in Portland, Oregon, has been volunteering for a hospice organization for five years. “One of the families was very involved in the medication process. They really wanted to know what the medication was doing, how it was affecting them, and what the side effects are,” says T.  “It was very apparent that many of the medications made [the patient] feel anxious, have hallucinations, or made them feel worse, so they needed other medications to help with those side effects. Then they started giving their loved one cannabis-based products. They tried tinctures and she didn’t like the taste, so they started giving her marijuana chocolates. It was really apparent that when she had the chocolates, she was happier, would laugh, make jokes, was a little more present, and had less pain. When she wasn’t on them, she would scream and be more anxious and uneasy.” T is aware of the benefits of cannabis-based products, but doesn’t speak about the medication with hospice patients and their families because it’s against the hospice company’s policy. 

With staffers at assisted living, nursing home, and hospice facilities uneasy about discussing medicinal cannabis use, families with loved ones receiving end of life care are left to their own devices — often times led by a younger member of their family who discovered the benefits of such products on their own.

James Lumis, a Portland resident whose mother recently passed away, was reminded of the possible benefits of giving his mother cannabis during her time in hospice by his nephew. “He had some [edibles, which he’d made himself with recreational marijuana], so I asked my mom if she was open to trying it so she could eat, and she was,” explained Lumis. Not only did the cannabis products help his mother’s appetite, but they seemed to relieve painful constipation caused by her prescription painkillers, while easing her anxiety and diminishing her pain. Due to a lack of research and resources to consult regarding proper dosages and strain types, James tested the products on himself before giving them to his mother. “I didn’t give her anything until I tried it. I was her guinea pig,” he adds.

James Lumis of Portland, Oregon

“If cannabis was federally legal, I feel like I would have had more information when I needed it,” says Lumis. Cannabis’ federal illegality not only deters care providers from prescribing cannabis-based products, but it also results in a lack of reliable research, as many U.S. institutions have been dissuaded by the plant’s controlled legal status. With Canada’s newly adopted cannabis policies, physicians have expressed excitement about the scientific findings expected to come from a country now free of many previous restrictions on marijuana studies

Dr. Allan Frankel, a physician based in Santa Monica, California, recognizes the lack of resources surrounding cannabis dosing recommendations for hospice patients and those in need of end-of-life care. Dr. Frankel, who says he cured himself of a debilitating viral chest infection by using cannabis, offers in-office and phone consultations for patients who are seeking more information on medicinal marijuana — a service that James Lumis and his mother likely could have benefited from. “I think the odds of the federal government stepping in on an 85-year-old lady, who’s on death’s door getting some relief in a legal state from cannabis, are slim,” says Dr. Frankel.  

As far as potential consequences of doctors in California prescribing medical cannabis, attorney Iverson says that if the federal government wanted to get involved, a revocation of medical license would be the worst case scenario; “But that decision is really on a state by state basis… I haven’t heard of any cases in California where there’s been reprimand for this… But then, there aren’t many doctors that will do it.“

Dale Gieringer, the director of California’s branch of NORML (the National Organization for the Reform of Marijuana Laws), has been on the front lines of cannabis legal reform long before the Golden State’s passage of Proposition 215 in 1996 — the nation’s first medical marijuana law. Advocates battling HIV/AIDS (then an often terminal disease), along with senior citizens suffering from cancer, were instrumental in building support for California’s first medical cannabis program. However Gieringer explains to MERRY JANE that originally, “Prop 215 was in no way intended to be limited to terminal illnesses. Our opponents tried to paint it that way so as to limit its application, but we were very definitive about it being for any disorder for which marijuana provides relief.” 

He foresees marijuana being legalized on a federal level in the near future: “Most of the [federal] legislation now is all-out legalization of some sort. I think the bill that has the best chance of approval is a bill called the STATES Act, which basically says that anything that’s legal under state marijuana laws will be considered legal under federal law.” Gieringer believes that after the presidential election in 2020, there’s a good chance the U.S. may see federal reform. “I’ve never been one to predict that legalization was just around the corner, but I can see it now… even the head of the [U.S. Food and Drug Administration], Scott Gottlieb, said that federal reform looks inevitable.”

Until then, medical professionals and caregivers for patients approaching the end of their lives will have to continue using their best judgment on how to navigate the remaining legal challenges around medicinal marijuana. Echoing nurse Lance Pool’s belief of doing what’s best for the patient, Dr. Frankel says, “We have to all be a little braver just to do the right thing. You decide what’s best for that patient in that moment, and you do it. If you do anything short of that, you’re not practicing according to [medical] code.”

Complete Article HERE!

Why we need end-of-life rituals

By

When someone dies, it is common to mark their death with funeral rituals, but the idea of using a ritual to mark someone as they near the end of their life is less common. Yet rituals could provide succour to all involved at this difficult time.

Rituals help people to mark and make sense of the big life changes that we all go through, such as births, marriages and deaths. Rituals work when the people involved understand what is going on. For example, for a non-religious parent, it may make sense to have a secular baby-naming ceremony, rather than a religious christening or baptism to welcome their baby to the community.

Ritual is often thought of as actions that express shared meanings, such as lighting candles during a funeral ceremony. They could also be words or music, such as reading a poem or playing a favourite song. Rituals can help us deal with change, partly because of the shared understandings we have of the actions involved, but also because those ritual actions tend to be familiar to us. Using familiar words and actions in an unfamiliar situation can help us find our way through it.

We are used to thinking of funerals as being for the living. The funeral can be an opportunity for bereaved people to mourn, to share stories about the person who died and to come together with others who are grieving. Funeral ritual can help people to feel more in control when faced with a terrible loss.

The period of time when someone is dying, however, is viewed differently. The focus is on the dying person and on making sure that they receive the care they need. But ensuring that the person who is coming to the end of their life receives the best care does not mean that those who love them need to ignore their own welfare.

Gathering family and friends around the bed of a dying person is called keeping vigil. It is a common practice in many parts of the world. Traditional Xhosa healers in South Africa, for example, describe death as a collective matter. It is important for the family to be at the bedside to ensure a good death. Family presence allows the dying person to be at peace and to let their relatives know what they want for the family’s future. This doesn’t just benefit the dying person, but also helps family members, offering a chance to mend relationships.

Being with the dying person, whether sitting quietly or chatting, gives people the chance to say goodbye. It is also an opportunity to share the experience with other family members or friends, in much the same way that mourning is shared at a funeral. For some dying people and their families, music is used as a shared experience in the final hours.

Memory box

Memory boxes are another form of ritual that is becoming more common. Women in Uganda recently began the practice of creating a memory book or a memory box in order to share their life story and create a sense of belonging for their children after they had died.

A memory box can also be assembled by the family or friends of the dying person and doesn’t have to be intended for children. Such a box can hold mementos, photos, written notes, a CD, copied poems; anything, in fact, that can act as a reminder of the person.

Mementos of life’s journey.

Thinking about and discussing how to manage the end of life may be useful for both the dying person and their family and friends. The unknown is difficult to deal with so understanding that they are taking part in a ritual of accompaniment and leave-taking can help a family make sense of and mark the change that they are going through.

Death is about the biggest change any person will encounter, whether it is their own death or that of someone close to them. Using rituals that express shared meanings to help them feel more in control at a time of loss can only be a good thing.

Complete Article HERE!

At a Death Cafe, Tea and Couscous Make Mortality Easier to Swallow

Let’s talk about death, baby.

Attendees gather around a table to talk death at Tagine.

by Abbey Perreault

On a brisk November night, Tagine, a Moroccan restaurant tucked away on a quiet side street near Times Square, is alive with conversation. Nearly 20 people pack in around two tables cluttered with heaping, communal plates of steaming couscous, chickpeas, and yellow lentils. People exchange stories, laughs, and soft wedges of bread dipped in bright green chermoula. Multi-colored disco lights dance across the walls, and the swell of conversation rises and falls against a soft pulse of music and noise from the bar. A young, blonde woman walks through the door and surveys the crowd.

“Is this the singles’ event?” she asks, pointing to the tables. I shake my head.

“Nope,” I tell her. “This is the Death Cafe.” She thanks me, brow furrowed, and heads to the back of the restaurant.

While it may seem strange for conversations about death to be conflated with courting, our group could easily be mistaken for speed daters. Relatively young, open, and inquisitive, my dining companions exude a curious energy, solid appetite, and hunger for good conversation. But, unlike the majority of small talk with strangers, dialogue here is all about death—from philosophical musings about post-death life to the physiological components of dying.

“When the body is dying there are lots of … secretions,” says Tanya, a nurse who works in the intensive care unit at a local hospital. “We sometimes give patients medicine to try to dry them out and stop them from gurgling.”

“Is that what they call the death rattle?” someone asks from across the table.

Those noises, we learn, arise once the dying person can no longer swallow or clear fluid from the throat, and often indicates that they’re within a day of passing. But as disturbing as it may sound, the death rattle typically doesn’t cause the individual pain or discomfort. We talk about the sounds of death, and how to attempt to interpret them, sipping mint tea from delicate, warm glasses. “Having to take care of somebody who’s dying, and their family … it can be a lot. I want to talk about it with my husband, but I don’t want to fatigue him with it,” says Tanya. “But I think about it all the time.” It can be months, even years, she says, before she stops thinking about a patient who has passed away under her watch.

But not all Death Cafe diners come from professions that deal with death. According to Nancy Gershman, the facilitator of our cafe, attendees come from all walks of life, from college students with a philosophical curiosity about death to those who have witnessed something supernatural. Some people want to understand death better in order to prepare for their own. “I had this one 80-year-old who kept asking these roundabout questions,” recounts Gershman. “It turned out she wanted to know what dying was like.”

Hot tea helps the conversation flow.

Gershman, who has been facilitating this Death Cafe for the past three years, says there’s no agenda. Meetings often meander thematically, driven by the questions and stories people bring to the table. But she’s quick to remind me that, while the Death Cafe is a safe space to talk about loss, it’s not a support group. “When you lose someone, there’s a particular period right after it happens where you keep repeating, like a groove on a record,” she says. “We’re not here to stay stuck in that groove.”

Instead, Gershman says, it’s a place to speak openly and inquisitively about the end of life. Formally established in 2011, the original Death Cafe arose as the brainchild of the late founder, Jon Underwood, in his East London home. Inspired by Swiss sociologist Bernard Crettaz’s café mortel, he set out to create an intentional space dedicated to talking death in order help people “make the most of their (finite) lives.”

Strangers began gathering in Underwood’s London basement to sip tea, munch on cake, and casually discuss death and dying. Before dying unexpectedly from undiagnosed leukemia in 2017, Underwood and his mother created accessible guidelines and protocols so anyone could create Death Cafes within their own communities. Since then, more than 7,300 cafes have cropped up in over 60 countries—an indication that they address a deep-seated desire to understand death, one that’s been ignored, if not avoided.

After remaining relatively tight-lipped on the topic for centuries, those in the U.S. are more willingly peeking into the abyss—a cultural moment that’s been dubbed the “positive death movement.” From the growing demand for end of life doulas to the creation of apps that send daily reminders that you’re going to die, it’s apparent that more people are interested in confronting death.

“There’s a growing recognition that the way we’ve outsourced death to the medical profession and to funeral directors hasn’t done us any favors,” Underwood told the New York Times in 2013. By avoiding the topic until it happens, we’re left with all sorts of strange feelings about this universal life event. And yet, many of us prefer to keep it at a distance.
Part of this aversion, Gershman suggests, is that talking about it reminds us that it’s real. It shakes the comfortable illusions many of us cling to—that our bodies and brains are ours to control and keep. Sitting around the table, talking about how to financially plan for our funerals (to keep our partners and families from going into debt) can feel alien, even morbid, at first. But, through sips of mint tea, mouthfuls of warm lentils, and a few laughs, I’m reminded that it’s as necessary as making a financial plan before any big life event, such as going to college or getting married.

The strangeness of talking about death, Gershman says, goes beyond the mere fact that it’s been a longtime taboo topic in some cultures. There’s a lot of subject matter that’s taboo, she says, but death is different—largely because it’s inevitable. She compares it to the sex-positive movement in the U.S., where much of the silence surrounding sexuality has been stripped away to increase transparency and dismantle stigma. “People still have a choice when they’re talking about sex. You can either have sex zero times … or many times. But with death, you don’t have a choice. It’s going to happen, and it’s not going to be in your control.”

Nancy Gershman and a cafe attendee.

While making death less taboo will help us understand it and plan for it, it can’t help us prevent it. So planning for it is both frightening and necessary. But by ensuring tea and food are present, hosts of the cafes are able to make discussions of dying a little less scary. “There’s a superstition that if you talk about death, you invite it closer,” said Mr. Underwood. “But the consumption of food is a life-sustaining process. Cake normalizes things.”

My tablemates seem to agree that eating makes engaging with death easier. Tanya mentions that the pediatric unit has a giant bowl filled with candy, and it’s intended for the staff, not the patients. Digesting and processing death might be easier when accompanied by something sweet, something that nourishes us, something we understand to be routine. Like death, eating is something all living bodies simply have to do.

As the night progresses, one attendee whose husband passed away a few years ago tells me that, when she lost him, she lost her appetite, too. But in the past few years, her love for food, particularly dark chocolate, has returned forcefully. “Now, I eat it and I can’t stop,” she chuckles. She reaches into her purse, shuffling around a bit before pulling out three wrapped Hershey’s Dark Chocolate with Almonds nuggets, and hands one to each of us, smiling.

Laughter is common at the Death Cafe.

Even after years of facilitating Death Cafes, Gershman finds herself surprised by the feverish interest the cafes continue to garner. Month after month, newbies and returners come to talk death with strangers. A big part of the appeal, she ventures, is that death is great fodder for in-person conversation. “This is a subject that people can stay on, as opposed to babysitters and real estate,” says Gershman. “Death is such a rich topic that you could approach it in a million different ways and never be bored.”

Back at Tagine, conversation shifts from the life and death lessons learned from watching Golden Girls to the weirdness of grieving on social media. In a group of complete strangers, no one looks awkward or distracted, and no one is fiddling with a phone. “I really think that people are starved for interesting conversation at dinner,” laughs Gershman.

As I gulp down my piece of chocolate, another swell of laughter erupts from the table to my left. In comparison, the singles’ event in the back seems relatively lifeless. Gershman tells me that what I’ve seen and felt tonight is no anomaly.

“One of the waiters told me, ‘Whenever your group comes in, there’s always such great energy.’” she says. When she told him that this was a Death Cafe, a group focused on death and dying, he thought he had misheard her. “I think it’s because there’s a tremendous sense of relief. When you have relief, there’s more laughter.”

Complete Article HERE!

Griefcast: life-affirming conversations about death

Podcasts: Cariad Lloyd interviews celebs about losing a loved one. It’s far from a downer

Griefcast features interviews with such celebrities as Aisling Bea, Adam Buxton and Ana Matronic

By Sarah Griffin

A few weeks ago, I covered a podcast called Death in the Afternoon, hosted by funeral directors and experts in the business and cultural history of dying and bereavement. Griefcast, hosted by comic Cariad Lloyd, is a far more intimate examination of grief and loss. Lloyd interviews a person – usually a fellow comedian – about a person close to them who has died. She lost her father when she was 15, which is the central thesis of this podcast: it’s a project about normalising conversations around death. This year, it won in three major categories at the British Podcast Awards and it’s very clear why.

I had been tiptoeing around this podcast for a while, aware of Lloyd as a comedian and gifted improviser, but had been unsettled at the idea of listening to two people dig into a conversation about death in such a personal capacity. Podcasts are already a very intimate medium, and this kind of intimate conversation seemed a long way from the peripheral. However, I am so glad I took the leap – Griefcast has made its way swiftly into my top podcasts of the year. I haven’t been able to stop listening.

Philosophical

This doesn’t come from a voyeurism, necessarily, which may seem hard to believe given the fact that each episode is an hour-ish long interview about loss. Rather, there is something hugely philosophical about each conversation, some wisdom imparted about the horror – and mundanity – of death. Every subject handles it differently, and Lloyd conducts the interviews with huge grace. She is the other person in the conversation, for sure, and acts as a very powerful conduit for conversations that cannot be absolutely easy for the subject, no matter how much levity they conduct themselves with.

Cariad Lloyd: conducts the interviews with huge grace.

The episodes I started with were interviews with Aisling Bea, Adam Buxton and Ana Matronic, all of whom had lost their fathers. Buxton is serene and gentle in his discussions of losing his father – this interview was given only months after his passing. Ana Matronic is a powerful storyteller; her father died of Aids when she was 15, and her episode is a portrait of the late 1980s in America, but also about how stigma operates.

My recommendation as a starting point is Aisling Bea’s episode, which is raw and angry and extremely real. I was floored by the integrity and honesty Bea brought to the interview regarding her father’s death – and her admittance that some days she just didn’t want to talk about it, but she was going to talk about it anyway.

Fascinating

Not only are the stories that the interview subjects dispense important, but the manner in which they dispense them is fascinating too. I cannot stress, either, how none of the episodes I have listened to so far have been downers, or left me feeling distressed. Certainly they are emotional listens at times, but there is an ease to the atmosphere Lloyd creates and facilitates here – which in many regards is a deeply courageous thing to do, as a person who has suffered a loss. She offers hers simply and honestly at the beginning of every episode – her dad died when she was 15 – and sets the tone that this next hour is a place for big, big chats.

I wholly recommend this as a listen, whether or not you have experienced the death of someone close to you. It is one of those rare pieces that, without ego or self-congratulation, examines a vital component of the human condition.  

Complete Article HERE!

‘I was widowed at 23, young people need to talk about death’

Amy Molloy and husband, Eoghan

By Amy Molloy

‘They say you’ve got three months to live.” These were the words I spoke to my then-fiancé when I was 23 years old after learning that his cancer – malignant melanoma that spread to his liver, lungs, pancreas and brain – was likely to be fatal.

At the time, my only experience of “the end” was watching my parents disappear into a room where my grandparents were lying, and of seeing an empty rabbit hut at the end of our garden after the loss of a pet.

When I was 17 years old my father was paralysed from Hodgkins Lymphoma but, after a stem cell transplant, he defeated the odds and made a miraculous recovery. So, I had faith in the power of modern medicine over mortality.

However, not this time.

I was practically still a child when a doctor ushered me into a private room, whilst my soon-to-be husband, Eoghan, was in a chemotherapy session, and revealed his prognosis. I asked if I could be the one to tell him, and they readily agreed.

Perhaps, even doctors will do anything to avoid saying the T-word. Terminal.

In the next three months, I had a crash course in end-of-life conversation: the jargon, the euphemisms and the social awkwardness.

I froze with fear when I walked into the chemo ward and heard another patient ask my partner, “Have you ever thought about euthanasia?” But, in a way, that was better than the wall of silence.

After my husband died three weeks after our wedding day, even my closest friends evaporated or became stiff in my company. In the next few months, as I rebelled against my grief – drinking too much and becoming promiscuous – nobody dared challenge me or raise the topics I ached to discuss.

What on earth are you doing?

Do you really think this is helping you?

How does it feel to marry a man who is dying?

…Do you want to die too?

Do you know what to say when a friend’s loved one dies? Have you thought about the day your own parent, partner or best friend may no longer be visible? How would you discuss it, in a way that would be supportive, constructive, and even light-hearted?

If you don’t know the answer, you’re not alone.

A new study from the Royal College of Physicians in the UK has urged medical professionals to improve their bedside manner when it comes to discussing death, after identifying that “timely, honest conversations” about patients’ futures are not happening. However it’s not only doctors who need to become more comfortable with these conversations.

It’s been suggested that millennials are the generation most fearful of death, unlike our grandparents, raised through world wars, who learnt that life can be short. As medicine advances and life expectancy increases, we prefer to think of death as our “future self’s problem”.

But is postponing the inevitable increasing our terror of it?

As psychologists report a rise in young people presenting with anxiety linked to death, it’s time for honest, open, educational conversations about loss of life, and how it can look. Its not enough to be aware of Facebook’s ‘death policy’, warn experts.

“Death is still a certainty even if people are living longer,” says clinical psychologist Renee Mill from Sydney’s Anxiety Solutions CBT.

“When treating anxiety, exposure is what works and avoidance increases the problem. Talking about death or visiting a dying person will decrease your fear of death and make it easier to accept that it is a part of life. Every funeral we attend, no matter how hard, actually helps to reduce anxiety in this way too.”

And, it’s never too early to think about the end. Planning in life is important,” says Mill. “We plan our careers, we save, we want to buy property – end-of-life is another part we need to plan. It means we get our wishes fulfilled and gives guidance to our loved ones who otherwise have to pick up the pieces.”

In a good way, change is happening. Since 2017, the multimedia project We’re All Going to Die has encouraged people to embrace their immortality and use it to empower their lives, through educational films and festivals.

The award-winning podcast, GriefCast, hosted by comedian Cariad Lloyd whose father died when she was a teenager, sees entertainers speak with startling honesty – and surprising humour – about death, from the logistics of palliative care and funeral plans to the long-term effects of bereavement.

When we can talk openly about death, we may also increase our chances of reducing suicides. To help people to help each other, Lifeline offer an online course in QPR – the equivalent of CPR for people experiencing a suicidal crisis.

As part of the training – which only takes an hour and costs $10 – people are urged not to tiptoe around the conversations. Instead, be direct: “Do you feel like you want to die?”

In our social circles, we need to discuss worst-case-scenarios. Do you have a will? Do you have death insurance? Are you an organ donor? As an Australian immigrant living 16,000 kilometres from my parents, I always have enough money in my bank account for an emergency flight home. Because, nobody lives forever.

It’s confronting but it’s necessary

During my book tour, I cried on stage for the first time whilst discussing my journey from a 23-year-old widow to a 34-year-old wife and mother of two. Because, for the first time in a decade, I have reached a place where I can talk about my experience of death – and really be heard.

I shared the reason I light a candle in my bedroom every evening and say a prayer: help me to act from a place of love, not fear.

“If my dad’s cancer comes back, on that day I will light that candle,” I said, “If my husband, who is here with my newborn, dies and I am widowed again then I will light that candle to remind myself to act from a place of love.”

We need to talk about death to be active participants in the full spectrum of life: so we can decide who to be when a doctor pulls us into a private room, when we answer the phone to bad news, when we say goodbye for the last time.

We are so scared of death, we don’t discuss what an honour it is to watch someone die; to be present – really present – when someone takes their last breath, to lean in and breathe them in, to put your head on their chest as their heart stops beating and kiss their skin as it transforms.

I hope you all have that experience one day.

We are not meant to say that, but we should.

Complete Article HERE!

Death doulas can fill care gaps at the end of life

Palliative care nurses, social workers and people from the funeral industry are among those who work as death doulas.

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With continual advances in modern medicine, we’re enjoying longer lives. As the population ages, and particularly as many people are living longer with cancers and chronic diseases, end-of-life care is adapting and changing.

People who are approaching the end of their lives will usually spend some or most of their time at home, requiring care and support to do so. Family members might not always be available to provide this care. When they are, the process can be rewarding, but it can also be challenging and complex, often leading to a severe emotional burden for the carer.

Gaps in our health and social care systems are starting to be filled by death doulas. But beyond providing practical support, families are increasingly seeking the services of death doulas to help navigate the experience of dying. Those nearing the end of their lives, too, may bring in a death doula to ensure they can die the way they want to.

We urgently need a conversation about death doulas and new models of care at the end of life. We are continuing to build an evidence base through research with the death doula community and via consultation with the health services that interface with death doulas.

Defining the death doula

We’ve seen a similar concept in midwifery, where birth doulas have long been providing social, emotional and practical support to help women through the process of childbirth. This has been shown to have positive outcomes for mothers and their babies.

Like birth doulas, death doulas’ roles and functions are non-medical; these can include advocating, supporting (spiritually and sometimes physically), guiding, and providing emotional support to the person and their family, mainly in the home.

We undertook a systematic review of the literature to find available evidence about the death doula role. We found little formal academic literature describing the role, their training, or contribution to individuals, families and the health system.

But what we do know is that each death doula enacts the role differently. They might spend time with the dying person, offering emotional and spiritual support, and sometimes providing physical care. They might support the family carers in the work they are doing. Some death doulas are only present in the last days of life, offering “vigiling” – sitting with the dying person so they are not alone.

Some doulas offer after-death rituals such as helping families prepare the body or keeping the deceased at home.

A death doula can provide additional support to family members acting as caregivers at the end of life.

Some death doulas are paid by families who engage their services. Families have often found their chosen doula online or through word-of-mouth. Other death doulas work voluntarily, in a similar way to a hospice volunteer. But, because there are no formal structures or registers, we don’t know how many death doulas there are.

In Australia and elsewhere, palliative care nurses, social workers and those from the funeral industry work as death doulas. This seems to be a natural progression, but it’s a grey area: doulas are providing care, but are not registered or supervised.

There is little formal assessment to guide patient and family choice or to inform end-of-life care provided by professionals.

How can doula care be formalised?

Providing care in homes can be informal. It may be provided by families, friends, or community groups. Care can also be formally negotiated and provided by health services, aged care providers or private agencies.

It’s necessary to understand the implications of the death doula role. For example, they could become part of formal care arrangements such as home care packages or via private health insurance funding.

We also need to look at how these new roles are authorised to represent the dying person, as they are neither a family member nor a qualified health professional. It’s also important that they are appropriately trained and insured (if providing paid services).

There are personal, social and cost advantages in enabling care in the home for a dying person. For families, being able to support the person in a familiar environment can be a powerful motivator to engage a death doula to fill the gaps in care provision.

For the health system, care in the home is seen as positive. It can avoid unnecessary hospital use and help spread the costs of caring.

For the dying person who may prefer to die at home, it is a way of achieving this. Importantly, death doulas can improve the dying person’s ability to control their own care.

The death doula role may well incorporate some of the direct care provided by families and help them to navigate the complex needs and planning required at the end of life. If so, death doulas could represent an important opportunity to improve dying outcomes.

We need to ensure our community is informed, health service provision crosses both hospitals and homes, and that those providing care – regardless of setting – have skills and knowledge appropriate to their role.

Complete Article HERE!