At Death’s Door, Shedding Light On How To Live

By Judith Graham

Nothing so alters a person as learning you have a terminal illness.

Ronni Bennett, who writes a popular blog about aging, discovered that recently when she heard that cancer had metastasized to her lungs and her peritoneum (a membrane that lines the cavity of the abdomen).

There is no cure for your condition, Bennett was told by doctors, who estimated she might have six to eight months of good health before symptoms began to appear.

Right then and there, this 77-year-old resolved to start doing things differently — something many people might be inclined to do in a similar situation.

No more extended exercise routines every morning, a try-to-stay-healthy activity that Bennett had forced herself to adopt but disliked intensely.

No more watching her diet, which had allowed her to shed 40 pounds several years ago and keep the weight off, with considerable effort.

No more worrying about whether memory lapses were normal or an early sign of dementia — an irrelevant issue now.

No more pretending that the cliche “we’re all terminal” (since death awaits all of us) is especially insightful. This abstraction has nothing to do with the reality of knowing, in your gut, that your own death is imminent, Bennett realized.

“It colors everything,” she told me in a long and wide-ranging conversation recently. “I’ve always lived tentatively, but I’m not anymore because the worst has happened — I’ve been told I’m going to die.”

No more listening to medical advice from friends and acquaintances, however well-intentioned. Bennett has complete trust in her medical team at Oregon Health & Science University, which has treated her since diagnosing pancreatic cancer last year. She’s done with responding politely to people who think they know better, she said.

And no more worrying, even for a minute, what anyone thinks of her. As Bennett wrote in a recent blog post, “All kinds of things . . . fall away at just about the exact moment the doctor says, ‘There is no treatment.’ ”

Four or five times a day, a wave of crushing fear washes through her, Bennett told me. She breathes deeply and lets it pass. And no, psychotherapy isn’t something she wants to consider.

Instead, she’ll feel whatever it is she needs to feel — and learn from it. This is how she wants to approach death, Bennett said: alert, aware, lucid. “Dying is the last great adventure we have — the last bit of life — and I want to experience it as it happens,” she said.

Writing is, for Bennett, a necessity, the thing she wants to do more than anything during this last stage of her life. For decades, it’s been her way of understanding the world — and herself.

In a notebook, Bennett has been jotting down thoughts and feelings as they come to her. Some she already has shared in a series of blog posts about her illness. Some she’s saving for the future.

There are questions she hasn’t figured out how to answer yet.

“Can I still watch trashy TV shows?”

“How do I choose what books to read, given that my time is finite?

“What do I think about rationale suicide?” (Physician-assisted death is an option in Oregon, where Bennett lives.)

Along with her “I’m done with that” list, Bennett has a list of what she wants to embrace:

Ice cream and cheese, her favorite foods. Walks in the park near her home. Get-togethers with her public affairs discussion group. A romp with kittens or puppies licking her and making her laugh. A sense of normalcy, for as long as possible. “What I want is my life, very close to what it is,” she explained. And deep conversations with friends. “What has been most helpful and touched me most are the friends who are willing to let me talk about this,” she said.

On her blog, she has invited readers to “ask any questions at all” and made it clear she welcomes frank communication.

“I’m new to this — this dying thing — and there’s no instruction book. I’m kind of fascinated by what you do with yourself during this period, and questions help me figure out what I think,” she told me.

Recently, a reader asked Bennett if she was angry about her cancer. No, Bennett answered. “Early on, I read about some cancer patients who get hung up on ‘why me?’ My response was ‘why not me?’ Most of my family died of cancer and, 40 percent of all Americans will have some form of cancer during their lives.”

Dozens of readers have responded with shock, sadness and gratitude for Bennett’s honesty about subjects that usually aren’t discussed in public.

“Because she’s writing about her own experiences in detail and telling people how she feels, people are opening up and relaying their experiences — things that maybe they’ve never said to anyone before,” Millie Garfield, 93, a devoted reader and friend of Bennett’s, told me in a phone conversation.

Garfield’s parents never talked about illness and death the way Bennett is doing. “I didn’t have this close communication with them, and they never opened up to me about all the things Ronni is talking about,” she said.

For the last year, Bennett and her former husband, Alex Bennett, have broadcast video conversations every few weeks over YouTube. (He lives across the country in New York City.) “What you’ve written will be valuable as a document of somebody’s life and how to leave it,” he told her recently as they talked about her condition with poignancy and laughter.

Other people may have very different perspectives as they take stock of their lives upon learning they have a terminal illness. Some may not want to share their innermost thoughts and feelings; others may do so willingly or if they feel other people really want to listen.

During the past 15 years, Bennett chose to live her life out loud through her blog. For the moment, she’s as committed as ever to doing that.

“There’s very little about dying from the point of view of someone who’s living that experience,” she said. “This is one of the very big deals of aging and, absolutely, I’ll keep writing about this as long as I want to or can.”

Complete Article HERE!

A Working Class Death

By CARRIE LA SEUR

Your dad is dying. You’ve known it for months but the nurse is serious tonight when she calls and asks you to come sit with him in his narrow room at the veterans’ home. He’s in the later stages of congestive heart failure, complicated by diabetes, obesity, gout, prostate problems, and whatever other trouble years of poor diet, little exercise, long work hours, and minimal health care will get you. That he held out until age seventy is a little medical miracle and not much credit to the VA, which can’t keep track of his records.

You keep track of his records.

He’s propped up in pajamas on rough white sheets, working for each breath. You swab his mouth as it hangs open, showing discolored and misplaced teeth he never could afford to fix. His skin is mottled both from age and the cystic acne that’s plagued him all his life. An oxygen tube would help but he’s asked for no interventions, no heroics. That’s the Dad you remember, the long-suffering Marine who was proud to serve when his number came up. He finished basic at the head of his platoon. Now he takes chronic pain as another heavy pack to carry, mile after mile.

Your brother would like to be here but he’s at work on the West Coast and can’t afford time off. It’s a theme in your family, not having money for things that are important. Your parents divorced fifteen years ago when Dad lost his job as a grocery buyer and took one in another state with worse hours, conditions, and pay—managing a convenience store, a humiliation he carried in his posture, soldier straight until then. Enough, your mother said. She’d followed him on a trail of nowhere cities and inadequate employment that would end with her solitary stand in a cold, dusty Northern Plains town you couldn’t get out of fast enough.

Your dad barely opens his eyes but reaches to grasp your hand. Although you’re a grown woman and a lawyer with an urgent case file to read at midnight by his bedside, you’re still his little girl, the proof that he did something right. He didn’t drink like his dad. He didn’t hit you more than the occasional spanking. He didn’t leave. His greatest parenting accomplishments are acts of omission, but there are also affirmative acts of love. He stopped smoking when you were born. He taught you to ride your bike, drive, fish, salute, hit hard from an unexpected angle, and fight back against anyone who looked down on you.

He taught you that people will look down on you, but he didn’t mean to. He knows no other way to see the world. You’re ashamed to remember the times you’ve been ashamed of him—for his thin short sleeve dress shirts, his fast food gut, the way he picks his teeth with his pocket knife and quotes country music lyrics—because he’s always been so proud of you. He achieved what no one in his family ever had: he got a college degree. Sure, he almost flunked out, pool sharking to make ends meet where the GI Bill didn’t quite cover the needs of a family, but he graduated when neither of his parents finished eighth grade. You suspect that you have no idea how hard that really was.

“How’d you get a woman like her to marry someone like you?” a colleague asked him at a work dinner once when your mom wore her one string of fake pearls and a little black dress that made her look like Jackie O. The story hung on in the family for years, a pretty compliment to her, embedded with the kind of put-down he absorbed all his life. With his bottle-bottom glasses, bad skin, bad teeth, cheap suit, and shaggy haircut, he makes a terrible first impression, a walking sitcom punch line, and he knows it. He’s also funny and a good singer and can be kind if he isn’t provoked, but most people wouldn’t take the time to know him that well.

It took adulthood to make you wonder how he stumbled so badly when it came to solidifying his place in the middle class. For a while you thought it was his unique failings, an inability to assimilate, and surely appearance and social skills are part of the story. Then you began to look around you in towns like those you grew up in and saw that his appearance was nothing unusual. It’s the look of people who have zero disposable income to spend on themselves, especially the men, who wash their hair with a bar of soap, brush their teeth, and rush to work in whatever’s clean. It’s the outward appearance of poverty.

You know the careful visual distinctions we make in this country. “Dress like the job you want” also means “if you can’t dress and groom that way, good luck getting that job.” You’re your father’s daughter, so you grok the penalty of dressing the wrong way, but you’re also uneasy with passing as upper class no matter what your education and salary. The working class made you and at some fundamental level you’re loyal to it. The reflexive mockery of the people you come from by the people around you bites every time. And when Hannibal Lecter says to Clarice Starling, “You’re just one generation removed from poor white trash”—oh, you feel that. You know the gaze the monster turns on her. You’ve spent years avoiding it.

But in your father’s prime working years, the seventies through the nineties, larger forces were massing against Americans who grew up poor, believing in the bootstrap dream. Wages stagnated then shuffled into a decided downward trend. He got minimal raises and tiny bonuses, never grossing over $30,000 a year. There was no pension. He cashed out his IRA to put a down payment on a house after the divorce. Like tens of millions of Americans, you had no dental coverage growing up and learned to brush and floss compulsively while your dad paid for his root canal out of his own pocket.

You have dental insurance now.

He never did.

In many ways you’re exceptional among not just your family but your generation. You’ve risen above your origins while others, including family members, have fallen back even from their own highest social standing. The single-wide trailer house you moved your dad out of when his health failed was an anchor and an oracle. It said, “Don’t get too high and mighty. You could wind up here too.” Yet even as he experienced the setbacks that have turned many white men bitter and angry—and there was bitterness and anger enough—your dad hasn’t turned against his class. He’s a yellow dog Democrat who’s voted and argued all his life for the honor and rights of the working man, the laborer, the veteran against forces that would crush them.

And now he’s dying. You should have done better for him, found other doctors, spent more time, but you were working long hours at the firm. You have a child of your own. You had so little to give after all he gave you, and that’s the way of your family, too—never enough to go around. Never enough self-esteem or social capital, never enough sanity or sobriety, never enough love, because even though you were loved, the greeting card trope is true: to love someone else, you have to love yourself first. Your dad loved you as best he could, but his real gift was the sense of inadequacy that drives you.

He won’t let go of your hand. He’s waited for this night, you realize, when you’d be here and he could die holding his little girl’s hand, accompanied into the unknown. He doesn’t want to die alone, so you stay as hours pass, testimony blurs before your eyes, and the hard chair hurts your back and legs. His breaths rasp. If you look up you can follow each one, the inflation of blue-veined, hollowed cheeks, the rise of gown and blanket, parched lips you moisten with a sponge on a lollipop stick.

There’s a little gasp, and then silence. He’s not hooked up to machines so you have to stand over him to be sure that no breath or heartbeat stirs him. His eyes opened at the end, facing death with a brave heart, you imagine. You put your hand on his eyelids like they do in police dramas and shut them. You kiss his cheek and say, “Goodbye, Daddy.”

Complete Article HERE!

How close is your death?

New algorithm can tell patients how long they have to live

By Elizabeth Payne

Ottawa researchers are taking a page from Netflix and Google to help patients, their families and their doctors have informed conversations about death.

Researchers at Ottawa’s newly minted National Centre for Individualized Health have developed an algorithm that predicts how many months, or years, patients near the ends of their lives have to live.

It is information some people might not be comfortable with, acknowledged Dr. Peter Tanuseputro, an investigator at the Bruyère Research Institute and family doctor who offers house calls to his palliative patients. But he believes many elderly patients will want to know exactly how long they have to live, information not currently available for most. He also said everyone deserves access to the information, based on an individual’s health information and data collected across Ontario.

Among other things the end-of-life calculator can lead to is more appropriate care and more people benefitting from palliative care. Only 15 per cent of Canadians receive palliative care, according to recent data released from the Canadian Institute for Health Information. Even those who do often get it too late, said Tanuseputro.

“In Canada, we don’t like to talk about death and dying,” he said. “We think patients have the right to their own information to tell them about what is going to happen to them. We still live in a paternalistic society where we don’t think the patient can handle that information or don’t think they should have this information.”

The predictive algorithm, which goes by the acronym RESPECT (for Risk Evaluation for Support: Predictions for Elder-life in the Community Tool for the End of Life), calculates how long a person has to live based on 25 questions about what diseases they have and how difficult it is to care for themselves. The algorithm was developed using data collected through the province’s health system.

It is one of the digital health projects being developed by Bruyère aimed at addressing the health needs of people as they age (more info at bruyeredigitalhealth.ca/en/projects).

It is currently being pilot-tested in Windsor-Essex to help people who are frail understand whether they would benefit from palliative care. It is one of a series of algorithms using big data that is aimed at helping older people better understand their health risk factors in an effort to help them get better treatment.

When they are complete, the tools will be available to individuals and family members on the projectbiglife.ca website. In addition to calculating how close a person is to death, researchers are developing tools that will help calculate how long before an individual is likely to end up in a nursing home, and their risk of hospitalization.

Those tools can lead to preventative measures to help people stay in their homes longer, in some cases, or to get more appropriate care. Their development is part of the National Centre for Individualized Health, affiliated with Bruyère Research Institute, which was created with the help of donations totalling $1.25 million.

Tanuseputro said the use of big data to create predictive tools has the potential to change individual treatment and health care more generally. The health system is just catching up to what has been done elsewhere.

“If you watch Netflix, it will tell you what Netflix thinks you like based on your previous choices. In health care, we are just figuring this out,” he said.

“These tools are to help patients make informed decisions. Too often, you visit your doctor and your doctor has only limited amount of time and limited information.” While they might have a patient’s electronic medical data, that would not include what happened, for example, if the patient was in a hospital 100 kilometres away.

Among information patients are asked for in the 25 questions that feed into the predictive algorithm, are questions about activities of daily living, such as eating, bathing, personal hygiene and toiletting. Those, he said, are often a better indication that a patient does not have long to live, than a diagnosis of chronic illness.

He said physicians are sometimes hesitant to tell patients they are close to death — in part, because it is difficult to be accurate. This tool should change that, he said.

“We think patients have the right to know and seek out care that is appropriate to their needs. If a patient knows that they have a year to live, they should be receiving palliative care, supportive care, in order to stay at home. Clinicians don’t do it enough, partly because we live in a death-denying society and partly because it is hard, especially if you don’t have a terminal cancer diagnosis.”

Complete Article HERE!

Being Mortal

FRONTLINE follows renowned New Yorker writer and Boston surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life. The film investigates the practice of caring for the dying, and shows how doctors are often remarkably untrained, ill-suited and uncomfortable talking about chronic illness and death with their patients.

The Mystery of End-of-Life Rallies

Palliative care experts say it is not uncommon for people in hospice care to perk up briefly before they die, sometimes speaking clearly or asking for food.

Near the end of life, some patients revive and engage in lucid conversation or ask for specific foods associated with childhood, experts say.

By Judith Matloff

Susan Linnee had not eaten for weeks by the time she entered a Minneapolis hospice on Oct. 5. A 75-year-old editor, she was dying of a brain tumor and as her body weakened, she grew confused and stuporous. But suddenly, 17 days later, she perked up and asked for what her brother, Paul, called “odd food”: dill pickles, liverwurst and seed bread. Relatives fetched the delicacies and she nibbled a few bites. More animated than in previous days, she engaged in lucid conversation. Soon thereafter, she slipped into a barely responsive state and died two weeks later.

In speaking with the medical team, her brother learned that the brief rebound his sister experienced was called an “end-of-life rally.” Palliative care experts say revivals are common, although no one knows exactly why.

“There’s great mystery around this,” said John Mastrojohn, the executive vice president of the National Hospice and Palliative Care Organization. “But everyone who works in the sector has a story.”

Anecdotally, doctors and nurses interviewed for this article said that a striking number of their dying patients had experienced a rally, also known as terminal lucidity. Bounce-backs generally last only a couple hours, but some go on for so long that the patients can take a break from a hospice for a few months.

Dr. Craig Blinderman, the director of adult palliative medicine at the Columbia University Medical Center, hears lots of accounts. Yet evidence-based data is elusive, if nonexistent, he said. Aside from the challenges of catching dying people at the moment of springing back, it’d be tough to get the medical ethics board to determine that the research would benefit the patient. This type of study would require constant drawing of blood and monitoring of patients, which runs counter to the quiet fade away that is a signature element of palliative care.

Dr. Blinderman has theories about causes, however. He postulated that as organs shut down, they can release a steroidlike compound that briefly rouses the body. In the specific case of brain tumors, swelling occurs in the confined space of the skull. The edema shrinks as hospice patients are weaned off food and drink, waking up the brain a bit.

These windows of energy can startle family members sitting at the bedside. Those who hold out hope that their loved ones may somehow recover may see the comebacks as encouraging. Some find the little flickers disturbing or even heartbreaking.

“I always provide a lot of anticipatory guidance, that you should not be surprised or alarmed or that it means that your loved one is healing,” Dr. Blinderman said. “Obviously you don’t want to dash hopes, but you have to make clear that Dad is not rising like Jesus Christ.”

Dr. Janet Bull dispenses the same advice, as chief medical officer at the Four Seasons Compassion for Life, a nonprofit hospice care organization in North Carolina. During her 18 years in the field, Dr. Bull has seen many rallies, but one in particular stands out.

“I had this one patient, he was demented for years, and then he said things near the end that blew away his mom,” she recalled with wonder. “He hadn’t had a meaningful conversation with her for 10 years.”

Physiologically, experts believe that the mind becomes more responsive when a hospice patient is taken off the extensive fluids and medications such as chemotherapy that have toxic effects. Stopping the overload restores the body to more of its natural balance, and the dying briefly become more like their old selves.

Mr. Mastrojohn speculates that the social support at a hospice can give the chronically ill more pep than in a sterile hospital where they’re hooked up to machines.

Then there’s a spiritual or psychological component, which defies scientific explanation. Hospice professionals note a compelling desire to say goodbye or bond with loved ones in those last moments. There’s no way to test this hypothesis, but there’s no way to falsify it, either.

“People know when they are dying. They have this internal gut feeling that tends to expand at the end of life, and they seek a strong final connection,” said Dr. Bull.

Other doctors nodded their heads when told about Ms. Linnee’s request for a last meal. They said that often ralliers will ask for a particular food associated with childhood or comfort. The request is generally explicit, say, a Diet Sprite rather than any old beverage.

Dr. Martha Twaddle cited the case of an Illinois woman in her 50s who was reaching end-stage heart failure. She had been barely reactive, but then sat up and asked for a hamburger famous in Skokie.

“It’s some enormous hamburger, the size of your face with all this stuff on it. She took two bites and then fell back asleep,” said Dr. Twaddle, a physician associated with the Northwestern Medical Group in Lake Forest, Ill., who has worked in palliative care since 1989.

She has had nonreactive patients jolt up to ask for a relative, or share final wishes before they die. “Sometimes they want to give instructions to the family, like, ‘Don’t forget to take care of the car.’ Something mundane but important to them.”

Palliative care experts suggest accommodating a loved one’s request, no matter how odd it may appear.

Dr. Charles Wellman, the longtime chief medical officer at the Hospice of the Western Reserve in Cleveland, has had patients who become alert only for the doctor. They will not talk for days, and then their eyes open when Dr. Wellman walks into the room. “I think they get tired and withdrawn,” he speculated. “They’re transitioning to another existence, and they have work to do on that. Maybe they get annoyed with family, but they might make an effort to respond to the doctor.”

But rallies frequently revolve around a relationship, particularly if the patient is waiting for a child to come from out of town to pay last respects.

“We had one patient whose son was in the military,” Dr. Twaddle said. “There was no way the son could get to her for a month. The woman was out of it during that time. He finally came. She responded, and then passed 15 minutes later.”

Complete Article HERE!

‘Why I filmed a man take his final breath’

Steven Eastwood [L] was invited by Alan to film him as he died
By Helen Bushby

The old man lies in the hospital bed, drawing his last, rattling breath as he fades away from life.

The film camera, positioned just next to him, keeps rolling. We see the nurses move him to another room before they gently clean his body.

“Nobody wants to die but it’s a natural thing, we are biologically determined to die,” says documentary maker Steven Eastwood.

His film, Island, lays bare the dying process by filming four people with terminal illnesses.

Roy’s end of life care was tenderly shown

“Death is seen as a shameful thing – we think we’re a progressive society, but we repress and deny death,” Steven says.

“We’re no better than the Victorians.”

He was a quiet onlooker during the last year of his subjects’ lives, filming them in their homes before they became part of the daily rhythms of life in a hospice.

“To say you don’t want it to happen, you’re putting off facing something,” he says.

Mary talked a lot about her medical treatment during the film

“We need better death awareness to be more familiar with our mortality. I don’t think that’s ghoulish.”

The documentary came about after Fabrica, a gallery in Brighton, commissioned a film about end of life.

The London-based film-maker’s proposal was accepted, and he managed to get access to film in a hospice on the Isle of Wight.

He speaks fondly of his time there, saying: “These are four people I really cared about – Alan, Roy, Mary and Jamie; three were in their 80s and one was in his 40s.”

Steven regularly made the five-hour journey to the hospice, including the boat trip to the island, which features in the slow, often hypnotic imagery of the documentary and its trailer.

He made the film after having “two quite significant bereavements – my mother-in-law and my best friend, who was the same age as me.

“So I realised I didn’t know very much about what palliative care is.”

Steven thinks we need to face the reality of death, make it part of our daily existence, so it’s less frightening.

The Isle of Wight’s scenery makes up many of the film’s quiet moments

“I think we all have an existential fear – ‘if I see someone I love who’s died, it’ll be too traumatic, it’ll replace all the images I have of them, I’ll never be able to unsee it, somehow it’ll hurt me’.

“But for me it isn’t the case, being with someone after dying, with that intimacy. I found it quite empowering and peaceful.”

He has huge admiration for the people who work in hospices, and hopes his film can “celebrate and show what palliative care is”.

“The most radical, extraordinary people in our society are the least visible,” he says.

“They’re the carers. And the care we receive at the end of our lives is extraordinary.

Steven Eastwood admires nurses working in palliative care, such as the one pictured with Alan

“These hospices which people have anxiety about going into – they’re not morbid, sterile spaces, they’re places of life.”

He says that after one of the screenings of Island, a stranger approached him, saying it had made him “less afraid of dying”.

Steven adds: “It’s not an ambition of mine, but if you can sit through the film and at the end feel uplifted, if you can make some kind of peace with something that will happen to all of us, then that’s a good thing.”

He speaks fondly about all his subjects, talking at length about Alan, whose death we see at the start of the film. Alan died of cancer.

‘He was living to smoke’

“Alan had chain-smoked since he was 16 and he smoked in the hospice with a nurse lighting his cigarette. But he wasn’t dying of a smoking-related cancer.

“This is part of what palliative care is – helping someone smoke until they die.

“The doctors felt that if he hadn’t been smoking he would have died several weeks earlier – he was living to smoke.”

Alan invited him to film his last moments.

The film shows many poignant moments

“The second time I met Alan, we had a connection, he said, ‘I think you’d like to stay with me all the way through and I think that would be great’.

“He wanted to do something radical with his death, he felt quite radical about his life.

“He believed our tissue is just a vehicle and we translate into something else.

“As far as he was concerned, there was no self-consciousness around his image, he thought participating was a way of marking something of his philosophy. He became my movie star, he was like my Burt Lancaster.”

Steven recalls watching Alan die.

‘Bliss in his eyes as he died’

“His death was a long, running out of breaths. It was very peaceful and very beautiful and I felt really moved by it. I didn’t feel sad. He was really ready to die.”

Alan told Steven he had seen a man die when he was just 19, during active service in the forces in North Africa. His commanding officer was shot, and died in his arms.

“He held this man and said, ‘I saw bliss in his eyes as he died, and I knew that what we are experiencing now is not it, there’s more’.

“So for him, his death was the thing he’d been waiting for. We can’t all ask for that.”

Steven acknowledges that of course deaths can be sudden or premature, such as Jamie’s.

Jamie was in his 40s when he died

“Jamie had stage 4 stomach cancer and had a young family, his attachment to his daughter was so incredible.

“He wanted to die in the best way he could with his daughter, so he involved her in everything, talked about his treatment, about what it was going to be like when he’s not there.

“He’s the person who I get upset thinking about.”

The film has been used to help medics in handling end of life care, and Steven and his producer are partnered with Sussex NHS trust.

“We’ve run two sessions with trainee doctors, to use the film as a means to talk about how we speak around death and dying, and how we talk to patients.”

He’s also keen to attract a young audience as he says people in their 20s are the “biggest death deniers”.

Steven talks about the pressure to be “productive, youthful, to look good”.

Other cultures, such as Mexico’s, take a more colourful approach to death with Day of the Dead

“This idea that we’re terminal and have an end is too much. I’ve spoken to young people who think about their late life and say, ‘oh I just want to take a pill to end it, when I’m no longer viable I switch myself off’.

“I do think it’s challenging to confront your own mortality.”

Steven, who also volunteers at his local hospice, thinks other cultures handle death better than we do, saying in Ireland “you see a more sustained grieving process and more familiarity being around the body”.

He also talks about Latin America and Asia, where they have “a completely different attitude towards the dying process”.

Mexico’s Day of the Dead celebrates and remembers family ancestors

“I think we need better education – we are finite, our bodies do decay, and I’ve made my peace with that.

“I hope the film can return us to some extent to our biological bodies, and say yes, everybody will die, most people will die in this way, in their 70s or 80s from either heart disease or cancer, and the care will be extraordinary.

“I don’t find that a burdensome thought. I felt poorly informed, and now I feel better informed by making the film – I hope that it will do that for people.

“We die and we don’t have to turn it into some kind of sanctum, it’s life. And I think Alan showed me that, so yeah, I was very, very fortunate to be invited to film him.”

Complete Article HERE!

How to sit with someone who’s dying

Don’t feel you have to hold back your emotions during this time.

By Carol Rääbus and Roisin McCann

When his grandfather died in the emergency department of a Hobart hospital, Andreas was by his side.

“I was really frightened.”

It was Andreas’s first experience of being with a dying person and it made him anxious.

“As his breathing slowed down and he was taking less and less breaths, I was worried about how I was going to feel when he didn’t take any more,” he says.

“And then he had one final really deep inhale and exhale, and it was fine.

“I wasn’t panicked at all. I thought ‘Oh, it’s not weird’.

“Death isn’t weird at all, really. It’s quite normal and kind of OK.”

The idea of sitting with someone who’s dying, particularly when they’re someone you care about, is something many of us find overwhelming.

What’s going to happen? Should you talk about the football? Ask them what they want at their funeral? How you can make granddad feel more comfortable?

We asked a range of people, who regularly spend time with those who are at the end of their lives, to share what they’ve learnt about being with someone who’s dying.

When should I visit someone in hospital or hospice?

Hospice volunteer Debra Reeves says her first bit of advice is to find out when you’re allowed to visit a hospital ward or facility.

Hospital wards often have compulsory quiet hours when no-one is allowed to visit, and those hours are often different from ward to ward in the same hospital.

Check in with a nurse, or someone who’s been there a while, to find out if the person you want to see is up for visitors. The same goes for visiting someone in their own home — always check if it’s a good time for you to be there.

Should I bring food, photos or mementos?

Again, check first. Ask what the rules are at the facility beforehand, or ask the person whose home it is.

Smells can be strongly linked to memories, so if you know your grandma, for example, always loved the smell of roses, take them in.

End of Life Doula Leigh Connell recommends not wearing strong perfumes as they can be overwhelming.

Bringing food is often one of the first things we think of as a way of comforting someone. Depending on the situation, the person might not be able to eat something you bring, but the gesture can still be appreciated.

“If you know they like the smell of mandarins, take mandarins, even if they don’t get to eat them,” Leigh says.

Meaningful photos and items can be comforting for the person, but don’t take in too many things and make clutter.

What should I say?

Spending time with a dying loved one can be scary, but worth it for them and you.

Not knowing what to say is one thing many people in this situation worry about.

Those who spend a lot of time with the dying all tend to say the same thing — you don’t need to say anything.

“Don’t say a lot. Let them talk,” Maria Pate from Hospice Volunteers says.

“Or let the silence be there.”

Launceston priest Father Mark Freeman says often simply being in the room can be enough comfort for the person.

“Often that presence is a reassurance to them that things are all OK,” he says.

If being silent and still is difficult, you could take something with you to keep yourself busy.

Leigh’s suggestion is to try something you know the person liked doing — playing cards or knitting. Even if you’re not good at the activity, it can make a connection.

Andreas’s advice is to be open and admit you’re scared.

“If you’re not comfortable talking to someone who has a terminal diagnosis, maybe just say, ‘I’m having trouble with this’,” he says.

Should I hug them if they look frail?

Giving a loved one a hug is often the quickest way to let them know you care.

But if you’ve never hugged your uncle before, don’t feel you have to.

Though it can be intimidating when someone is particularly frail, a gentle touch of the hand can bring a lot of peace.

Gentle touch, like holding a hand, can be enough to let someone know you’re there and you care.

Maria recommends a very gentle hand massage as a way of making connection and comforting someone.

Father Mark agrees.

“This lady was fairly well out of it, I went to talk to her, [took her hand] and she opened her eyes and looked at me — and had never met me before — and said, ‘Oh Father, thanks for coming’,” he says.

Again, it’s a good idea to ask for permission before touching someone. They might not be in the mood, or might be experiencing pain and not want any touch.

I think they’re dying now. What do I do?

Until you’ve gone through it, none us really know how we will react if we’re there at the time someone’s life ends.

Father Mark’s advice to families he visits is to “embrace the reality” of what’s happening and allow themselves to feel.

“They don’t have to panic [about the fact] that they just want to cry, or they’re so frustrated and they’re sad and hurt, and angry even,” he says.

“All those things can be a part of it.”

Father Mark says he encourages families to stay in the room if possible and be a part of what’s happening. Often what’s happening is not much at all.

Debra was with a family in an aged care facility when their loved one was dying.

“They went straight into storytelling,” she says.

“He was already unconscious. His fingers were already turning black.

“They held vigil, they talked around the bed. They used his name a lot and they talked to him.

“They gave him the most beautiful farewell. It was lovely.”

No-one is dying yet. But can I be prepared when it comes?

Sometimes we don’t get any opportunities to sit with someone before they die — death can sometimes come when no-one is expecting it or ready for it.

Spending time with strangers who are dying has given our interviewees a sense of wanting to make sure they and their families are as ready as possible for that moment.

Their advice is to think ahead now.

“I’m going to make that advanced care directive, I’m going to write that will,” Debra says.

“And I’m going to resolve those relationships so that when I am on my deathbed, I’m at peace. And my family can be at peace as well.”

Complete Article HERE!