Talking about death with those who are ill is sometimes the kindest thing we can do

If it is true that death and taxes are the only two certainties in life, it is astonishing how much we readily discuss the latter, but often shy away from the former

There are also many patients who simply want to know what will happen to them as their final days approach

By Jonathan Romain

It is the ultimate question that many of us will have to face one day: do we want to be told that we are dying, or would we prefer to be kept in ignorance?

If it is true that death and taxes are the only two certainties in life, it is astonishing how much we readily discuss the latter, but often shy away from the former.

Perhaps even more surprising is that those professionally qualified to deal with death are equally tongue-tied. This has just been revealed in a Royal College of Physicians’s report, which says that doctors are reluctant to talk about death with patients.

This is a dereliction of duty. As a congregational minister who regularly has to visit those who are seriously ill, it is very clear that some patients would benefit from knowing they are nearing the end of their life

It might be that they wish to sort out their affairs – like Derek, who had never written a will but was prompted to do so by the thought of his demise; or Sandra, who had written one, but it was over 30 years old and needed radical changes.

Alternatively, thoughts of imminent departure can lead to important conversations, whether telling loved ones how much they mean to the person, or, as with Beatrice, contacting the sister with whom she had not spoken for 12 years, and effecting a reconciliation.

There are also many patients who simply want to know what will happen to them as their final days approach. They may be fearful, but it is often not so much of death itself, but of dying and the process that they will experience. Talking about it, and the pain relief on offer, can be very reassuring. It can also allow them time to contact organisations such as Compassion in Dying, which provides support for both them and their families.

Of course, doctors also need to know when not to discuss death, for there are patients who prefer not to be informed. If they wish to take the attitude that “ignorance is bliss” and clearly mean it, then why disturb that bliss?

One of my own relatives had a phobia about death. Whilst a long period of therapy might have uncovered his reasons and allayed his fears, telling him he was going to die a few days before the event, was not appropriate.

How do you know if a person really does or does not want to know the truth about their condition? It can be hard, as long-held views can change when confronted with the reality of death. Asking the patient directly but obliquely is one option, such as: “Is there anything you’d like to discuss or talk about?”, and letting them give a signal either way.

The new report begs the question of why many doctors have been so unwilling to tackle the issue until now. It could be lack of training – which should be rectified as a matter of urgency. It might be their own personal anxieties about death, which should also be addressed before qualifying.

Perhaps it is a worry that, if they do open up the subject with patients, then, unlike mentioning a prescription, it is a conversation that could take half an hour – time they do not have, yet which should be considered an important part of patient care.

There may also be the feeling that death is a failure on their part, seeing their job as to keep patients alive, and a reluctance to admit they cannot help any further. Although admirable, this is misguided, for death can be a natural outcome of a life long lived, or the inevitable consequence of the way it was lived.

It is good that doctors do not want to let patients down, but they may be inadvertently doing so by not talking about death.

Complete Article HERE!

End of life care: How to talk about dying to someone who is dying

Becky Bevers’ first question to doctors was: “Am I going to die?”

By Francesca Gillett

When Becky Bevers tells people about her incurable breast cancer, she is met with all sorts of reactions. Some people are awkward, even crossing the street to avoid talking to her, while others are just stuck for words.

So what should you say to someone with a terminal illness?

“I’m very open about everything and not afraid to talk about it – but other people are,” says Mrs Bevers, 51, who lives in Minehead, Somerset.

She was diagnosed with advanced, stage four breast cancer last year, describing the moment as “like being smashed with a sledgehammer”.

It is under control – “I’m not imminently going to pop my clogs” – but doctors do not know how long it can be treated for.

“In the early days there was total avoidance by some people who couldn’t cope,” she says.

“Or because I don’t look unwell, I have met acquaintances who said ‘you don’t look ill’ – like I’m a charlatan or I’m lying, almost accusatory.”

But the approach she has welcomed from friends and family is to ask any questions and ask how they can help.

“Just listening, putting in a phone call, dropping a text, making yourself available,” Mrs Bevers said.

And the worst things for her? “Don’t shy away from it. Don’t try and give me advice. Don’t go all sympathetic and say you poor thing. I feel desperate enough as it is without others’ desperation.

“The worst thing is when people say ‘try to stay positive’. I am such a positive person but I have had my moments, I have been on the floor sobbing.”

‘People are generally uncomfortable’

Hannah Bonnington, 36, was diagnosed with triple negative breast cancer, a rare form of the disease, in April last year, just before her son’s first birthday. In August this year she was told the cancer had spread.

“The stats say it’s unlikely I’ll see 38,” she says.

She said, based on her experience, doctors can “focus on the positives and the treatments and sometimes the reality gets a bit brushed under the carpet”.

Hannah Bonnington, a surveyor, says she wants “a bit more realism and frank conversations to normalise dying”

“I have no idea what my end of life will look like, whether it will be painful, whether it will be drawn out, whether I need to look at hospice care,” she said.

“They [doctors and nurses] feel reluctant to have these conversations because they are so focused on saving your life.”

It comes as a report published on Friday from medical experts has said doctors need to get better at having these difficult conversations with dying patients.

Mrs Bonnington, from Highbury, north London, says she talks about dying openly in order to come to terms with it so she can “move on with the rest of my life”.

“I’m quite blunt and make jokes about it, like saying ‘I’ve only got a year to live, I’m not spending time doing that’.”

But she thinks people “are generally uncomfortable” talking about death. For her, one problem can be when people “close down the conversation or sometimes try and change the subject”.

Her advice for anyone with a friend or relative with a terminal illness is to “take your lead from the person it’s happening to”.

“Some people want to bury their head in the sand and it’s their life, they can do that.”


When Peter Buckle’s wife, Wendy, was diagnosed with a brain tumour in 2010, he says the neuro-oncologist “never once told us that it could be terminal”.

“It must have been about four weeks before she died I happened to speak to the neuro-surgeon.

“He said ‘I suggest you get some hospice care lined up’. That’s the first indication that it was terminal.”

Peter Buckle and his wife Wendy, who died in 2011, on one of their last holidays

He said that when it became “absolutely clear” that Wendy was going to die, the “crash” was so much larger than it might have been had they had been told earlier.

Mr Buckle, 64, who now volunteers for the Marie Curie charity, said: “I have heard so many people say ‘of course you have got to give the patient a sense of hope’.

“I think it’s just cowardice, it’s just avoiding what needs to be done.

“I think if we’d had that prognosis, we’d have lived those last months differently.”

‘Will I die today?’

Louise Hatchard, who is an advanced nurse practitioner at Fair Havens hospice in Essex, spends time with dying patients every day – and says there are two groups.

“Some don’t want to know full stop,” she says. “Some people prefer to live in complete ignorance. We have to respect that. Then other patients do want to know.”

Hospice nurse Louise Hatchard says staff do not give timescales, but might say “short days” or “short weeks”

“The very difficult thing about it is the uncertainty,” she adds.

“I have literally just come out from talking to a lady who asked me the question: ‘Am I going to die today?’ The honest answer to that is I don’t know.

“You then talk about how poorly she is and what she thinks and explore her feelings. Our cues always come from the patient.”

She stresses that staff “do not give false hope” and answer the question “as honest and openly as we can”.

“Really you have one chance to get this right for them. You need to give them the chance to say things or do things they need to do.

“Maybe their last wish is to see the sun setting, if you don’t have these open conversations then you never know.”

Complete Article HERE!

Death doula says opioid epidemic means more end-of-life services needed in the Downtown Eastside

Amanda Page Brown completed her training to become an end-of-life doula last November and now is trying to secure funding to work full time as a death doula in the area of Vancouver hit hardest by Canada’s overdose crisis

The stretch of East Hastings Street that runs through Vancouver’s Downtown Eastside sees emergency authorities respond to thousands of overdose calls every year.

by Travis Lupick

Last fall, Amanda Page Brown visited a friend in the hospital.

“As I was leaving, I saw their roommate laying in bed, skin and bones, and very little life in him,” she told the Straight. In a telephone interview, Brown explained that she recognized the man through her job as a support worker in Vancouver’s Downtown Eastside.

“He was completely alone and no one knew he was there, dying,” she continued. “I asked him if it would be okay if I visited again. He said yes.”

Brown sat with the man once more before he passed away a few days later. “I realized I was the only person who knew,” she said. “I was it.”

The experience affected Brown deeply. “He taught me much over those three final days,” she said. “He taught me the path I’m meant to walk.”

Brown learned that she wanted to help people in the Downtown Eastside make the transition from life to death. Especially those residents who might not have anyone else to be with them during that time. She began researching how she might be able to do that, and found a certificate course at Douglas College.

“End-of-Life Doulas are advocates for their clients and complement the work of the medical community and hospice-palliative care workers and volunteers,” the program’s website reads. “End-of-Life Doulas assist clients in creating and carrying out their health-care treatment decisions, as well as providing support to clients and their family and friends.”

Brown completed her training to become an end-of-life doula (also known as a death doula) last November. Now she’s trying to secure funding to work full time as a death doula in Vancouver’s Downtown Eastside.

Brown said that her plan is to collect support via her Facebook page and an accompanying fundraiser, but hopefully not for more than one year. Then, with a little experience under her belt (plus the previous seven years she’s spent employed in the Downtown Eastside), she’s hoping she can secure a staff position or reliable and sustainable funding from one or several of the many government agencies, private organizations, and nonprofits that operate in the neighbourhood.

“As a doula, you can walk in as a trusted friend. That’s what is needed here,” Brown said. “I want to be able to offer things like bedside vigils. If somebody is going to be taken off of life…and if that person doesn’t want to die alone, then somebody should be sitting with them.”

There are typical scenarios where it’s easy to understand why a death doula might be needed. For example, an elderly Downtown Eastside hotel tenant with an alcohol problem who doesn’t have any family. But Brown described other situations where it might be less obvious how someone could benefit from the presence of a death doula.

“I’ve asked drug users who have had quite a few overdoses, ‘Has anybody ever asked you if you are trying to kill yourself?'” she recounted. Brown said that with folks in that type of situation, she could befriend them and, once a bond is established, offer to help them draft an advance-care plan.

“Hey, I hear that your overdosing a lot,” Brown explained she could say to them. “Does anybody know your wishes in case something does happen to you?…Because we can do this on a legal piece of paper. Why don’t we do this?”

Brown added that these types of conversations can have unintended benefits.

“That might actually open up another conversation about maybe treatment or detox,” she said. “Maybe, maybe not. But it might be another way to open another very important conversation down here.”

There were 367 illicit-drug overdose deaths in Vancouver last year, up from 235 in 2016 and 138 the year before that. For every fatal overdose that occurs in the city, there are many more that are reversed.

Coco Culbertson is a senior programs manager with PHS Community Services Society (PHS), a nonprofit that manages more than a dozen supportive-housing buildings in Vancouver. She also happens to have the same end-of-life doula certificate that Brown has.

Amanda Page Brown is employed as a support worker and wants to become a full-time death doula in Vancouver’s Downtown Eastside.

“There are volunteer networks that provide this service for free, but maybe not necessarily for the population that we support,” Culbertson told the Straight. “There are so many people in the Downtown Eastside who are living with a chronic illness and comorbidity and who become palliative or require some level of hospice. And there are very limited resources for those folks.

“Having someone who has the expertise and the empathy—professionalized empathy—to sit with them as they live out the last few days, weeks, or months of their life, would be an incredibly meaningful thing,” she said.

Culbertson noted that PHS staff often spend time with tenants who have been transferred to a hospital and are nearing the end of their life. But everyone is spread thin, especially since the dangerous synthetic-opioid fentanyl arrived and overdoses skyrocketed, she added.

“Someone who is able to provide more support for people who don’t have a family…that would be an incredibly important thing,” Culbertson said. ” I think it is just as important to offer dignity and humanity in death as it is in life.”

Complete Article HERE!

A Working Class Death


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!

A Handbook for Grieving

Go funeral dress shopping. When the saleswoman asks about the event, say: “Dressier than office, but not as fun as cocktail.”

By Caroline M. Grant

Before: Text your friends to tell them that your mother has entered hospice. Tell them that it’s just to get the equipment she needs (a hospital bed, a better wheelchair) and not a sign of her impending death. Pretend you believe it.

Brace yourself for the SWAT team of hospice services and providers that descends on you: the social worker, the nurse, the chaplain, the volunteer bearing a soft blanket, a stuffed bear and lavender-scented hand lotion. Give the bear away.

Answer every phone call from “Unknown Number” because usually it is some kindly person from hospice. Apologize to the Unknown Number who is not hospice when you tell her no, you can’t subscribe to the symphony because your mother is dying. Start to tell her that your mother used to subscribe to the symphony and you would like to someday, when she is … Trail off, hang up and feel guilty about the little bomb you dropped into her day.

A month before your mother’s death, read the draft of her obituary that your father has written, and start to offer edits like it’s any other piece of writing. Don’t cry until you come to the names of your children and nieces.

Nine days before her death, lean in close to your mom, sitting in her wheelchair at the dining table, and ask her to repeat herself until you hear her say, “I’m hurting.” Take her back to bed immediately and tell her you’re sorry, so sorry, you never want her to be in pain.

Cut up the back of all your mother’s nightgowns so that the caregivers can take them on and off easily. Cut off all the buttons to make the gowns more comfortable.

Talk and text with your siblings to help them figure out if and when they should fly out. Tell them not to feel guilty if they can’t; mean it. Feel relieved when they all book flights.

Sit at your mother’s bedside, holding her hand and begging her to please hang on, when your sister’s flight is delayed for six hours. Keep readjusting the sleeping arrangements in your house so that two guest rooms work for five extra family members. Put air mattresses on the floor of your bedroom for your kids and secretly wish it were a permanent arrangement.

Go funeral dress shopping with a friend. Meet her after work downtown and go to the mall like it’s a normal evening. Feel momentarily stumped when the young saleswoman asks brightly, “Shopping for an event?” Resist the urge to answer darkly; instead, try, “Dressier than office, but not as fun as cocktail.” Stare back at the saleswoman and feel some sympathy when she blinks.

Buy an entirely inappropriate, form-fitting, off-the-shoulder dress (which will hang in your closet, unworn, until you finally take it to a consignment store). Accept your tissue-wrapped purchase from the saleswoman who says, “Have fun at your event!”

Escape with your friend to a restaurant and down a glass of wine, very fast.

Seven days before her death, stand at your mother’s bedside while a priest gives her the Last Rites. Two days later try to control yourself, at church, when the same priest says that he is “bad at the Last Rites” because the recipients don’t actually die. Do not catch your sister’s eye, and definitely do not look at the woman the priest points to as proof; she is not your mother.

After church, race back to your mother’s bedside where your brothers have been keeping vigil. Lean in close and smile when she gestures toward your outfit and whispers, “I like this.”

Tell her you chose it with her in mind. Be so glad that “I’m hurting” won’t be the last thing she says to you.

Take turns with your father, sister and brothers, sitting with your mother and holding her hand. Notice when her tight grip, which you have had to peel off finger by finger, loosens, but don’t comment on it. Pass her hand gently to each family member in turn, like the baton in a terrible relay race.

Read to her and play music. Try not to flinch when the nurse nods approvingly and says, “Hearing is the last thing to go … well, nearly the last thing.” Wonder at how quickly you have become accustomed to your mother, your bright and opinionated mother, lying unconscious, mouth open and breathing heavily. Listen to her breathing and try to memorize the sound of it.

Three days before your mother’s death, start to sleep with the phone by your bedside. Be grateful on the two mornings you wake up without it having rung.
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After: Hang up the phone and lean into your husband’s arms. Tell him, “Now I have to learn how to live in this world.”

Wake your siblings. Drive through the darkness to your father’s apartment. Continue to call it your parents’ apartment.

Write “RINGS” on a piece of paper and set it on the floor by your mother’s bed so that you don’t forget to ask the undertaker to remove two of her rings. Ask him to please leave her wedding band on.

Go funeral dress shopping with your sister. Buy the only dress you try on. Notice ruefully that you actually kind of like it. Too bad; you will never be able to wear it again.

Dig out the darkest sunglasses you own and wear them even on gray and rainy days.

Drink so much water. Grief is dehydrating.

Be thankful for friends who make very specific offers: to do your laundry; to pick up family members at the airport; to deliver breakfast; to buy you waterproof mascara.

Look around during the funeral and realize how many of your friends have also buried their mothers. Wonder if you were supportive enough to them, realize you couldn’t possibly have been, know that you will be from now on.

Pause, during the final verse of the final hymn, and listen with tears and joy while your sister and niece float the descant high above all the other voices.

Add your voice and hope that the music somehow reaches your mother.

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

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 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!

More to dying than meets the eye

Those who work with dying people are familiar with patients seeing long deceased loved ones, angelic beings, even hearing music and comforting voices as the patient nears death. Deathbed phenomena have been documented in the days, weeks, and months before death since the 1500s. Often confused with hallucinations, deathbed phenomena can bring comfort to patients and caregivers if those involved know what they are experiencing. This talk will explain deathbed phenomena and present on-going research about the topic. Accounts from the dying and bedside witnesses will be shared.