When End-of-Life Plans Are Just Hopes

Why her mom’s living will turned out to be useless

By Lola Butcher

Mom’s terminal cancer diagnosis took her by surprise. “I always thought I would just fall over dead while I was walking across the backyard,” she told me. “Not me,” I responded. “I’m planning to go out like Uncle Ernest: Go to bed healthy and wake up dead. I think it’s called cardiac arrest.”

We were sitting at Mom’s kitchen table, trying to pretend everything was OK. A few years earlier, Mom had flitted away “a little bit of cancer,” as she called it, with a lumpectomy carefully timed so she did not miss her volunteer gigs. But we knew that this time — two cancers and increasing shortness of breath — was going to be different.

We tried to focus on the peach cobbler in our bowls. In our minds, though, we were coming to grips with the fact that we had fooled ourselves.

Mom and I thought of ourselves as great planners. Our pantries always well-stocked; the menu always worked out weeks before the big family dinner; a hundred-dollar bill always tucked in the sock drawer, just in case.

Mom’s End-of-Life Plan

Mom’s end-of-life plan was to die quickly. It turns out that is not a plan; it’s a hope. And the difference proved terribly sad when it came to the living will she’d prepared (a living will is an advance directive spelling out your desires regarding medical treatment if you’re no longer able to express them).

Like every good planner, Mom had a Plan B if she didn’t get the sudden death she was counting on. She was such an enthusiast for having a living will that I teased her about handing out copies like they were campaign flyers. When she turned 65 or thereabouts, she presented a copy to each of us four kids, her siblings and her doctor, along with a warning that “if you keep me alive on machines, I’ll come back to haunt you.”

That made us laugh. Mom was as threatening as a worn-out quilt. And after Dad died, when they were both in their mid-50s, she devoted the next three decades to making other people’s lives easier. She was a cookie-baking grandma happy to babysit on five minutes notice; the lady who made hash brown casseroles for bereavement dinners at her church.

Mom’s Living Will

Looking back, I wonder where she got all those copies of her living will. In my mind’s eye, I see her — super-white tennis shoes and polyester slacks — standing next to the copy machine at the library, fishing dimes out of her coin purse, while a young library intern pushed the button. “I better get a couple more copies, if you don’t mind. My kids lose things like you wouldn’t believe,” she might have said.

We all knew the living will was Mom’s way of saying she didn’t want to die like my dad did, suffering horribly from lung cancer treatments known to be futile even before they started.

What we didn’t know is that she would suffer horribly because we didn’t adequately plan for her end-of-life care — and that the living will would prove useless.

Our Big Mistake

Mom was of the “whatever you think is best, doctor” generation, but none of her kids are wallflowers. Yet we were unprepared to advocate for Mom’s end-of-life preferences, so we politely acceded to her physician’s auto-pilot protocol of tests and specialists in unfamiliar medical centers and painful blood draws even though Mom was clear from the outset that there would be no chemotherapy and radiation.

Years earlier, my cousin had complained about the hospice nurse that cared for her dad, but I changed the subject, murmuring about how nice the funeral was. So I missed the opportunity to find out what had gone wrong, what was the name of the hospice and, most importantly, how we could avoid the same mistake if we needed hospice services in the future.

That turned out to be our big mistake.

We were caught off-guard on the day that Mom was too weak to get out of bed and I couldn’t turn her. Although we did have options (in-home help, inpatient hospice in the city 75 miles away or the local nursing home), during Mom’s months-long decline, we had not discussed them because we were hoping —there’s that word again — we wouldn’t need them.

The Hospice Trouble We Encountered

I woke up that morning, expecting another day of helping Mom from her lift chair to wheelchair to toilet to hospital bed. When we realized it was not to be, I panicked. I administered the first dose of morphine for the day and, as Mom dosed, started frantically trying to make a plan that should have been made weeks earlier.

The home care agency in her town, it turned out, only served patients not on hospice; they had a list of nurses who moonlighted, but nobody could be arranged on short notice.

The inpatient hospice had an opening, but that would mean Mom spending her last days in the city, too far for her five siblings to visit. Would she want that? In her frail and despairing condition, I couldn’t bring myself to ask.

So we headed to the nursing home, where Mom died 10 days later.

Before all this, I would have said that our one end-of-life plan was that Mom would not die in a nursing home that was just as miserable as we all feared it would be. But what I really meant was that was our hope. We didn’t have a plan.

Complete Article HERE!

A Dress Rehearsal for Death

We had started down the path of honoring our mother’s wish to have a good death until a hospice nurse figured out that she wasn’t really dying.

Monona Yin, right, with her mother, Fay Hoh Yin, and brother, Duncan Yin.

By Monona A. Yin

Three years ago, my family and I had the experience of going through a full “dress rehearsal” for my mother’s demise. At 83, she had become alarmingly weak from stage IV lymphoma and atrial fibrillation, and asked me and my brother to come home to Delaware for her next oncologist visit.

Mom had already undergone chemotherapy and cardioversion, so we knew there were few treatment options left. Still, we were utterly unprepared when the doctor said, “She probably has less than six months,” and recommended that she begin hospice care.

Widowed at just 37 with two small children, Mom has trained herself to face challenges without flinching. She is that rare Chinese elder who isn’t superstitious about mentioning or planning for her own death.

True to form, when we got home from the oncologist’s office, Mom sat us both down at the kitchen table to discuss her end-of-life wishes. She had witnessed two horrible lingering deaths up close — her mother’s and a longtime friend’s. What she feared most was pointless suffering and the loss of control over her own life. She wanted us to understand that, if she had little hope of recovery, she’d rather go quickly than fall apart slowly and painfully.

My brother, at the other extreme, wanted Mom to pursue every medical option, no matter how long the odds. He believed that doctors were fallible, there was always another treatment out there, and life was worth clinging to. And he couldn’t bear the thought of living without her.

Then there was me, torn between them. I had spent hours listening to Mom’s fears and understood them. A decade earlier, my mother-in-law had died with a feeding tube in her side while her oncologist suggested more surgery — after six months of wasting away from metastatic cancer. It would have been infinitely kinder to allow her to die peacefully in her own bed.

We had given my paternal grandmother just such a “good death.” We sat by her bed and told family stories as she slipped into unconsciousness. We turned away from the outside world and drew close to one another. All was quiet and time seemed to stop. Finally, we held her as she took her last breaths, letting her know how much we loved her but also letting her go. I remember that week as a thing of rare beauty. It taught me that dying well can be a balm and a blessing to all involved.

Recognizing the enormous gulf between those two scenarios, I supported Mom’s right to die on her own terms. Like my brother, I desperately wanted more time with my mother. Despite her failing body, Mom’s mind remained sharp. In recent years, our occasional mother-daughter tensions had subsided, leaving a much warmer and less complicated companionship.

After an emotional week of debate, we all agreed to bring Mom to New York for a second — and final — opinion from the world-class doctors at Memorial Sloan Kettering. If they too determined that nothing more could be done, we would accept the inevitable.

At Sloan Kettering, Mom went through the scans without incident but afterward her blood pressure dropped dangerously low and she was admitted as an inpatient.

By the next night, Mom could hardly breathe at all. It was agonizing to watch her gasping for air. She was terrified of suffocating and on the verge of panic. Finally, she pulled me close to say, “Tell them to stop everything.”

I had promised to honor her wishes, so I found a doctor and activated her D.N.R. In a few minutes, my husband, Steve, and our 14-year-old daughter, Maya, arrived and Mom couldn’t hold back her sobs. “I’m so sorry I won’t see you grow up! I’m sorry I won’t see you graduate or get married!”

We had all been coming to terms with Mom’s mortality for months but the shock and pain were still overwhelming.

Then something that seemed miraculous happened. A hospice nurse, Tracy Kahn, arrived and went in to check on Mom. She came back to tell us that she didn’t think Mom was going to die that night, the next night, or maybe for weeks.

Based on years of observing hospice patients, Tracy did not believe Mom was dying of cancer right then.

Instead, without our realizing it, her heart had been severely weakened by the cardioversion, which required high doses of a toxic drug. Almost two liters of fluid had accumulated in the lining of her right lung.

We immediately reversed the D.N.R. but it would be another 10 days before Mom grew strong enough to have the fluid drained. Over the next month, the hospital’s lymphoma, cardiology and pulmonary teams worked together to bring Mom back from the brink. They administered steroids, gave her blood transfusions, stabilized her immune system, optimized her diuretic and treated her infections.

Mom transferred to a rehabilitation center for another month, then came to live with me in Brooklyn. With our newfound sense of “now or never,” Mom and I fulfilled one of her longtime dreams. We edited and self-published her memoirs, which she’d been writing for years, and she’s enjoyed positive reviews from friends and strangers alike.

Today, Mom still wrestles with neuropathy, shortness of breath, and sometimes crushing fatigue — but she is very much alive. Even more amazing, she has been living on her own for the past two years.

We’ve had time to reflect upon our decisions, how we influenced one another, and what we’d do differently. My central insight is that it took all three of us to steer clear of the twin shoals of dying too soon and dying too late. We made better decisions because we listened to one another and weighed all the conflicting information. In hindsight, my mother acknowledges that she wanted to “pull the plug” too soon because she became overwhelmed by fear.

No one thinks clearly in the grip of panic. That’s why it’s so important to start talking long before the end. Not merely about what constitutes a good death but, more important, what makes even a diminished life worth living. As Atul Gawande writes in “Being Mortal,” “Our ultimate goal, after all, is not a good death but a good life to the very end.”

The end-of-life conversation is equally important to both sides — the dying person and the survivors. One of my mother’s greatest comforts is knowing that her children understand her wishes and will honor them. We proved that during the dress rehearsal.

Only recently have Mom and I realized how much it cost me to be her health care proxy, rather than a grieving daughter who wanted to do anything to save her mother. I’m still going to be torn between those two roles “the next time” but simply being aware of that inner conflict helps mitigate it. And Mom’s future decisions will be informed by all the joy she would have missed had she died that night in late 2015.

Complete Article HERE!

‘Remember you will die’ – and 11 other tips for a better death

Hundreds of thousands of people have already discussed the last great taboo at one of Michael Hebb’s ‘death dinners’. Here he offers some advice for the rest of us

By

Two things preoccupy the US writer Michael Hebb – food and death – and he has managed to combine them in his new book, Let’s Talk About Death Over Dinner. It is the product of an idea he had five years ago when he set up an organisation called Death Over Dinner, whose goal was to bring disparate (and sometimes desperate) people together over an informal meal to talk about what is so often a taboo subject. Since then there have been more than 200,000 “death dinners” all over the world. The new book charts the gentle revolution Hebb initiated, as well as offering prompts for readers who want to organise their own death dinners and guidance on coming to terms with the loss of family and friends, and with our own mortality. No one, after all, is going to get out of this alive.

“The way we die in western society is broken,” says Hebb. Now 42, he was 13 when his father died, leaving a gap that he felt his mother and immediate family were unable to properly address. “I had a hunch that open conversation about our end-of-life wishes could be the most impactful thing we could do to heal that system and to heal the way we die. We are death-illiterate, and when we don’t discuss death we are not empowered to make decisions.” In a long phone conversation from his home in Seattle, he spells out his philosophy for dealing with dying. You may not be able to conquer death, but you can at least exercise some control over how it happens.

1. Remember you will die

Hebb says we have “ingrained cognitive bias” not to talk about death because we don’t really believe in our own mortality. “We believe we are an exception to basic rules,” he says. “If we haven’t experienced something, it’s hard to know it or to discuss it.” But there are no exceptions, and sooner or later you will have to confront it.

2. Talk now, not later

“Death is a reality for all of us,” Hebb says. “How prepared do we want to be? How comfortable? How much grace do we want to have in the face of it?” He argues that it is better to talk about death when you are well than when you or your parents or other members of your family are terminally ill. “Thinking and talking about death can identify how you want to live,” he says. “If we haven’t made ourselves comfortable with this conversation, we end up being oppressed by it.”

3. It’s not true that you die alone

Before talking to Hebb, I was doubtful that the living could relate meaningfully to the dying. My father died last year and, in the five months that were left to him after he was diagnosed with terminal cancer, I found it hard to find the right words to address what was happening to him or to know how to use what limited time we had together. Everyone, I surmised, had to face death alone, to make their own peace, but Hebb disagrees. “Dying is a realm with no experts, but my sense is that you can reduce the suffering of those who are dying by being as present as possible to them. A lot of people already start dying when they’re diagnosed, but you can live while dying. There is much to be gained from being present until the final chapter. It has the potential for deep connection. I’m not going to gleefully state that dying is a happy time, but I do know that people grieve longer when they don’t know how to honour the person who has died.”

4. Where there’s a will there’s a way

“Statistics show we are very unprepared for death,” says Hebb. “Most people don’t have their end-of-life documents in order.” Sixty per cent of adults in the UK have not made a will; in the US, that figure is 57%. For Hebb, this isn’t just foolish at a practical level; it suggests an unwillingness to talk about death at all. “The documents are important, but more important are the nuanced conversations. If somebody is going to be your health proxy or advocate for you when you are unwell, you want them to have more than just a signed legal document. You want that person to have an entire forest of information about how you feel about end of life.” He says that if you give someone power of attorney to conduct your affairs in the event of you becoming incapacitated, you need to make sure that person really understands you. Spell out exactly what you want in terms of end-of-life care, perhaps through an advance care directive or a living will; do not assume your proxies will make the right calls.

5. Decide what sort of funeral you want

Specifying what you want in terms of your funeral and disposal of your body can be important to the dying. But it may be even more important to the grieving family. “If it makes somebody’s last years more peaceful knowing that their wishes will be fulfilled, then fantastic, but communication is really a gift to the people you leave behind. It’s an important element of the moving through and getting on with their lives.” Making it clear that you do not want a gun carriage pulled by six white horses, or choosing a cardboard coffin rather than a fancy mahogany one with brass handles, can also save a fortune and keep relatives out of the clutches of funeral directors who may be tempted to oversell. How much is spent on a funeral is not a measure of the love felt for the departed.

6. Think about your legacy

Fretting about your legacy seems to me a pointless act of ego, but Hebb disagrees. “Many people do work in this world that they want to extend beyond their death. Some of that can be seen as ego, but some of it is humanitarian in nature, and I think it’s OK to want to have a continuing impact. If that’s what gives your life meaning, I’d say embrace it.” Above all, though, he says, don’t make your legacy suffering and confusion. “You will have a legacy. Everybody has a legacy. So often in families when these things aren’t discussed, there is infighting. For me, it’s not enough to say child A, B and C gets X, Y and Z; if they can have some understanding around your decisions, it’s less likely to haunt them.”

7. Be ready to talk to children about death …

You should involve children in your conversations about death, with one proviso – that you go at the pace they set. “My older daughter is interested in the topic,” Hebb says, “but my younger daughter has zero interest and I feel bad for her that her father is the death guy, so I don’t force it on her. But if a child is interested in, curious about, scared of or ruminating on death, it is of great benefit to meet them in their curiosity or concern or fear. It’s also a great way to know your child better.”

8. … And be there for bereaved parents

“We are often afraid to bring up death in the presence of parents who have lost children,” says Hebb. “It’s an unimaginable amount of grief for lots of us. But if we want to stay connected to those people, it’s imperative we engage with them because it is certainly in their thoughts and dreams all the time.” He says many people also lose friends when they lose children because those friends are too frightened to discuss the subject and the relationship breaks down.

9. God makes little difference

You would think belief in an afterlife would make the pain of dying less, but Hebb is sceptical. “Faith plays a role, but it isn’t as central as you would think. Grief will exist regardless of whether or not people have faith. If that’s an excuse not to have the conversation, you’re not doing yourself any favours.”

10. Accept that caring for the dying is hard

People who are dying fret about being a burden on their friends and family, while carers feel they have to be perfect and never show frustration or exhaustion. Hebb says both should be honest about any resentment they feel. “Care-givers should feel they have permission to have all these conflicting emotions,” he says. “If the person thinks they are the only one who feels this way, that’s much more traumatic than realising that it’s OK to resent the person you’re taking care of. ”

11. Death is not a medical act

Like others who have written about death, notably Atul Gawande in his book Being Mortal, Hebb emphasises that death is a human and community event, not a medical event. “Medicine is what keeps you alive and that’s what doctors are focused on,” Hebb says. “We have to reclaim the death part. Don’t leave it in the hands of tacticians.” He praises a project at the Cleveland Clinic called “The Pause” where the medical team gather round the bedside of a person who has just died to have a moment of silence and then share their recollections of the patient. It is not merely a medical failure to be recorded and a body to be disposed of; it is a life and a person to be honoured.

12. There are no rules for grieving

Finally, Hebb says, it is impossible to systematise grief. “Every case, every person, every situation is different. We should give ourselves permission to grieve in precisely the way we need to.” If you beat yourself up for the way you are grieving, you will only lengthen and deepen your grief.

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!

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.

‘I’m a friend at the end – why I became a death doula’

Hilary Pepiette is an end-of-life doula

When a loved one dies, it is often medical staff, a hospice and an undertaker who deal with the final moments.

But families can now bring them back into the home, engaging an end-of-life doula to take care of the last wishes and arrangements for their loved ones.

Hilary Pepiette, a solicitor, is one of Scotland’s first end-of-life doulas.

She thinks there is a great need for her role as a “friend at the end”.

Hilary told BBC Radio Scotland’s Kaye Adams programme: “An end of life doula is someone who supports and walks alongside a dying person, the family and people close to that person, through the dying process, through the death and sometimes after that.

“The doula is your consistent flexible presence to fill in the gaps and give support emotionally, spiritually and practically in whatever way it is needed for each individual person and your family.”

Hilary believes we have handed over control to the professionals.

She said: “I have seen family members who have died and I think there is a feeling for me that I would love to do more and make sure that people can have the best possible death they can have, and to celebrate life.

“It is about making sure people live their life to the absolute fullest potential as long as they possibly can, and celebrate that, and then help them have the death that they want to have, give them come control over that.

“My mum died at home and while we did the best we could and it was a good death.”

Death is a taboo

But she added: “I wish I knew then what I do now about what was going on for her at that time.

“It’s only in the past 100 years or so that people have stopped caring for their dying family members at home and it all became about hospitals and the medical profession.

“Death has become a taboo and something that people have stopped talking about. But the more we are open about it the better. Being with someone and having those final conversations is so rewarding.”

Hilary thinks people can talk about their end of life wishes more easily with someone who is not family

As a solicitor in Edinburgh, Hilary processed wills and personal business. She decided to take her end-of-life services one step further.

She said: “It felt natural. I have been a private client solicitor for more than 20 years, and through that I have worked with a lot of people planning wills, powers of attorney and advanced medical directives to help them think about and plan for the end of their life.

“It seemed like a natural progression to me to take that one step further and think about what happens after the legal documents have been put in place.”

Hilary’s firm BTO, is the first to offer an end-of-life doula as part of its services.

What does an end-of-life doula do?

A doula will talk and listen to the patient’s wishes and hopes for the way they will die

According to Hilary: “I do things from washing dishes or making their dinner or cutting someone’s nails or feeding them at the end of their life. Also providing the personal care that might be provided in a hospice.

“Also talking. There is a big role for conversation here where it can be really hard within a family to have the difficult conversations about what you want the very end of your life to be like, where do you want to be when you die, who do you want to be there. Do you want music playing?

“It is establishing what the biggest hopes and fears are. What are you most afraid of? Is it pain or losing control of autonomy, of making decisions. Having those conversations is a big part a doula can play.

“Some people are never comfortable talking about it. But most people who are given that opportunity and a safe place to do that are happy to do that and have those conversations.”

Someone who agrees with Hilary is Prof Dame Sue Black, forensic anthropologist and vice chancellor for engagement at Lancaster University, wants death to be celebrated more.

She told Kaye Adams: “It is an inevitability, it is going to happen. What we can’t control is how it happens.

“In the past that would have often been done by family. I think we have become scared of death, we don’t want to admit it exists.”

Prof Black was awarded a Damehood in 2016

Prof Black thinks people have been conditioned to believe in a certain way of doing things.

She said: “People tend to accept there are rules we have to abide by but generally there aren’t. It’s important those left behind feel they have the autonomy to respect the person they have lost in a way that helps them with their grief.

“We think a funeral has to be very specific in that it has to have hymns and speaking, and it doesn’t. We need to have a confidence that those who are left behind have control over the celebration of the person who has been lost.”

She also thinks people should not be afraid of the last moments and to make the most of them.

She said: “I think we forget sometimes when patients are advancing towards the end of life that we think they are not listening and don’t communicate.

“There is some research that suggests the last sense to go may well be hearing so that’s the time we need to tell them how much we love them, how much we care, what a difference they’ve made.

“One of the last things we can do is communicate.”

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