I will never forget my grandma’s last days, surrounded by people who were half shaman, half scientist, and all good

We expected Nana to die years ago. When she finally went, it was both sadder and sweeter than we were prepared for

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I knew it was coming; I had known it was coming for years. I had seen my friends go through it, and I had spent many hours thinking deeply about what would happen. Comforted by theories on the nature of consciousness, seduced by feasible rationales for an afterlife, sobered by the practical science of what was really going to happen, I was prepared. And then she died.

My nana had been ill for a long time. Her final diagnosis, chronic obstructive pulmonary disease, came 12 years before she died, although the prognosis was no more than four. She had come close so many times that we had started calling her “the boomerang”. But when she went into hospital for the last time, although in our heads we constructed logical expectations of her coming back to us, in our hearts we knew she wasn’t coming home.

Losing someone close to you is something you can only really talk about once it has happened. All the cliches about grief that I had heard over the years became my reality. Half an hour after she died, my cousin Elliot and I sat in the hospital coffee shop, exhausted, paralysed, silently delirious, while a tiny white butterfly fluttered around our heads, flew a full circle above us and disappeared. Over the next week, the appearance of white butterflies comforted each member of my family at different times in some ineffable way. Despite our wildly varying degrees of faith, that delicate symbol soothed us with an understanding that she was OK: whether she was on a cloud with her brothers and parents, united on an unknown spiritual plane with a greater force as part of a universal consciousness, or just gone, she was no longer in pain.

It was very sad, of course, and that is the best it was ever going to be. The reason I say “the best” is that, if it were not for the acutely careful preparations of us all, including Nana, it could have been far worse.

Palliative care should not be as taboo or scary as it is to many of us. I would go as far as to say that it is the ultimate in wellbeing practices, when a person’s health has failed and all that can be done is care. The word “palliative” comes from the Latin pallium, a cloak, and in many ways this metaphor is apt. In the last days, a “syringe driver” delivered her a steady flow of morphine and anti-anxiety drugs that concealed the worst of her symptoms, shielded her from their effects, protected her from the pain, and even hid her from death for a few more hours or days. If she had not had that, she would have died of hypoxia on the Thursday, gasping violently for breath as she drowned in carbon dioxide that her lungs were too weak to exhale. Instead, she went on until the following Tuesday, my auntie’s birthday, not before she had me write in her card: “Life is worth living because you’re my daughter.” When she finally passed, it was a moment of peace.

(Note to doctors: if it could be called anything other than a “syringe driver”, I think everyone would be much happier. My bampy (grandfather) in particular was unnerved by the name and was initially convinced that it was going to speed up her death.)

On the Saturday, when we all first expected her to go, we played her favourite songs at her bedside: lots of Maria Callas and Ella Fitzgerald, and (who knew?!) Hot Chocolate’s No Doubt About It, a song that recounts Errol Brown’s alien visitation. We were gifted the time to rejoice with her in what made her joyful, emotional and eccentric. As she appeared to slip away, our tear-stained faces fixed around her in uncontainable smiles, sure that the hour had come, she boomeranged back again, just in time for The Chase.

Memories of moments in her final days are precious and I am gratefully aware of how lucky my family and I are to have had them. They exist because of palliative-care specialists. What a mystically unique role: part scientist, part shaman; half doctor, half priest; with careful words held equally as important as the careful drugs. Never hard-heartedly functional, and never “compulsively positive”, it is as if they are of the same station as midwives, just on the other end. I am profoundly moved by this practice. The UK is reportedly the best in the world at end-of-life care, which is cause to be proud, and there are calls from both the International Association of Research in Cancer and the World Health Organization to declare palliative care a human right.

As someone whose first close bereavement was sort-of-sweet-sad but without regret, I support these proposals wholeheartedly. I wish that all people could be treated with such deep compassion and humanity. I sincerely hope that, when it is my time to die, my family and I will be helped to prepare in the same caring, tender way that my grandmother and family were in Llandough on a long weekend in July.

Complete Article HERE!

What happens as we die?

As with birth, dying is a process. How does it unfold? Can you prepare for it? And why should you keep talking to a dying person even if they don’t talk back?

By Sophie Aubrey

We’re born, we live, we die. Few things are so concrete. And yet, while we swap countless stories about the start of life, the end is a subject we’re less inclined to talk about.

Conversations about death – what it is, what it looks like – are scarce until we suddenly face it head on, often for the first time with the loss of a loved one.

“We hold a lot of anxiety about what death means and I think that’s just part of the human experience,” says Associate Professor Mark Boughey, director of palliative medicine at Melbourne’s St Vincent’s Hospital. “Some people just really push it away and don’t think about it until it’s immediately in front of them.”

But it doesn’t need to be this way, he says.

“The more people engage and understand death and know where it’s heading … the better prepared the person is to be able to let go to the process, and the better prepared the family is to reconcile with it, for a more peaceful death.”

Of course, not everyone ends up in palliative care or even in a hospital. For some people, death can be shockingly sudden, as in an accident or from a cardiac arrest or massive stroke. Death can follow a brief decline, as with some cancers; or a prolonged one, as with frailty; or it can come after a series of serious episodes, such as heart failure. And different illnesses, such as dementia and cancer, can also cause particular symptoms prior to death.

But there are key physical processes that are commonly experienced by many people as they die – whether from “old age”, or indeed from cancer, or even following a major physical trauma.

What is the process of dying? How can you prepare for it? And how should you be with someone who is nearing the end of their life?

What are the earliest signs a person is going to die?

The point of no return, when a person begins deteriorating towards their final breath, can start weeks or months before someone dies.

Professor Boughey says refractory symptoms – stubborn and irreversible despite medical treatment – offer the earliest signs that the dying process is beginning: breathlessness, severe appetite and weight loss, fluid retention, fatigue, drowsiness, delirium, jaundice and nausea, and an overall drop in physical function.

Simple actions, such as going from a bed to a chair, can become exhausting. A dying person often starts to withdraw from the news, some activities and other people, to talk less or have trouble with conversation, and to sleep more.

This all ties in with a drop in energy levels caused by a deterioration in the body’s brain function and metabolic processes.

Predicting exactly when a person will die is, of course, nearly impossible and depends on factors ranging from the health issues they have to whether they are choosing to accept more medical interventions.

“The journey for everyone towards dying is so variable,” Professor Boughey says.

What happens in someone’s final days?

As the body continues to wind down, various other reflexes and functions will also slow. A dying person will become progressively more fatigued, their sleep-wake patterns more random, their coughing and swallowing reflexes slower. They will start to respond less to verbal commands and gentle touch.

Reduced blood flow to the brain or chemical imbalances can also cause a dying person to become disoriented, confused or detached from reality and time. Visions or hallucinations often come into play.

“A lot of people have hallucinations or dreams where they see loved ones,” Professor Boughey says. “It’s a real signal that, even if we can’t see they’re dying, they might be.”

But Professor Boughey says the hallucinations often help a person die more peacefully so it’s best not to “correct” them. “Visions, especially of long-gone loved ones, can be comforting.”

Instead of simply sleeping more, the person’s consciousness may begin to fluctuate, making them nearly impossible to wake at times, even when there is a lot of stimulation around them.

With the slowing in blood circulation, body temperature can begin to seesaw, so a person can be cool to the touch at one point and then hot later on.

Their senses of taste and smell diminish. “People become no longer interested in eating … they physically don’t want to,” Professor Boughey says.

This means urine and bowel movements become less frequent, and urine will be much darker than usual due to lower fluid intake. Some people might start to experience incontinence as muscles deteriorate but absorbent pads and sheets help minimise discomfort.

What happens when death is just hours or minutes away?

As death nears, it’s very common for a person’s breathing to change, sometimes slowing, other times speeding up or becoming noisy and shallow. The changes are triggered by reduction in blood flow, and they’re not painful.

Some people will experience a gurgle-like “death rattle”. “It’s really some secretions sitting in the back of the throat, and the body can no longer shift them,” Professor Boughey says.

An irregular breathing pattern known as Cheyne-Stokes is also often seen in people approaching death: taking one or several breaths followed by a long pause with no breathing at all, then another breath.

“It doesn’t happen to everybody, but it happens in the last hours of life and indicates dying is really front and centre. It usually happens when someone is profoundly unconscious,” Professor Boughey says.

Restlessness affects nearly half of all people who are dying. “The confusion [experienced earlier] can cause restlessness right at the end of life,” Professor Boughey says. “It’s just the natural physiology, the brain is trying to keep functioning.”

Circulation changes also mean a person’s heartbeat becomes fainter while their skin can become mottled or pale grey-blue, particularly on the knees, feet and hands.

Professor Boughey says more perspiration or clamminess may be present, and a person’s eyes can begin to tear or appear glazed over.

Gradually, the person drifts in and out or slips into complete unconsciousness.

How long does dying take? Is it painful?

UNSW Professor of Intensive Care Ken Hillman says when he is treating someone who is going to die, one of the first questions he is inevitably asked is how long the person has to live.

“That is such a difficult question to answer with accuracy. I always put a rider at the end saying it’s unpredictable,” he says.

“Even when we stop treatment, the body can draw on reserves we didn’t know it had. They might live another day, or two days, or two weeks. All we know is, in long-term speaking, they certainly are going to die very soon.”

But he stresses that most expected deaths are not painful. “You gradually become confused, you lose your level of consciousness, and you fade away.”

Should there be any pain, it is relieved with medications such as morphine, which do not interfere with natural dying processes.

“If there is any sign of pain or discomfort, we would always reassure relatives and carers that they will die with dignity, that we don’t stop caring, that we know how to treat it and we continue treatment.”

Professor Boughey agrees, saying the pain instead tends to sit with the loved ones.

“For a dying person there can be a real sense of readiness, like they’re in this safe cocoon, in the last day or two of life.”

Professor Boughey believes there is an element of “letting go” to death.

“We see situations where people seem to hang on for certain things to occur, or to see somebody significant, which then allows them to let go,” he says.

“I’ve seen someone talk to a sibling overseas and then they put the phone down and die.”

How can you ‘prepare’ for death?

Firstly, there is your frame of mind. In thinking about death, it helps to compare it to birth, Professor Boughey says.

“The time of dying is like birth, it can happen over a day or two, but it’s actually the time leading up to it that is the most critical part of the equation,” he says.

With birth, what happens in the nine months leading to the day a baby is born – from the doctor’s appointments to the birth classes – can make a huge difference. And Professor Boughey says it’s “absolutely similar” when someone is facing the end of life.

To Professor Hillman, better understanding the dying process can help us stop treating death as a medical problem to be fixed, and instead as an inevitability that should be as comfortable and peaceful as possible.

Then there are some practicalities to discuss. Seventy per cent of Australians would prefer to die at home but, according to a 2018 Productivity Commission report, less than 10 per cent do. Instead, about half die in hospitals, ending up there because of an illness triggered by disease or age-related frailty (a small percentage die in accident and emergency departments). Another third die in residential aged care, according to data from the Australian Institute of Health and Welfare.

Professor Hillman believes death is over-medicalised, particularly in old age, and he urges families to acknowledge when a loved one is dying and to discuss their wishes: where they want to die, whether they want medical interventions, what they don’t want to happen.

“[Discussing this] can empower people to make their own decisions about how they die,” says Professor Hillman.

Palliative Care Nurses Australia president Jane Phillips says someone’s end-of-life preferences should be understood early but also revisited throughout the dying process as things can change. With the right support systems in place, dying at home can be an option.

“People are not being asked enough where they want to be cared for and where they want to die,” Professor Phillips says. “One of the most important things for families and patients is to have conversations about what their care preferences are.”

How can you help a loved one in their final hours?

Studies show that hearing is the last sense to fade, so people are urged to keep talking calmly and reassuringly to a dying person as it can bring great comfort even if they do not appear to be responding.

“Many people will be unconscious, not able to be roused – but be mindful they can still hear,” Professor Phillips says.

“As a nurse caring for the person, I let them know when I’m there, when I’m about to touch them, I keep talking to them. And I would advise the same to the family as well.”

On his ICU ward, Professor Hillman encourages relatives to “not be afraid of the person on all these machines”.

“Sit next to them, hold their hands, stroke their forehead, talk to them about their garden and pets and assume they are listening,” he says.

Remember that while the physical or mental changes can be distressing to observe, they’re not generally troubling for the person dying. Once families accept this, they can focus on being with their dying loved one.

Professor Boughey says people should think about how the person would habitually like them to act.

“What would you normally do when you’re caring for your loved one? If you like to hold and touch and communicate, do what you would normally do,” he says.

Other things that can comfort a dying person are playing their favourite music, sharing memories, moistening their mouth if it becomes dry, covering them with light blankets if they get cold or damp cloths if they feel hot, keeping the room air fresh, repositioning pillows if they get uncomfortable and gently massaging them. These gestures are simple but their significance should not be underestimated.

What is the moment of death?

In Australia, the moment of death is defined as when either blood circulation or brain function irreversibly cease in a person. Both will eventually happen when someone dies, it’s just a matter of what happens first.

Brain death is less common, and occurs after the brain has been so badly damaged that it swells, cutting off blood flow, and permanently stops, for example following a head injury or a stroke.

The more widespread type of death is circulatory death, where the heart comes to a standstill.

After circulation ceases, the brain then becomes deprived of oxygenated blood and stops functioning.

The precise time it takes for this to happen depends on an individual’s prior condition, says intensive care specialist Dr Matthew Anstey, a clinical senior lecturer at University of Western Australia.

“Let’s say you start slowly getting worse and worse, where your blood pressure is gradually falling before it stops, in that situation your brain is vulnerable already [from reduced blood flow], so it won’t take much to stop the brain,” Dr Anstey says.

“But if it’s a sudden cardiac arrest, the brain could go on a bit longer. It can take a minute or two minutes for brain cells to die when they have no blood flow.”

This means, on some level, the brain remains momentarily active after a circulatory death. And while research in this space is ongoing, Dr Anstey does not believe people would be conscious at this point.

“There is a difference between consciousness and some degree of cellular function,” he says. “I think consciousness is a very complicated higher-order function.”

Cells in other organs – such as the liver and kidneys – are comparatively more resilient and can survive longer without oxygen, Dr Anstey says. This is essential for organ donation, as the organs can remain viable hours after death.

In a palliative care setting, Professor Boughey says the brain usually becomes inactive around the same time as the heart.

But he says that, ultimately, it is the brain’s gradual switching off of various processes – including breathing and circulation – that leads to most deaths.

“Your whole metabolic system is run out of the brain… [It is] directing everything.”

He says it’s why sometimes, just before death, a person can snap into a moment of clarity where they say something to their family. “It can be very profound … it’s like the brain trying one more time.”

What does a dead person look like?

“There is a perceptible change between the living and dying,” Professor Boughey says.

“Often people are watching the breathing and don’t see it. But there is this change where the body no longer is in the presence of the living. It’s still, its colour changes. Things just stop. And it’s usually very, very gentle. It’s not dramatic. I reassure families of that beforehand.”

A typical sign that death has just happened, apart from an absence of breathing and heartbeat, is fixed pupils, which indicate no brain activity. A person’s eyelids may also be half-open, their skin may be pale and waxy-looking, and their mouth may fall open as the jaw relaxes.

Professor Boughey says that only very occasionally will there be an unpleasant occurrence, such as a person vomiting or releasing their bowels but, in most cases, death is peaceful.

And while most loved ones want to be present when death occurs, Professor Boughey says it’s important not to feel guilty if you’re not because it can sometimes happen very suddenly. What’s more important is being present during the lead-up.

What happens next?

Once a person dies, a medical professional must verify the death and sign a certificate confirming it.

“It’s absolutely critical for the family to see … because it signals very clearly the person has died,” says Professor Boughey. “The family may not have started grieving until that point.”

In some cases, organ and tissue donation occurs, but only if the person is eligible and wished to do so. The complexity of the process means it usually only happens out of an intensive care ward.

Professor Boughey stresses that an expected death is not an emergency – police and paramedics don’t need to be called.

After the doctor’s certificate is issued, a funeral company takes the dead person into their care and collects the information needed to register the death. They can also help with newspaper notices or flowers.

But all of this does not need to happen right away, Professor Boughey says. Do what feels right. The moments after death can be tranquil, and you may just want to sit with the person. Or you might want to call others to come, or fulfil cultural wishes.

“There is no reason to take the body away suddenly,” Professor Boughey says.

You might feel despair, you might feel numb, you might feel relief. There is no right or wrong way to feel. As loved ones move through the grieving process, they are reminded support is available – be it from friends, family or health professionals.

Complete Article HERE!

How to avoid regret

What a doctor wishes people knew about living, dying well

By A. Pawlowski

Here’s what really matters at the end of life and how to avoid the biggest regrets.

Life is precious because it ends one day, but death is not the enemy. The enemy is a wasted life.

It’s a message Dr. BJ Miller, a hospice and palliative care specialist in San Francisco, wants people to remember as they come to terms with their mortality. Miller’s own brush with death as a college student left him a triple amputee and an advocate for a dignified end of life.

“There’s no guarantee for tomorrow, ever,” Miller told TODAY.

“Watching my patients die helps me think about what’s important to me in my life. So when it’s my time, hopefully I’ll have fewer regrets and, along the way, I hope to have a more meaningful life thanks to their lessons.”

Miller, co-author of the new book, “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” shared his findings on how to live and die well:

Avoid common and painful regrets at the end of life

Miller: There’s usually regret about having been unkind and selfish. It’s shame around having ever been a jerk to anybody, including to oneself.

One of the things dying teaches you is life goes on outside of you, too. You are a grain of sand among a gazillion grains of sand and the sooner you can delight in life outside of yourself, the better you’ll be able to handle your own death and the kinder, more forgiving you’ll be.

Life is just hard and there’s only so much we can get done in it. Forgiveness ends up being a huge theme. If you find yourself in a petty argument that kept you from re-establishing contact with someone you once loved, those get revealed to be practically almost silly at the end of life and people often regret losing contact.

Participate in your life and your dying

Miller: This is your life. Sometimes patients tell me they got robbed or that this is a huge detour or some anomaly in their life. The reminder is: No, this is your life — this is it. And because time is precious, if you don’t engage with your life on a real level, you are squandering your time.

Be an active participant in your own life in every way, including your illness and your dying, because those are parts of your life — your life while you have it. You don’t need to control everything, just participate.

Remember what people at the end of life care about most

Miller: If someone is lucky enough to have a family or a group of friends who are nearby, one thing a dying person really wants to know is that their loved ones are going to be OK. That they’re going to keep living, keep trying and going to try to love themselves and the world. That’s a really powerful thing.

So as a loved one, one of the kindest things you can do for someone who is dying is to let them know you’re going to take care of yourself. That’s not a selfish thing; that’s something the dying person will often really long to hear.

Take comfort that many people have accepted the end

Miller: In most cases I’ve been involved with, by the time death rolls around, the dying person is often really done with this body, done with this life. And whether by force or by choice, acceptance often does come because the fact of dying becomes just so obvious, it’s just so clearly coming.

Dying is often harder in some ways on the people around the dying person — harder on the people who have to keep living.

Clean out the skeletons in your closet before the end

Miller: There’s a hygiene to the process of dying. You go through life and accumulate all this stuff and all that has to go away when you die. You can leave all this emotional and physical residue of stuff, or you can clean it up and by doing so, leave less of a mess for people who are going to live on.

It’s a cleaner grief, in a way, not complicated by finding old letters with secrets in them that can be a source of torture. If you clean up your life on the way out, it can feel wonderful, it can feel very true and it can be an extremely kind gift.

Keep hope going

Miller: I honestly believe that we as a species will do better if we come to terms with our mortality earlier in life. Get used to exercising hope within the framework of life being short and precious.

If my patients come to me and are losing hope, I’ll say “OK, let’s come to terms with the hope that’s being lost. Let’s grieve that, but now let’s find what we still can hope for.”

As long as you have another breath in you, you can hope for something.

As long as you have another breath in you, you can hope for something: Peace, comfort, the well-being of people you love. It’s always a matter of framing your hope.

Simple pleasures, rather than grand moments, are appreciated at the end of life

Miller: It may be simply going outside and feeling the sun on your skin. A shower can be magical, sunlight can be magical. Just delighting in the cool breeze on your face or the sound of laughter. Very basic primal stuff.

Think about what might happen after death

Miller: If you’re around folks who are taking their final breaths, you can see life going out of somebody. You can tell the body is just a shell, something is gone now. Where does that life go? Is there a soul? Is there a spirit?

I find a joy in not knowing. I know dying, but I don’t know death. My compromise is to embrace the mystery of it all.

Complete Article HERE!

‘I’ve six months to live’ – the words that turned my life upside down

Rachel O’Neill knew her mother had terminal cancer, but there was never a timeline put on it

Rachel O’Neill with her mother Marie: ‘No matter what happens, a mother’s love lasts forever’

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I’ve six months to live.”

Five words that turned my life upside down.

I always knew that terminal cancer was something I would have to deal with. But because there was never a timeline put on it, it was something I didn’t have to think about. Sure, Mum had incurable cancer, but it wasn’t something that was going to affect me right this second.

And then suddenly it was there, affecting every part of my life.

In the time it took to say those five little words, my entire status changed. I was no longer someone whose mother was sick, I was someone whose mother was dying. Life as I knew it was officially on pause.

Suddenly, the “how’s your Mum doing?” questions become a lot harder to answer. I’m a very open person which means everyone tends to know everything that goes on in my life. I’m also a terrible liar. If someone asks me how Mum is doing, I will answer it very honestly. So honestly, that it can make people uncomfortable. I’ve had people squirm after I’ve told them that Mum is dying. I’ve had people shuffle awkwardly from foot to foot, desperately thinking of something to say that won’t upset me or them.

Now I’ve adopted a very simple tactic to counteract the awkwardness. I minimise what’s going on by joking about it instead.

Minimise, minimise, minimise.

Never let people see how badly you are struggling with it. I must never drop the facade that I’m managing to hold it together when in reality this is the worst thing I’ve ever had to face.

To make people comfortable, I tell them that my mother is dying and follow it with a quick “it’s fine”. I’ve joked about how I might finally be able to get on the property ladder with the inheritance. I quickly change the subject when I can feel people getting nervous, even if I’m bursting to talk about what’s happening. I’ve done everything I can to make people feel more comfortable around me because if I can joke about it, it means they can relax a little.

Nobody is truly comfortable with death.

Despite the fact that we “do death well” in Ireland, it’s still a subject that many of us won’t talk about. Confronting the fact that someday, we will cease to be here is something we’ll spend a lifetime trying to come to terms with. Many of us never do.

Knowing that myself and Mum have so little time left together is hard. I am terrified of regret, of saying the wrong thing, of not asking the right questions, of not making enough of our time together. It now feels like every conversation feels like it has to be meaningful in some way. I feel like if a moment with her isn’t memorable, I’ve wasted it. It’s a suffocating pressure to be under.

What has stood out to me is the endless kindness I’ve experienced from every corner of my life

The pressure manifests itself in many ways. For example, I’ve been in a perpetual state of anticipatory grief for the last few months. I’m grieving the life we won’t have together. I’m grieving that she won’t see me get married or meet her grandchildren. I’m grieving the advice she won’t be able to give me, the questions I won’t be able to ask her and the adventures she will never get to have.

That is a very painful process which your body does everything to protect yourself from. I’m constantly tense because I’m bracing myself for an impact that I know is coming, despite not being sure when it’ll hit. I feel like if I can process this pain now, it won’t be as painful when the inevitable comes. It’s the only way I know how to prepare for what’s coming.

Some people struggle to understand my approach. Some have even said to me that I need to move past the grief. They’ve said that my mum needs me to be upbeat and strong for her. To me, that feels fake. Anxiety and depression are in my DNA so worrying about the future and being down about it are things I’m very used to doing. It’s a coping mechanism that some people just don’t understand. They feel that I’m doing Mum a disservice, that I should pretend to be okay when in reality I am struggling badly with everything that’s happening. What I say to those people is that there’s no “right” way to grieve. It’s a uniquely personal process, best left to those undergoing it.

What has stood out to me over the past few months is the endless kindness I’ve experienced from every corner of my life. People offering food, time, shoulders to cry on and a kind ear to listen. People encouraging me to open up when I can and who treat me like a normal human being when I can’t. The empathy and kindness have been utterly overwhelming but serves as a reminder that people really do care. It gives me hope that when I come out the other side of this, I’ll have people who will help me build myself back up again.

Having discussed with Mum what happens when this is all over, she told me something that I’ll hold dear to my heart forever.

“Just let yourself be loved. It’s no more than you deserve and always carry with you that you are my beloved child. Always and forever.”

No matter what happens, a mother’s love lasts forever.

Of that, I am absolutely certain.

Complete Article HERE!

What People Actually Say Before They Die

Insights into the little-studied realm of last words.

By Michael Erard

Mort Felix liked to say that his name, when read as two Latin words, meant “happy death.” When he was sick with the flu, he used to jokingly remind his wife, Susan, that he wanted Beethoven’s “Ode to Joy” played at his deathbed. But when his life’s end arrived at the age of 77, he lay in his study in his Berkeley, California, home, his body besieged by cancer and his consciousness cradled in morphine, uninterested in music and refusing food as he dwindled away over three weeks in 2012. “Enough,” he told Susan. “Thank you, and I love you, and enough.” When she came downstairs the next morning, she found Felix dead.

During those three weeks, Felix had talked. He was a clinical psychologist who had also spent a lifetime writing poetry, and though his end-of-life speech often didn’t make sense, it seemed to draw from his attention to language. “There’s so much so in sorrow,” he said at one point. “Let me down from here,” he said at another. “I’ve lost my modality.” To the surprise of his family members, the lifelong atheist also began hallucinating angels and complaining about the crowded room—even though no one was there.

Felix’s 53-year-old daughter, Lisa Smartt, kept track of his utterances, writing them down as she sat at his bedside in those final days. Smartt majored in linguistics at UC Berkeley in the 1980s and built a career teaching adults to read and write. Transcribing Felix’s ramblings was a sort of coping mechanism for her, she says. Something of a poet herself (as a child, she sold poems, three for a penny, like other children sold lemonade), she appreciated his unmoored syntax and surreal imagery. Smartt also wondered whether her notes had any scientific value, and eventually she wrote a book, Words on the Threshold, published in early 2017, about the linguistic patterns in 2,000 utterances from 181 dying people, including her father.

Despite the limitations of this book, it’s unique—it’s the only published work I could find when I tried to satisfy my curiosity about how people really talk when they die. I knew about collections of “last words,” eloquent and enunciated, but these can’t literally show the linguistic abilities of the dying. It turns out that vanishingly few have ever examined these actual linguistic patterns, and to find any sort of rigor, one has to go back to 1921, to the work of the American anthropologist Arthur MacDonald.

To assess people’s “mental condition just before death,” MacDonald mined last-word anthologies, the only linguistic corpus then available, dividing people into 10 occupational categories (statesmen, philosophers, poets, etc.) and coding their last words as sarcastic, jocose, contented, and so forth. MacDonald found that military men had the “relatively highest number of requests, directions, or admonitions,” while philosophers (who included mathematicians and educators) had the most “questions, answers, and exclamations.” The religious and royalty used the most words to express contentment or discontentment, while the artists and scientists used the fewest.

MacDonald’s work “seems to be the only attempt to evaluate last words by quantifying them, and the results are curious,” wrote the German scholar Karl Guthke in his book Last Words, on Western culture’s long fascination with them. Mainly, MacDonald’s work shows that we need better data about verbal and nonverbal abilities at the end of life. One point that Guthke makes repeatedly is that last words, as anthologized in multiple languages since the 17th century, are artifacts of an era’s concerns and fascinations about death, not “historical facts of documentary status.” They can tell us little about a dying person’s actual ability to communicate.

Some contemporary approaches move beyond the oratorical monologues of yore and focus on emotions and relationships. Books such as Final Gifts, published in 1992 by the hospice nurses Maggie Callanan and Patricia Kelley, and Final Conversations, published in 2007 by Maureen Keeley, a Texas State University communications-studies scholar, and Julie Yingling, professor emerita at Humboldt State University, aim to sharpen the skills of the living for having important, meaningful conversations with the dying. Previous centuries’ focus on last words has ceded space to the contemporary focus on last conversations and even nonverbal interactions. “As the person gets weaker and sleepier, communication with others often becomes more subtle,” Callanan and Kelley write. “Even when people are too weak to speak, or have lost consciousness, they can hear; hearing is the last sense to fade.”

I spoke to Maureen Keeley shortly after the death of George H. W. Bush, whose last words (“I love you, too,” he reportedly told his son, George W. Bush) were widely reported in the media, but she said they should properly be seen in the context of a conversation (“I love you,” the son had said first) as well as all the prior conversations with family members leading up to that point.

At the end of life, Keeley says, the majority of interactions will be nonverbal as the body shuts down and the person lacks the physical strength, and often even the lung capacity, for long utterances. “People will whisper, and they’ll be brief, single words—that’s all they have energy for,” Keeley said. Medications limit communication. So does dry mouth and lack of dentures. She also noted that family members often take advantage of a patient’s comatose state to speak their piece, when the dying person cannot interrupt or object.

Many people die in such silence, particularly if they have advanced dementia or Alzheimer’s that robbed them of language years earlier. For those who do speak, it seems their vernacular is often banal. From a doctor I heard that people often say, “Oh fuck, oh fuck.” Often it’s the names of wives, husbands, children. “A nurse from the hospice told me that the last words of dying men often resembled each other,” wrote Hajo Schumacher in a September essay in Der Spiegel. “Almost everyone is calling for ‘Mommy’ or ‘Mama’ with the last breath.”

It’s still the interactions that fascinate me, partly because their subtle interpersonal textures are lost when they’re written down. A linguist friend of mine, sitting with his dying grandmother, spoke her name. Her eyes opened, she looked at him, and died. What that plain description omits is how he paused when he described the sequence to me, and how his eyes quivered.

But there are no descriptions of the basics of last words or last interactions in the scientific literature. The most linguistic detail exists about delirium, which involves a loss of consciousness, the inability to find words, restlessness, and a withdrawal from social interaction. Delirium strikes people of all ages after surgery and is also common at the end of life, a frequent sign of dehydration and over-sedation. Delirium is so frequent then, wrote the New Zealand psychiatrist Sandy McLeod, that “it may even be regarded as exceptional for patients to remain mentally clear throughout the final stages of malignant illness.” About half of people who recover from postoperative delirium recall the disorienting, fearful experience. In a Swedish study, one patient recalled that “I certainly was somewhat tired after the operation and everything … and I did not know where I was. I thought it became like misty, in some way … the outlines were sort of fuzzy.” How many people are in a similar state as they approach death? We can only guess.

We have a rich picture of the beginnings of language, thanks to decades of scientific research with children, infants, and even babies in the womb. But if you wanted to know how language ends in the dying, there’s next to nothing to look up, only firsthand knowledge gained painfully.

After her father died, Lisa Smartt was left with endless questions about what she had heard him say, and she approached graduate schools, proposing to study last words academically. After being rebuffed, she began interviewing family members and medical staff on her own. That led her to collaborate with Raymond Moody Jr., the Virginia-born psychiatrist best known for his work on “near-death experiences” in a 1975 best-selling book, Life After Life. He has long been interested in what he calls “peri-mortal nonsense” and helped Smartt with the work that became Words on the Threshold, based on her father’s utterances as well as ones she’d collected via a website she called the Final Words Project.

One common pattern she noted was that when her father, Felix, used pronouns such as it and this, they didn’t clearly refer to anything. One time he said, “I want to pull these down to earth somehow … I really don’t know … no more earth binding.” What did these refer to? His sense of his body in space seemed to be shifting. “I got to go down there. I have to go down,” he said, even though there was nothing below him.

He also repeated words and phrases, often ones that made no sense. “The green dimension! The green dimension!” (Repetition is common in the speech of people with dementia and also those who are delirious.) Smartt found that repetitions often expressed themes such as gratitude and resistance to death. But there were also unexpected motifs, such as circles, numbers, and motion. “I’ve got to get off, get off! Off of this life,” Felix had said.

Smartt says she’s been most surprised by narratives in people’s speech that seem to unfold, piecemeal, over days. Early on, one man talked about a train stuck at a station, then days later referred to the repaired train, and then weeks later to how the train was moving northward.

“If you just walk through the room and you heard your loved one talk about ‘Oh, there’s a boxing champion standing by my bed,’ that just sounds like some kind of hallucination,” Smartt says. “But if you see over time that that person has been talking about the boxing champion and having him wearing that, or doing this, you think, Wow, there’s this narrative going on.” She imagines that tracking these story lines could be clinically useful, particularly as the stories moved toward resolution, which might reflect a person’s sense of the impending end.

In Final Gifts, the hospice nurses Callanan and Kelley note that “the dying often use the metaphor of travel to alert those around them that it is time for them to die.” They quote a 17-year-old, dying of cancer, distraught because she can’t find the map. “If I could find the map, I could go home! Where’s the map? I want to go home!” Smartt noted such journey metaphors as well, though she writes that dying people seem to get more metaphorical in general. (However, people with dementia and Alzheimer’s have difficulty understanding figurative language, and anthropologists who study dying in other cultures told me that journey metaphors aren’t prevalent everywhere.)

Even basic descriptions of language at the end of life would not only advance linguistic understanding but also provide a host of benefits to those who work with the dying, and to the dying themselves. Experts told me that a more detailed road map of changes could help counter people’s fear of death and provide them with some sense of control. It could also offer insight into how to communicate better with the dying. Differences in cultural metaphors could be included in training for hospice nurses who may not share the same cultural frame as their patients.

End-of-life communication will only become more relevant as life lengthens and deaths happen more frequently in institutions. Most people in developed countries won’t die as quickly and abruptly as their ancestors did. Thanks to medical advances and preventive care, a majority of people will likely die from either some sort of cancer, some sort of organ disease (foremost being cardiovascular disease), or simply advanced age. Those deaths will often be long and slow, and will likely take place in hospitals, hospices, or nursing homes overseen by teams of medical experts. And people can participate in decisions about their care only while they are able to communicate. More knowledge about how language ends and how the dying communicate would give patients more agency for a longer period of time.

But studying language and interaction at the end of life remains a challenge, because of cultural taboos about death and ethical concerns about having scientists at a dying person’s bedside. Experts also pointed out to me that each death is unique, which presents a variability that science has difficulty grappling with.

And in the health-care realm, the priorities are defined by doctors. “I think that work that is more squarely focused on describing communication patterns and behaviors is much harder to get funded because agencies like NCI prioritize research that directly reduces suffering from cancer, such as interventions to improve palliative-care communication,” says Wen-ying Sylvia Chou, a program director in the Behavioral Research Program at the National Cancer Institute of the National Institutes of Health, who oversees funding on patient-doctor communication at the end of life.

Despite the faults of Smartt’s book (it doesn’t control for things such as medication, for one thing, and it’s colored by an interest in the afterlife), it takes a big step toward building a corpus of data and looking for patterns. This is the same first step that child-language studies took in its early days. That field didn’t take off until natural historians of the 19th century, most notably Charles Darwin, began writing down things their children said and did. (In 1877, Darwin published a biographical sketch about his son, William, noting his first word: mum.) Such “diary studies,” as they were called, eventually led to a more systematic approach, and early child-language research has itself moved away from solely studying first words.

“Famous last words” are the cornerstone of a romantic vision of death—one that falsely promises a final burst of lucidity and meaning before a person passes. “The process of dying is still very profound, but it’s a very different kind of profoundness,” says Bob Parker, the chief compliance officer of the home health agency Intrepid USA. “Last words—it doesn’t happen like the movies. That’s not how patients die.” We are beginning to understand that final interactions, if they happen at all, will look and sound very different.

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‘The most peaceful sleep’

Cancer is nudging me to picture dying in a new way

By Adam Philip Stern

“It was the most peaceful sleep.” That’s how my paternal grandmother referred to the time she was technically dead for several minutes before doctors shocked her back to life. She lived another decade after that, but never once to my knowledge expressed a fear of dying.

As I trained to become a physician-scientist with a focus on neuropsychiatric disorders, I often thought of my grandmother’s description of temporary death. I learned that there were credible physiologic explanations for her to have experienced death as an immensely restful sleep.

It’s an idea that resonates even more strongly with me since I was diagnosed with metastatic kidney cancer. I fervently hope my superstar medical team will help me outrun this disease for many years to come, but I must also face the possibility that I could die young. That initially frightened me in the expected ways. What does it feel like to die? What if I experience a bad death with tubes going into or coming out of every orifice, or my ribs being cracked as doctors try to restart my heart?

A recent experience with an endoscopy to find the source of cramping and vomiting after I ate muted those fears. As I laid on the gurney, the nurse let me know I would soon be getting medicine through the intravenous line: a little something to help me relax, to prevent pain, and to have no memory of the procedure, during which I would be partly awake.

As the fentanyl and midazolam began flowing into my vein, the last memory I had is feeling totally at peace. It was the most content I can ever recall feeling. I am thankful to have never struggled with addiction, but that moment gave me a better understanding of why people seek such a feeling no matter the cost.

What has stuck with me since that procedure is the sense that leaving the world does not have to be gruesome, and might even be the best feeling ever, just like my grandmother described it.

There are, of course, physiologic explanations for why peace may accompany dying.

As the brain begins to adapt to oxygen deprivation, its noncritical regions begin to shut down, turning off for individuals who are actively dying the burdens of complex neurologic tasks like risk aversion, problem solving, and anticipatory worry that weigh on us during our waking lives. While these brain activities keep us alert and feeling attached to our bodies, tamping them down may account for the feeling of lightness, even floating above the body, which many near-death survivors describe.

The classic “death rattle” heard when the body can no longer clear fluids from the airway, often seen as a gruesome sign, is likely a signal of a transition to such a relaxed, unfettered state that the brain is no longer burdened with that task.

The emotional centers within the brain, however, are so deeply engrained in our functioning as humans that they remain on and engaged throughout much of the dying process. That aligns with descriptions of near-death experiences of vivid and realistic interactions with loved ones who have passed.

Even as death approaches and the body and brain are shutting down, there is good evidence to suggest that individuals are aware of their surroundings and can hear and feel the presence of their loved ones. These basic sensations persist in ways that can be a gift to dying individuals, ensuring they are not alone in their last moments — a most common fear.

Palliative care and hospice are stigmatized in our society because they are so closely associated with death, a topic that tends to make people uncomfortable. My attitude toward them has shifted dramatically since my diagnosis. With their focus entirely on providing comfort and maximizing quality of life — even in death — I think they play a most important role and intend to do everything in my power to engage in that process when I need it.

My maternal grandfather died two years ago at the age of 93, just before I learned I had cancer. He used to tell me he “wasn’t afraid of death, just all the things that [he] would miss.”

I think of him whenever something happens to me that would have sparked joy in him, and wish he was still alive. I’m not sure I believed him when he told me he wasn’t afraid of dying, but I do now. What frightens me today has little to do with my death and much more to do with the moments I’ll miss afterwards: anniversaries with my wife, birthdays and graduations with my son, watching my parents age and my brother and other loved ones continue to blossom in their lives.

I can’t say if this perspective will change again. I imagine it will. Death as an abstract concept is probably a lot less terrifying than staring it in the face. But I’ll remember what my grandparents said and try to move forward with the same kind of contented pragmatism they shared with me. In the interim, devoted oncology researchers, my particularly skilled doctors, and I are doing our absolute best to keep these musings firmly in the academic realm.

Complete Article HERE!

‘It’s confusing as hell’…

91-year-old was told he was dying, said his goodbyes — and then learned he’ll live

Phil Robinson finds comfort in the chance to watch the squirrels and birds at his home, after being mistakenly told he had only weeks to live last month.

By Erin Brohman

When Phil Robinson, 91, was told cancer had spread through his lungs and he had mere weeks left to live, he said his goodbyes, got his affairs in order and was prepared to die — until doctors told him he was, in fact, cancer-free and could return home.

“I don’t know where I’m going from here. I really don’t know how to handle this at all,” said Robinson.

“I don’t think most people get this chance at all. Never.”

Robinson went to Winnipeg’s St. Boniface Hospital on March 20 because he was having trouble breathing. After several tests, he was diagnosed with pneumonia and admitted to a ward, where he started treatment.

A doctor visited him the next morning with grave news: results of a scan appeared to show the spread of cancer throughout his chest. Cancer in his neck that he’d had radiation treatment for nine years earlier, it seemed, had spread.

“He said, ‘Phil, you’ve got two to three weeks to live.'” 

My doctor came round and he said, ‘Oh, Phil. I have one small problem. We made a mistake.’

– Phil Robinson

Robinson, a widower of about 10 years, had his son, 60, with him at the time. Robinson didn’t want to alarm him.

“I said, ‘Well, we’ve got to do something about it.'”

Over the following two weeks, all of Robinson’s friends and family came to his bedside to pay their respects and say goodbye. The hospital chaplain visited him. It took some time for him to get there, but Robinson eventually asked to speak to the medical assistance in dying, or MAID, team.

“I had a wish, because pushing sort of 92 years old, you don’t really mind. You’re due to go if you’re ready to go,” he said. “I wanted to finish it right now and get it out of the way.”

‘We made a mistake’

But a definitive diagnosis of cancer was required before he could be offered medically assisted death, so he went for another CT scan. A different doctor delivered the results.

“He said, ‘Oh, Phil. I have one small problem. We made a mistake. You do not have cancer through your body,'” Robinson said. 

“‘You don’t have this anymore, and you never had.'”

“Oh!” he laughed nervously, recalling the moment.

“So all of a sudden I find that my cancer is still exactly where it was around my neck, it’s never moved to anywhere else, and it did leave you in a complete sort of — you don’t know where the hell you go.”

According to the hospital discharge summary, the second CT scan showed his lungs and lymphatic areas had cleared. The signs of the infection — which was originally believed to be cancer — had cleared on the second scan.

His son took him back home on April 8.

“[Robinson had] been seen by the palliative team but now discharged as it appears he has no cancer,” reads his discharge summary.

CBC contacted the Winnipeg Regional Health Authority to ask why additional tests after the first CT scan appear not to have been done before Robinson was told he had only weeks left to live.

A spokesperson for the WRHA said it cannot comment on Robinson’s situation for privacy reasons, and that no critical incident report has been filed.

Robinson has been in touch with CancerCare’s patient relations department to get answers. He hopes someone can offer him some guidance.

‘They’re thrilled that I’m back’

“I am not dying. Nope. I’m here for the long run. I don’t know how long that’s going to be, but I’m here,” Robinson said with a chuckle, then gestured out his window. He’s discovered a newfound easy connection with the backyard wildlife.

“Look at my squirrel — he’s sitting out there on the little thing. You can’t see him, but he’s sitting there, watching us.”

Once home, Phil began sharing the news that he was in fact still around with his friends and family, as well as home-care workers and even the two ladies who clip his nails every two weeks, who visited him in hospital to say goodbye.

“I had hugs like you wouldn’t believe,” he said with a laugh. “They all have the same response. They’re thrilled that I’m back.”

But for Robinson, it’s a bit more complicated, especially when he’s alone with his thoughts. He already faced the difficult task of saying goodbye to everyone he loves: 24 family members and 12 of his ‘secondary family’ of supportive friends, until he couldn’t bear the sadness of repeat visits.

He reflects on his own vitality. At 16, Robinson was a member of the U.K.’s Royal Navy during the Second World War, bringing supplies and refreshments to troops. He travelled from his home in Norwich, England after the war to join the Canadian Army, serving in the Korean War, before joining British Airways as a traffic assistant, and later a pilot for the military.

In his lifetime, he’s lost two wives, two siblings and two of three children to cancer.

“I accept the fact that I’m not dead. But now I’m just scared that I’m going to get sick or something, and everybody will say, ‘He’s dead again. And we’ve already done this.’ It’s confusing as hell.”

Robinson sits on his back patio every afternoon where things are certain: the chirp of birds at the feeder, the sociable squirrels, a rabbit who drops by each day.

“How many people do you know who died and came back? And particularly it was Easter,” he laughed, with a tear in his eye.

Complete Article HERE!