‘Behind Every COVID-19 Case, There Is A Story’
By Ryan Kellman and Kristen Radtke
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By Ryan Kellman and Kristen Radtke
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As Canada’s population ages, there is increasing demand on our health-care system. A simple blood test may help doctors predict who is at risk of imminent death, according to a study published Monday in the Canadian Medical Association Journal.
Dr. Stig Bojesen and colleagues from the University of Copenhagen studied 108,135 Danish people ages 20 to 100 years who were part of the Copenhagen General Population Study. During the study period, a total of 10,372 people died. The researchers combed through the health records of those who died in search of abnormal blood test results.
They found that the people who died during the study period had lower levels of a white blood cell called a lymphocyte. The researchers crunched the numbers. Compared with those with a normal lymphocyte count, those patients with a low lymphocyte count were 1.6 times more likely to die during the study period.
There are several possible ways in which a low lymphocyte count might be connected to an early demise.
One clue is that the current study found that a low lymphocyte count was associated with an increased risk of death from cancer, cardiovascular disease, respiratory disease, infections and other causes. These are chronic diseases that are common in older patients.
Lymphocytes are part of the immune system and the immune system is necessary to help patients fight off chronic diseases. The researchers speculated that a weak immune system might be one of the reasons why diseases like cancer and respiratory disease are more common the older we get.
Another theory is that a low lymphocyte count might indicate that the patient is frail. We know from other research that frailty can lead to illness and death.
The lymphocyte count is not the only blood test that can help predict the risk of dying.
A number of studies have looked at another simple blood test called C reactive protein or CRP. Elevated levels of CRP are associated with increased risk of imminent death. A recent study found that patients in Japan who come to the emergency department with a heart attack and who have a high CRP level are more likely to die during the ensuing hospital stay.
A 2019 study in the journal Nature Communications identified 14 new biomarkers that can be measured in the bloodstream that could predict the risk of dying within five or 10 years. The study found these tests would likely be more accurate than the conventional risk factors (for example, smoking and heart disease) that doctors use currently.
The researchers say they hope the findings help doctors identify patients at risk of death within two years. Such patients might be followed more closely for signs of life-threatening illnesses and perhaps treated more aggressively. Patients could then be re-tested to see if the lymphocyte count, CRP and other blood tests returned to normal levels as the imminent risk of death is reduced.
Down the road, researchers say they would like to use those abnormal tests and biomarkers to design targeted treatments that might stave off death.
It’s worth keeping in mind that studies like this one confirm what doctors already know. Studies show that doctors are good at identifying patients whose imminent death would not surprise them.
I think patients and their families might be very surprised that their doctors believe them at imminent risk of dying. I believe doctors need to share that information with patients and families to encourage them to live healthier or at very least prepare them for what lies ahead.
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When Rosemary Bowen hurt her back last fall, she was diagnosed with a spinal compression fracture, a common injury for people with osteoporosis. At 94, the retired school reading specialist was active and socially engaged in her Friendship Heights neighborhood, swimming each day, cooking and cleaning for herself, and participating in walking groups, a book club and a poetry cafe. Doctors assured her that with physical therapy and a back brace, she would probably recover in about three months.
Instead, she announced to her family and friends that she had decided to terminate her life by fasting. After saying her goodbyes, she stopped eating, and in the early morning of the eighth day of her fast, she died in her sleep.
But first, Rosemary asked her daughter, Mary Beth Bowen, to film her fast. The final week of her life is now documented, day by day, in a 16-minute film, which was shown publicly for the first time Saturday at the End of Life Expo hosted by Iona Senior Services in Tenleytown.
It may sound macabre to hold a camera up to a dying woman. But Mary Beth said her mother wanted to spread the word that there was a legal, relatively pain-free way to end one’s life. “She thought that more people should take advantage of it,” she said. “She wanted to show people that it could be peaceful and even joyful.”
Rosemary’s plan didn’t completely surprise her family. She had lived through the Depression, when her father lost his job and moved the family to their grandmother’s farmhouse in Magnolia, Wis. Perhaps because of that experience, she was horrified by the idea of imposing on others, even temporarily, to the point where she would stay in a hotel rather than with family. “For all my life, she used to say, ‘People should row their own boats,’ ” Mary Beth said.
Rosemary had seen friends in their 90s who had slowly declined, and as far back as 1979 she wrote about her aversion to an old age with loved ones “shuffling in and out of rest homes visiting me.” When a friend ended her life by fasting, Rosemary decided someday she would do the same.
“At every family reunion she would talk about it — ‘When I get to the point where I can’t care for myself, then I’m going to hasten my death through fasting,’ ” Mary Beth said. “… She said, ‘Old Eskimos, they would just go off and die,’ and she thought that made so much sense.”
After her injury she spent two weeks at a rehab facility, and her daughters talked her into trying out an assisted-living facility. But she hated that she needed help with basic tasks such as cleaning herself, and after two days there she decided to go through with the fast.
Family members begged her to reconsider. Didn’t she want to see her great-grandchildren start to grow up, Mary Beth asked. One of Rosemary’s daughters said she was hurt that Rosemary would not stick around to see her granddaughter graduate.
But Rosemary was adamant. “She said, ‘I’m sorry, but I have to do what’s right for me,’ ” Mary Beth said.
Rosemary would have preferred to take a pill to quickly end her life, but only a handful of states have aid-in-dying laws, and Maryland is not one of them, though it came close to passing such a bill earlier this year. Fasting, or Voluntarily Stopping Eating and Drinking (VSED), is not prohibited by any state.
There is no count of how many people choose this route, but it is gradually entering the public conversation. Radio host Diane Rehm revealed on a 2014 segment that her husband, who had suffered from Parkinson’s disease, had brought about his own death by fasting.
Depending on the person’s health and other circumstances, it can take from a few days to a few weeks before death occurs, according to published studies on the method. Refraining from drinking liquids can significantly hasten the process, as a person can survive for a long time by fasting alone. Proper mouth care is essential for a comfortable death, including keeping the person’s lips moist. Aggressive treatment for pain should also be available.
In a 2015 study, 80 percent of family physicians in the Netherlands who had treated VSED cases said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time until death was seven days. Doctors reported that 14 percent of their patients suffered pain in their final three days, and smaller percentages experienced fatigue, impaired cognitive functioning, delirium, and thirst or dry throat.
The results were similar to that of a 2003 study in which hospice nurses in Oregon were asked if they had treated patients who chose to stop eating and drinking. Eighty-five percent of those patients died within 15 days, and the nurses’ median score for the quality of their deaths, on a scale from 0 (a very bad death) to 9 (a very good death), was 8.
Even so, many advocates for aid-in-dying laws argue that people should not have to draw out their own deaths in such a way. Rehm made that argument vociferously after the death of John Rehm, who chose VSED after his doctor said he couldn’t give him drugs to end his life.
The next step after Rosemary decided she wanted to end her life was getting into a hospice program so she could receive aggressive pain medication and other support during the fast. Although she did not technically qualify for hospice since she didn’t have a terminal illness, an Iona staff member helped find one willing to accept her.
In the days leading up to her fast, Rosemary said goodbye to close friends and family members, and started eating half-size meals. Her last meal, for dinner on Dec. 5, was crab cakes. The next day, she stopped eating — and her daughter started filming.
The first scene shows Rosemary smiling, propped up against a blue satin pillow, her short gray hair framing her face. “I am leaving life with great joy,” she says. “I cannot tell you how content I am and I recommend it highly to do it this way. Be in control. Don’t let people decide anything about you and keep you doing a lot of procedures that are not going to benefit your health at all. Just get on with it and go.”
On Day 3 Rosemary says she feels “Okay. Good. Happy. Relieved.” On Day 4, her voice is still strong, and she has returned from walking down the hall with her walker.
Around then, Rosemary became impatient. She felt fine — too fine — and wondered why death was taking so long. Her daughter pointed out that she was still having small sips of water each day with a pill. So she stopped that, instead relying on tiny wet sponges to hydrate her mouth.
By Day 5, her voice cracks as she reports feeling “weaker, and I’m delighted.”
On Day 6, Mary Beth breaks from her neutral observer role and asks if her mother has any regrets about what she’s doing.
“Absolutely none,” Rosemary says.
“But you know that I would much rather have you live for another year or two,” Mary Beth says.
“Oh God,” her mother says with a grimace.
The film does not skip over difficult parts, including the last day Rosemary is conscious, when her mind starts to wander as her organs shut down, and she slips into a deep sleep.
In the audience at Iona, the film elicited mixed reactions.
Gerry Rebach, a former hospice nurse whose mother hastened her death with a fast that took 21 days, said, “It’s not easy, and this movie made it seem easy. I would hate for it to give false impressions.”
Rebach said she cannot imagine herself following her mother’s example. “I think it takes an incredible act of will to be sentient and be able to do that.”
Jean McNelis, a Friendship Heights resident who was friends with Rosemary for 20 years and watched the film Saturday, said she is in the process of figuring out details of her living will, will, and power of attorney. “I don’t have any opinion formed yet about what I want,” she said. “She gave me things to think about.”
Carol Morgan, 78, of Columbia Heights, was upset by the film. Her mother had also fasted to hasten her death in 2006. “It broke my heart,” Morgan said. “I couldn’t bear to see it. … There’s something in me that rebels against it.”
For Mary Beth, the filming was excruciating. She would mostly hold her tears back when she was with her mother, then burst into sobs in the parking garage.
But she saw how happy Rosemary was with her decision. “I felt so gratified that I was helping her on this journey that she was on,” she said. “We were in it together. We’ve always been close, but we became even closer. We’ve never been closer than that last week.”
In the end, helping her mother end her life felt like a sacrament. And filming it felt empowering. Since Rosemary’s death, several of her mother’s friends have told her they are considering following her example, she said.
When Esther Delaplaine, 95, a friend and neighbor, visited Rosemary during her fast, she said, “I had a chance to tell her … how her manner of going was a guide to me in some future that I would be facing.”
That was what Rosemary was hoping for. In the final scene of the film, she can be heard saying, “I feel so privileged to be exiting life like this, and think of all those people who are wringing their hands and saying ‘If only God would take me,’ and all they need to do is give God a little help by holding back on eating and drinking.”
By then, the bed is empty, the blue satin pillow still on it.
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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.
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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?
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.
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.
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.
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.”
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.”
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.
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.”
“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.
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.
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By A. Pawlowski
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:
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.
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.
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.
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.
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.
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.
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.
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.
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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.
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