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!

3 Benefits Of Thinking About Your Mortality At Least Once A Day

By Shoshana Ungerleider, M.D.

As a culture, Americans—more often than not—have a tendency to avoid thinking and talking about death and dying. Yet pondering our mortality can have a profound impact on our lives.

Our health care system is set up with a single, default pathway for all medical care: aggressive, invasive treatment, no matter how old or how sick you are. For some people, this makes perfect sense and can save lives. For others, a different approach to care is required. But it starts with having a relationship with our own mortality and reflecting on what matters most in our own lives. I have seen far too many people suffer by receiving treatment that is not in line with their goals and values.

In our modern era of fast-paced life, constant digital connectedness, and a culture striving to be “doing” all the time, it’s easy to get caught up in things that don’t matter. If we can reflect on the bigger picture in life, the preciousness of each moment, we can more easily let go of things that aren’t important. I believe there are three key benefits to thinking about our mortality at least once a day:

1. You’ll be motivated to leave a legacy.

Ask yourself, what do you want to leave behind? The idea of legacy awareness is a way to connect with our own mortality as it relates to our work, loved ones, and creative endeavors. If we think about legacy as a means to transcend death, we may be more likely to invest in our health and personal development throughout life. 

Artists, for example, live on long after they’re gone thanks to their creative legacy. That’s just one way of forming a legacy. Whether you are creating art, giving back to your community, raising a family, or making a positive impact on the lives of others, these are all powerful ways to leave a legacy for generations to come.

2. Life will instantly feel more precious.

Too much of a good thing decreases its value. Life is precious. It’s also temporary. Even when you’re young and healthy, your life could end unexpectedly at any time. Recognizing that life is fleeting helps us find joy and meaning in the small things—sunset and sunrise, a smile on your child’s face, a tree in the park—that sometimes get lost in the day-to-day. The people in your life can take on a new value because we realize that their lives are also temporary.

3. You’ll learn not to sweat the small stuff.

Thinking about our mortality can serve as inspiration to think more holistically about what it means to live our best life. In other words, it can move us to exercise and eat well because we only get one body. And at the same time, it’s an invaluable reminder that we only get one life, and we better enjoy it. So many of us are on a quest to find balance in our lives and define our own priorities. Remembering that we have this one life to live can help when weighing where we want to put our energy and attention.

Countless psychological studies have shown that a recognition of our own eventual ending can allow us to live a richer life—one filled with gratitude, presence of mind, and happiness. As you go through the checklist of factors contributing to your overall well-being—getting quality sleep, eating healthy food, exercising regularly, and sustaining meaningful relationships—make sure that forming a relationship with your own mortality is high on the list.

No one knew how important this practice was better than Apple’s Steve Jobs who, during his 2005 commencement speech at Stanford University, said, “Almost everything—all external expectations, all pride, all fear of embarrassment or failure—these things just fall away in the face of death, leaving only what is truly important.”

If contemplating your mortality triggers fear, consider this.

Does thinking about our own death trigger fear? According to the 2017 Survey of American Fears conducted by Chapman University, 20.3% of Americans are “afraid” or “very afraid” of dying. While for some, fear of death is healthy as it makes us more cautious (such as wearing seat belts and minimizing high-risk behaviors), some people may also have an unhealthy fear of dying, which interferes with their daily life.

Psychologist and spirituality expert Stephen Taylor looked at those who lost loved ones, and many tend to have a more accepting attitude toward death. This may result from “post-traumatic growth,” or personal growth from trauma. Others suggest that much of our fear of death stems from not wanting to lose the things we’ve built up (i.e., relationships, possessions, or status). By letting go (even a little) of fierce attachments, it can allow for valuable shifts in perspective and benefits to our well-being. 

My friend and colleague, B.J. Miller, M.D., puts this in a different light. “Death is not at odds with living. You can’t get one without the other.” Whether we like it or not, death is always present. Connecting to the fact that life is defined by the fact that it will end one day will allow you to live more fully, experience deeper relationships, and provide new meaning to your days.

Next time you have the opportunity to reflect on your mortality, think about how it might enrich your life today.

Complete Article HERE!

Death and learning to understand it

Dying is a social not a medical event. We must accept it as part of life’s narrative

“Nobody knows what dying is like. Everybody is terrified, nobody is talking about it, everybody thinks they know what it’s like, and everybody thinks it is awful.”

By June Shannon

“How people die lives on in the memory of those who live on.” – Dame Cicely Saunders,, founder of the modern hospice movement.

Do you know what dying looks like? Do you want to know?

A lot of people are afraid of death and dying, yet like birth, it is one of life’s most natural processes. We don’t talk about it, but it happens to us all, and if we are very lucky, it occurs at the end of a long and happy life.

For many who fear death it is perhaps the fear of the unknown that is most terrifying, and it is that fear that Dr Kathryn Mannix, former palliative care physician, author and full-time campaigner for better public understanding of dying, is working to ease by encouraging us all to “narrate dying”.

Speaking to The Irish Times, Dr Mannix said that after 30 years in palliative care she found she was having the same conversations with unprepared families and terrified people with terminal illnesses, whose image of dying came only from television and films which did not reflect reality. She said people generally, had no idea what the “normal, relatively predictable and usually, fairly comfortable process dying is actually like”.

She recalled meeting the adult retired sons of a father in his late 90s who was dying and none of them knew what their father’s wishes were. She described them as “panic-stricken” when asked how or where their father wished to die. A number of the sons who were in their 70s, confessed that their father had in the past tried to share his wishes for the end of his life with his sons, but they refused to discuss it and jokingly admonished him for being morbid.

“This made me realise that we can’t keep doing this to our families,” Dr Mannix said. “This is a national public health problem. In fact, it is an international public health problem that people in parts of the world that have highly developed and sophisticated and accessible to everybody medicine, have forgotten what normal dying looks like.”

Planning for death

According to Dr Mannix, nowadays the tendency in modern health systems to call an ambulance to bring everyone who is very sick and may die, to a hospital full of technology that might just save their lives, which, she acknowledged was wonderful if it worked, meant that nobody knows what normal death looks like. “So now nobody knows what dying is like. Everybody is terrified, nobody is talking about it, everybody thinks they know what it’s like, and everybody thinks it is awful. And actually, if they were less afraid, they would be able to sit down and have those conversations and plan better and die better,” she said.

Instead of putting off what may seem like a difficult conversation until it is too late, Dr Mannix suggested that we should all know more about dying and start planning for our own deaths while we are well. “We should all be thinking about how we would like our dying to be, where, who would be our companions,” she said.

She added that these plans can be tweaked with time and suggested that we should be having these conversations around any birthday that falls on the five times table after the age of 50.

Dr Mannix explained that like birth, which starts with labour pains and progresses through a predictable sequence of events, the process of dying also involves an anticipated sequence of events that are very similar from one person to the next, irrespective of what they are dying from.

“Just like every woman who has ever given birth to a baby feels she has had a particular unique experience, every midwife who has attended that woman has been through the same process that she always has. Because it’s the individual who makes it individual, it is not the process . . . every person who is dying is having their own unique, individual, personal family experience but those of us who are caring for them are seeing the same sequence of events time after time,” she said.

Steps of process

When Dr Mannix meets a patient who expresses a fear of being in pain or distressed when they die, she gently asks if they would like her to explain the process of dying to them and tells them that if they find it too distressing, they can ask her to stop at any time.

Nobody has ever asked Dr Mannix to stop.

She said that when people learn what really happens when we die, they don’t find it terrifying, on the contrary they see it as compelling and comforting.

“I tell somebody and then there is a long pause, usually when I dry my eyes . . . and then they say ‘That’s not what I was expecting, can you tell my wife that? Can you tell my dad that, can you tell my kids that?’ and, ‘That’s wonderful I want my family to know it will be a comfort’.”

By understanding the dying process, grieving families will take the comfort of witnessing their loved one experience normal, gentle dying into their bereavement with them.

Dr Mannix explained that at the end of our lives we simply get more tired and need to sleep more.

As the illness state advances and death becomes closer, the periods of being awake get less and the periods of sleep get longer. Eventually, she said there comes a time when a patient is so deeply unconscious that they cannot be woken. When they do wake up later on, they report that they had a good sleep. Therefore, Dr Mannix said we know that being unconscious is not unpleasant for people.

She explained that when a person is unconscious, medical staff can continue to give them their regular medication to help ease the symptoms of their disease, such as breathlessness or pain, via an injection or syringe pump rather than in tablet form.

“They sleep more, they are awake less. We change the route of the medicines, but it isn’t the medicines making people sleep, it’s the illness, it’s the process of dying and at the very end of people’s lives they lapse into unconsciousness,” she said.

Unconscious state

Dr Mannix explained that this unconsciousness doesn’t feel like falling asleep and the person is not aware that it is happening.

Once the person is completely unconscious the only part of the brain that still functions is that which drives breathing which then becomes completely automatic.

She explained that at this point a person’s breathing alternates between cycles of deep and shallow breathing.

She also pointed out that in this deeply unconscious state, the dying person is not aware of their vocal cords. However, when they breathe out through their vocal cords it can make a noise and family members may fear that this is the sound of their loved one groaning or sighing in distress.

The so-called “death rattle” people hear can also be explained. This too is all part of the dying process and occurs because the dying person is so unconscious that they can no longer cough or swallow to clear normal secretions like saliva or mucus from the back of their throat.

“We would normally cough or splutter or gag if anything is touching the back of our throat because it is a reflex to preserve our lives. Once you are deeply unconscious, all of those sensations are just lost and we tolerate that . . . because you are breathing, the air is going in and out, it makes that funny clicking noise that you would normally never hear in any other circumstances because, in any other circumstances people would clear their throat,” she explained.

Dr Mannix said it was important to remind families that this was automatic breathing because when someone is deeply unconscious, they cannot feel distress.

“As time goes by the breathing gets slower, there are pauses and then eventually there will be an outbreath which doesn’t seem any different to any other out breath, but there just isn’t an inbreath afterwards. It’s as gentle as that.”

“You can’t stop death from being sad. If we love people, then death is a terrible blow – it is a very great sadness. But we can stop it from being terrifying.”

According to Dr Mannix, 100 years ago we would never have spoken about childbirth in public, but we would have all known about dying and she believes it is time for lay people to reclaim death and dying.

Death bed

While Dr Mannix acknowledged that GPs, community nurses and palliative care specialists would always have a role in the dying process, to help ease symptoms and ensure that the person is as comfortable as possible, she said that dying was not a medical matter but rather a social one.

Therefore, she was appealing to medicine to “give dying back to everyone”. “People will only understand what is happening around the death bed if we narrate it,” she said.

By helping grieving families understand the dying process, this will allow them to take the comfort of witnessing their loved one experience normal, gentle dying into their bereavement with them, Dr Mannix said.

“You can’t stop it from being sad. If we love people, then death is a terrible blow – it is a very great sadness. But we can stop it from being terrifying. We can give people the knowledge that they need to be with people who are dying.”

Dr Mannix’s book With the End in Mind: Dying, Death and Wisdom in an Age of Denial was shortlisted for the 2018 Wellcome Book Prize and she is one of a number of speakers due to address the annual dotMD conference which takes place in Galway in September.

Hailed as a festival of medical curiosity and known by some as the Electric Picnic of medical conferences, dotMD is a celebration of the heart of medicine. dotMD is curated by Dr Ronan Kavanagh, consultant rheumatologist; Dr Muiris Houston, GP and medical journalist and writer; and Dr Alan Coss, consultant gastroenterologist.

The purpose of this highly popular event which, for the first time in its seven-year history is taking place outside Dublin, is to expose doctors, medical students and other healthcare professionals to the ideas taking place at the interface between medicine, the humanities and technology.

Themes included in this year’s two-day dotMD meeting in Galway on Friday, September 13th and Saturday, September 14th, include, jazz, death, art, stories and zombies.

Complete Article HERE!

How to cope with grief

 ‘Give your child honest answers about death’

By Tanya Sweeney

Experts say confronting grief and being honest about loss is best for children

Between the rough and tumble of early life, we soon find that children are more resilient than we think. Yet when it comes to a hurdle as big as death, our instincts might just be to carry them away from it all and to shield them from the enormity of the loss.

Years ago, this was very much the norm if a young child experienced the death of a loved one. No doubt people’s hearts were very much in the right place, and these actions come from a protective and loving instinct.

Yet experts believe that confronting the situation head on with the unadorned truth is a better start on a child’s grief journey.

Theresa Kavanagh is a support worker at the Limerick-based Children’s Grief Centre, who provide a listening service to children and young adults experiencing the death of a loved one, parental separation or other form of grief.

“It’s quite amazing how parents feel they’re protecting their child when they don’t allow them to participate in rituals like wakes or funerals, but a child has the right to say goodbye to the person they love,” she notes. “Children need, want and deserve the truth. Children are so perceptive. It’s amazing how much they know and how strong they can be,” she says. “I’ve heard of children being told that ‘Mammy is asleep’, while another little girl was told that her granny went on holidays and never came back. The problem is that younger children go into magical thinking and make things up. If they’re sent away in the event of a death, or not talked to properly, they will always blame themselves, even if the death is from something like cancer.

“I remember one young boy’s mother died of an accidental drug overdose, and he said, ‘I thought it happened because I was bold’. That’s why it’s so important to have open conversations, and also to validate how they themselves feel.”

Often, this can be easier said than done for adults who are also forging their own journey of grief and coping with loss. Often, it can be the first time that a parent or guardian finds themselves in that situation, so it’s entirely natural that uncertainty would reign.

“If a parent can express how they feel, it’s important to say ‘it’s sad, but I’m a grown up and I can look after myself’,” notes Kavanagh. “It’s interesting, a lot of parents haven’t dealt with their grief before they come to the centre, and it’s only when they’re here that they realise that. Parents and children seeking help at the same time can really help the healing process.”

Ann D’Arcy is a Senior Social Worker and Bereavement Coordinator at Our Lady’s Hospice and Care Services, Dublin, who has been offering workshops for bereaved children and their guardians for 14 years.

She notes that the grief journey for children is very different to that of adults.

“A child can’t sustain the depths of emotional pain for the same lengths of time,” she explains. “One minute they are talking about death, the next they’re back on their bikes or PlayStation as if nothing happened. But that doesn’t mean they’re not grieving.

“A very little child may listen to this and run off, and a parent might think they either didn’t take it all in, or the conversation is done, but with a young child developmentally, they’ll find it difficult to understand permanency,” explains D’Arcy. “They’ll often keep coming back to ask the same questions over and over again, trying to make sense of it. It’s important to remember you didn’t do it wrong in the first place. They will just need to talk about it over and over again to understand. It’s important to give a child the space, and permission, to grieve however they might like.

“We need to remember that grieving is normal, and most children are going to feel sad, angry and lonely. You might find that many children will express that physically — they’ll be more tired or experience tummy pains or headaches. Some regress to a younger age,” notes D’Arcy.

“The other thing that often happens is that they are terrified of losing their surviving family member. Most of the children I meet will want to ‘protect’ their surviving family members, and often won’t tell them how they really feel for that reason.”

Death really is the ultimate wrong-footer, and for that reason, grieving children often need to be grounded with certainties.

“Children need information on what happened around the death, but also reassurance that their meals will be given to them, school will still be there, and people will still love them,” says D’Arcy.

Offering children some sense of control over the situation offers them a valuable coping skill: “For one child, talking and looking at old photos is really important, for another, it’s too much and they don’t want to have that reminder in every room. It’s about negotiating that,” says D’Arcy. “Give the child a choice on whether they would like to view the body, and how they would like the loss to be acknowledged. Do they want something said in class for instance, or would they rather it wasn’t mentioned? Will they want to participate in Father’s Day?”

When discussing death or loss with children of all ages, the expert advice to do away with euphemisms and explain the situation in clear language.

“It’s always about giving very factual information to a child, and that’s why we recommend using words like ‘dead’ or ‘death’ and to explain what they mean,” observes D’Arcy. “It’s a very abstract concept for a child. Explain to them that when a person dies, they no longer feel anything. They’re no longer thirsty, cold, hungry, in pain, sad. It may look like a person is asleep, but the body stops working and the heart stops working.

“Be very, very concrete. Coming from a faith perspective, some people will believe the soul or spirit has gone to heaven, but just remember that young children will see that as a concrete place, and will probably ask when they can visit, or why the person won’t come back.

“If a child is seeing their loved one’s body, explain beforehand that their body might feel cold, and look a little different than usual,” adds D’Arcy.

Conversations for very young children need to be similarly concrete, though it may take them more time to assimilate the enormity of the situation. “If a child is asking the questions, it’s important to give the honest answer, really,” surmises D’Arcy. “It’s better to have had that conversation from someone they love, rather than hearing it in the school playground.”

Complete Article HERE!

How Attending A Death Cafe Helped Me Heal After My Grandmother’s Death

I found myself opening up to strangers about death and finding a sense of comfort in the process.

By

On the last day of my grandmother’s life six years ago in fall 2014, I hugged her goodbye after an afternoon at my grandparents’ home in South Florida and expected to see her for lunch the following day. However, I woke up the next morning to the news that my grandmother had died suddenly in her sleep. Instead of meeting up for lunch, my family called to make funeral arrangements. I rescheduled my flight and figured out bereavement days with my job at the time. Because I was on vacation, I thankfully had time to spend with my grandmother during her last unexpected days. The shock from finding out she had died lasted through the week and well beyond her funeral.

After her death, I flew back to New York City to return to what remained of my old life. I’d wanted to leave everything I knew and loved behind and embark on an adventure to a place where I knew no one and recognized nothing. In winter 2015 I’d finally had enough courage and money saved up to visit Iceland on a solo trip for my grandmother’s belated deathiversary. I didn’t expect to find a group of Americans and road trip around the southern coast of Iceland and fall in love with traveling alone, a new part of my life my grandmother will never know.

Every year since my grandmother’s death, without fail, I panic around her deathiversary. How could I commemorate her and the impact she had on my life? In the years since Iceland, I’ve talked with family, went to yoga and stayed low-key. In 2018, four years after she died, I thought I’d go on another solo trip because I wasn’t working and had the time to travel.

However, instead of traveling, I did something different and more close to home. I attended a Death Cafe, where strangers gathered together to talk about death in a supportive environment, at a cemetery in Brooklyn on a cold autumn weeknight. I was intrigued about going to a cemetery where the topic of conversation revolved around death. It wasn’t like death was a hot topic of conversation for small talk, so I didn’t really have the opportunity to bring up death on a whim to friends and family, specifically my grandmother’s death, which happened years ago. I wasn’t sure what to expect or how much I would even talk about such an intimate part of my life with people I didn’t know. Once inside the crematory’s chapel, I noticed a small group of people gathered around trays of cookies and water bottles. The director introduced herself and the backstory of the Death Cafe and then separated us into smaller groups.

My group chose a private back room with urns lining the walls. We pulled our chairs together in a circle and introduced ourselves. The conversation started with why we were there and why we decided to attend a Death Cafe and then expanded to religion, stories of loved ones and friends and their passing and then to the beyond: What happens after we die? Is it good that we don’t know what happens? What would happen if we did? One girl asked how grief changes over time, and how grief changes people. We sat in reflective silence and I thought about the week after my grandmother died when I needed to be around only close friends and family. All of my senses had been muted. I lived life that week in quiet contemplation surrounded by familiarity, the exact opposite experience I was having at the Death Cafe: alone and surrounded by strangers.

After we rejoined the main group, the organizer shared two poems about death with us before concluding the Death Cafe. I felt a sense of peace at having talked about my grandmother to a group of strangers and keeping my memory of her alive. After my grandmother’s death, I was so angry at how she died. The director spoke of a good death and what that means, and my mom, after my grandmother died, had also mentioned that it was a good death. I’ve realized I was upset at the way my grandmother passed and, in a way, of our unfinished conversation. Never saying goodbye and never having that final lunch together.

In the years since my grandmother’s death, I needed to confront my ideas about life, death and everything in between and beyond. I needed the space to talk to people who hadn’t moved on because they didn’t have a starting point to move on from. I found myself opening up to these people and becoming more intimate the further our conversations progressed. After all, how do we talk about death when death is such a taboo topic to talk about?

My grandmother’s presence is still here, in the jewelry and pictures and memories left behind. Attending a Death Cafe provided a space of comfort and allowed me to talk openly and freely about my thoughts and feelings to strangers, and since then, family and friends, about all aspects of death in an open manner. My grandmother’s deathiversary, I’ve come to realize after leaving the Death Cafe, is another day that comes and goes with the passing of time. While my grandmother’s death came as a shock, the ending of her life came, as my mom said, as a mercy to her. A good death to a good person, and these realizations came from open conversations about death.

Complete Article HERE!

Kathy Brandt, A Hospice Expert Who Invited The World Into Her Own Last Days With Cancer, Dies

In January, Kathy Brandt (right) was diagnosed with stage 3 ovarian clear cell carcinoma and learned she had mere months to live. She is pursuing aggressive palliative care, forgoing treatments such as chemotherapy or radiation.

by JoNel Aleccia

Kathy Brandt, a hospice industry leader who turned her own terminal cancer diagnosis into a public conversation about choices at the end of life, died Aug. 4. She was 54.

Brandt’s death was announced on social media by her wife and partner of 18 years, Kimberly Acquaviva, 47, a professor of nursing and author of a book about hospice care for LGBTQ patients and families.

“I wanted all of you to know that Kathy had a peaceful death and your love and support is what made that possible,” Acquaviva wrote in comments posted to Facebook. “Our family has felt your love and we can’t begin to tell you how much it’s meant to us.”

Brandt died at the Charlottesville, Va., home she shared with her wife, their 19-year-old son, Greyson Acquaviva, and their dogs, Dizzy and Mitzi. She was diagnosed in January with stage 3 ovarian clear cell carcinoma, a rare and aggressive cancer.

For the past several months, Brandt and Acquaviva chronicled the day-to-day drama of dying in a series of frank, intimate posts on Facebook and Twitter aimed at demystifying the process and empowering other patients.

After researching her disease, which has a median prognosis of less than 13 months and often fails to respond to chemotherapy, Brandt refused drug treatment, declining what she regarded as “futile” medicine. Instead, she chose aggressive palliative care to manage her symptoms, to the dismay of some friends and family — and even her oncologist.

“If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?” Brandt told Kaiser Health News in April.

The couple’s posts were followed by hundreds of well-wishers who donated more than $80,000 to help defray living expenses and medical costs. The essays and tweets were an unusually intimate window into the physical, emotional and psychological process of dying.

In April, Brandt described herself as a “dead woman walking” on the sidewalks of Washington, D.C., where they lived until June.

“It’s surreal trying to go about a ‘normal’ life when you know you aren’t going to be around in a few months,” she wrote.

During the last weeks of Brandt’s illness, Acquaviva tweeted about her partner’s bowels, posted photos of her sleeping and shared that Brandt was distressed about what would happen to her and to her family when she died. The frank posts prompted concern from people who asked whether Brandt had consented to have her death live-tweeted for the world. Acquaviva replied:

“My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”

A well-known hospice industry leader and consultant, Brandt spent three decades in the field and was most recently tapped to write and edit the latest version of clinical guidelines for quality palliative care.

The willingness of Brandt and Acquaviva to share an unflinching account of terminal cancer drew praise from fellow hospice and palliative care experts, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization and their longtime friend.

“As she did throughout her professional career, Kathy has continued to teach the field about compassionate care and patient self-determination,” he wrote in an email before her death.

Elena Prendergast, an assistant professor of nursing at Augusta University in Georgia, wrote that she was moved by their experience.

“I have gone through this with family and with patients, but somehow you both have found a way. With your humor and raw transparency, you both make me feel like I am learning about this process for the first time,” Prendergast tweeted last month.

Brandt remained passionate about encouraging patients to consider the full range of choices when confronting terminal illness.

“If you’re ever diagnosed with a disease that will ultimately kill you no matter what you do, think through what you want the rest of your life to look like,” she wrote in a July 11 email. “Then seek out care that will help you make that version a reality.”

Acquaviva said they had worried that Brandt would not receive the care they’d hoped for in a hospice setting — despite their long efforts to advocate for better conditions for LGBTQ people.

In a post on their gofundme page, Acquaviva urged: “Do whatever you can to ensure that ALL LGBTQ+ people — not just those who know who to call or what to ask for — have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence.”

Brandt asked that her obituary appear in The New York Times. It is scheduled to run next weekend, Acquaviva said, and it includes a final request that nods to the activism that characterized Brandt’s work on behalf of LGBTQ people and others who need end-of-life care.

“From the time that Kathy was diagnosed with clear cell ovarian cancer six months ago, she was clear with her family that the cause of death should be listed as the Trump Presidency in her obituary. In lieu of flowers, the family asks that donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”

A memorial for Brandt will be held at 2 p.m. Oct. 26 at Friends Meeting of Washington, 2111 Florida Ave. NW, Washington, D.C. 20008.

Complete Article HERE!

Students learn to care for dying people

Matthew Cullen, a Union College student volunteers at the Joan Nicole Prince Home, plays cards with resident Bob Humphrey.

by Sara Foss

When I ask Matthew Cullen to share one of his favorite experiences volunteering at the Joan Nicole Prince Home, his answer surprises me.

“Giving my first bed bath,” he says.

When you give a bed bath, “you use a wash cloth to wash a patient’s body,” Cullen explains, adding, “The residents are really grateful for it. One resident told me, ‘Thank you for that. I feel much better.’

This is the third summer that Cullen, a senior at Union College, has spent caring for dying residents at the Joan Nicole Prince Home in Scotia.

His shifts are a mix of mundane tasks aimed at making residents more comfortable and keeping them company. Sometimes that involves chatting at the kitchen table. Sometimes it involves sitting quietly while they rest or sleep.

“A lot of time I’m the only person here,” says Cullen, a native of Guilderland.

Helping terminally ill patients live their final days in peace and comfort might sound like a lot of responsibility for a 21-year-old college student.

But Cullen is more than up to the challenge. The ebullient red-head speaks of his work at the Joan Nicole Prince Home with insight, compassion, even wisdom.

“It can be sad sometimes, but the great majority of the time, it’s happy,” Cullen says. “The patients are sharing their memories and stories with you, and you’re doing the same.

Cullen isn’t the only college student who spends his summers volunteering at the Joan Nicole Prince Home.

He’s enrolled in a unique summer program, called CARE (Community Action Research and Education), that sends college students to volunteer in residential homes for the dying, which provide free, round-the-clock bedside care to terminally ill patients whose families are unable to care for them.

CARE got its start at Union College five years ago, and has steadily evolved since then.

It is now offered in partnership with Skidmore College, and open to students from a handful of other schools, such as Siena College.

This summer there are 13 students volunteering at four different residential homes for the dying: the Joan Nicole Prince Home, Gateway House of Peace in Ballston Spa, Mary’s Haven in Saratoga Springs and Hospeace House in Naples.

“These students are seeing the dying process as it happens,” Carol Weisse, the Union College professor who founded CARE, told me.

But it isn’t all gloom and doom.

Far from it.

“There’s joy in these homes,” Weisse said. “For the students to see that, it makes death less frightening.”

Residential homes for the dying — also known as comfort care homes — serve a noble purpose.

The staff and volunteers at these facilities become a kind of surrogate family for residents, doing “everything a family member would do,” said Weisse, who directs Union’s Pre-Health Professions Program and is herself a longtime hospice volunteer.

Everyone deserves good end-of-life care, and residential homes for the dying ensure that people with little in the way of resources can get it. If anything, we need more of these homes — and more volunteers to keep them running.

CARE was initially geared toward students planning careers in health care.

The idea, Weisse told me, was to give undergraduates who might one day treat dying patients a better sense of how to communicate with and care for those with no hope for recovery. These days, CARE is open to any student with an interest in end-of-life care and a willingness to commit to the research project.

The Joan Nicole Prince Home is bright and cheery, with a back porch, meditation garden, living room and kitchen where executive director Amanda Neveu is baking cookies during my visit with Cullen. The home can accommodate two patients at a time, and each have their own bedroom and bathroom.

Neveu told me that residents — neither of whom are able to speak to me — enjoy speaking with younger people.

“It’s a legacy thing,” she said. “They want to share their stories and have them live on.”

Cullen is planning to go to medical school, as is Nurupa Ramkissoon, a 19-year-old Union College junior and Schenectady High School graduate who has spent her summer volunteering at the Joan Nicole Prince Home through the CARE program.

“It’s definitely been a little sad,” Ramkisson said. “The people who come here are very sweet, and you spend so much time with them. … There’s one resident who likes teaching, and she’s teaching us how to cook. It’s making her feel comfortable, like it’s her home.”

Weisse said her goal is to “cultivate a community of compassionate caregivers,” which sounds like a good goal to me.

At some point, every one of us is going to need a compassionate caregiver, and training students to step into this role could have lasting benefits.

Weisse believes she has created a program that could be implemented at residential homes for the dying all over the country.

“My hope and my dream is that this can spread,” she said.

And with any luck, it will.

Complete Article HERE!