How to sit with someone who’s dying

Don’t feel you have to hold back your emotions during this time.

By Carol Rääbus and Roisin McCann

When his grandfather died in the emergency department of a Hobart hospital, Andreas was by his side.

“I was really frightened.”

It was Andreas’s first experience of being with a dying person and it made him anxious.

“As his breathing slowed down and he was taking less and less breaths, I was worried about how I was going to feel when he didn’t take any more,” he says.

“And then he had one final really deep inhale and exhale, and it was fine.

“I wasn’t panicked at all. I thought ‘Oh, it’s not weird’.

“Death isn’t weird at all, really. It’s quite normal and kind of OK.”

The idea of sitting with someone who’s dying, particularly when they’re someone you care about, is something many of us find overwhelming.

What’s going to happen? Should you talk about the football? Ask them what they want at their funeral? How you can make granddad feel more comfortable?

We asked a range of people, who regularly spend time with those who are at the end of their lives, to share what they’ve learnt about being with someone who’s dying.

When should I visit someone in hospital or hospice?

Hospice volunteer Debra Reeves says her first bit of advice is to find out when you’re allowed to visit a hospital ward or facility.

Hospital wards often have compulsory quiet hours when no-one is allowed to visit, and those hours are often different from ward to ward in the same hospital.

Check in with a nurse, or someone who’s been there a while, to find out if the person you want to see is up for visitors. The same goes for visiting someone in their own home — always check if it’s a good time for you to be there.

Should I bring food, photos or mementos?

Again, check first. Ask what the rules are at the facility beforehand, or ask the person whose home it is.

Smells can be strongly linked to memories, so if you know your grandma, for example, always loved the smell of roses, take them in.

End of Life Doula Leigh Connell recommends not wearing strong perfumes as they can be overwhelming.

Bringing food is often one of the first things we think of as a way of comforting someone. Depending on the situation, the person might not be able to eat something you bring, but the gesture can still be appreciated.

“If you know they like the smell of mandarins, take mandarins, even if they don’t get to eat them,” Leigh says.

Meaningful photos and items can be comforting for the person, but don’t take in too many things and make clutter.

What should I say?

Spending time with a dying loved one can be scary, but worth it for them and you.

Not knowing what to say is one thing many people in this situation worry about.

Those who spend a lot of time with the dying all tend to say the same thing — you don’t need to say anything.

“Don’t say a lot. Let them talk,” Maria Pate from Hospice Volunteers says.

“Or let the silence be there.”

Launceston priest Father Mark Freeman says often simply being in the room can be enough comfort for the person.

“Often that presence is a reassurance to them that things are all OK,” he says.

If being silent and still is difficult, you could take something with you to keep yourself busy.

Leigh’s suggestion is to try something you know the person liked doing — playing cards or knitting. Even if you’re not good at the activity, it can make a connection.

Andreas’s advice is to be open and admit you’re scared.

“If you’re not comfortable talking to someone who has a terminal diagnosis, maybe just say, ‘I’m having trouble with this’,” he says.

Should I hug them if they look frail?

Giving a loved one a hug is often the quickest way to let them know you care.

But if you’ve never hugged your uncle before, don’t feel you have to.

Though it can be intimidating when someone is particularly frail, a gentle touch of the hand can bring a lot of peace.

Gentle touch, like holding a hand, can be enough to let someone know you’re there and you care.

Maria recommends a very gentle hand massage as a way of making connection and comforting someone.

Father Mark agrees.

“This lady was fairly well out of it, I went to talk to her, [took her hand] and she opened her eyes and looked at me — and had never met me before — and said, ‘Oh Father, thanks for coming’,” he says.

Again, it’s a good idea to ask for permission before touching someone. They might not be in the mood, or might be experiencing pain and not want any touch.

I think they’re dying now. What do I do?

Until you’ve gone through it, none us really know how we will react if we’re there at the time someone’s life ends.

Father Mark’s advice to families he visits is to “embrace the reality” of what’s happening and allow themselves to feel.

“They don’t have to panic [about the fact] that they just want to cry, or they’re so frustrated and they’re sad and hurt, and angry even,” he says.

“All those things can be a part of it.”

Father Mark says he encourages families to stay in the room if possible and be a part of what’s happening. Often what’s happening is not much at all.

Debra was with a family in an aged care facility when their loved one was dying.

“They went straight into storytelling,” she says.

“He was already unconscious. His fingers were already turning black.

“They held vigil, they talked around the bed. They used his name a lot and they talked to him.

“They gave him the most beautiful farewell. It was lovely.”

No-one is dying yet. But can I be prepared when it comes?

Sometimes we don’t get any opportunities to sit with someone before they die — death can sometimes come when no-one is expecting it or ready for it.

Spending time with strangers who are dying has given our interviewees a sense of wanting to make sure they and their families are as ready as possible for that moment.

Their advice is to think ahead now.

“I’m going to make that advanced care directive, I’m going to write that will,” Debra says.

“And I’m going to resolve those relationships so that when I am on my deathbed, I’m at peace. And my family can be at peace as well.”

Complete Article HERE!

Palliative care for the living — more education is needed

A pregnant mother’s 20-week ultrasound often brings feelings of elation and anticipation as she learns the baby’s sex or sees the baby move in her belly.

But when that ultrasound shows a heart defect in her unborn child that will require multiple surgeries and could cause learning difficulties, necessitate a heart transplant, or even lead to an early death, everything changes for her and for her family. Expectations of the future start to change.

Children with complicated medical problems such as heart defects, severe seizure disorders or cancer need care from multiple specialists over their lifetime. As specialists in pediatric cardiology and pediatric intensive care medicine, we have seen too often that one key group — the palliative care team — is often not included.

One reason for this is that many people inaccurately think of palliative care as only care for the dying.

The National Consensus Project for Quality Palliative Care describes palliative care as an interdisciplinary approach to “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.” There is no mention of dying, death or end-of-life care.

Important legislation under consideration now seeks to expand opportunities for interdisciplinary education, training and research in palliative care. The Palliative Care and Hospice Education and Training Act recently passed the U.S. House of Representatives and is headed to the Senate. This legislation will support educational efforts that inform patients and health-care providers about the benefits of palliative care in supporting individuals with serious illness.

People with complicated medical problems and serious illness need medical specialists. Just as heart doctors treat heart problems and lung doctors treat lung problems, palliative care treats the suffering that results from serious illness.

Sometimes the reasons for suffering are obvious, as with a cancer patient’s excruciating bone pain or unending nausea. Palliative care providers use both medications and less conventional treatments, such as acupuncture or music therapy, to alleviate difficult-to-control symptoms.

Other times, suffering from serious illness can’t be seen easily. A new study published in BMJ (originally the British Medical Journal) found that 20 percent of patients with cancer have depression and 10 percent have anxiety. Often unnoticed or sometimes ignored, these complications can decrease survival.

To be sure, suffering comes in many forms – physical, emotional, spiritual. Many contend that physicians should focus on things such as physical bodily pain, and leave more existential suffering to chaplains or other religious figures. That is why palliative care requires an interdisciplinary team that includes social workers, chaplains, music and art therapists, nurses, physicians and others.

But palliative care providers can only help if they are invited to participate. Some physicians and parents may avoid introducing palliative care because they feel it is tantamount to “giving up hope.”

Yet, in some cases, palliative care may help extend life. In a study in China of adults with metastatic non–small-cell lung cancer, those who received early palliative care lived longer than those who received standard cancer care.

Such improved outcomes are not limited to the patients themselves. A new study published in Cardiology in the Young showed that mothers of children with a serious congenital heart defect (called hypoplastic left heart syndrome) who received early palliative care had less anxiety and improved family relationships compared to mothers who received regular care.

While some physicians may resist involving palliative care, many patients report they are open to the idea. A recent study of oncology patients published in the Journal of American Medical Association network showed, “very few patients or parents in this study expressed negative attitudes toward early palliative care.”

Of course, many patients with serious illness may not need palliative care. Some health-care providers might want to manage all aspects of their patients’ care. Certainly, all physician should have skills to treat difficult symptoms, address emotional challenges, and conduct difficult conversations. But as decision making and suffering become more and more complicated, involving clinicians with specific expertise can make a huge difference.

Unfortunately, access to quality palliative care services is lacking. One-third, or 802 U.S. hospitals with 50 or more beds, report no palliative care services. The Center to Advance Palliative Care gave one-third of states a grade of C or D based on inadequate access to palliative care.

To improve access to palliative care, more health-care providers need this training. According to the data from the National Palliative Care Registry, 1 to 1.8 million patients who could benefit from palliative care services, are not receiving it.

Just 140 existing palliative care training programs graduate only 360 physicians yearly. This is nowhere near enough providers to meet this massive unmet need. And one study published in Palliative Medicine shows that the need will double by 2040.

Fortunately, clinicians and families don’t need to participate in formal training programs to access palliative care education. The National Institutes of Health has a campaign to improve understanding for both patients and providers.

The American Academy of Hospice and Palliative Medicine website provides links to research, videos, training options, and more. The Center to AdvancePalliative Care provides tools, training, and technical assistance to build and sustain palliative care in all health care settings.

Palliative care must not be an afterthought, or a consideration after all other possibilities in care are exhausted. It is urgent that palliative care be accessible to everyone regardless of age at the onset of medical treatment. That way patients can be offered the best possible care and outcomes.

Complete Article HERE!

Does facing death teach us how to live a richer life?

“I’m a lot more compassionate now compared to what I was, and I’m softer in my approach.”

By Dilvin Yasa

In her lengthy career as a palliative care nurse, Elizabeth Barton has seen it all. From the guys who buy brand-new sports cars mere days before they die – “Just so they can say they had one” – to the long-lost relationships rekindled on deathbeds, little surprises her about the way we “do” death any more.

“Everyone’s different; those who have faith don’t appear to fear death as much and, of course, many speak of regrets,” says Barton. “But if there’s one thing that remains consistent about the final journey people make towards death, it’s that it’s always characteristic of the way they lived life.”

While many of us would rather not think about the reality that one day it will be our turn to be tapped on the shoulder (the fact that almost 50 per cent of Australians die intestate – that is, without a will – points to our avoidance), there is much that death and dying can teach us about living well, says Barton.

“It’s a time when people realise that the thing they value most is their human relationships. The most common lament I hear is how they wished they’d focused on spending more time with people. I’ve yet to hear a single person say, ‘Gee, I wish I’d put in more overtime at the office.’ It’s a message worth remembering while you’re still fit and healthy.”

“I FEEL LOVED EVERY SINGLE DAY”
Keely Bennett is a 43-year-old mother of two young daughters (aged nine and seven) who is battling stage-four metastatic breast cancer. In 2011, she was given two months to live.

Keely Bennett is a 43-year-old mother of two young daughters.

“The cancer had already spread all over my body – from my liver and lungs to my spine, collar bone and pelvis – by the time they found it in 2011. I was still on maternity leave with our youngest daughter so, like most mums looking after babies, I’d found ways to explain away the fatigue, breast tenderness and back pain I’d been feeling. When the nausea began, I thought it was an indication that our longed-for third baby was on its way, but nothing could have prepared me for the truth. My prognosis was two months – tops.

After 18 months we realised my battle might not end as quickly as doctors had initially anticipated. Among other issues I had chemo, an operation for brain lesions, a total hip replacement, a battle with a flesh-eating disease and radiation for a hip fracture. I didn’t have time to dwell too deeply on what my prognosis actually meant. Will-making took some encouragement by my oncology psychologist because I felt that by writing one, I was admitting defeat. I was not – and am not – ready to die.

The hardest part of living with a terminal illness is trying to find balance between being present here, today, with my family, but also planning for a future where I can no longer be by their side. I have to make the assumption that I won’t see my girls grow up, so it’s about asking myself on a daily basis, ‘Do I write them letters now for their 18th birthdays, or just go out with them and play?’

The cancer keeps finding new ways to come back, so treatment often feels like we’re playing whack-a-mole to buy extra time, but I’m focused on living today very, very well. Last year, we made a trip to Iceland, my bucket-list destination, and we’ve also taken the girls to Europe and to Disneyland. They were things we always planned to do ‘one day’, but now I know ‘one day’ doesn’t happen for everybody.

Obviously I’d change everything in a heartbeat to not have cancer, but knowing my time is limited has given me a gratitude and appreciation for what’s truly important in life. When healthy, many of us dream of a bigger house or a nicer car, but when you’re battling to live, you realise that the only thing that’s worth anything is love.

You work on your relationships, you make an effort to see more of your friends and family, and you become acutely aware of what you feel for others. More than that, you get insight into what others feel for you. I’ve always known I was loved, but now I hear it, see it and feel it every day. Yes, it’s unfortunate that this is often what it takes for people to freely say ‘I love you’, but what a joy to be able to hear and experience it.”

“FEAR CAN BE REDIRECTED”
Broadcaster and journalist Julie McCrossin, 63, was diagnosed with stage-four oropharyngeal cancer in 2013. Having celebrated five years of recovery, she’s taking the fight to a larger audience.

Broadcaster and journalist Julie McCrossin, 63.

“I faced the possibility of death head-on from day one – probably because my radiation oncologist said, ‘Julie, I expect you to live, but I won’t be surprised if you die.’ I respected him for that, but it still didn’t make my oropharyngeal cancer diagnosis any easier. What did was when he followed with, ‘Look, you’re in with a good chance – and you have a good support network.’ I looked over at my partner Melissa crying next to me and realised, ‘Yes, I may die, but I have to do everything I possibly can to stay alive.’

I felt I was engaged in a battle of survival, and what helped me get through it was thinking about my father, Robert, who was a World War II bomber pilot. I found radiotherapy devastatingly challenging, so I would focus on the fact my father survived 30 tours of duty in a position which had a very high death rate. By chance, I had 30 sessions of radiotherapy.

Once you’ve been touched by death, you’re never truly the same person again. I’ve just celebrated the five-year anniversary of my recovery, but the fear of recurrence continues. To counteract that, I’ve become heavily involved with patient advocacy, which has been a deeply positive experience. It calms me and brings me joy in ways I never could have imagined.

My battle with cancer has taught me that life is precious beyond words, and you’ll do anything to be able to stay and enjoy it for a little longer.”

Julie is an ambassador for Beyond Five – Targeting Cancer and TROG Cancer Research, and hosts the Cancer Council NSW podcast series The Thing About Cancer, which can be found at cancercouncil.com.au/podcasts. For more information about cancer, visit cancercouncil.com.au.

“I’VE LEARNT THAT JOY CAN COME WITH FORGIVENESS”

Irene Hellas, 46, lost her partner George to suicide in 2012, prompting a long period of soul-searching. She now works with Suicide Prevention Australia.

Irene Hellas, 46.

“Ten days before George took his own life, he began a period of what he called ‘spring cleaning’. It started with a furious reorganisation of his paperwork and finances, and ended with phone calls to family and friends to offload some of his most prized possessions. Looking back now, I realise he was getting his affairs in order before he went, but although I was rattled at the time, I just didn’t know how to ask the question, ‘Are you okay?’

When I went to his house and he didn’t open the door, it couldn’t have occurred to me what was on the other side. George had never shown any sign of mental illness. His death, and the way in which he went, derailed all of us.

My dreams died with George that night. We had planned to get married and start a family, but suddenly I was alone. I was angry at life, angry at myself and angry at George for leaving me. I began retreating inward and letting my feelings consume my life, so when a friend insisted I seek help, I reluctantly agreed.

I began working one-on-one with a psychologist, attended seminars, had some life coaching and read books like This Is How We Grow, by Dr Christina Hibbert. There’s a line in that book which quickly became my personal motto: “When life throws you in the mud, plant yourself and grow.”

It was a five-year period of soul-searching before I realised that all the signs were pointing to forgiveness and finding a new purpose. Once I was able to forgive George for what he had done to me by leaving the way he did, the release everyone said would eventually happen occurred. I began to feel a strong gratitude for George and the gift he had given me by being in my life for as long as he was.

Before George’s death, I had a lot of masculine energy; I was harsh and didn’t demonstrate empathy towards others the way I could have. I’m a lot more compassionate now compared to what I was. I’m softer in my approach, in touch with my feelings, and I stress a lot less about the things I know don’t really matter.

George’s death had me questioning my purpose for a long time, but ultimately I’ve found it. I now volunteer regularly, and I’m dedicated to working with Suicide Prevention Australia to help raise awareness that most suicides are preventable. Joy, I now know, is looking outward, contributing to society and helping others, and true joy can only ever start with self-love.”

Irene is a member of Suicide Prevention Australia’s Lived Experience Network. Visit suicidepreventionaust.org to find out how to get involved and access a comprehensive list of support services.

Complete Article HERE!

We took a snapshot of the last year of people’s lives – here’s what we found

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Sorry to be the bearer of bad news – sooner or later, we’ll all reach the end of our lives. Many of us are not keen to face this event, nor the time that comes directly before. It’s actually hard to say what is the bigger taboo, death or the personal care that most of us receive in our final days and weeks.

According to the Health Organisation, more than half of us die of an illness that requires some form of end of life care. Depending on your definitions, the figure can be much higher – a German study found it to be more like four out of five, which is in line with findings from my work in Scotland. Either way, care providers expect the absolute numbers of people in Western countries in need of end of life care to keep growing as populations continue to grow older in future.

As you might expect, older people have a higher chance of developing ailments that need care. The group of those experiencing a long period of dwindling physical and mental faculties due to frail old age or dementia is already rising: according to the death records that we examined in Scotland, for example, it doubled from 5.1% in 2001-02 to 9.7% in 2011-12, and dementia rates have continued to increase. The share of people undergoing shorter periods of decline, such as cancer patients, rose to 29.5% of all deaths in 2011-12. These numbers are slightly higher than many other countries, but roughly comparable.

Given these figures, you may wonder: what is life like at its end? Do people receive the care and support they need? The answer is, not everyone does. My colleague Iain Atherton and I mapped the last year of people’s lives in Scotland using a mixture of census data NHS data, and death records. Here’s what we found out.

Deprivation and being alone

We looked at all 53,517 people who died in Scotland within a year of the last census in 2011. About one in five were below pension age, half were aged 65-84, and just under a third were 85 or older. Every third person lived alone, and around 40% were widowed. Not the ideal situation when you need care.

The closer people were to dying, the more likely they were to have moved in with others. This varied by neighbourhood deprivation, however. In more deprived areas, 37% of people aged 70 and over – those most likely to need care – still lived alone, even in the last four weeks of their lives. In the least deprived areas, the rate was 25%. (In this age group as a whole, 18% of people died in a care home.)

To my knowledge, nobody has come up with directly comparable figures for other countries. From Eurostat data from 2014, though, we do know that 32% of over-65s in the EU live alone, for example, and that the UK is almost exactly in line with the average.

Let’s be honest: few people find the idea of living alone in old age appealing, no matter what their health status. In many cases, it goes hand-in-hand with depending on external services for care – strangers that invade the innermost sphere of your privacy. It’s probably one of the major reasons why people don’t like talking about this stage of life.

Consider new options

Yet if we want to make our last months and years of life less bleak, talking and acting is exactly what we need to do. As I have just discussed at a show at the Edinburgh Fringe on the subject, we should consider new options. We need to think outside the box, and ensure that we are the decision makers instead of being pushed back into the role of dependent.

Are retirement villages an option, for example? Or better still, housing complexes with people from different generations, where even a frail grandad can help the neighbour’s boy with his homework and still feel part of the community? Or can you band together with some friends, either in one house or in adjacent flats?

Bicep building.

In many cases, care decisions are made ad hoc, because an immediate solution is required. When your mother has had yet another fall and it’s clear she can no longer stay on her own and needs a care home bed in two days when she comes out of the hospital, there is no time to find the best home for her. You must take the place that is available.

Isn’t it funny that many of us tend to take out life insurance in case we die prematurely but don’t make provisions for the very likely possibility that we’ll need care? I doubt you look forward to your care home stay, the tightly scheduled visit of the district nurse, or the look on the face of your children when they need to decide whether they want to sell the house they grew up in to pay for better care for you.

Rich or poor, man or woman, the clock is ticking for all of us. Too many older people are facing the most vulnerable stage in their adult lives alone, and the next generation needs to find ways of avoiding this situation. It’s not to say that governments and healthcare providers shouldn’t take responsibility for care – they do anyway – but if we blindly rely on them to provide, there are limits to what we will receive. Before it’s too late, it’s better that we also come up with plans of our own.

Complete Article HERE!

Death doulas explain why everyone should have an end-of-life plan

Death doula Carmen Barnsley thinks people should talk more about death and be more informed about their options.

By Nicole Mills

A new breed of doulas are helping break down the fear around death, which they say shouldn’t be a confronting word.

Carmen Barnsley from Melbourne said just like birth doulas, death doulas were there to provide support, knowledge and assistance during times of upheaval and uncertainty.

“I find it is just a privilege and a humbling experience to be where life enters this world and when life leaves it,” the former nurse said.

“Death is just as amazing an experience as birth is, but we celebrate birth and we deny death.”

Ms Barnsley has had her own experience with death. Her son died when he was five months old.

While she was in the depths of numbing grief, the hospital handed over a Yellow Pages and told her and her husband they needed to pick a funeral parlour.

It was the first of many conversations she had during the grieving process that made her realise that as a society, we need to start doing death better.

“Some cultures do death beautifully. It’s a reflection of the person’s life, whereas I think we do it pretty poorly,” she said.

“The honest thing I can say about the doulas in my network is everyone has been through a personal process of death.

“A lot of the doulas who are coming from personal experiences are coming from terrible personal experiences and were seeking answers to improve it so that doesn’t happen to another person again.”

Emotions run high

Ms Barnsley said her colleagues came from all walks of life, having worked as hospital chaplains, accountants, social workers, celebrants and in the funeral industry.

She wants people to understand that knowledge is power, especially when it comes to death.

“A death doula isn’t about dying, it’s about allowing that individual to live until they die.

“I find when somebody puts a plan in place they will then live until they die, as ironic as that sounds.”

She recommends having conversations about death when you’re young and healthy instead of leaving it until death approaches when emotions run high.

“In the medical profession we have informed consent. I’d love for end-of-life issues to have informed choices.

“I don’t have a terminal disease but I have an advanced life care directive in place.

“My doctor has got a copy; this is probably a little bit touchy at the moment, but mine is actually up on the [My Health Record] healthcare site … so that any hospital in Australia can access my directive.”

The dying space

The main thing Ms Barnsley wants people to know is that death doesn’t have to be impersonal and there is no prescribed process to follow.

“You don’t need a funeral home, and some people don’t even know that,” she said.

“You may need to get one to transport someone, but you can have a loved one at home, you can organise transport straight to burial or cremation or whatever the person’s choice is.

“[In the past] a family did care for loved ones dying; it wasn’t in a hospital, it wasn’t medicalised, it wasn’t institutionalised and that was the norm.

“But there became a fear factor with death; let’s take it behind closed doors, we don’t talk about it, and there’s still people within our community that still have that.”

Melbourne death doula Bonita Ralph says talking about death is important.

Bonita Ralph first came into contact with doulas when she was pregnant with her first child.

Years later she read an article about the work of death doulas and realised it was a similar concept.

“For me it was a very lightbulb moment where I went, ‘Oh my God, of course that’s the same thing’,” she said.

“It’s the same sort of energy, the birthing space and the dying space.”

Ms Ralph comes from a community welfare and social justice background and sees the work of a death doula as an “in-between role” to help bridge the gap between the medical system and the community.

“I think a lot of people think that when you’re a doula, you’re sitting at the bedside of someone who is dying, and that hasn’t been my experience yet,” she said.

“I think that may come, it may not, and that’s OK because I think the doula role, for me, is broader than that.

“A doula is a companion, someone to walk with you, someone to support you in your choices and that absolutely applies to end-of-life care and death.”

Know your choices

Ms Ralph said one of the best things people could do was spend time reflecting on their own experience with death and understand where their knowledge about death comes from.

“I think we’re moving really slowly towards acknowledging that if we don’t have role models and experiences, then we actually don’t know what to do,” she said.

“They need to know that it’s not illegal to take someone who has died home. It’s not illegal to organise your own funeral. You don’t need a funeral director. It’s a lot of work and maybe I wouldn’t suggest it; logistically it’s tricky, but it’s not impossible.

“People do dig their own graves, the graves of family members. That is not impossible. There are options out there.”

Ms Ralph said these options would not be for everyone, and while Australia was blessed to have a good medical system, it was important to know your choices.

“I don’t want people to feel like they’re being forced or that there’s a right or wrong way to do death,” she said.

“Death is so important because if you don’t offer good support, if you don’t offer genuine response to what that family needs, there’s going to be complicated bereavement results because people don’t move through and grow with their grief. They can get stuck.”

She said often people found it easier to talk openly about death with a doula, but she always encouraged people to have those same conversations at home so their next of kin understood their wishes.

“Talking about death is not weird. It’s important.

“Ask anyone who has had to work through a complicated death process such as a tragic death or complicated families or someone has died and left everything undone and the family has to pick up the pieces.

“Have these conversations when you’re young and well and alive and engaged, and have these conversations ongoing because things change. Relationships change. Expectations change. So don’t be afraid and keep having that conversation.”

Events are being held across Australia on August 8 for Dying to Know Day, which aims to start conversations around death, dying and bereavement.

For more information and to find events near you visit the Dying to Know Day website.

Complete Article HERE!

What does it mean to have a ‘good death’?

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What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

Complete Article HERE!

Natural Burials Are Rising, and That’s Good for the Planet

Natural burials offer a greener alternative to traditional cemeteries, but Big Funeral is fighting back.

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Even in death, Americans just can’t stop themselves from destroying the planet, according to new research.

Right now there are around 22,500 active cemeteries in the United States. These sanitized spaces, with bunches of flowers lain among neat rows of gravestones on manicured lawns, are so closely associated with the American idea of mourning that it’s difficult to imagine an alternative.

Yet the practice is deeply unsustainable. Every year, in laying their dead to rest, Americans bury approximately 73,000 kilometers of hardwood boards, 58,500 tons of steel, 1.5 million tons of concrete, and 3.1 million liters of formaldehyde. A typical four-hectare cemetery contains enough wood to construct 40 homes and sufficient volumes of embalming fluid to fill a backyard swimming pool. As the Baby Boomers start to die, these environmental impacts are only going to grow.

“People hate to think about it. They think, ‘I’m going to be embalmed, put in a vault, and have a nice, dry, quiet existence for my body,’ but that’s a total farce,” says Chris Coutts, an associate professor in the Department of Urban and Regional Planning at Florida State University. “The bodies quickly start to rot, and those fluids, if they’re in the body, find a way out of the vault and into the soil, and they can create a plume. It’s a concern if it migrates into water tables. The whole point of embalming fluid is that it doesn’t degrade, so it’s going to be around a long time.”

Coutts is the lead author of a new paper examining the benefits of a greener alternative to the traditional rituals of death: natural burial. While higher-density family vaults can reduce your environmental footprint compared to an individual burial, it’s still a high-impact way of shuffling off your mortal coil. Even cremation, which has doubled in popularity since 2000, leaves an environmental smudge on the Earth, thanks to its high energy consumption and the ensuing air pollution.

Increasingly, Coutts et al. have found, people are rejecting the lawn-park cemetery model, and instead choosing to commit their bodies to a wilder resting place. In most cases, this means eschewing traditional American funerary rites altogether and burying the body without chemicals in a biodegradable casket or a simple shroud. At its best, natural burial allows your death to leave almost no physical damage on the natural world, while helping to protect and conserve threatened landscapes for those still living.

One example is the 142-hectare Glendale Memorial Nature Preserve in Florida, a family farm located in an area full of endangered native longleaf pine and wiregrass. The plan for the cemetery called for 80 percent of the land to be restored and conserved as natural habitat, with around 28 hectares set aside for natural burials. Add-on items include coffins constructed from old bookshelves, while the conserved habitat is also available for recreational activities including hiking and camping. Telling ghost stories remains optional.

John and Bill Wilkerson, the brothers who run the business, say that the income they’ve generated from the burials has allowed them to resist the financial pressure to sell the land to developers—a proposition that was adamantly opposed by their late parents.

The lawn-park cemetery in America might feel like an inescapable ritual, but the idea is relatively recent, arising in the 19th century, as urban elites grew increasingly affluent. Rural cemeteries like Mount Auburn in Boston or Laurel Hill in Philadelphia were not only useful for memorializing the supposed importance of the deceased bourgeoisie, but also for providing their surviving relatives a pleasant getaway from increasingly crowded cities.

The practice of embalming grew popular around the time of the American Civil War, Coutts adds. “They needed to preserve and ship the bodies back to wherever they were going to be buried, and embalming became prevalent. It’s the common expected practice, but it’s really just people going through the motions: It’s what we’ve always done, it’s what we continue to do, but that’s changing,” he says.

This resource-intensive method of burial is far from universal across the globe. Muslim communities practice natural burial as a “basic religious obligation,” according to Coutts and his fellow authors, while in countries such as Australia, grave sites can be reused for new inhabitants after a certain amount of time has elapsed. In the Peruvian Amazon, before the arrival of Christian missionaries, bodies were lain among the buttress roots of large trees. Some Tibetans practice sky burials, placing the corpse on a mountain and allowing it to decompose gradually.

The first natural burial site in the U.S. was established in 1998 in South Carolina. There are now 162 natural-burial providers in the U.S., of which 99 are hybrid cemeteries, offering both natural and traditional burial. A further 54 offer exclusively natural burial, while nine are active conservation burial sites.

Yet America’s lucrative death-care industry is fighting back, determined to protect a billion-dollar market by perpetuating the idea that a resource-intensive funeral is the only guarantor of lasting peace. Indeed, hybrid burial sites are mostly a way for the sector to cash in on the growing popularity of natural burial, a form of greenwashing that offers little in the way of concrete benefits, says Joe Sehee, who founded the Green Burial Council, which certifies natural burial sites, in 2005.

“There were people who just didn’t like the idea [of natural burial],” Sehee says, “people within the industry, particularly people who liked the merchandise-based model of death care: chemical, casket, and vault companies.”

Perhaps more sinister than this greenwashing are the attempts by the funeral industry to lobby for new regulations that will protect its economic position. There are very few federal laws around the handling of the dead, with states and local governments generally left in control. Around half of U.S. states regulate the amount of time that a body can remain un-embalmed, yet no states require a body to be buried in a coffin. Only a handful of states forbid bodies being buried outside of established cemeteries.

This loose legal framework bodes well for natural burial, and badly for Big Funeral. Correspondingly, the mainstream funeral industry has lobbied state governments to pass legislation protecting its share of the market, such as mandating embalming, only permitting burial in established cemeteries, and requiring the involvement of a licensed funeral director to perform tasks that could ordinarily have been performed by the next-of-kin. Restricting citizens’ freedom to access natural burial is bad for the environment, and could deter those who might have chosen this wilder option because it was cheaper than a traditional plot.

Coutts himself, after years of studying the benefits of a natural burial, sounds almost excited by the contribution he will be able to make to conservation from beyond the grave. “I’ve often just dreamed about walking out into the desert with a bottle of water and just sitting under a tree and waiting for it to come,” he says. “But that would be a luxury and it’s probably not feasible. I have it in my will that I want my body to be buried naturally in a conservation burial ground.”

Complete Article HERE!