Assisted Dying – Page 35 – The Amateur's Guide To Death & Dying

August 29, 2016August 29, 2016

I wanted to help my dying friend. But that meant helping him die

When a friend asked me to accompany him to an organisation that provides assisted suicide, I trusted my feelings would catch up with my desire to help

By Steven Amsterdam

I had nearly finished writing a novel about a dying assistant (not an assistant who is terminally ill; a person who hands over the necessary overdose of Nembutal) when I had a fateful conversation with an old friend.

Russ, who had long been sick, asked if I would go with him to Dignitas in Switzerland – a nonprofit organisation that provides assisted suicide – to help him die.

He said, “It’ll be good for your book.”

I’m a palliative care nurse, so I am all for a good, comfortable death. The nursing work is the reason I wrote the book – to imagine how such a character gets through their life and why. But Russ was not asking for creative writing. After three years of co

“Come on,” he said. “You should write about it. Plus, I’ll need a nurse for the endgame.”

I said “yes” because I trusted that my feelings would catch up with my desire to help my friend.

Almost 30 years ago Russ and I were briefly housemates in Brooklyn. He was a grad student in Icelandic mythology, stringing fellowships together and living mostly at the library, or in Reykjavik.

A few years later, when he was diagnosed with multiple sclerosis, he left the ancient world for better health insurance and became an academic editor. He battled on after that – with accessible keyboards, accommodating work hours and, finally, handrails and ramps – until he couldn’t manage anymore. “Retired” at age 40, his world scaled down to a few far-flung friendships and to his studio apartment in Queens.

Last year, a series of seizures – “wrecking balls”, Russ called them – abruptly took away function of just about everything but his left hand. Unable to transfer from bed to wheelchair, much less prepare food, he became reliant on public benefits and a shrinking bank account. To get by, he needed an ever-changing array of aides. Underpaid and undertrained, they thoughtlessly bullied, yakked and dropped him. To preserve a semblance of solitude, he limited their assistance to a few hours a day.

I live in Melbourne, so I was useful for middle-of-the-night calls. “That’s not nothing,” he said. When he was both dreading and needing the next aide, when he couldn’t reach the water on his end table, or when his mind was not being kind to him, we talked. A closer circle of friends or family or a better healthcare system could have helped but they weren’t an option. He was trapped in his bed, alone and crying.

“We always knew I wouldn’t do well when it got like this. I never expected it would be so soon.”

He told me last August he wanted to be dead before Christmas and that I would be the ideal escort. My patients have taught me how to discuss death without the usual terror, which lent me cred. Writing the novel had given me more than a casual understanding of all that would be involved. And after watching Terry Pratchett’s documentary about accompanying someone to Dignitas, I even knew my way around the Ikea-plain apartment where it would happen.

For me, the experience would be nursing education. It would be research for the book. And, as Russ pointed out, the flight to Zurich would be tax-deductible.

The application to Dignitas was his last writing assignment. For weeks, Russ fine-tuned his one-page statement on why he wanted to die. Another friend helped locate and notarise all of the required documents – confirming identity, prognosis and state of mind. She and I would accompany him, so that neither of us would have to fly back alone.

While Russ waited, he revised his will, gave his belongings away and, with heartbreaking care, explained to his 10-year-old niece why he wanted to die.

The letter finally came in December, outlining the final bits of protocol. For me, the letter was a doorway: I knew I would be ready to help him die. For Russ, it was something else: the planning stopped. He seemed to relax into his situation at home. He didn’t embrace it but, when he described an aide’s latest screw-up, I heard less rage and more acceptance of what was happening to his body. He stopped talking about dying as often or as urgently. There were fewer late-night calls. And, when we talked, it was about my edits and not his panics.

Dignitas were asking for too many documents, he said. Or Zurich would be too cold this time of year. Or this: “It’s too big a trip to make if I’m going to chicken out.”

It seemed as if what he had wanted was acknowledgement that he had been dealt a crap hand. With the official affirmation from Dignitas, he could go on playing it.

Then, last June, nearly a year after he first voiced the wish, the plan was on again. He would go in July. “I’m not cheerful about it but I don’t see another way.” The friend who’d helped with so much of the paperwork and another friend – one he’d had little contact with but who lived nearby – would go.

Not me.

“You live too far away,” was all he said, though the distance hadn’t been an issue before.

I imagine there’s a long word in Icelandic to describe the unique whiplash that comes from psyching oneself up to emotionally support a suicide and then suddenly being excluded from the project. Was it really logistics? I checked back over our conversations for some offence. Did I show too much writerly curiosity? Too much nursey pressure? Was he simply protecting me from the moment in the Dignitas apartment that neither of us could picture?

Russ made the trip and died two months ago. When I heard that he was resolved and relaxed in his last hours, I stopped speculating why I wasn’t there. It wasn’t about me.

The grief I’m left with has mostly been the completely ordinary and uncanny kind – life goes on without him. We lived apart for so long that my daily routine is untouched. It’s when I think about the conversations we’ll never get to have that I feel the loss. At times though, it gets more complicated. The anger is not at his quick death but at the long disease that led him to a place where he couldn’t see another way. Suicide – for lack of a better word – serves as a reminder that life is not only finite, it’s optional. What do we do about that? I don’t pretend to know.

More recently, a different feeling has washed up, requiring another long word in a strange language to articulate. It would cover every part of this past year with Russ: the wrecking balls, the plan, the new plan, his death and its aftermath. The word would mean three things at once and it would apply to both of us: a door tightly closed, a mercy granted and a bullet dodged.

So here, Russ: I wrote about it.

Complete Article HERE!

August 17, 2016August 15, 2016

Opening the Window

This doula helps clients make the most of death

by Melissa Scott Sinclair

Death doula Shelby Kirillin chats with client Kim McGaughey.

The Angel of Death is surprisingly upbeat.

“I know death is sad, but what’s wrong with dying?” Shelby Kirillin says, green eyes alight. “It’s OK. We’re all going to do it.”

Kirillin is a death doula — someone who guides the dying, and their families, through the end of life.

“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”

In 18 years as an ICU nurse specializing in neuroscience, Kirillin witnessed too many bad deaths. She heard frantic families ask for every procedure possible in order to prolong life, instead of easing their loved one’s passing. She saw doctors who advocated continuing medical intervention, even when it was obvious that nothing more could be done.

Then in 2012, Kirillin, along with four Virginia Commonwealth University Medical Center colleagues, helped care for a fellow nurse who was dying of cancer. Their assistance allowed their friend to die at home, peacefully. And Kirillin found her new calling.

Kirillin began an apprenticeship with a death midwife in Canada and is completing her certification by the International End of Life Doula Association. Last year, she began practicing in Richmond. Insurance doesn’t cover her services; her fees are based on the time and level of support a client requires.

She’s not a hospice nurse, who manages patients’ medications and physical needs. She doesn’t give medical advice, nor is she a grief counselor. Rather, she is an “end-of-life transition coach,” as one client dubbed her, who guides people through the emotional and spiritual experience of death.

“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”

“I can’t take away the fact that you have to kneel in a mountain of sorrow,” she says, paraphrasing end-of-life guru BJ Miller. “That can’t be avoided. But what I can do — I’m very much like a birthing doula — I hold the space.”

Family members may be mute in their grief, or mired in doubt, or consumed by guilt. Kirillin helps them to act, to labor along with their loved one. “It’s a beautiful day,” she may say. “Let’s open these windows.” Or, “You want to lay next to your mom? Here, let me move her. Lay next to your mom. Hold her. It’s okay.”

Mary Bolling “Mary Bo” Gassman found out she had cancer just seven weeks before she died. Her husband, Ken Gassman, couldn’t accept it. “I’m an alpha male, OK? And I’ve always been the family patriarch,” Gassman says. He made an executive decision: “We’re going to beat this cancer.”

As a result, Gassman and his oldest daughter, Elizabeth Gassman Chéron, didn’t agree on how best to manage Mary Bo’s symptoms. Chéron wanted to relieve her mother’s suffering; to her father, administering morphine meant bowing to the fact that his beloved wife was dying.

Kirillin became the ambassador, mediating between father and daughter. She encouraged Gassman to stay focused on the goal: not curing the incurable, but giving his wife a reason to wake up the next day, and the day after that. When Chéron admitted, “I just don’t know what to do,” Kirillin told her to trust herself. “You’re doing great,” she said.

On a cool October afternoon, Kirillin said it was time to open the windows. The breeze carried in the sweet scent of wildflowers, Gassman remembers. “A minute or two later, it was gone.” It was 4:32 p.m., and Mary Bo had passed away. “I think Shelby knew how she was going to ride out of there,” he says.

While Kirillin serves the family and friends of those soon to depart, she is chiefly concerned with the desires of the dying. Long before the curtain closes, she says, everyone should clearly state what living means to him or her. Kirillin’s own advance medical directive says, “If I can’t go to a baseball game, follow it, enjoy it and, the next day, remember it, I don’t want to survive.” It’s funny. But it’s true.

When dying becomes a possibility, she speaks with her clients about how they envision their last days. Most people say they want to die at home, for instance, but a hospital may offer more comfort for a patient who’s short of breath.

Kirillin helps people articulate what they want their death to look like, sound like and even smell like. Silence or songs? Coffee or lavender?

“When we die, we lose control,” says her current client, Kim McGaughey. “You don’t have any control over what’s happening, how you’re going to die. But I’ve got a lot of control over the beauty, and how special it is, and how I create this experience.”

At first, McGaughey didn’t want a death doula. After an eight-year battle with cancer, she had just been told she might have weeks to live, instead of months. She was feeling overwhelmed and didn’t want to complicate her dying. Then she met Kirillin and changed her mind.

“I might as well figure out how to do it, so that I enjoy it,” McGaughey says. “I know that sounds weird.”

Kirillin answered McGaughey’s questions about what death feels like. She gathered healing circles of friends and helped McGaughey write her own funeral service. McGaughey has asked her friends to write down memories of times they’ve spent together, and she wants these stories read aloud as she is dying. Everything is prepared.

“I want people to understand that death gets beautiful,” Kirillin says. “Death is amazing.” And sometimes, she says, it feels just like birth.

For more information on death doula services, visit Kirillin’s website, Peaceful Passings.

Complete Article HERE!

July 31, 2016July 31, 2016

The way we die: elderly people need end-of-life options

by Mario Garrett

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

Opioids usually administered in these times are sometimes not enough to stop the agonal stage of death. Agony comes from the Greek word ‘to struggle’. The process of dying, as seen by an observer, is that of a struggle. The stage right before an older person dies is often accompanied by disorientation, struggling to breathe with long pauses in between loud, laboured breaths – called Cheyne-Stokes breathing.

Sometimes a death rattle is heard in the breathing when there is liquid in the lungs. Sometimes the person may start convulsing. This agonal process is eloquently described in the Tibetan Book of the Dead. This is not the way we want to die.

In one study looking at what people said is their ideal way to die, Gilbert Meilaender from Valparaiso University in Indiana suggested a one-word answer: Suddenly! The idea is to live as long as possible at the peak of our vigour and then, when the time has come, to die quickly and painlessly. But this is not the way we die.

With our advancing and encroaching technology, it is more likely that dying will become a more protracted affair despite our wishes. Surprisingly, when we try and hasten the process we, as a society, have responded by punishing those who are trying to help us achieve a painless death.

In the US, one of my neighbours, Sharlotte Hydorn, before her death in 2013, gained a measure of notoriety by offering to mail you, for only $60, a package containing GLADD exit bags – Good Life and Dignified Death. The kit included a plastic bag, medical tubing, two canisters of helium and instructions on how to commit suicide – by placing the bag on your head and filling it with helium, which deprives the body of oxygen. The body does not know it is being denied oxygen since the helium mimics the oxygen molecule. You die peacefully. In the US, more than a quarter of us will likely die in an emergency room, our final departure looking more like a chaotic medical soap opera. Our death will be seen as another medical failure. For the majority of us, this is not what we want or what we deserve.

In Europe and the US, hospice care is gaining ground as the gold standard for end-of-life care. The Malta Hospice Movement is today caring for over 1,000 patients and their families. However, Malta Hospice, as most hospice services, is used by too few people. And when these services are used, they are used too late. The result is that most older adults still experience widespread distress in the final stages of life.

The result is that we deal with dying underhandedly. In hush hush tones we conspire to give the dying person a good death. In Malta, Jurgen Abela from the University of Malta’s department of family medicine conducted a survey of 160 doctors. The results are revealing. One in seven doctors were asked by their patients to help them die. Despite this, nine out of 10 would refuse such requests for moral reasons – since a majority were Catholic and this was important to them – despite half of these same doctors accepting the right of individuals to hasten their death. Such schizophrenic response harbours a sense of bigotry.

The religious fervour to curtail euthanasia has not slowed the growing number of states that have legalised physician assisted death. With four US states and four countries that today openly and legally authorise active assistance in dying of patients, the list of states/countries is growing.

There is nothing absolute in these situations. Physicians cannot determine with infallible certainty that someone is going to die, sometimes the medication used does not work as intended, or is delayed, the process of injecting a person with enough opioids to kill them is not family-friendly and it is killing without consent. These are all valid criticism that pose moral challenges.

If we look at how physicians die, what we find is that a majority of them do not go for invasive treatment if they know that it is unlikely to improve the outcome. They chose quality of life over quantity of life and self-medication is high. It takes a special person to go through with euthanasia.

In the state of Oregon in the US, only a small fraction goes through physician-assisted-suicide. In 2013, a total of 71 people went through physician-assisted-suicide out of nearly four million people in Oregon. In Malta this would translate to less than five people a year. There is no ‘thin end of the wedge’. These people, nearly exclusively white, were educated with a diagnosis of cancer (since we know a lot about the progression of this disease.)

Different older adults need different support. Some end-of-life options may not appeal to you, but the option needs to be made available for others that it might help. Euthanasia is about diversity of needs. Not everyone might want or need it but it should be an option for those very few for whom it might help alleviate the pain of dying.

Complete Article HERE!

July 21, 2016July 20, 2016

Other Options to Hasten Your Death

Voluntary Stopping of Eating and Drinking (VSED)

To voluntarily stop eating and drinking means to refuse all food and liquids, including those taken through a feeding tube, with the understanding that doing so will hasten death. This is an option for people with terminal or life-limiting diseases who feel that with VSED their dying will not be prolonged. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking.

The US Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community.

Before You Start

You must prepare to voluntarily stop eating and drinking. It’s not something that can or should be started the day it is first discussed.

Talk with your physician to let them know of your plans. Talk with your physician about all your medications, and ask if a sedative or pain medication will be available to keep you comfortable.
Complete an Advance Directive stating in writing that voluntarily stopping eating and drinking is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts.
Talk with friends and family members who might care for you during this process early about your wishes and why you may want to take this course. Their support is crucial. However, beware that for many people families are often opposed to VSED and can pose a barrier.
Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
If you reside in a care facility, discuss your wishes with the staff and nursing director. You will need the staff to provide support and assistance.
If you are already receiving hospice care, your team can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will provide supportive care once you start the process.
If your illness is not one that is likely to cause death within six months, arrange for a psychological evaluation for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision well considered.

Process

You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status.

At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.

Since dehydration will most likely be the cause of death, it is important not to drink anything once you start. Even sips of water may prolong the dying process.

I wish I could say [my father] died a gentle death. But I’m not so sure. I wish doctor-assisted death had been available to my father. I believe it is what he would have wanted.

—CHRISTOPHER STOOKEY, MD

We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process.

Finally, one of the advantages of VSED is that you may change your mind at any time and resume eating and drinking.

People who begin this process often express a sense of peace that they can finally “stop fighting.” Some people describe a sense of euphoria or pleasant lightheadedness. There is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, urinate less, have less vomiting, and breathe more easily due to decreased congestion.

Resources

Read this story, in which Christopher Stookey recounts his father’s death by voluntarily stopping eating and drinking.
Browse peer-reviewed, academic-journal articles on the subject.
Watch this video, in which Phyllis Shacter describes her husband’s dying after he decided to voluntarily stop eating and drinking:

Not Starting, or Stopping Treatment

For some terminally ill people, aggressive medical treatment may not be helpful and may prolong the dying process without improving quality of life. Under certain circumstances, treatments can increase suffering, ruin the remaining quality of life, or even shorten life.

Stopping treatment can result in a peaceful death but it may also result in increased discomfort. Consult with your physician and arrange for optimal palliative (comfort) care before stopping treatment.

Stopping treatment can be combined with hospice and palliative care or voluntary stopping eating and drinking to shorten the dying process and reduce suffering.

Palliative Sedation

For dying people experiencing so much pain or unmanageable symptoms that they cannot get relief from medications unless the dose is high enough to make them unconscious, palliative sedation provides enough medication to keep them continuously unconscious and thereby free of pain and symptoms. All nutrition and hydration is stopped, and they usually die within a few days.

People using palliative sedation should be monitored around the clock to be sure the sedation is adequate. While this intensive monitoring can sometimes be provided in the home, it is usually provided in a skilled nursing or inpatient hospice facility.

Many [people] claim that palliative sedation effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.

—ANN JACKSON

While palliative sedation is an ethical and legal end-of-life option, it is not necessarily a right. While you can request palliative sedation, it is up to the medical provider to determine if it is appropriate. Some physicians and hospices are reluctant or unwilling to authorize palliative sedation. If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.

Complete Article HERE!

July 6, 2016July 6, 2016

Dying for beginners: Cory Taylor on facing death with honesty

by Richard Fidler

CORY TAYLOR AT HER HOME IN BRISBANE IN JUNE 2016.

Award-winning Australian writer Cory Taylor spent the last years of her life fascinated with her own mortality, writing a memoir that she hoped would trigger more open and honest conversations about death. In her last weeks, she shared some of her insights in a bedside interview with Richard Fidler.

Cory Taylor died on Tuesday, without pain, and with her family all around her. She had just turned 61.

For a decade, she had lived with the certainty of her death from melanoma-related brain cancer.

Her final project, Dying: A Memoir, was written earlier this year in the space of just a few weeks.

Julian Barnes wrote after he read Dying, ‘We should all hope for as vivid a looking-back, and as cogent a looking-forward, when we reach the end ourselves.’

Her publisher, Michael Heyward, announced plans to publish the book around the world in the coming months.

Cory’s writing career started with screenwriting, moved into children’s books, and then novels for adults.

Her first novel, Me and Mr Booker, won the Commonwealth Writers Prize (Pacific Region) and her second, My Beautiful Enemy, was shortlisted for the Miles Franklin Literary Award.

Just three weeks ago, Richard Fidler spoke to Cory at her home in Brisbane. Here are some highlights of their conversation about her life, and her feelings about her own death.

On life in her last weeks

‘I move from my bed in my bedroom, to my sofa here in the living room, and basically I stay here and I’m fed delectables all day and that’s about it.

‘Reading, I find pretty exhausting, which is sad. Even watching stuff on TV taxes you a lot. But I miss reading, so I do force myself to read.

‘One of the things I do is dream a lot about life. Not dream as in sleep dreaming, but day dreaming. It’s not as if I’m gathering memories but I still am very steeped in memory.

On being a ‘beginner’ at dying

‘I’ve never seen anybody die, so it’s not something I know anything about.

‘I think we should all study it. I think we should all spend time with people when they’re dying.

‘Basically, it’s all hidden from us … we’re so ignorant about how does it happen actually, physically, and then what do we read from that?

‘I wish I’d known a lot more about it before now.’

On the idea of assisted dying

‘I’ve always felt that I have controlled my destiny, pretty much. That may be a compete delusion—well, obviously it is, because I’m dying and I didn’t plan that.

‘But it’s the lack of control when you’re dying that is so terrifying.

‘Even to think that you have the possibility to control the circumstances, to put yourself out of your own misery, it just renews that sense you do have some control over what’s going to happen to you.

‘And that is a real comfort.’

On whether to think about dying

‘I don’t think you should think daily on it, but I do think it’s worth having in the back of your mind, in terms of the kinds of conversations you want to have with your family … so that they have a sense that you are not there forever.

‘That means that you value certain things now and you want to enjoy certain things now and there are a whole lot of things you don’t want to do and you don’t want to waste time on, because you’re aware that it’s all finite and it can be over faster than you think.’

On cancer

‘The last thing I wanted was to write a morbid analysis of my cancer treatment or my “battle” with this disease.

‘The war metaphor doesn’t really work for me at all. It is a “coming into” dying, as if that’s a natural flourishing in a way.

‘It is a momentous thing. It’s the most important thing that’s going to happen to you after your birth.

‘The complete randomness of the whole thing … that’s not what saddens me about dying. The ultimate randomness is death, isn’t it?

‘Despite all the randomness and precariousness of it all, it’s still an enormous gift and an enormous blessing, so why would you begrudge any of it? It doesn’t really matter in the end.’

On consoling loved ones

‘People have been to me surprisingly emotional about me dying, when I don’t feel as sad as they are. You want to protect them from that and say: “It is alright.”

‘I think my book has helped my friends to realise I am telling the truth. I am OK.

‘I have managed to do the things I wanted to do, and I’m not going out full of regrets or grudges, or anything like that.’

On her funeral plans

‘I’m a bit hazy on my funeral plans. I had a book launch (in Brisbane) and I was just there in the ether, talking on Skype. And I could see the audience, and it was a bit riotous, and there was lots of laughter, and lots of tears.

‘A lot of people who went called me later and said, “Oh Cory it was fabulous, it was like being at your funeral.”

‘I thought, “Oh that’s good. I’ve done it now. I don’t have to do it again!”

‘So I’d probably want a repeat of the launch, which is just a room full of friends, and lots of grog and food, and people saying lovely things about you. That’d do.’

Complete Article HERE!

June 28, 2016June 28, 2016

‘Death doulas’ help dying people and their loved ones say goodbye

By Kevin Fagan

Henry Fersko-Weiss, co-founder and president of the International End of Life Doula Association, conducts a session at the association’s training at the Omni Hotel in San Francisco.

The emotional crumbling started when she was 14 and a friend was killed in a car crash. Three years later, her father died when his helicopter exploded. When she was in her 30s, her brother committed suicide.

By the time a close friend was murdered three years ago, the coping skills Bonnie Ludwig had for dealing with death were shattered — and she found herself one day on her knees on a sidewalk, sobbing obliviously.

Therapy gave healing, which allowed her to help comfort dying dogs at the pet care company she runs — and which soon led to her sitting in a San Francisco hotel room on Friday, learning how to help people die better.

Ludwig, 45, was taking a class in how to become a “death doula,” someone who helps shepherd the dying and their families into loving, peaceful exits. The man who founded the craft in 2003, Henry Fersko-Weiss, is guiding her and 47 other students through a weekend-long course on handling what for many seems like the worst moment possible — but, if handled deftly, can be a beautiful journey to whatever lies just beyond a heartbeat.

‘Learn to let go’

“Humans hold onto life so tightly,” said Ludwig, who flew up from San Diego to take the $600 training at the Omni Hotel. “We need to learn to let go better. We grieve so badly in our culture, and I have found it is sacred and an honor to be with animals when they die. Now I want to be able to do that with people.”

Fersko-Weiss, 68, has trained more than 1,000 people in his discipline, and this was his first session in San Francisco. People come to his trainings for many reasons, he said — some from pain, like Ludwig, some because they’ve already helped others die and feel a calling to do more. But they all have one thing in common.

“I have found that the people who come to these trainings have a great deal of compassion and want to serve people at this incredible period in their lives — death,” said Fersko-Weiss, who lives in the small town of Warwick, N.Y. “They are self-selecting. Like me, they feel this is a way they can really do some good and help. It’s very intense and very important.”

The idea of finding a better way of dealing with the obliteration of life came to Fersko-Weiss when he was a hospice volunteer and saw too many people missing the last breaths, not saying the words they wanted to say before passing, not feeling complete in what they were leaving behind.

He had a friend who was training at the time as a birth doula — a midwife of sorts, who helps birthing moms and their partners stay comfortable and well-centered — and he found the approach so dynamic he took the course himself.

What he learned there led him to co-found the International End of Life Doula Association. Doula, in ancient Greek, means “woman who serves.”

“It’s just our human nature that we want to be reassured as we die,” Fersko-Weiss said. “We’re going into the unknown, and everybody has fear of passing that boundary between life and death.

“I believe the only thing that counts at the end is having people we love, someone at your bedside, talking to you, telling them how much they love them, reassuring them it’s going to be OK. Those things are important.”

Calming techniques

Students learn techniques for calming the dying and their family and friends, and then they help them find the right kind of intimacy to say the things that need to be said. To cut to the chase about what they want to be remembered for, to compile scrapbooks. To face the end with grace.

Lori Goldwyn attends the training session by the International End of Life Doula Association at the Omni Hotel.

Sometimes doulas ease pain by having the dying visualize soothing times in their lives or by giving therapeutic touch. And they help plan what the final moments will be like. Sometimes people want candles burning, certain clothes, favorite poems read out loud. Doulas stay at the bedside, ready to recognize when death is minutes away — mottled skin, fingernails turning blue, other clues — so everyone can be prepared.

Cynthia Imperatore, who lives in New Jersey and is helping Fersko-Weiss at this weekend’s training, found that sometimes the simplest actions are the most important.

Recently she was helping a son sit vigil with his terminally ill mother, and found herself sitting at the woman’s bedside, holding her hand while the son stood stiffly at the foot of the bed with a TV blaring in the background. The final minutes were near. It didn’t feel right.

“I had him turn off the TV, put on some classical music, and I said, ‘Come here and hold your mother’s hand,’” said Imperatore. “So he came, and then I said, ‘Tell her these things’ — in Spanish, because that’s what his mother spoke. I said, ‘Tell her she’s done everything right. Tell her you’re grateful. Tell her you love her. Tell her what she did mattered.’

“And what happened is that these were the last words she heard,” Imperatore said. “He didn’t have to carry a sense of unfulfillment with him. It was good.

“What we do is not morbid,” she said with a gentle smile. “It’s a privilege to be there when people are dying. Death takes us to a place where we seek meaning, makes you question what is life. And sometimes it can make you appreciate life more.”

Complete Article HERE!

June 18, 2016June 18, 2016

Becoming a ‘death doula’: Why I choose to sit with people as they die

By Jaki Fisher

Jenny (pictured right) is the first person Jaki sat with as she died.

HAVE you heard the term “death doula”?

You may have. It’s been bandied about a bit recently, after Imogen Bailey recently wrote an article for Mamamia about training to become one.

In the article she mentions that musician Ben Lee is also a death doula.

In case you’re not familiar with the term, a “doula” is traditionally someone who gives support to a woman during pregnancy and during and after the birth.

A death doula is someone who helps at the other end.

Here, Jaki Fisher, an Australian living in Singapore and studying to be a death doula, writes about her first experience witnessing death.

JENNY was the first person who asked me to be with her when she died.

A single woman in her early 50s with only a couple of nephews she was in touch with, Jenny was being cared for at the Assisi hospice in Singapore where I was a volunteer.

Jenny and I talked a lot about what might happen during the dying process and afterwards and it was then that she told me she wanted me to be with her as she died. I said I would do my very best to make this happen.

After several months, Jenny suddenly got quite a lot weaker but at the same time, something in her shifted. I noticed this and asked her if she felt different and she replied that she felt that she was coming to accept what was happening.

She was hardly eating but I remember that when she would have a sip of coffee, her eyes would light up at the taste and she would savour it with delight. And when she went into the garden, she would marvel at the sun and the wind — simple, present joys became very strong for her.

At the end, Jenny deteriorated rapidly. Her breathing changed and it was clear to the nursing staff that she would not live much longer.

Jenny was the first patient at the hospice to take part in an end of life vigilling program, No One Dies Alone (NODA). Based on one that began in the US, theoriginal was started by a nurse called Sandra Clarke who, after leaving a lonely old patient who begged her to stay, returned after her rounds to find he had died alone. She couldn’t forget this and eventually set up this no-fuss, volunteer-run program that has been implemented in many large hospitals across the US.

With most NODA programs in hospitals, volunteers are called to sit with dying people who are alone, estranged from their families or far away from loved ones when they are actively dying.

At Assisi, from the time an alone person is admitted to the hospital, the NODA volunteers become the family and visit them until they were actively dying and then sit in vigil during the last couple of days of their life — if that’s what they wanted.

Jaki has assembled a group of volunteers for her NODA program.

LAST MOMENTS

I started the vigil and took the first shift, setting up Jenny’s room with music and soft lights. Jenny was not conscious but I believe she knew I was there. I spoke to her and told her I was there to be with her as she had requested. I remember feeling nervous as I went into the room and initially I felt like I had to ‘do’ things, like read poems or inspiring verses.

Gradually, I took some time to ground and centre myself and create an atmosphere of awareness and presence, as we had learnt in our training. Then, I just focused on really being with Jenny, with no distractions.

I was aware that this was not a normal time, that something big was happening. Jenny had had a fever and when I first sat with her, she was moaning a little. This was unsettling but it also seemed quite normal — I was struck by how OK everything was, even though it was also very sad. In some weird way, as humans, we know how to do this end of life thing. Her breathing became very shallow and there were long pauses between each breath. I remember at one point, I thought that perhaps she had breathed her last breath when suddenly she took a big inhale and I jumped in fright. I sort of laughed to myself and thought that Jenny was again teaching me, reminding me that this was not about me, it was about Jenny and I just tried to relax and be with whatever was happening.

She passed away after only 90 minutes, very gently and softly while I was singing quietly to her. I couldn’t help but think that as usual, she didn’t want there to be a fuss.

We had promised her that she would not be alone when she died, and I was so grateful that we could fulfil that promise.

Being with someone when they die is powerful but it is not frightening. Many people make this comparison, but dying is a bit like labouring to give birth. There are urgent bits and struggling bits and then at the end, it all goes quiet. When Jenny actually died, I hardly even realised, it was so soft, a tender sigh.

After Jenny’s death, her nephew told me that her life had been quite hard and often lonely but that she had shared with him that she was amazed that in her last months of life, when things were really difficult, there was so much love and care in her life.

Jaki and NODA volunteers catch up to celebrate Jenny’s memory.

DEATH DOULAS

In the past two years, the NODA team at Assisi has accompanied more than 10 people during the last months of their lives and sat with them during their final hours. Many of the people we have accompanied lived hard, isolated, rough lives and I wish they could have been otherwise, but at least at the end part, they were loved with no expectations.

My dream is that people all over the world will adopt the NODA program in their own way so that we can all start to look after each other, especially at the end of life.

Nowadays, the profession of death doula is garnering a lot of interest. So am I a death doula? I am certainly interested in this area and I am heading off to San Francisco soon to take part in a death doula training and receive certification.

But I have my reservations about this sudden interest and the cynical part of me wonders if it is just the latest trendy thing, like being a yoga teacher was.

However, another part of me celebrates that perhaps this interest might be indicative of people wanting to face their mortality head on. I also like that death doulas are there to help people reclaim death as a natural part of life.

In the past, most people died at home — it was just another of the momentous life events — but in the past 50 years, we’ve pushed it away out of sight.

One thing I do want to say is that it is sometimes easy to romanticise dying but it’s not romantic — death is messy, draining, demanding, challenging, funny, heartbreaking, boring — everything … Death is often also really sad and a big loss, so I don’t really feel comfortable about making it a big celebration, unless of course it is!

I’m also wary of the idea of having a “good death” — that kind of creates a weird sort of pressure — like the one that is given to mums when they are striving to have a natural birth at all costs — our death will be what it will be.

However, what I do think is great is that people are talking about end of life and their choices. This conversation is so crucial and helpful and will make the end of life much clearer at a time when things are so rarely clear. However, once again, I wonder about being too attached to a plan — I think death would chuckle wryly at that idea.

To me, being with someone at the time of death is to become intimately exposed to not knowing — it asks us to be fully present and fully OK with whatever happens and not to impose a preconceived idea of what it should be like. To me, accompanying someone at the time of death is not really about doing anything, it’s about being able to hold and be there for whatever. We like to control everything in our lives but death does its own thing … it’s still the biggest mystery in our lives.

‘AN UNNATURAL INTEREST IN DEATH’

I first volunteered at the Assisi Hospice not because of any great altruistic yearning to serve but because I knew that the people there had the inside story about dying. And I had an unnatural interest in death.

I fell into a black swirl of depression at 27 after I tried to fix my face. I went for some kind of noxious peel, a treatment that’s now probably banned. It’s kind of embarrassing — other people get depressed because they lose a loved one or suffer a terrible trauma — me, I thought I’d wrecked my face and down I went into the dark pit. (It’s fine now. Not quite the same but a perfectly serviceable face.)

I was lucky and got treatment and part of the therapy was to do something for others, to forget about “me” for a while. After much sulking and prevaricating I finally started volunteering at the Assisi Hospice.

I still remember the first time I went into the wards and saw my first “dying person” — how tiny and fragile, limbs like little birds, and yet how bright the eyes were.

I didn’t really speak Mandarin, Malay or Tamil (three of Singapore’s four official languages) and most of them didn’t speak English — the 4th one. And yet, those people didn’t just teach me about death, they taught me about life and living.

They taught me about bravery, love, tenacity, dignity and they didn’t seem to mind that I was a self-absorbed, self-destructive girl. They didn’t judge me and they let me see them in all their vulnerability and in this strange suspended time of life. Yes, they were dying but they were also very much alive.

I was supposed to be the do-gooder but they were the ones who taught me and showed me that life is all about moments and all about connection and all about love — and that’s about it.

I moved to the US to study Buddhism and then back to Melbourne but I never forgot the Assisi hospice. In 2012 after reading Being with Dying, a book about accompanying people at the end of life by Roshi Joan Halifax, I attended her Buddhist Chaplaincy program in Santa Fe.

Two years on, I was a Buddhist chaplain and also completed a unit of Clinical Pastoral Education at the Royal Melbourne Hospital.

But I was still volunteering at Assisi and as part of my chaplaincy project helped set up the NODA program.

JENNY’S LEGACY

Jenny spoke openly of her anger and frustration. She had accepted that she did not have long to live but she could not accept that she had to wait so long to die. This was another lesson for us. It was hard not to want to ‘fix’ this and make it better for her. At one time, she wondered what the point of her life was and expressed sadness that there were so many things she hadn’t done. I told her that from my point of view, she was teaching us so much and that she would live on so powerfully for us as our first NODA patient.

Jaki and fellow volunteers attend the funeral of Mr Loong, a man who had no friends or relatives in Singapore.

I asked her if we could talk about her after she had gone and whether we should change her

name if we did so. She was adamant — if it would help others gain a deeper understanding

about death, then we could certainly go ahead and use her full name with no changes.

We have been running this program for two years now and all of us involved can feel how it has the potential to touch us all and offer something that is greatly needed in

today’s highly medicalised and hurried world — genuine human companionship at the end of

life, especially for those who have no one to give it to them.

Jenny’s life was certainly not in vain. She lives on in the program and touches

every patient we serve. Because of her willingness to embrace NODA, more and more

people have not died alone — this is Jenny’s precious legacy.

Complete Article HERE!