Dying to Know Day a national call to action to remove taboos around death

by GERALDINE CARDOZO

Death 'fans' Clive Salzer, Gypsy Artemis and Anthea Paterson planning events around Dying

Death ‘fans’ Clive Salzer, Gypsy Artemis and Anthea Paterson planning events around Dying to Know Day on the Central Coast.

For Umina retirees Anthea Paterson and Clive Salzer, life has never been better since facing up to death.

The couple, who call themselves “death fans” say they had a life-changing experience after attending an end-of-life course.

“Both our mothers are 94 and approaching death, so we went along to an end of life course to try and prepare ourselves for what is to come,” Mr Salzer said.

“While it was very emotional, the experience has changed our outlook on life and death completely.”

The pair are now part of the Central Coast End of Life Collective, which is associated with the Groundswell Project – the group behind Dying to Know Day.

“This is a national day of action challenging the taboo of death and bringing to life conversations around death, dying and bereavement,” Central Coast organiser Gypsy Artemis said.

Making a will is an important part in dealing with the inevitability of death.

Making a will is an important part in dealing with the inevitability of death.

“To me, Dying to Know Day is about saying things you may wish you’d never left unsaid.”

Ms Artemis, formerly known as Kim Ryder, said her fascination with “society’s last taboo” was sparked after a near-death experience in 1997.

“This changed my outlook on life forever and then my mum was diagnosed with terminal cancer and died in 2008. This was my first first-hand experience with death and I started thinking about how we, as a society, don’t deal with death very well.”

For Mrs Paterson, talking about death has helped her deal with grief associated with the death of her father.

“It’s not a morbid thing, this is about exploring death to enhance life,” she said.

ORGANISE YOUR OWN FUNERAL

Find out information about how to organise your own funeral, alternatives to cremation, how to make a will and advanced care plan at Dying to Know events next week. For details visit www.dyingtoknowday.org.

 
Complete Article HERE!

Quebec passes landmark end-of-life-care bill

Act respecting end-of-life care, Bill 52, allows terminally ill patients to choose death

veronique-hivon-dying-with-dignityTerminally ill patients in Quebec now have the right to choose to die.

The non-partisan Bill 52, also known as an act respecting end-of-life care, passed Thursday afternoon in a free vote at the National Assembly in Quebec City.

‘Dying with dignity means dying with the least amount of suffering,’— Véronique Hivon, PQ member of the National Assembly

The bill passed 94-22. There were no abstentions.

“Sometimes when you are suffering in pain, one hour can feel like one week.… The protection of the vulnerable is reflected in every aspect of this bill,” said Parti Québécois member of the National Assembly Véronique Hivon, who drafted the bill when she was minister of social services under the former PQ government.

Bill 52 allows for and outlines under which conditions terminally ill Quebecers can request to receive medical aid in dying.

gaetan-barette-veronique-hivon

Health Minister Gaétan Barrette, right, stood with members of the National Assembly from the three other parties (including Véronique Hivon, who drafted the bill) in late May to affirm the cross-partisan support for Bill 52. (CBC)

The main indicator for requesting medical aid in dying is “an incurable disease, an incurable illness, which is causing unbearable suffering.”

“For me, dying with dignity means dying with the least amount of suffering … and respecting who that person always was during his or her whole life,” Hivon said in the National Assembly before the vote took place.

Her speech was followed by applause and a standing ovation.

Liberal Christine St-Pierre was one of the 22 who voted against Bill 52.

“I don’t believe it’s right to give [anyone] the power to kill somebody,” St-Pierre said.

This legislation is the first of its kind in Canada. Its passage comes at a time when the right to die is being heavily debated in the rest of the country.

The Parti Québécois tabled the bill nearly a year ago after years of work from both the PQ and the Liberal government that came before it.

A committee on dying with dignity was assembled during Jean Charest’stenure as Quebec premier to study the issue and produce a report.

Its massive report, filed in March 2012, provided the foundation for Bill 52.​

However, Liberal Leader Philippe Couillard refused to play ball with the PQ when the party tried to force the bill into passage right before calling an election. Bill 52 died on the order paper as a result.

During the 2014 Quebec election campaign, Couillard promised to reintroduce the bill as it was drafted at the earliest possible moment during the new parliamentary session.

He also got the support from all four parties to reintroduce the bill at the stage it had died, instead of starting from square one.

It was reintroduced in late May by the new Liberal government.

Liberal Health Minister Gaétan Barrette made that announcementwhile standing side by side with MNAs from the three other parties.

“Between the four of us, we think the bill will pass strongly,” Barrette said at the time.

Complete Article HERE!

A ‘Code Death’ for Dying Patients

By JESSICA NUTIK ZITTER, M.D.

Sadly, but with conviction, I recently removed breathing tubes from three patients in intensive care.

As an I.C.U. doctor, I am trained to save lives. Yet the reality is that some of my patients are beyond saving. And while I can use the tricks of my trade to keep their bodies going, many will never return to a quality of life that they, or anyone else, would be willing to accept.

Code DeathI was trained to use highly sophisticated tools to rescue those even beyond the brink of death. But I was never trained how to unhook these tools. I never learned how to help my patients die. I committed the protocols of lifesaving to memory and get recertified every two years to handle a Code Blue, which alerts us to the need for immediate resuscitation. Yet a Code Blue is rarely successful. Very few patients ever leave the hospital afterward. Those that do rarely wake up again.

It has become clear to me in my years on this job that we need a Code Death.

Until the early 20th century, death was as natural a part of life as birth. It was expected, accepted and filled with ritual. No surprises, no denial, no panic. When its time came, the steps unfolded in a familiar pattern, everyone playing his part. The patients were kept clean and as comfortable as possible until they drew their last breath.

But in this age of technological wizardry, doctors have been taught that they must do everything possible to stave off death. We refuse to wait passively for a last breath, and instead pump air into dying bodies in our own ritual of life-prolongation. Like a midwife slapping life into a newborn baby, doctors now try to punch death out of a dying patient. There is neither acknowledgement of nor preparation for this vital existential moment, which arrives, often unexpected, always unaccepted, in a flurry of panicked activity and distress.

We physicians need to relearn the ancient art of dying. When planned for, death can be a peaceful, even transcendent experience. Just as a midwife devises a birth plan with her patient, one that prepares for the best and accommodates the worst, so we doctors must learn at least something about midwifing death.

For the modern doctor immersed in a culture of default lifesaving, there are two key elements to this skill. The first is acknowledgment that it is time to shift the course of care. The second is primarily technical.

For my three patients on breathing machines, I told their families the sad truth: their loved one had begun to die. There was the usual disbelief. “Can’t you do a surgery to fix it?” they asked. “Haven’t you seen a case like this where there was a miracle?”

I explained that at this point, the brains of their loved ones were so damaged that they would most likely never talk again, never eat again, never again hug or even recognize their families. I described how, if we continued breathing for them, they would almost definitely be dependent on others to wash, bathe and feed them, how their bodies would develop infection after infection, succumbing eventually while still on life support.

I have yet to meet a family that would choose this existence for their loved one. And so, in each case, the decision was made to take out the tubes.

Now comes the technical part. For each of the three dying patients, I prepped my team for a Code Death. I assigned the resident to manage the airway, and the intern to administer whatever medications might be needed to treat shortness of breath. The medical student collected chairs and Kleenex for the family.

I assigned myself the families. Like a Lamaze coach, I explained what death would look like, preparing them for any possible twist or turn of physiology, any potential movements or sounds from the patient, so that there would be no surprises.

Families were asked to wait outside the room while we prepared to remove the breathing tubes. The nurses cleaned the patients’ faces with warm, wet cloths, removing the I.C.U. soot of the previous days. The patients’ hair was smoothed back, their gowns tucked beneath the sheets, and catheters stowed neatly out of sight.

Then, the respiratory therapist cut the ties that secured the breathing tube around the patients’ neck. As soon as the tubes were removed and airways suctioned, families were invited back into the room. The chairs had been pulled up next to the bed for them and we fell back into an inconspicuous outer circle to provide whatever medical support might be needed.

I stood in the back of the room, using hand motions and quietly mouthing one-word instructions to my team as the scene unfolded — another shot of morphine when breathing worsened, a quick insertion of the suction catheter to clear secretions. We worked like the well-oiled machine of any Code Blue team.

Of those three Code Death patients, one died in the I.C.U. within an hour of the breathing tube’s removal. Another lived for several more days in the hospital, symptoms under watch and carefully managed. The third went home on hospice care and died there peacefully the next week, surrounded by family and friends.

I would argue that a well-run Code Death is no less important than a Code Blue. It should become a protocol, aggressive and efficient. We need to teach it, practice it, and certify doctors every two years for it. Because helping patients die takes as much technique and expertise as saving lives.

Complete Article HERE!

With a little help from my friends

“I was just sitting here thinking about what would be on my mind if I were in your place, facing my imminent death. I suppose I would be thinking about immortality, not in any conventional sense of that word, but more in terms of my legacy. I guess I’m really self-conscious, or maybe it’s vanity, I don’t know, but I think I’d be wondering about my contribution to this wounded world.”

My good friend Kim called me out of the blue. She asked if I would be available to consult with a couple of her friends, James and Rebecca. James is dying.

I didn’t know Rebecca or James personally, but I had heard a lot about them from my friend Kim. I talked to Rebecca briefly by phone and accepted an invitation to visit with them the very next day. When I arrived at their home, I found James very close to death. The scene was calm and, at first glance, everything seemed to be in order, but the tranquility was deceptive.

challenges aheadRebecca began by telling me that she thought something was wrong. “What do you mean, wrong?” I asked.

“I don’t know. I can’t put my finger on it exactly. James has been actively dying for weeks. Why is it taking so long? We’ve prepared for the end in the best way that each of us knows how, both psychologically and physically. Everyone has been extremely helpful. Hospice has been wonderful. But we never thought it would turn out to be such a marathon. We’ve been waiting and waiting for what seems like forever for the end but it doesn’t happen.”

She went on to say, “Don’t misunderstand, I’m not impatient for James to die, but there’s something unnerving about all of this that has us both on edge. It’s like standing at the airport fully packed for a long trip waiting to board a flight that never arrives. It’s been exhausting for the both of us. I can’t help but think we’ve overlooked something. I’ve quizzed James about it, but he doesn’t know what it could be either. That’s when Kim suggested we talk to you. We’re both afraid that our impatience and anxiety is going to disrupt the tranquility we’ve worked so hard to achieve. Can you help us?”

James confirmed what Rebecca told me. “Look at me! There’s nothing left that works, I can barely see anymore. It’s pathetic. I should have been dead by now. Even my hospice people are surprised that I’m lingering. I think I’ve been extremely patient so far, but this is ridiculous. I want this to be over, damnit. I don’t know how much more of this I can take.”

There was a blockage, no doubt about it. I could feel it all around me. Had they overlooked something important? I thought I’d better try and find out.

“James, is there anything left undone? Did your restaurant sell?”solutions

“Yeah, months ago. I’m satisfied that we’ve taken care of every last legal detail. I’ve even had two different lawyers sign off on the deal.”

“How about family; any unfinished business there?

“No, my parents are here, sisters and brothers have all been through here at one time or another. I’m feeling real good about all of my relationships.”

I was stumped. They appeared to have thought of everything. Nothing seemed out of place. So why did we all feel on edge? We sat quietly for a while and then I said, “You know, James, maybe it’s something metaphysical.”

“You mean like God and heaven and that sort of thing?”

“Yeah, in a roundabout sort of way. I was just sitting here thinking about what would be on my mind if I were in your place, facing my imminent death. I suppose I would be thinking about immortality, not in any conventional sense of that word, but more in terms of my legacy. I guess I’m really self-conscious, or maybe it’s vanity, I don’t know, but I think I’d be wondering about my contribution to this wounded world. Since I think about this a lot and I’m not sick, I’m sure that I’d be concerned about it as I lay dying. We’re not such different people, you and I. Do you ever wonder about the impact you’ve had on your world? Is any of this even making any sense?”

Silence. Then tears pooled in his eyes.

“You know, I’ve been a foodie all my life. When I moved to the Bay Area thirty years plus ago it was because it’s the center of the food world. All the world’s greatest cuisines come together here. It’s the culinary Mecca. This town really appreciates the creativity and art involved in cooking. I’ve had the good fortune to work with the best chefs in the world and, in turn, they’ve shared my table. I was good; I mean I was real good. And now that I’m dying, no one has asked me for my recipes. Was it all for nothing?”

I get by with a Little help from my friendsWe were all stunned by what we were hearing. Rebecca spoke first.

“Sweetheart, your friends would never think to ask you for your recipes. They all secretly covet them, of course, but asking for them would be out of the question. It would be kind of ghoulish, don’t you think? Like vultures hovering, waiting to pick over a carcass. And you have to admit that you haven’t been particularly forthcoming about any of this yourself.”

“Yeah, I know, but I’m dying. It’s different now. It’s my legacy, just like Richard said.”

Two days later a simple but elegant ritual had been prepared. Champagne was chilled, a couple of friends were called, and James directed Rebecca to fetch his treasure. Choking back tears of gratitude, he blessed us all.

“Thanks for making this such a great ride, you guys.”

As he said this, he handed each of us a memory stick, which held the booty. James entrusted us with his cookbook manuscript in the hopes that we would have it published after his death. He insisted that the title be: Food to Die For. We promised that we would do our best and thanked him for his trust and friendship.

I guess that took care of that, because seven hours later James was dead.