How to Talk About Dying

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I was 25 when I flew home for my father’s last birthday. His cancer had returned and he would die three months later at the age of 57. What I remember most about that weekend was the large rectangular gift box he opened. My mother had bought him a new suitcase.

I don’t know if that suitcase qualifies my family for the Denial Hall of Fame. There are so many contenders for that honor. But I’ve carried the psychic baggage over the years. I have never forgotten that image and how we lost a chance to say goodbye. I still wonder if my father was lonely in the silence that surrounded our inability to talk about what we all knew.

Decades later my mother began a long slow decline. By then, I was a newspaper columnist, a job that I often described as “telling people what you think.” I was professionally outspoken. But little had changed since my father’s death.

Yes, my mother and I talked about everything — but we didn’t talk about how she wanted to live toward the end. The closest we ever came to discussing her wishes was when she would see someone in dire straits and say, “If I’m ever like that, pull the plug.” But most of the time there is no plug to pull.

Gradually and painfully, my mother lost what the doctors call “executive function,” as if she were a C.E.O. fumbling with Excel spreadsheets, not a 92-year-old who couldn’t turn on the television or make a phone call. Eventually, she couldn’t decide what she wanted for lunch, let alone for medical care.

In some recess of my mind, I still assumed that death came in the way we used to think of as “natural.” I thought that doctors were the ones who would tell us what needed to be done. I was strangely unprepared, blindsided by the cascading number of decisions that fell to me in her last years.

I had to say no to one procedure and yes to another, no to the bone marrow test, yes and yes again to antibiotics. How often I wished I could hear her voice in my ear telling me what she wanted. And what she didn’t want.

When my mother died from heart failure and dementia, I began to talk with others. It was extraordinary. Everyone seemed to have a piercing memory of a good death or a hard death. Some of these stories had been kept below the surface for decades, and yet were as deep and vivid as if they’d just happened.

Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.

The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end.

So, a small group of us — each with his or her own story — started the Conversation Project, a nonprofit, out of the belief that surely we could make this easier. Our partners at the Institute for Healthcare Improvement gathered experts frustrated at the pace of change who believed that the health care system wouldn’t change until the culture changed. So we are trying to change the culture.

There is now, finally, a real momentum for improving end-of-life care. The signs range from the Institute of Medicine’s report, “Dying in America,” to the success of Atul Gawande’s book “Being Mortal.”

There is also a growing public awareness of the need to break through the reluctance that has kept us tongue-tied for so long. A survey we did last year showed that 90 percent of Americans now think it’s important to have the conversation. But the same survey showed something else: Only 30 percent of us have actually had these conversations. So the gap remains huge.

We still need to transform the cultural norm from not talking about how we want to live at the end of life to talking about it. The real work to close the gap is not just for doctors and patients. It’s for mothers and daughters, husbands and wives, families and friends. We have to bring people to the kitchen table to talk with those they love to have the conversation. And to do this before there is a crisis. Not in the I.C.U.

In our survey, the primary reason people gave for not talking to their loved ones was “It’s too soon.” But it’s always too soon … until it’s too late. Half of all elderly people in hospitals cannot make decisions for themselves at the end of life. Far too many health care providers are uncomfortable and untrained in these conversations.

From all the stories shared with us, we know that what people need most is help getting started. They need a travel guide to take the first steps down an unfamiliar and difficult road. So we created a Conversation Starter Kit, which deliberately avoids being a technical medical checklist for the dying in favor of a careful discussion guide for the living.

Our starter kit asks what matters to you, not what’s the matter with you. It asks what’s most important to you in the last phase of your life? Who do you want to make decisions for you? Where do you want to be? Do you worry that you won’t get enough care? Do you worry that you’ll get overly aggressive care?

About two-thirds of the nearly 300,000 people who have come to our website download the starter kit, which is free. We’ve been told repeatedly that conversations that had loomed as frightening and overwhelming repeatedly turned into the most intimate and rewarding moments.

Is it important to have the health care system ready to respect and record our wishes, to have health care providers become more comfortable beginning these talks? Of course. But the hard truth is that we have to begin ourselves — by thinking about our own values, by sharing them, by bringing our own beliefs into the center of the room when decisions will be made.

In my own adulthood, the culture of birth changed. It wasn’t doctors who first tossed out the stirrups and ushered in fathers and video cameras and “birthing rooms.” It was parents who said, birth is not just a medical experience, it’s a human experience. Now we are finally saying that dying, too, is not just a medical experience, it is also a deeply human experience.

Last winter we held a national dinner party to break bread and taboos, to eat comfort food and talk about dying. I shared the table with Nancy Frates, who is known for starting the A.L.S. ice bucket challenge to honor her son Pete. “Now I understand,” she told me. “The conversation is a gift to your family.”

When I helped found the Conversation Project, I thought we were doing this for people who were dying. I thought of my parents. I thought of “executive function” and “baggage.” What I have learned is that the conversation is also a legacy. This is the gift, maybe the last gift, we can give one another.

Complete Article HERE!

‘End of Life Option Act’ Offers Death with Dignity for Trans Man

California legislators and the Compassion and Choices coalition are pushing for a bill allowing terminally ill patients to shorten the inevitable dying process

BY

Michael Saum

In 1996, on the cusp of the lifesaving three-drug HIV cocktail, Eric Roberts starred inIt’s My Party by director Randal Kleiser, one of the first films to feature a gay man who not only insists on dying with dignity but doing so with a festive, emotional flare.

Roberts’ character had been diagnosed with an aggressive disease that would rob him of his mental acuity months before he would actually die, so he wants a goodbye party while he can still recognize the ones he loves. The film was Kleiser’s tribute to his own ex-lover, who died of AIDS in 1992.

In the film Roberts had a brain disease, so he still looked young, fit and beautiful. Most gays with AIDS surrendered vanity early on as their once-worshipped bodies were ravaged by the wasting syndrome or the purple lesions of Kaposi’s Sarcoma. They were rendered helpless and unrecognizable to themselves, an agony sometimes worse than the unrelenting physical pain. Death was a welcome blessing, and many were quietly helped to that end by bereft loving friends, lovers and family, despite the pall of illegality.

It was in this context that efforts to legalize physician-assisted suicide in California were launched in 1992, 1995 and 1999. But the prospect of a dying person choosing a good death became highly politicized by the religious right with the Florida case of Terri Schiavo, where Gov. Jeb Bush sided with the family and ordered her life prolonged, despite the wishes of her husband who said his wife expressly said she wouldn’t want to be kept alive in a vegetative state.

Today there is another effort underway in the California Legislature to pass a well-crafted bill—modeled on the successful death-with-dignity bill in Oregon—that even won the support of conservative Democrat U.S. Sen. Dianne Feinstein and the California Medical Association, which ended its opposition after 28 years.  On June 4, the State Senate passed the End of Life Option Act, SB 128, by 23 to 14, buoyed by a poll last year showing that nearly two-thirds of Californians favor giving a terminally ill patient the option to die peacefully. Currently Washington, Montana, Vermont and New Mexico also have medical-aid-in-dying laws.

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Co-authors Senate Majority Leader Bill Monning and Senate Majority Whip Lois Wolk, with support from the Compassion & Choices Coalitionintroduced SB 128 last January.  The bill has a “checklist” of safeguards to prohibit the possibility of abuse. Essentially the bill would allow a mentally competent, terminally ill adult (18 or over) the option of requesting (both orally and in writing) a doctor’s prescription for medication to shorten the inevitable dying process so they might die peacefully, without pain.

“I’m doing everything I can to extend my life. No one should have the right to extend my death,” out State Sen. Mark Leno  recalls one woman dying of lung cancer saying during a Senate hearing on the bill. Leno is a principal co-author of SB 128.

“I happen to be of the philosophical belief that government should not come between an individual and a decision he or she may make with a physician,” Leno says during a phone interview with Frontiers. “There is nothing more personal and of greater importance than our end-of-life choices. I don’t think government should be in the way. That’s what this bill does. It provides a choice for someone in a very specific situation.”

Leno knows something about this. He lost his partner Doug in 1990 and Doug’s younger brother in 1986. “Those of us of a certain age,” Leno says, “saw the tortured deaths of hundreds of friends” at a time when there was no hope of surviving. “So I’ve seen firsthand how cruel that can be.” And with aging parents and siblings approaching their last years, “it becomes a very real issue all over again.”

Leno says he found it “astounding” that a Republican colleague described his opposition to the bill by suggesting a terminally ill patient could drive over a cliff or shoot themselves in the temple instead. “The level of insensitivity is so extreme,” he says.

Michael Saum and Julia

Michael Saum, a 35-year-old transgender man who is dying from brain cancer (pictured in photo above with best friend Julia), wishes he had that option. Saum’s doctors think he will die in the next few months, before the bill reaches Gov. Jerry Brown’s desk.

“It’s not that I want to die; I don’t want to die,” Michael tells Frontiers. “I love life, but I don’t want to live like this.”

Saum was battling cancer for 14 years before going into remission—an 18-month respite during which he took the opportunity to become the man he always felt himself to be. His mother, who had been fine when then-Heidi came out as a lesbian, could not handle his transition. When he was diagnosed with Stage IV brain cancer that had spread throughout his body, he turned to his lesbian friends, most importantly his best friend Julia, whom he had once dated, to provide him refuge in her El Monte home and to take care of him. “It’s the kind of love I can’t even describe. She’s selfless,” he says.

Saum is currently at the strongest dose of painkiller allowed, but it’s not working. He has severe headaches, nausea, unregulated body temperature, short-term memory loss, unfiltered speech—“so many things go wrong” having big tumors in both the left and right frontal lobes.

“I’m in terrible pain every day, to the point that I’m crying nearly every day,” he says. “I’ve been told by my doctor that there is no chance for change, no miracle; no treatment is going to heal me.

“I think I’m going to pass before this bill is enacted,” Saum says, “but if it’s not there for me, I’m grateful I’m able to help others in my situation.”

Assemblymember Susan Eggman

Out Assemblymember Susan Eggman, Chair of the LGBT Legislative Caucus, is the lead principal co-author in the Assembly. A former hospice social worker who also lost friends in the ‘80s and ‘90s and cared for family members as they lay dying, she is uniquely positioned to understand the significance of SB 128.

“I come at this from a lot of different perspectives,” Eggman tells Frontiers. I believe—and I think polling shows—that Californians are ready for this.” Additionally, 17 years of research out of Oregon show that there is virtually no coercion or abuse.

“We know that oftentimes people don’t even go through with it. They just know that they have that option,” Eggman says. The bill is not for people who are depressed or seniors or disabled. “This is for somebody with a terminal illness, for which no cure is expected, and their end-of-life trajectory is within six months to a year.”

And, she notes, the End of Life Option Act is “for those who have had a certain degree of control in their life—this is something that is important to them.”

Perhaps more people than the dying and their loves ones are beginning to grasp the moral and ethical urgency of this bill. In a sharp contrast to the political and religious-based Schiavo controversy, a bipartisan poll conducted June 16-21 shows that nearly seven out of 10 Californians (69%) support SB 128, and that includes Catholics (60%), non-evangelical Protestants (65%) and evangelical Christians (57%).

Eggman is holding a hearing on the bill on July 7. The deadline to pass SB 128 in the Assembly is September 11.
Complete Article HERE!

Word For My Loss

The US Supreme Court ruled in favor of same sex marriage nationwide on what would have been my 28th anniversary with my late partner. Though we were never able to marry, I still consider myself a widower.

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“I am a widower.”

Those are four words I never imagined myself saying at my age. Maybe at 70 or 80. Mid-60s, if something terrible, like a plane crash or a terrorist attack, took one of us. Or never, if I was the first to go.

None of those scenarios took place.

I lost my partner, Gary Lussier, to liver disease two years ago. He was a wonderful man — a former dancer, handsome with a wicked sense of humor and a way of embracing the world that would shame most people. He didn’t get to embrace the world for long enough, though. He was 52 and I was 53 on the day I walked out of NY Presbyterian Hospital/Cornell Medical Center, dazed, confused and alone.

He died less than 24 hours before he might have had a successful liver transplant, slightly more than three days after I rushed him to the hospital, over a year since his illness began to manifest itself and about a quarter-century since we had joined our lives. Even though I was well past 50, I found myself in the “he’s too young for this to happen” category.

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Michael and Gary

And, of course, there was another complication: I was not married to Gary, even though we had been together 24.5 years. Though we had no legal document, ours was as true a union as any other. Emotionally supported by our two good families and a phalanx of friends, having the benefit of treatment in New York City’s best hospital and embraced by the staff of my company, St. Martin’s Press, I had the rare luxury of being able to consider my place in the world free from legal battles and financial concerns that can be real, threatening and, occasionally, life-shattering for the one left behind.

In the days after his death I began to ask myself, “What am I now?” I was no longer “partner.” I searched and searched for a word that defined me. Finally, I settled on the most obvious and yet, for me, most problematic word: widower. In choosing it I set myself the task of understanding its meaning.

I was also trying to find the courage to say it out loud.

Of course, “widower” implies “marriage,” “husband,” “deceased wife” and — in our world — “heterosexual.” We weren’t married. We referred to each other as “partners.” I am gay. The first time I said it out loud — “I am a widower” — I was alone in my apartment. The silence was so loud it threatened to crush me.

When that sentence broke the isolation I’d been living in. I knew I had found a word that would take me forward, but one that would provoke surprise in others. “Did he say ‘widower’?” I imagined people thinking to themselves at cocktail parties. “I didn’t know they were married…” they might say, in private, when they took off their pearls or undid their ties. Worse might come from hate mongers I didn’t even know. The question obsessed me: How could I call myself “Gary’s widower” and be true about it?

For me, the ability to say “widower” came down to the question of what the word “marriage” means. We’ve all been taught “marriage” refers to the moment when two people profess vows of love before a governmental or religious authority, rings are exchanged, documents are signed and the couple runs off to Happily Ever After. They are “married.”

There is, though, a deeper meaning, I think, of the verb “to marry,” a more private one concerning itself less with ceremony and legality than with the intimacy and commitment between two people: “to take as an intimate life partner by a formal exchange of promises in the manner of a traditional marriage ceremony.” Had Gary and I done that over the years? Did we have some formal exchange of promises?

Stephen Sondheim has a song about marriage describing it as “…the little things you do together…” We certainly had our fill of them throughout the years: Not just Thanksgivings and Christmases and Easters or trips abroad or weeks on the Ogunquit beach. No, we had more than that. We had almost a quarter century of eating pizza while watching television, having dinners with friends, arguing about how best to do the laundry, having a bang-up row in public, commiserating over each other’s daily work woes and celebrating each other’s triumphs. So, in that way, we did indeed have a marriage. Through millions of small acts, private and public, we were intimate life partners.

But, did we have a “formal exchange of promises” I wondered? Over the years, every night, we said “I love you” to each other before falling asleep. Were those not exchanges of a mutual promise renewed each day? I think they were. But, were they enough to pronounce us “married”? Did we have some deeper and more formal promise? In looking back, we did, though no clergy or justice of the peace was present.

We met when a legal marriage between two men was unthinkable. We also heard the revolutionary roar of “We’ll live together unmarried!” from both straight and gay couples. Now that marriage was actually possible, I had begun to think about how wonderful it would be to have a “husband,” someone to call my own, someone defined by a word that could not be mistaken for a business associate: “husband,” not “partner.” Just thinking of those words made me feel different: stronger, safer and — in a corny way — a man-in-love.

When the New York State gay marriage law was finally passed in 2011, we were at our house in Massachusetts where gay marriage was already legal. It was a beautiful day and we were in the garden, weeding. Gary seemed to be on the mend after his initial diagnosis and treatment. I had felt a strong “are we going to get married?” vibe from him since we heard the news. There in the garden, down on one knee as I was weeding around the boxwoods, I said, “Gary, will you marry me?” He was shocked. So was I. He said, in a typically Gary way, “Well, I don’t see a ring…” And, then, to my surprise, he said “No … not until you get me a ring …” as much with shock that I had asked as he was by the need to answer. I was crushed. I had never asked anyone to marry me before, but there it was. “No.”

Not long after that day, Gary began to spiral downward again and the incident was pushed aside by multiple hospital stays, the imperfect weekly calculation of his place on the liver transplant list, the day-to-day monitoring of weight, at-home visits from medical workers, frantic expeditions to specialty pharmacies and, most wrenchingly, the ups-and-downs of watching the person you love most in the world become increasingly and dangerously ill.

My marriage proposal remained buried in our garden until about an hour before Gary began to die. He was in the ICU, his liver failing (unbeknownst to me). He was drifting in and out of consciousness. During one lucid moment, he grabbed my hand, pulled me to him, eyes wide-open staring straight into mine, and said, “I do!” with such vehemence that it startled me.

I was speechless; but, since I was his chief cheerleader on the road to transplant, I said “Oh, no you don’t… we’ll do this right once you get your liver …” He laughed a little. If God or The Idea of God has to do with love, I like to think that He or She was present when that vow was made because, if true love has ever made itself manifest, it was in that moment. We finally had our formal ceremony and I clasped his hands tightly. An hour later, the massive hemorrhage that ended his life began and he lost all consciousness. Months later, I told a friend that I wished I’d said “I do, too!” and he said, “You did, on that day in your garden.”

I now understand that we were, indeed, married in so many ways that I have come to say, “I am a widower” with confidence, if with little joy. It’s not a nice thing to have to say. It puts people off, or — even worse — makes them want to take care of you when you least need it. That statement’s message is “I lost my spouse, but I am still alive. I’m standing on my own two feet and intend to go on living for as long as I can.” It means you freely have given a significant part of your life to someone who is now gone and that you are alone. It means, “I remain while he has moved on.” It also now, thankfully, has less relationship to gender preference. As Wendy Wasserstein wrote: “Love is love. Gender is just spare parts.”

How, then, do you say, “I am a widower”? It has nothing to do with age. Young or old, you say it plainly, like saying “armor,” knowing that nothing else can ever hurt you as much as your spouse’s death. You say it in the full knowledge that the union you had with your deceased spouse was as deep and as rich and as true as any other. You say it with remembrance and, most of all, you say it with love and pride for the spouse who has passed on — that singular, unforgettable human being who taught you, truly, how to love and to be loved.

“I am a widower.”

Complete Article HERE!

4 Surprising Ways Social Memorial Websites Help Your Families Grieve

By Rochelle Rietow


So, you’re a funeral professional, and you’ve got a pretty good idea of what makes your products and services valuable to your families. And if you’re really good at what you do, you’ve probably memorized the value statements for all of your products and know how to pitch your families on just about everything.

But did you know that there are valuable products out there that can actually inspire and help your families, even when you’re not around? For example, funeral products that can bring light to the darkness, not just for family, but for friends and loved ones all over the world. This is something I’ve spent some time thinking about, particularly when it comes to the value behind social memorial pages.

Since releasing our own social memorial websites over a decade ago, I’ve spent a great deal of time observing the true meaning and value that they bring to families – both during and after the funeral service. I’ve seen them turned into books that families keep on their coffee table. Heck, I’ve even seen them printed and kept on people’s desks as a reminder that they can get through their grief. And through all of these observations, I’ve come up with a few foundational ways that social memorial websites have added value to families’ lives over the years, and ways they can add value to yours, too.

  • 1. Continue the conversation of life after death

If you’ve ever lost someone, you may have had an experience like this before: You’re doing something that reminds you of your loved one and really want to tell them about it, but you can’t… who do you share it with? That’s where social memorial websites come in. They give you a space to write these thoughts, experiences and messages down. And when it comes to grieving, we all know the only way to heal is to speak your heart.

Another great feature of social memorial pages? People will see the message you wrote to your loved one and recognize it, respond to it, or maybe even share a new memory that they, themselves, created with your loved one. And they will be able to do this on your website for days, weeks, and even years to come, as f1Connect’s social memorial pages are hosted online forever. After all, the healing process is never really over, and we believe your family should be able to always come back to their loved one’s memorial page to reflect and share memories whenever they need to. It’s an ongoing conversation, and a really important one.

As you can see above, it’s easy for family and friends to continue the conversation of the loved one’s life by sharing memories, stories, and more. To view a live social memorial website, click on the photo.

 

2. Help families receive continuous support and healing

While going through a few social memorial websites, I read a message that someone wrote on their co-worker’s social memorial page when they heard the news of his passing. Once they came across the memorial page, they decided to share their own story of the co-worker, and what he meant to them. This gave the loved one’s mother, Cindi, a glimpse into a new story about her son that she had never heard before.

This beautiful story from the deceased’s co-worker was very healing to his mother, who may not have known this side to her son. Hearing how he impacted other people’s lives and was a positive influence can help with the healing process.

The situation might not have played out like this if it had happened any other way, or on any other platform. The co-worker may have been alone in his grief, because he wouldn’t have had this healing outlet to share his story and he may not have known about the funeral. And the mother may have never heard the heart-warming, caring story about her son if his co-worker wouldn’t have shared his sympathy online.

Social memorial pages allow us to do things a bit differently than we did before. Maybe we can even grieve in a more complete way because we have access to more memories, more people, and more support. In this case, I think it’s especially true.

3. Family and friends can see the real impact of their loved one’s life

One of the biggest advantages of a social memorial page is that they allow family and friends to share their own stories and memories of how a loved one affected their lives. This process is not only healing for the people who are sharing these moments, but also for the family of the loved one who may be hearing these stories for the first time. After all, it’s powerful to read just how many lives have been touched and changed just from the impact of one person.

One great example of this is the social memorial page for Benjamin Wheeler, a six-year-old who passed away in the Sandy Hook Elementary School tragedy that made national headlines. Even though his death occurred back in 2012, many people are still leaving stories and memories of how his life and his story have touched them on his social memorial page.

Just read the following message written on Benjamin’s social memorial page, from a family in Australia who heard about Benjamin’s tale and felt compelled to share their own story with those closest to him.

Keeping Benjamin’s social memorial page online forever on B.C. Bailey’s website allows family, friends, and others impacted by his story to leave their own memories and stories for years to come. This is a powerful healing tool for the family, as they know his legacy lives on long after he has gone.


4. They can help in unexpected, surprising ways

I’ll never forget the day that one of funeralOne’s employees ran up to me in tears and said, “Come quick, you have to see this!” She just witnessed a powerful moment that, through a twist of fate, could have only happened because of the existence of the social memorial websites our team created.

What had happened was, a man had been searching for a friend who he hadn’t seen in years (maybe even decades) and thought he had disappeared. After long hours spent on Google, he came across his friend’s social memorial page on a funeral home’s website. Finding out that his friend had passed away was sad news, but ultimately, it gave him closure to an unclosed chapter in his life. And through reading all the wonderful messages friends and family wrote on his tribute wall, he was able to feel close to his friend one last time.

This story goes to show that, when you introduce a new way to grieve and share memories, unexpected things will occur that help your families heal and remember, long after they step out of your funeral home.


How else will social memorial websites add value to your families?

As you can see, social memorial websites can play a pretty amazing part in families’ lives. And the great thing is, they’re only just beginning to change the way we deal with life, death and grief. In the future, social memorial websites could become an important, if not essential, part of our stages of grief. And with an ever-growing integration between our lives and technology, it’s pretty amazing to think about all the possibilities.

If you’d like to see the value of f1Connect’s social memorial websites first hand, be sure to click here and find out more about the website features your families are craving.

Complete Article HERE!

2015 End of Life Practitioners Collective unConference

Now Hear This…

Friends and colleagues,

The 1st unConference is in Estes Park, Colorado September 18-21, 2015. Join Us!


 2015 End of Life Practitioners Collective unConference

“An Anam Cara Gathering”

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 “When you connect with another person and become completely open and trusting with that individual, your two souls begin to flow together. Should such a deep bond be formed, it is said you have found your Anam Cara or soul friend…”   ~ Jen Donovan


Find all the information you need HERE!

And here’s the best part; any of my followers/subscribers will be given $10 off their ticket (link to get ticket: endoflifepro.org) and as a thank you, after the conference, they will count up the people who attended from my audience and donate $10 for every person who came, to my organization/work.

Please, take a moment of your time to check this out.  You’ll be so glad that you did.

Richard

The right to die

IT IS easy to forget that adultery was a crime in Spain until 1978; or that in America, where gay marriage is allowed by 37 states and may soon be extended to all others by the Supreme Court, the last anti-sodomy law was struck down only in 2003. Yet, although most Western governments no longer try to dictate how consenting adults have sex, the state still stands in the way of their choices about death. An increasing number of people—and this newspaper—believe that is wrong.

the right to die

The argument is over the right to die with a doctor’s help at the time and in the manner of your own choosing. As yet only a handful of European countries, Colombia and five American states allow some form of doctor-assisted dying. But draft bills, ballot initiatives and court cases are progressing in 20 more states and several other countries (see article). In Canada the Supreme Court recently struck down a ban on helping patients to die; its ruling will take effect next year. In the coming months bills will go before parliaments in Britain and Germany.

The idea fills its critics with dismay. For some, the argument is moral and absolute. Deliberately ending a human life is wrong, because life is sacred and the endurance of suffering confers its own dignity. For others, the legalisation of doctor-assisted dying is the first step on a slippery slope where the vulnerable are threatened and where premature death becomes a cheap alternative to palliative care.

These views are deeply held and deserve to be taken seriously. But liberty and autonomy are sources of human dignity, too. Both add to the value of a life. In a secular society, it is odd to buttress the sanctity of life in the abstract by subjecting a lot of particular lives to unbearable pain, misery and suffering. And evidence from places that have allowed assisted dying suggests that there is no slippery slope towards widespread euthanasia. In fact, the evidence leads to the conclusion that most of the schemes for assisted dying should be bolder.

Nothing is hurt, nothing is lost

The popular desire for assisted dying is beyond question. The Economist asked Ipsos MORI to survey people in 15 countries on whether doctors should be allowed to help patients to die, and if so, how and when. Russia and Poland are against, but we find strong support across America and western Europe for allowing doctors to prescribe lethal drugs to patients with terminal diseases. In 11 out of the 15 countries we surveyed, most people favoured extending doctor-assisted dying to patients who are in great physical suffering but not close to death.

No wonder that, just as adultery existed in Spain before 1978, so too many doctors help their patients die even if the law bans them from doing so. Usually this is by withdrawing treatment or administering pain-relief in lethal doses. Often doctors act after talking to patients and their relatives. Occasionally, when doctors overstep the mark, they are investigated, though rarely charged. Some people welcome this fudge because it establishes limits to doctor-assisted dying without the need to articulate the difficult moral choices this involves.

But this approach is unethical and unworkable. It is unethical because an explicit choice that should lie with the patient is wholly in the hands of a doctor. It is hypocritical because society is pretending to shun doctor-assisted dying while tacitly condoning it without safeguards. What may turn out to be more important, this system is also becoming impractical. Most deaths now take place in hospital, under teams of doctors who are working with closer legal and professional oversight. Death by nods and winks is no good.

Better is to face the arguments. One fear is that assisted dying will be foisted on vulnerable patients, bullied by rogue doctors, grasping relatives, miserly insurers or a cash-strapped state. Experience in Oregon, which has had a law since 1997, suggests otherwise. Those who choose assisted suicide are in fact well-educated, insured and receiving palliative care. They are motivated by pain, as well as the desire to preserve their own dignity, autonomy and pleasure in life.

Another fear is that assisted dying will downgrade care. But Belgium and Holland have some of the best palliative care in Europe. Surveys show that doctors are as trusted in countries with assisted dying as they are in those without. And there are scant signs of a slippery slope. In Oregon only 1,327 people have received lethal medicine—and just two-thirds of those have used it to take their lives. Assisted dying now accounts for about 3% of deaths in the Netherlands—a large number—but this is less a rush to assisted dying than the coming to light of an unspoken tradition in which doctors quietly brought their patients’ lives to an end.

Wear no forced air of solemnity or sorrow

How, then, should assisted dying work? For many the model is Oregon’s Death with Dignity Act. It allows (but does not oblige) doctors to prescribe lethal drugs to patients with less than six months to live who ask for them, if a second doctor agrees. There is a cooling-off period of 15 days.

We would go further. Oregon insists that the lethal dose is self-administered, to avoid voluntary euthanasia. To the patient the moral distinction between taking a pill and asking for an injection is slight. But the practical consequence of this stricture is to prevent those who are incapacitated from being granted help to die. Not surprisingly, some of the fiercest campaigners for doctor-assisted dying suffer from ailments such as motor neurone disease, which causes progressive paralysis. They want to know that when they are incapacitated, they will be granted help to die, if that is their wish. Allowing doctors to administer the drugs would ensure this.

Oregon’s law covers only conditions that are terminal. Again, that is too rigid. The criterion for assisting dying should be a patient’s assessment of his suffering, not the nature of his illness. Some activists for the rights of the disabled regard the idea that death could be better than a chronic condition as tantamount to declaring disabled people to be of lesser worth. We regard it as an expression of their autonomy. So do many disabled people. Stephen Hawking has described keeping someone alive against his wishes as the “ultimate indignity”.

One exception to this distinction should be children. The decision of whether to endure chronic conditions should be left until adulthood. But, as with adults, children facing imminent death from terminal diseases should, in consultation with their parents and doctors, have the right to be spared their last agonising hours.

The hardest question is whether doctor-assisted dying should be available for those in mental anguish. No one wants to make suicide easier for the depressed: many will recover and enjoy life again. But mental pain is as real as physical pain, even though it is harder for onlookers to gauge. And even among the terminally ill, the suffering that causes some to seek a quicker death may not be physical. Doctor-assisted death on grounds of mental suffering should therefore be allowed.

Because patients’ judgments may be ill-informed and states of mind can change, especially among the mentally ill, society should help people to die only when safeguards are in place. These should include mandatory counselling about alternatives, such as pain relief, psychotherapy and palliative care; a waiting period, to ensure that the intention is enduring; and a face-to-face consultation with a second, independent medical expert to confirm the patient’s prognosis and capacity. In cases of mental suffering the safeguards should be especially strong.

The most determined people do not always choose wisely, no matter how well they are counselled. But it would be wrong to deny everyone the right to assisted death for this reason alone. Competent adults are allowed to make other momentous, irrevocable choices: to undergo a sex change or to have an abortion. People deserve the same control over their own death. Instead of dying in intensive care under bright lights and among strangers, people should be able to end their lives when they are ready, surrounded by those they love.
Complete Article HERE!

How to plan for a good death

Sheila Kitzinger, the natural childbirth activist who died in April, pioneered the idea of birth plans. Her daughters, Celia and Jenny, describe how their mother made a death plan – so she could die at home according to her own wishes

By Celia and Jenny Kitzinger

Sheila Kitzinger

Sheila Kitzinger, the writer and natural childbirth campaigner.

Our mother, Sheila Kitzinger, champion of women’s rights in childbirth, died in April. In writing her own fantasy obituary for a newspaper many years earlier, she imagined dying at the height of her powers: “She died as she would have wished, flat on her back on a table with her legs in the air, in front of a large audience, demonstrating with vigour the dangers of making women lie down, hold their breath till their eyes bulge and strain as if forcing through a coconut to push a baby out. She claimed that treating the second stage of labour as a race to the finishing post … could result in cardiac arrhythmia and even a stroke. She made her point.”

Rather than the melodramatic early death she conjured up here, Sheila died quietly at home surrounded by her family, at the age of 86.

Sheila spent her life campaigning for autonomy and choice in childbirth and challenging the medicalisation of birth. She pioneered birth plans to support women in making their own decisions. When it came to dying, she expressed the same values of choice and control, and she planned ahead. She appointed one of our sisters, Tess, with lasting power of attorney for health and welfare and also wrote an advance decision. This preparation was invaluable in ensuring that her choices were respected and in allowing her to die at home as she wanted.

Being at home was essential to her idea of a “good death”. She wanted to be in familiar surroundings, on her own territory, with the support of those who knew her. She particularly did not want to go into hospital, aware as she was of the cascade of interventions that can befall people at the end of life, just as they can women in childbirth.

In her autobiography, she records that Cicely Saunders, founder of the modern hospice movement, once said to her backstage at a conference where they were both speaking, “You and I are doing the same work.”

Her concerns about hospital treatment had also been cruelly refined and reinforced by our family experience of the treatment of our sister, Polly, who was severely brain injured in a car crash six years ago. We were all very aware of how institutions have their own systems, policies and agendas that can strip control from the individual.

Sheila wrote about her own mother’s death decades earlier. Following a brain haemorrhage, her mother could no longer swallow, and Sheila resisted a feeding tube. “I consulted Father and we both agreed, ‘No. She would want to be at home. She wouldn’t want invasive procedures.’ Later he told me that he wished he had the courage to care for his father that way when he was dying. Instead, he had him admitted to hospital and everything was done to prolong his life by every means possible. Looking back on it, he thought it was wrong, and now he felt guilty.”

At 86, Sheila had cancer and many other diseases of old age. After the first bout of cancer a year earlier, she had accepted treatment. When the illness returned she declined further investigation or intervention.

As her health declined she lost interest in eating or drinking – it was painful to watch her become progressively thinner and more frail. At times she was able to enjoy someone reading to her, she would gamely invite the family join her to sip a little sparkling wine or eat a chocolate, and the ritual of tea at 5pm still seemed to give her pleasure. But it was deeply distressing to witness how vulnerable she became.

In the last few months of her life, Sheila stopped talking about planning her next book and talked with us about her wishes for her death. She also revisited and confirmed the short advance decision (AD) she had written some years earlier. This was a single paragraph (signed and witnessed, and legally binding on her carers and medical professionals) which declared: “If the time comes when I can no longer take part in decisions for my own future, I want to receive whatever quantity of drugs can keep me free from pain or distress, even if death is hastened. If there is no reasonable prospect of recovery I do not consent to be kept alive by artificial means. I do not wish to be transferred to hospital and should like to die in my own bed.”

Except for the last few days, when she was unconscious, Sheila was able to communicate her wishes herself. But her AD was immensely valuable in supporting her choices. Her GP surgery tried to insist, a few weeks before she died, that Sheila should be transferred to hospital after a “mini-stroke”. She said no. The GP questioned her mental capacity to refuse hospitalisation. We read out her AD and she stayed home.

Later her AD was useful when another doctor was considering transferring Sheila to hospital to clarify her diagnosis and it helped her to avoid various interventions. One of the last whole sentences Sheila said was, “I decline antibiotics if I get pneumonia” and, later, she nodded when offered morphine. Anyone in doubt about her capacity to make her own choices, or concerned to ensure they had done everything possible as a healthcare professional, could read her AD or talk with her LPA for health and welfare – and be empowered to provide “person-centred care” with confidence that they knew what her wishes were.

Sheila Kitzinger's coffin

Sheila Kitzinger’s simple cardboard coffin at her home, decorated by her family with peacock feathers and pictures of birds.

A home death is not right for everyone. We were lucky that Sheila’s symptoms were well controlled, and that’s not always possible at home. The whole situation placed many demands and stresses on the whole family. However, once it was (belatedly) agreed that she was at the “end of life” we were provided with well-coordinated NHS support. It also helped that we are a large family so when one of us was at the end of her tether, another could step in.

This support structure allowed Sheila to die, as she had lived, on her own terms. It also allowed us to have positive memories of the last weeks of her life – and that now helps us with our grief.

Sheila’s burial reflected the values she had lived by – and was shaped by her own distinct choices. She was critical of the “business” of funerals and preferred not to have her body handed over to the professionals. Instead, the day after she died, we – her daughters – washed and dressed her body one last time and carried her downstairs to place her in a bright orange cardboard coffin, decorated with peacock feathers.

Sheila opted for a simple, private burial – much to the surprise of some friends and colleagues who had expected an opulent public funeral extravaganza. Sheila wanted her body buried “without fuss”. So we carried her coffin from the house, to a tune from our time in Jamaica in the 1960s, placed it in the back of a car, and drove to a woodland burial ground. We lowered the coffin into the ground, scattered it with sprigs of rosemary and camellia blossom from our lovely garden and read some of Sheila’s own poetry:

“After the soaring, a peace
like swans settling on the lake
After the tumult and the roaring winds,

Silence.”

A humane way to end life

Deborah Ziegler holds a photo of her daughter, Brittany Maynard, with her husband Gary Holmes after the California Senate passed a bill allowing physicians to assist in the death of terminally ill patients.

 

LESS THAN a month before she died, Brittany Maynard posted a video explaining her decision to move to Oregon to take advantage of the state’s law allowing terminally ill people to end their own lives. Maynard, 29, had been diagnosed with an aggressive and terminal brain cancer and said she wanted to die on her own terms. “I hope to pass in peace,” she said. Her video, viewed more than 9 million times in the first month, and her death, after she ingested medication prescribed by a doctor, helped fuel a national movement for “death with dignity.”

In addition to Oregon, four other states — Washington, Vermont, New Mexico and Montana — allow physicians to provide aid in dying. After Ms. Maynard’s death in November, lawmakers in more than 20 states and the District — backed by advocates Compassion and Choices, and the Death with Dignity National Center — introduced end-of-life legislation. In many cases, the bills are pending; in states where they didn’t advance, including Maryland, lawmakers vowed to try again. A recent Gallup poll showed nearly seven in 10 Americans agree that terminally ill adults should have the right to medical assistance in bringing about a peaceful death.

Closely watched are events in California. Ms. Maynard lived there before moving to Oregon and in her final days she videotaped a plea to lawmakers to adopt a law similar to Oregon’s and lobbied California Gov. Jerry Brown (D) by phone. After the state medical association recently dropped its long-standing opposition, a measure passed the state Senate and is set for a hearing this month in the lower house; a lawsuit — a route successfully used in New Mexico and Montana — also is being pressed with the claim that both the state constitution and existing state law allow the medical practice of aid in dying.

Meanwhile, D.C. Council member Mary M. Cheh (D-Ward 3) has sponsored a bill modeled on Oregon’s law for the nation’s capital. That has the potential to bring Congress into the debate.

The issue stirs strong emotions. Some opponents, including the Catholic Church, cite religious or moral grounds, seeing any form of assisted dying as anathema to teachings that life is never to be taken. Some physicians believe the practice violates their oath only to heal, and some disability rights activists fear that they will be vulnerable to abuses. Others warn of a slippery slope to euthanasia.

Oregon’s 18 years of experience do not confirm any of these fears. Enacted in 1997, Oregon’s Death with Dignity Act allows terminally ill adults who are residents of the state to obtain and use prescriptions from their physicians for self-administered lethal doses. Stringent protections include a life expectancy of less than six months, a finding of mental capability, a concurring opinion from a second doctor, mandatory discussion of hospice and other options, waiting periods and more.

Oregonians have made sparing use of the law, with 859 deaths as of Feb. 2 . The state collects data on each case, and there have been no reports of coerced or wrongly qualified assisted deaths. The typical patient is about 71, suffering from terminal cancer, well-educated, with health insurance and enrolled in hospice. About one-third of prescriptions were never used, suggesting some terminally ill people are comforted by knowing they have an alternative to extensive suffering should they need it.

Such suffering has been described by Diane Rehm, the WAMU-FM radio host. Her husband, incapacitated by Parkinson’s disease and without an Oregon-style option, starved himself to death over an agonizing 10 days. Barbara Blalock, a Rockville doctor, said at a joint Maryland legislative committee hearing that she has had patients ask, “Is there a way that we can avoid intolerable suffering at the end of life?” Dr. Blalock said she often has to say no, “and I always felt as a physician I was failing them in some way.” Ms. Maynard said of her decision: “I do not want to die. But I am dying. And I want to die on my own terms.”

Death with dignity laws need to be carefully thought out, written and monitored. Oregon and the states that followed its example show that such care is possible. We hope the rest of the nation catches up with this humane option for life’s end.
Complete Article HERE!

Sometimes people say the silliest things

god's plan

Sesame Street: talking about grief before it was cool

Mr. HooperSesame Street was talking about grief before it was cool.  Okay, so talking about death and grief still may not be cool (wait, do people even say “cool” anymore?  Am I showing my age?).  Let’s just say this: Sesame Street was tackling this topic long before the internet was full of tools and activities for supporting grieving kids.  As early as 1983 they were helping kids understand death and grief.  30 years later they are still at it, better than ever.

Then

The first time Sesame Street really tackled death was when Mr. Hooper died in an episode that aired on Thanksgiving Day in 1983.  When Will Lee, the actor who played Mr. Hooper, died of a heart attack there were many ways that Sesame Street could have handled it.  Rather than shying away from the topic of death and grief, Sesame Street used this as an opportunity to do what they do best – teach.  In the “Farewell, Mr. Hooper” episode, Sesame Street used Big Bird to help kids understand death and grief.

Now

In 2010 Sesame Street and Sesame Workshop received grants through a number of defense organizations and Walmart to put together resources for children on grief and loss. Launched with a great TV special, they put together an incredible combination of resources for grieving kids and adults supporting those kids.  Many of these resources are available for free viewing and download.  Check out a preview of the video here of the special done with Katie Couric, Elmo, and the families of several children who have experienced losses:

Or check out the whole video by going to the PBS website HERE!:

Go to the When Families Grief website to view video clips and download an array of tools and resources, including grief journal pages, a memory chain activity, and care cards.  You can check out their entire free, downloadable parent/caregiver guide here.  They also have a great storybook for kids that you can print for free here.  And in case that wasn’t all amazng enough, every bit of what they offer is available in English and Spanish.  Seriously, Sesame Street, you guys are the best.

Other Tough Times

Over the years Sesame Street has kept up this trend of tackling tough topics head on, to help kids in times where they may feel unsafe, unsure, scared or confused.  After 9/11 Sesame Street helped kids with fires and emergencies in an episode on a fire at Hooper’s Store.

After Hurricane Katrina Sesame Street tackled this topic through a series of episodes about a hurricane on Sesame Street.

 

Love Never Dies

In 2004, 21 years after Mr. Hooper’s death on the show, Grover takes Elmo on a walk (cab ride) down memory lane.  At the very start of this journey Elmo learned about Mr. Hooper and how Hooper’s Store got his name.

 

To this day Mr. Hooper’s picture still hangs above Big Bird’s nest and can be seen in the hurricaneMr. Hooper episodes.  Thanks Sesame Street, for facing this tough topic head on.  And thanks for reminding kids (and all of us) that those we love and lose remain part of us, even 30 years later.

Related Posts:

  1. Talking to Children About Death: The danger of euphemism
  2. Speaking Up About Grief, Vol 5
  3. Happy Blog-i-versary to What’s Your Grief!!
  4. Speaking Up About Grief, Vol 6

Complete Article HERE!