What Kind of Friend Are You?

Victoria Noe
Victoria Noe

Victoria Noe promised a dying friend that she’d write a book about people grieving their friends. That book became the Friend Grief series. Victoria will guest host our weekly #DWDchat on this topic this Thursday at 4:00pm PT/7:00pm ET. Join if you have time!

I’ve become obsessed of late with my prospect of my friends’ deaths—or more accurately, their final illness.

Over lunch, over drinks, over the phone, I’ve asked them a loaded question: “Would you tell me if you were sick?” I’ll tell you some of the answers in a moment. First, let me explain why I’m asking.

It’s not just that most of my friends are also baby boomers. It’s not just that we’ve all experienced the deaths of friends. It was the way two of my friends conducted themselves.

Carol’s recurrence of breast cancer made an already very private person even more reclusive. She wouldn’t allow any friends to see her, to visit her, in the hospital or at home. She would only talk to a select few on the phone. Why I was one of them, I still don’t know, as we weren’t the closest of friends. Maybe she knew I was willing to talk about anything and everything—except what she was going through.

Delle thrived on the friends around her. Through each occurrence of ovarian cancer, she seemed to gather strength not just from her faith, but from her friends. “Delle’s Elves”, we called ourselves, bringing meals, chauffeuring her daughter to after-school activities, filing, cleaning. Whatever she needed, we were there ready to do it. We couldn’t keep her alive, but we could help do something to make her final days bearable.

It should be no surprise that there were a lot of angry friends at Carol’s wake. We sat in the back of the funeral home parlor not talking much. The tears were not just for our loss but our inability to help her through her final days. Those who packed the church for Delle’s funeral were devastated, but not angry at her.

Both women had every right to live their lives as they wished. But for those of us left behind, well, the grief was different when we were shut out.

I didn’t start asking my friends “would you tell me if you were sick?” until years later. Maybe it’s just my natural tendency to be a control freak. Maybe it’s just my age. But the answers were important to me.

One of my friends has been very open about her health, and easily asks for—and gets—help from us. Two others—friends since the 60′s—said “probably not”. I expected that answer from one of them, but not the other. I was absolutely sure I wanted to know the truth from everyone, until I almost got bad news—twice.

I called a friend the night before he was to have major surgery. Everything was fine until he told me he’d asked his partner to put me on the short list of people to call if something went wrong. For a moment, I couldn’t breathe. “Are you upset?” he asked. “Of course I’m upset,” I snapped when I finally found my voice. “You just told me I’m on the short list if something bad happens.” “Well,” he said, “I knew you’d be more pissed off if you weren’t.”

Not long after that, I was having lunch with an old boyfriend and asked him the question. “I’m not sick,” he insisted. I asked again if he would tell me. “Why wouldn’t I?” By then, I’d stopped making assumptions about what my friends would do, but I was happy about his answer.

Maybe a year and half later, we were having lunch again, and there was a pause in the conversation. He looked at me hesitantly. “I had chest pains three days in a row.”

We’ll skip over the part where I wanted to yell at him for waiting three days to go to the emergency room. This was exactly the kind of thing I’d asked for: keep me in the loop, let me know if you’re having a health crisis. But now, faced with it—and the knowledge that his father had died of heart problems—was something very different. I struggled to not burst into tears, and listened to his explanation of what turned out to be something quite benign.

I’ve known both of my friends long enough to know that though they were willing to keep me informed, neither one wanted to upset me. And that is part of the conundrum.

Friends are frequently left out during a person’s final illness. The family comes first, and may even decide to keep friends away from their dying relative. I saw a lot of that in the beginning of the AIDS epidemic. But I’m not talking about legalities here.

Everyone should have the right to make their own decisions, especially when it comes to end of life issues. Carol and Delle both handled their final illness the way each thought was best. I’m pretty sure part of Carol’s reluctance to be seen was so she could avoid getting “the look”—the way people look at you when you’re really sick, when you’re dying. The person dying winds up being a caregiver for those around them. Delle probably comforted more people than comforted her, until she no longer had the strength to do that.

I wonder sometimes what they would think of the other question I’ve asked the ones who were split on whether they’d share the news of their final illness with their friends. Because this question generated a “yes” from everyone: “Would you want to know if your friend was dying?”

They all said yes. Ironic? Maybe. And they all gave the same reason: “So I could help them.”

That’s what it’s all about, isn’t it? To help your friend when they need the comfort of those who know them best. Wouldn’t you jump at the chance to help them anyway you could? Of course you would.

The question for you is, would you let them do the same for you?

View full post on Death with Dignity National Center

A Christian Argument For Physician Assisted Death

Rainbow by Rachel Coyle
Rainbow by Rachel Coyle

Brittany Maynard’s story has prompted discussions about our model legislation, the Oregon Death with Dignity Act, throughout the US. Over the last week, we’ve heard from hundreds of people in support of Death with Dignity. The guest post below by Rachel Coyle is republished with permission. The article originally appeared on Rachel’s blog, Of a Moderation.

I have watched a lot of people die.

After college, I spent nearly two years providing patient care in the emergency department of a Level 1 trauma center. Today, I work with hospice patients, offering comfort to those who have 6 months or less to live.

I am also blessed with a big, loving, Catholic family. Our faith has played a major role in shaping each of us throughout the years.

In fact, it’s safe to say religion has played a major role in every aspect of my life.

Yet I firmly believe in the right of our terminally ill to die with dignity.

Many of the recent arguments against physician assisted death have been religious ones. Though it’s wonderful to see most protestors stating their positions with love and respect, I want to clearly express that religious individuals can and do support Death with Dignity laws.

While training to work with the terminally ill, you’re taught to give patients as much control over their lives as you can. Do they want to sit in the bed or the chair today? Do they want to listen to music or watch a movie?

These minor choices allow ailing patients to feel as though they have a say in the last moments of their lives. Options are a small comfort—and comfort is our main goal when caring for those transitioning from life into death.

Humanity now possesses the ability to give our terminally ill a truly meaningful choice—the choice to go peacefully to God before their suffering reaches its peak.

Through the gift of scientific knowledge, we can allow our dying to choose the sort of death that is the most peaceful and comforting option for themselves and for their loved ones.

The gift of peace. The gift of comfort. Why would we ever deny the right to such blessings?

“Do not withhold good from those to whom it is due, when it is in your power to do it” (Proverbs 3:27).

Of course, the decision to end one’s life peacefully before a disease completes its course is not for everyone—nor should it be.

Some believe God wants us to wait until we’re taken naturally. Others want to spend every available minute with their loved ones, even if it means enduring additional suffering. All of these beliefs and decisions are valid.

We may know what is best for ourselves, but we cannot assume to know what God requests of others.

“Therefore let us not pass judgment on one another any longer, but rather decide never to put a stumbling block or hindrance in the way of a brother” (Romans 14:13).

I also believe strongly that scientific knowledge is a gift. God has given us intelligence, which we can use to ease suffering and improve the world around us.

“As for these…God gave them learning and skill in all literature and wisdom” (Daniel 1:17).

“Having gifts that differ according to the grace given to us, let us use them” (Romans 12:6).

We can take comfort in the realization that human knowledge is being used to ease suffering and provide options to those who have very few left.

I can’t fault anyone who wants to cling to their last earthly moments with a loved one. I know for a fact that I do the exact same thing when faced with similar circumstances.

When the time comes for us to discuss physician assisted death with a loved one, we are free to express any concerns we have about their potential decision. Perhaps such a choice is not best for our family.

However, we must remember: this it is not our decision to make for those whose lives we do not know.

Unfortunately, our wish to hold on to our loved ones for as long as possible is often a selfish desire. Our longing is born out of love, but it might not be what’s best for the person who is dying.

In fact, I have known many families who suffer less when a loved one goes quickly.

These families are comforted by the knowledge that the death was not drawn out or filled with excessive suffering.

If a dying person is mentally capable of consulting loved ones and choosing to die with dignity (and I do believe a healthy cognitive state should be required in these cases), then we must have faith that the decision was good for those involved.

It is not our right to claim to know God’s plan for others.

It is not our right to take from others the ability to shorten suffering, even if we believe the path we would choose is best.

I’m grateful that we have the intelligence to debate these important issues. I’m grateful for the knowledge that everyone sharing their opinion is speaking from a place of love for those who are suffering.

Please consider this post when the time comes for your state to decide whether to allow terminally ill patients to die with dignity.

There is no cause more important than one that offers peace to those who suffer.

View full post on Death with Dignity National Center

Never Say Die: Why can’t we embrace life’s most inevitable fact–that it will end?

Brittany Maynard, image from interview with CBS

Brittany Maynard’s story has prompted discussions about our model legislation, the Oregon Death with Dignity Act, throughout the US. Over the last week, we’ve heard from hundreds of people in support of Death with Dignity. The guest post below by Glenn Hodges is republished with permission. Glenn is a journalist (formerly with National Geographic and The Washington Monthly). The article originally appeared on Glenn’s blog, Sounding Line.

It has been a busy month for death—or, more accurately, since death is always busy, a busy month for the discussion of death.

First, in mid-September, Ezekiel Emanuel caused a stir by writing in The Atlantic that he wanted to die at age 75, before his faculties dimmed too much, before his life became a litany of medical concerns. “Dying at 75 will not be a tragedy,” he wrote. “Death is a loss…But here is a simple truth that many of us seem to resist: living too long is also a loss.”

Emanuel, 57, said he wasn’t planning to end his life at 75, only that he would not pursue health care strategies designed to prolong it past that point. But as the director of the Clinical Bioethics Department at the NIH and one of the engineers of the Affordable Care Act (aka Obamacare, aka death-panel central) his piece was a magnet for criticism, and one of the most scathing attacks came from Damon Linker, a writer for The Week. Emanuel’s article “clearly amounts to a defense of eugenics,” Linker wrote, because it suggests that only lives in top condition are worth living.

That’s an interesting assertion—problematic, but interesting—but I’m not going to take it up here. Instead, I want to look at Linker’s concluding remark, because it appears to reveal the real foundation of his objection: “No one should hope to die—at 75, 80, 90, or ever.”

No one should ever hope to die. I find that an astounding thing to say, and my response is simple: Why on earth not? Is death such an unremitting evil that it is never preferred to life, no matter how onerous life becomes? On what basis do you come to that conclusion?

My grandmother is 96. She has lived a good life, but the last several years have been difficult for her, and in the past few months a cruel cocktail of dementia and assorted physical ailments have sent her bouncing between hospitals and elder care facilities. When I saw her in early September, she was confused and weak. When my mother saw her a week later, she had no idea what was happening to her, and often didn’t even recognize her own daughter. She is now in the nursing home where she will die, and I think everyone who loves her is hoping and praying that it will be sooner instead of later. Not for our sake, as the life-at-all-costs crowd would allege, but for hers.

Several times in the last few years, as she watched her faculties decline, my grandmother said to me, “I wish the good Lord would just take me.” This, from my stoic grandmother who never complained about anything, who always made herself smile through life’s difficulties, who never allowed herself to admit depression or despair into her life. After a lifetime of bearing up to her responsibilities with cheer, she has no right, according to Linker, to hope to die.

I don’t know why Linker thinks death is so awful, but I suspect it’s the same reason we as a society spend most of our health care resources trying to keep people like my grandmother alive as long as possible: fear. That fear is often couched in religious belief—belief that a Heavenly Father created us to live as long as He dictates—but at bottom it is still a belief that death is a terrible thing, and life is always preferred to it, no matter how bad life becomes. Death—natural and inevitable, the cessation of struggling and striving—is feared as an evil. Mark Twain nailed the irrationality of it: “All say, ‘How hard it is that we have to die’—a strange complaint to come from the mouths of people who have had to live.”

The second death story went viral last week. It is much more visceral than Emmanuel’s. In it, Brittany Maynard, a 29-year-old woman with terminal brain cancer and less than six months to live, explains why she is planning to end her life with an overdose of medication instead of allowing the cancer to take its ravaging course. “I do not want to die,” she wrote in a piece for CNN. “But I am dying. And I want to die on my own terms.”

Maynard has become a poster-child for the right-to-die movement, and she is an ideal spokesperson: attractive, eloquent, with a tragic story (diagnosed on New Year’s Day, a year after her wedding) and all the right bonafides of medical courage (two surgeries, including a partial craniotomy). Despite that—or because of it—she has also become a lightning rod for critics of the movement, and they all seem to rest their case on the simple assertion that life has value.

If you were to Google “Brittany Maynard” on October 10, the third entry from the top (higher even than Maynard’s own CNN piece) was a piece by Matt Walsh for a website called The Blaze, titled “There is Nothing Brave About Suicide.”

“LIFE HAS VALUE,” Walsh writes. “If you deny this, you deny everything. There is no reason for justice, fairness, equity, compassion, or charity if human life has no value, or merely a value contingent upon whatever parameters we’ve arbitrarily asssigned.”

The thing is, no one disputes that life has value. It’s just that other things have value, too. Self-determination has value. Freedom from suffering has value. Dignity, to borrow terminology from the right-to-die/death-with-dignity movement, has value. And even death has value. It is death that makes our choices matter; it is death that makes our response to death a vital matter.

“Life is to be lived like a cup we drink until the last drop,” Walsh says. But why? Why, if the last dregs are cold and bitter, must they be drunk? Why should nature—fickle, brutal, indifferent—be given the last word on death, when we are so insistent on trying to trump it in every other aspect of life? Does our human agency stop at some invisible line, where suddenly all our efforts to master our experience yield to a passive submission to whatever winds blow our way? Forestalling death as long as possible is not an act of spiritual valor; it is timidity, even cowardice.

Here’s Maynard’s plan for her last day on Earth: “I will die upstairs, in the bedroom that I share with my husband, with my mother and my husband by my side.” She will be conscious, in possession of her wits, not stripped of her capacity to recognize her loved ones. “I can’t even tell you the amount of relief that it provides me to know that I don’t have to die the way that it’s been described to me that my brain tumor would take me on its own.” How exactly is that the wrong choice? She is taking the reins from the brain tumor and deciding that she will make the call, that she will live not as a victim but as a fully fledged human being. That strikes me as an affirmation of life, not an abrogation of it.

Another Maynard critic with enough circulation to make it onto my radar (which is a blunt instrument, so it takes some doing), Katrina Trinko on the Daily Signal, also rested her case on the value of life. “It’s valuable always,” she writes. “No matter what.” Then she describes the long lingering dying process of her own grandmother, as she lost the capacity to walk, and see, and dress herself, and use the bathroom. “I don’t know why she was allowed to suffer like she did,” she says. “I’ll probably never know.”

I hate to be definitive in the face of a cosmic mystery like life and death, but here’s why she was allowed to suffer like she did: because we insist on that suffering. We insist on that suffering by turning our head from death, and claiming that living is always better than dying, and making sure our grandmas are pacemakered and IV’ed and feeding-tubed all the way to the bitter end. It is such an odd choice, such an unfortunate taboo. We have no problem sparing our pets from unnecessary suffering, but our grandparents and parents? Them, we want to drink the dregs.

The sad irony is that death seems most like an enemy when we’re fleeing it. Turn to face it and it becomes, if not a friend, at least a worthy counselor. As Emanuel wrote in his Atlantic piece, consciously confronting death “removes the fuzziness of trying to live as long as possible. Its specificity forces us to think about the end of our lives and engage with the deepest existential questions and ponder what we want to leave our children and grandchildren, our community, our fellow Americans, the world.”

Michel de Montaigne’s famous essay “To Philosophize is to Learn How to Die” should be required reading for everyone who will at some point die. Not because it’s morbid; not because it’s anti-life; not because it encourages readers to crave death. But because it is exactly the opposite—because it is realistic, and life-affirming, and encourages readers to step beyond their hard-wired fears and into a life worth living. “A man who has learned to die has unlearned how to be a slave,” he writes. “Knowing how to die gives us freedom from subjection and constraint.”

That is the freedom Maynard has embraced. She is a brave woman—not because she is “committing suicide,” but because she is refusing to commit an even greater sin: the sin of living by default, and letting life just do with her what it will. Yes, life has value. But so does a roaring heart.

View full post on Death with Dignity National Center

Death with Dignity: A daughter’s perspective after a prolonged, painful death

Amy Neese's father
Amy Neese’s father

Brittany Maynard’s story has prompted discussions about our model legislation, the Oregon Death with Dignity Act, throughout the US. Over the last week, we’ve heard from hundreds of people in support of Death with Dignity. The guest post below by Amy Neese is republished with permission. The article originally appeared on Amy’s blog, Life, Laughter and a Double Espresso.

My thoughts are with a woman I’ve never met. 29-year-old Brittany Maynard lives with her husband in Portland, Oregon. She’s beautiful, with shoulder-length brown hair and light eyes. She adores her family, loves to travel and Nov. 1, Brittany will die.

Brittany has an incurable, aggressive form of brain cancer. After two unsuccessful surgeries, Brittany’s only treatment option is full brain radiation. However, the side effects from the treatment could destroy her quality of life for the little time she has left. She could die in hospice, but run the risk of developing morphine-resistant pain. While the cancer eats away at her brain, she could experience personality changes and a loss of verbal, cognitive and motor skills.

Instead of radiation, Brittany made a decision. She packed up her life in California and moved to Oregon—one of only 5 states where Death with Dignity is allowed, an end-of-life option for mentally competent, terminally ill patients with six months or less to live. In the event the dying process becomes unbearable, this act allows patients to self-ingest doctor prescribed medication that will end their life.

I read Brittany’s story on Facebook last night, and was overwhelmed by the number of those commenting on her story. Some supported her; many criticized her citing Biblical reasons. As a Christian believer, I understand her critics. However, from someone who has walked the same path as Brittany is headed, I understand her decision.

I lost my father two weeks ago. He was only 61. Like Brittany, my dad suffered from a cancer that required brain radiation. He took the chance with treatment, then we watched as everyone of Brittany’s fears materialized in my father. The radiation ultimately caused brain necrosis; the necrosis slowly but effectively ate his brain one section at a time. Although the treatment bought him more time, my father lost his quality of life. For four years, he was in chronic pain, constant angst.

My family and I were forced to helplessly watch the slow, brutal process of losing him a piece at a time. We sat beside him through numerous painful surgeries and recoveries. We stood by him as his ability to perform simple life tasks began to fail—drive a car, hold a fork, move his feet. We watched as he lost ability to comprehend and process information. We cried when he lost ability to communicate and recognize things familiar. We held his hand as he agonized from morphine-resistant pain, and fought back tears when he told us he was ready to go. In the end, we sat beside him in hospice, waiting, praying for God to bring him peace. The process was torture on my sweet daddy; the experience was heartbreaking for us.

Nov. 1, two days after her husband’s birthday, Brittany plans to ingest the pills that will end her life. She plans to be in her own bed, surrounded by family and listening to her favorite music. She will still have her mind. She will still have her dignity. She will not be in physical pain. She will have spent her final days traveling to her favorite places with those she loves.

I can’t say which way to exit this world is best; I can’t say if that final act will have any bearing on the eternal soul. I can only wonder, if given the chance again, would my dad have chosen a different path?

View full post on Death with Dignity National Center

Brittany Maynard’s Decision to Die with Dignity

Brittany Maynard with her Great Dane, Charlie. Photo by Dan Diaz
Brittany Maynard with her Great Dane, Charlie. Photo by Dan Diaz

Brittany Maynard and her husband were trying for a family when the news came. After suffering from crippling headaches for months, she learned she had brain cancer in January, 2014. Hardly a year after getting married and 29 years old—her whole life ahead of her—her life was turned upside down in a moment.

Shortly after the diagnosis, she underwent procedures to stop the growth of the tumor, but in April, the news took a turn for the worse. Not only had the tumor come back, but it was growing faster than ever. She was given a prognosis of six months or fewer to live.

After extensive research and talking with her family, Brittany came to the difficult conclusion: debilitating treatments wouldn’t save her life and she wanted to enjoy the time she had left with her loved ones. In her own words in an interview with CNN, “I considered passing away in hospice care at my San Francisco Bay-area home. But even with palliative medication, I could develop potentially morphine-resistant pain and suffer personality changes and verbal, cognitive and motor loss of virtually any kind.”

She wanted more control over her final days. She and her family decided to move and establish residency in Oregon so she would have the options allowed under Oregon’s Death with Dignity Act. In the same interview on CNN, she described the peace of mind she has now she’s completed the request process for the prescribed medication:

Now that I’ve had the prescription filled and it’s in my possession, I have experienced a tremendous sense of relief. And if I decide to change my mind about taking the medication, I will not take it. Having this choice at the end of my life has become incredibly important. It has given me a sense of peace during a tumultuous time that otherwise would be dominated by fear, uncertainty and pain.

Brittany’s vision for her final days are echoed by people who contact the National Center every day from every corner of the country. Sadly, policy reform around end-of-life options won’t come soon enough to help the vast majority of people who call and email us. As heartbreaking as these conversations are, they make me even more passionate about this cause. No question, all people should have the right to control their own fate when facing death.

This will be a long journey; our opponents are well funded and scare people with fictional fears which haven’t born fruit in the many years Death with Dignity has been in effect. Encouragingly, attitudes around Death with Dignity are changing as more people learn the facts about these laws. As our board member George Eighmey said in an interview with Yahoo News:

The more educated people become, the less fear they have about it and the less stigma it carries. No one is pressured into using this law; in fact, very few people do. What’s important is that the choice is available to anyone who qualifies.

Momentum is building throughout the US for more states to embrace Death with Dignity policy reform and this momentum is accelerating at a faster rate than ever. I’m honored to work for the organization which is setting the tone and tenor for the national Death with Dignity movement, and with your help and support we’ll continue to be there every step of the way.

View full post on Death with Dignity National Center

Goodbye to Jumpy: Lessons for the Health System

Hamster care of cdrussorusso on flicker
Hamster care of cdrussorusso on flicker

This article by Janice Lynch Schuster was originally published on American Society on Aging’s Aging Today, and is republished with permission by the author. Janice will guest host our #DWDchat this Thursday to chat with our Twitter community about the topics in this article more in-depth. All are welcome; please join in the conversation! The chat will start at 4:00pmPT/7:00pmET and will last for one hour.

Janice Lynch Schuster is the co-author of Handbook for Mortals: Guidance for People Facing Serious Illness (New York: Oxford University Press, 2011). She is a senior writer for the Altarum Institute in Washington, D.C.

For 15 years, I have made a living writing about death and dying, and about aging and caregiving. My experience stems from having cared for my grandmother in the early 1990s, and I was motivated by my outrage at discovering a healthcare system that was anything but caring. These days, my nightstand is laden with books bearing titles such as The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies, Never Say Die: The Myth and Marketing of the New Old Age, A Bittersweet Season: Caring for our Aging Parents—and Ourselves, and Twelve Breaths a Minute: End of Life Essays. Each is a good read, and each, in its own way, prepared me for the recent death of Jumpy, my 9-year-old son’s dwarf hamster.

These days, I write about caregiving and care transitions. I was intrigued by the situation we faced with Jumpy’s demise and struck by how well our veterinarian managed a situation physicians routinely back away from.

Jumpy’s Diagnosis and Treatment Plan

In the early days of what would prove to be, in hamster years, a long illness, Jumpy just didn’t look right: his ears were swollen and he scratched incessantly. Diagnosing either a parasitic infection or an allergic reaction, our vet treated Jumpy with the full arsenal of veterinary weapons: an antiparasite medication, along with antibiotics and painkillers.

For two weeks, twice a day, one of us held the hamster while the other administered minuscule doses of what we hoped would relieve and cure him. Jumpy seemed to improve, although we failed to comply with a recommended follow-up appointment. I was on vacation, and my husband was busy. When we went back a couple weeks late, Jumpy had regressed and we were back to square one. More treatment followed, but Jumpy did not improve. His ears swelled, his belly was distended and he spent most of the day huddled in his hamster castle. His treadmill never moved.

I took him back to the vet, who explained our options. We could continue to treat Jumpy, every other week for the rest of his life, to the tune of some $200 per visit. Or we could end treatments—and Jumpy—with an overdose of some drug. It was left to me to decide.

The irony of my situation was not lost on me. I have spent years writing about how families contend with decisions just like this: Insert a feeding tube or not, try a ventilator or let nature take its course. In the hypothetical world of writing, the answers always seemed plausible and I seemed confident. In the real-world situation in which I found myself—with a sobbing 9-year-old boy and a quaking hamster of indeterminate age—it was less straightforward. Eventually, we agreed that it was time to end Jumpy’s suffering, that he would be cremated and that we would acknowledge and celebrate the happiness he had brought to my son.

Facing the End

It was so hard. I know, you’re thinking, “We’re talking about a hamster, for God’s sake!” And yet it was a living, breathing creature, one with whom my son had bonded and enjoyed good times. I can still picture Jumpy in the pilot’s seat of a G.I. JOE helicopter, and flash to an image from the movie of Beverly Cleary’s The Mouse and the Motorcycle. He was a rodent, pure and simple, and his problems paled in comparison to the rest of the world.

But in those problems lie kernels of understanding about the difficulty of end-of-life work. It was hard, painfully so, to tell my son that we could do no more for Jumpy. It was wrenching to witness him saying good-bye to his beloved pet. My son’s cries echoed through the vet’s office. The vet stood close to my son and told him how sorry he was for his loss, and how he hoped that he understood we were doing the best and right thing. How seldom we encounter that kind of compassion—that willingness to stand by us—in the healthcare system, yet how essential it is.

I would like to write a thank-you letter to the vet, acknowledging him for the compassion and human touch he showed to my little boy, who had just confronted the first of what is ultimately a lifetime of loss. Isn’t that the heart of what we can offer one another—a consoling and knowledgeable presence, someone to say how sorry they are, an affirmation that we are doing what is right and that parting is painful? I hope someone is there for my boy when he has to see me through, and I hope we all have a care system that has learned how to care.

View full post on Death with Dignity National Center

A Lesson from Joan

Joan and Melissa Rivers
Joan and Melissa Rivers

Joan Rivers—love her or hate her—was a larger than life personality. She bucked the notion that women can’t be funny and paved the way for many other female comedians to step into the limelight. Tina Fey, a comedy superstar in her own right, reflected on Rivers’ influence recently in an interview during the Toronto Film Festival, “Whether that was her intention or not she definitely opened doors for other women in comedy.”

Rivers saw no topic as taboo, and contrary to many Americans, she spoke quite openly about death, dying, and what she wanted for her funeral as she did in this recording:

When I die (and yes, Melissa, that day will come; and yes, Melissa, everything’s in your name), I want my funeral to be a huge showbiz affair with lights, cameras, and action…I want Craft services, I want paparazzi and I want publicists making a scene! I want it to be Hollywood all the way. Don’t give me some Rabbi mumbling on; I want Meryl Streep crying, in five different accents. I want to look gorgeous, better dead than I do alive. I want to be buried in a Valentino gown and I want Harry Winston to make me a toe tag. And I want a wind machine so strong that even in the casket, my hair will be blowing more than Beyonce’s on stage.

But perhaps the most touching video I’ve seen is of Ms. Rivers’ heart-to-heart conversation about her own death with her daughter (watch the video below). It’s a video which was filmed for Joan Knows Best when she was prepping for a surgery in 2011. The clipboard in her hands likely had her medical forms and advance directive on it. She started the conversation off with a very typical phrase, “If anything happens,” and then launched right into what she hoped for her survivors. She expressed things that people often don’t unless they’ve realized they’re dying in the near term.

I’m personally not a fan of reality TV, but the moment she and her daughter shared on camera in a frank discussion about death is one many people could benefit from watching. It’s hard to talk about one’s own death and your hopes for people who live longer than you. It’s difficult to figure out how to even start these conversations.

We could all take a lesson from the irrepressible Joan Rivers. Start off with a humorous anecdote about what you want for your funeral even if it’s over the top. Blurt out a segue about dying. Whatever you do, get these conversations rolling!

To live how you want up until your death, you need to make sure those around you know your values, your fears, and what is and isn’t acceptable to your way of life. And, not least of all, document your wishes in a printed advance directive or an online universal directive. You know best what you want for your end-of-life care and how you hope people will celebrate your life after you’ve died. Don’t waste a minute more; tell those around you. After all, you won’t live forever.

View full post on Death with Dignity National Center

National Center Board Member to Present at Biennial Right to Die Conference

George Eighmey
George Eighmey

People the world over desire to control their own end-of-life care. While the Death with Dignity National Center’s focus is on supporting and promoting US Death with Dignity laws, there are groups across the globe who work toward developing similar laws in their countries. Many of these groups, like us, are members of the World Federation of Right to Die Societies.

Since 1976, Federation members have come together every other year to discuss the global right to die movement. This year’s conference—kicking off September 17th—will be the first one in the US since the Boston gathering in 2000. Chicago will host this year, and Death with Dignity National Center board member George Eighmey will be among the featured speakers at the conference.

George will present on our work to pass the third US Death with Dignity law in the state of Vermont. Vermont’s law was the first law of its kind on the East Coast, and the first passed through the legislative process. This historic achievement came to fruition after over 10 years of dedicated work by us and the local grassroots group, Patient Choices Vermont.

A major shift in the state came when dedicated supporter Peter Shumlin assumed the governorship in 2011. His outspoken support for Death with Dignity on the campaign trail in 2010 bolstered support throughout the state, and encouraged his colleagues in both legislative chambers to be more vocal in their own support.

In the lead up to his re-election in 2012, Governor Shumlin took the unprecedented step of making the legislation part of his campaign platform. Shortly after his re-election, he told reporters signing the Death with Dignity bill was one of four social issues he saw as a priority during his second term.

No doubt about it, Governor Shumlin’s leadership in supporting the legislation moved the foundation we built with our partners over the years to the final step of codifying Death with Dignity in the state’s statute last year. If you’re attending the conference, don’t miss George’s presentation on Vermont’s new law, how it came to be, and its impact on the movement throughout the US.

View full post on Death with Dignity National Center

National Center Ice Bucket Challenge

Last week, our executive director Peg Sandeen reflected on a social media phenomenon to raise money for ALS research: the Ice Bucket Challenge. Not long after the article was posted on our blog, Peg was challenged to get ice water dumped on her or make a donation to the ALS Association.

Ever the overachiever, Peg decided to do both and she upped the ante by challenging all of us here at the National Center to take part, pledging to donate for each staff member who participated. All of us played a role. Peg, Cindy, Don and I received the ice water. Pete, Shaun, and Roger dumped the water, and Jennifer shot the video. We filmed our challenge next to one of Portland’s iconic Animals in Pools water fountains. Check out the result:

As is the custom with the Ice Bucket Challenge, Peg challenged three steadfast Death with Dignity advocates. Nancy Niedzielski began her dedication to the Death with Dignity movement during the 2008 Washington campaign, and her efforts were featured in How to Die in Oregon. Scott Swenson served as the National Center’s executive director. Nora Miller, whose husband controlled the manner and timing of his death under Oregon’s Death with Dignity Act, never misses a chance to help others understand the peace of mind Death with Dignity laws give to people who are dying.

View full post on Death with Dignity National Center

ALS Ice Bucket Challenge

Portland Thorns players Alex Morgan and Allie Long taking the Ice Bucket Challenge
Portland Thorns players Alex Morgan & Allie Long via Instagram

Much controversy has swirled around the ALS Ice Bucket Challenge. Supporters and fans argue it is a social media craze engaging countless new donors and raising desperately-needed funds for an important cause. Critics argue the Challenge is a prime example of slacktivism, offering individuals the opportunity to believe they have done something to contribute to the solution of a serious social problem—without really doing anything.

A review for those of you who do not know what the ALS Ice Bucket Challenge is, using Facebook, individuals challenge three friends and colleagues to have a bucket of ice dumped over their head within the next 24 hours. In one version, the challenge is to make a $100 donation to an ALS-oriented charity or get doused by a bucket of water; in the other more common version, participants donate and douse while filming the ice bucket experience, posting the video to Facebook, and challenging others.

I have a hard time aligning myself with the critics, even though I have read much more of their material than I have from supporters. Some critics are pitting the response to ALS with another important social problem in our world—the availability of fresh, potable water in Africa, arguing against the wasting of buckets of water. Others posit there are more pressing issues in our world, like the police shooting and citizen rioting in Ferguson, MO, where individuals should be using social media, so the argument goes, to engage with that important situation. The arguments fall apart in narration, based on conflation of two separate issues, both deserving attention.

Notwithstanding the idea there are many compelling concerns and problems needing attention throughout the world, The ALS Association is reporting the Ice Bucket Challenge has raised more than $41.8M in less than a month, engaging 739,000 new donors. In a story about the phenomenon in the New York Times, a spokeswoman labeled the money from the Challenge “transformative.”

ALS, also known as Lou Gehrig’s Disease or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease causing increased muscle weakness and atrophy as the disease progresses. Eventually, those with ALS may lose all control over voluntary movement, but maintain nearly complete cognitive functioning. It is the second most common reason behind cancer for using the Death with Dignity Acts in both Oregon and Washington.

I have watched the Challenge with some interest, having a cousin who has been living with ALS since the late 1980s and knowing a significant number of individuals with ALS who have considered or used Death with Dignity to hasten death in light of a severely debilitating illness. Elements of self-aggrandizement, braggadocio, and ego aside, 3/4 of a million individuals have been engaged enough with the issue to make a donation. The phenomenon is real, not a fluke of social media, and important.

So, I challenge you to the ice bucket challenge. Let’s take this thing over $50M.

View full post on Death with Dignity National Center