The Gifts Dying Can Give

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Sunset

This guest post is from Barbara Karnes. Read our open call for guest posts →

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Barbara Karnes is award-winning end-of-life educator and nurse who has been instrumental in creating the patient/family educational booklet for hospice. A former hospice nurse, director, and consultant, Barbara is the author of the booklets A Time to Live: Living with a Life Threatening Illness; Gone From My Sight: The Dying Experience; The Eleventh Hour: A Caring Guideline for the Hours to Minutes before Death; My Friend I Care: The Grief Experience; the book The Final Act of Living: Reflections of a Long Time Hospice Nurse and a family-oriented DVD/booklet kit New Rules For End of Life Care. She blogs at Something to Think About where a version of this post originally appeared.

What beauty, strength, or gifts can death bring?

Beauty is in the eyes of the beholder and in our society today death is often not seen as beautiful or as a peaceful exit from a life well lived. We have medicalized death, demonized it and made it something to be feared. What we expect is what we will perceive so we see through the eyes of our fear.

Knowing the normal, natural progression the body takes to leave helps neutralize that fear. Once that fear is eased we can see and experience with a different view or perspective.

What will be seen beyond our fear is the body naturally letting go. Slowly, breathing changes, getting slower. The mind is withdrawn inward so there is very little response to voices or what is happening around and about them. Sometimes there may be agitation, a restlessness. There can be congestion in the back of the throat and upper lungs. If a catheter is not inserted there will be peeing and stooling the bed. All of this is normal, nothing bad is happening.

What are the gifts? For the patient the gift is not being hooked up to machines that are trying to prevent the inevitable. The gift is having those they care about close to them. If they are at home then the comfort of their own surroundings. Mostly because the person is so withdrawn and inward, the gift is the comfort a loving environment can give.

My mother lived with me the last five months of her life. Our relationship, as any relationship, had its ups and downs. During those last five months we became closer than we ever had been. It was an opportunity to be present with each other in a different way. It was a gift where love bloomed after it had faded.

I’m not saying caring for someone in the time before their death is easy. It is not. It is a lot of work. Physically, it is time intensive. Emotionally, it is draining and heart-wrenching.

What are the gifts for us, the watchers? The opportunity to say our final goodbye, to say what is in our heart and mind one last time, to touch into the grace of the experience.

If our fears have been neutralized and conquered when death has come and we supported and loved our person on their final journey, we can realize the gift we have been given.

Image by Where Is Your Toothbrush?

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Week 29/2015 in the Death with Dignity Movement

Newspaper Stack

Last week (July 13 to July 19, 2015), as legislatures went into summer recesses the Death with Dignity movement entered a “slow news day” period.

Image by [BarZaN] Qtr.

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At Death’s Door

Karen Kaplan headshot

This guest post by Karen Kaplan originally appeared in Expired and Inspired, the blog of Kavod v’Nichum. Read our open call for guest posts →

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Karen Kaplan in 1992 became one of the the first 200 female rabbis in the world. In 2007 she became a board-certified chaplain and served in hospices on the East Coast for 7 years. She is the author of the book Encountering The Edge: What People Told Me Before They Died. Free of religious agendas, the book consists of true stories about her hospice patients and what they most cared about and believed in (the book is available on Amazon and wherever books are sold, as a softcover, ebook and starting in July 2015, as an audiobook; excerpts and reviews are available at publisher’s site). Just days before this guest post came to press, Karen was pleased to announce the release of her audiobook version of Encountering the Edge. Karen also blogs at Offbeat Compassion.

For me, what’s on tap after death is unknowable. Not only that, what will happen right before is just about equally mysterious. How can we predict the way each of us is actually going to feel when the time comes? When we are children, we cannot understand what it is like to be a teenager, and teenagers have little conception of what it will be like to be middle-aged. Here I sit, middle-aged, wondering when I am old, whether I will still feel fulfilled by my accomplishments or instead become embittered about mounting physical and cognitive limitations. When I approach my own death, will I be calm, frightened, curious, indifferent, or even relieved? Will I experience each of these reactions in turn? I don’t think it is possible to predict how I will feel until I reach that point. I hardly even know how I will feel about things when I get up tomorrow.

Yet, you might be skeptical that I am so unsure, since I have witnessed so many people who have indeed gotten to that point. “Surely,” you might protest, “with your front row seat at death scenes, you must have a better idea than most how the majority of people face death and their fears of it. If you cannot tell us how to be less afraid, then no one can.” The unspoken part of that might be, “And by the way, I do not believe for sure in an afterlife. No canned religious answers, please.” Fear not. (For those who do, the very short answer in Judaism is that there is an afterlife for most people, but that it is not very precisely defined. The only ones who do not get the privilege are thoroughly evil. Their fate is to be blotted out of existence.)

It definitely is curious how many patients on hospice are not fearful about dying. Some tell me as their chaplain that they find comfort in the traditional idea of olam haba (“the world to come”). Others feel so run-down and so limited by their physical condition that, as one person put it, they were ready to “call it a night.” Then of course some patients are no longer self-aware enough to consider the issue, whether it is from dementia or from constantly being asleep or in a coma.

I often find that other family members are more afraid of death than the patients themselves are. A daughter might take me into another room well out of her mother’s earshot and nervously whisper, “Don’t tell Mom she is dying; she doesn’t know. We don’t wanna scare her.” And then, moments later as I am sitting quietly beside her mom, the patient will say, “I know very well what is happening to me. I know my life is almost over but I’m ready. It’s how my daughter will cope is what’s worrying me.”

The fact that those who are dying are less anxious about their demise than their children gives me hope about my own share of anxiety. Over and over I see patients focusing less and less on themselves, and more and more on those who will be left behind, particularly when young children are involved. I have found that when they are satisfied that the survivors will be okay, they become more at peace. So when I witness other patients paving the way for me with their own feelings of closure, I too feel more optimistic about a peaceful end. But then again, not everyone feels they are experiencing a happy ending.

Well, but what about the afterlife business? One of my fans has described me as an afterlife agnostic. Fair enough. In one chapter of my book, Encountering The Edge, I describe the beliefs that various patients expressed to me about the afterlife and compare their views with mine. To be honest, my own feelings towards death frequently vacillate between alarm and tranquility because of this agnosticism. But before you leave dispirited, let me reflect with you (and with myself) a bit about this ambivalence.

As I’ve been saying, it is hard to put yourself in another’s shoes in the future, even when they are your own. But what I can do is tie a context to the times I have felt afraid, compared with times when I have faced my mortality with more equanimity. I think I feel most afraid when I am full of energy, safe, and in excellent health. Death would be the inconceivable opposite; the idea of not existing is what frightens me the most. But when I have had the flu or other temporary conditions, I have felt more indifferent and less concerned. Also, I have seen a considerable number of people become indifferent at the very end. Although this may not seem like an uplifting way to go, it is preferable to terror.

Perhaps you feel that what I have said is anticlimactic. Perhaps you had hoped that I would hint at a spiritually transformative dying experience filled with a soft beckoning light. I certainly do not mean to rule this out, and apparently this has happened to some people. I do hope it will happen to you and to me. But like all else we experience since birth, the time before our death is another slice of life, with all its unpredictability and messiness intertwined with specks of hope and transcendence.

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Why Religiously Unaffiliated Americans Support Death with Dignity

Sarah Levin headshot

This is a guest post by Sarah Levin (the subheadings are ours). Read our open call for guest posts →

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Sarah Levin is the Legislative Associate at the Secular Coalition for America, where she oversees the Secular Coalition’s state chapter program. She is passionate about the constitutional separation of church and state and grassroots organizing. Sarah graduated from American University cum laude with a Bachelor’s degree in International Studies. Follow the Secular Coalition for America @seculardotorg.

When Tom Manger stood up to testify in support of the End of Life Options Act in Sacramento, he spoke on behalf of all religiously unaffiliated Californians who share his belief in the right of “each individual to face their inevitable death on their own terms – without interference from others.”

“Without interference from others.”

It is unthinkable that the conditions of one’s death, one of the most deeply personal moments in one’s life and the lives of their families, might be influenced by the personal beliefs and ideologies of strangers. But this is the reality confronted by those tragically faced with terminal illnesses in all but five states.

Why do religiously unaffiliated Americans care about death with dignity? What motivated Tom to make a trip to the California state capitol just to testify in support of the End of Life Options Act?

With some issues, like climate change, the religiously unaffiliated rally behind the conviction that science and research should triumph over myths and misinformation. With other issues, like government endorsement of religion, our community unites to protect the constitutional separation of church and state for the benefit of all faiths and none. Death with dignity is a unique issue that speaks to both aspects of our core values, as opponents are both driven by faulty evidence and religious dogma. We strongly believe that laws and policies that impact all Americans must be religiously and dogmatically neutral, based upon science, evidence, and reason, not ideology.

Opposition Arguments Hold No Water

Some opponents of end of life choice claim that death with dignity laws leave vulnerable individuals open to abuses and coercion, and will lead mentally ill people to commit suicide. With the built-in protections of Oregon’s death with dignity law in place for more than 17 years without a single report of coercion, these claims simply don’t hold any water.

Other opponents to death with dignity cite the religious tenet of the sanctity of life. One’s preferences for the condition of his or her own death are based on deeply, sincerely held beliefs and values. These beliefs are just as valid and sincere as others’ religious beliefs and should be treated respectfully with equal standing before the law. It is wrong and unconstitutional to allow the religious beliefs of some to trump the personal, nonreligious beliefs of others.

Speaking to Humanist Values

The letter of the law is not the only reason why this issue touches the religiously unaffiliated community so deeply. The right to compassionate end of life options speaks to the humanist values of dignity, autonomy, and freedom of the individual. Editor in Chief of The Humanist magazine, Jennifer Bardi, eloquently wrote in her letter from the editor on December 22, 2014, “when suffering becomes unbearable and treatment to alleviate that suffering fails or doesn’t exist, it seems the humanist philosophy must support an individual’s right to choose to end his or her life.” The Council for Secular Humanism, a program of the Secular Coalition’s member organization, the Center for Inquiry, explicitly endorses the right to die with dignity in its Affirmation of Humanist Principles.

For many secular activists, this issue touches them personally. Janice Rael, Co-Chair of the Secular Coalition for New Jersey, experienced firsthand the suffering families endure when their loved ones go to desperate lengths to end their lives when there is no compassionate alternative. “My uncle shot himself rather than endure one more day with colon cancer…all because the law wouldn’t let his doctor prescribe him medication to choose a dignified death.” Her personal experience has motivated her to work tirelessly for the passage of the Aid in Dying for Terminally Ill Act in New Jersey.

Death with dignity evokes our desire to empower the individual to take control over their own life, free of the burden to prove one’s worth to a supernatural being in order to gain access to a better life after death. At the same time, with this freedom comes a great responsibility to our fellow human beings and to the world we inherited. The tragic stories of people who die a wretched death despite their wishes to die with dignity compel the religiously unaffiliated to act, both out of compassion for the dignity of others and our innate desire to defend individual freedom.

Religious Values vs. Suffering

For the religiously unaffiliated, it comes down to this: will the religious values and personal beliefs of some be imposed on all Americans? Will religiously-based arguments be permissible in a secular debate concerning compassionate options for people who are suffering?

Our answer is no. The Secular Coalition for America, our 17 member organizations, and the 23 percent of Americans who identify as religiously unaffiliated will stand firmly behind the death with dignity movement and support efforts throughout the country to bring end of life choice to all Americans. We will do so for the sake of individual dignity and to defend the constitutional separation of church and state.

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Week 28/2015 in the Death with Dignity Movement

Last week (July 6 to July 12, 2015) the hearing in the California State Assembly Committee on Health was postponed for a second time as the sponsors of SB 128, End of Life Option Act, determined the bill had insufficient votes to pass. Senators Wolk and Monning intend to bring the bill back next year, in the latter half of the 2015-2016 legislative session.

The D.C. Council’s Committee on Health and Human Services held a 10-hour hearing on Councilmember Mary Cheh’s Death with Dignity Act of 2015. The next steps will not be decided until after the Council’s summer recess.

California

The second postponement of the Assembly Committee on Health hearing on SB 128 generated a lot of news coverage.

District of Columbia

Tennessee

A court hears John Jay Hooker’s case, in which he argues for the state to provide him with the right to die.

Elsewhere & Other Stories

Image by Flood G.

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D.C. Council Holds First Hearing on Death with Dignity as New Poll Shows 67% Support in District

A poll released by Lake Research today shows 67 percent of District of Columbia residents (51 percent strongly) support the right of terminally ill adults with less than six months to live to legally obtain medication to end their lives. The findings were released as the District City Council’s Health and Human Services Committee met for the first time on the issue.

“The numbers come as no surprise,” said Peg Sandeen, Executive Director of Death with Dignity National Center, an advocacy organization. “National polls, too, show overwhelming—and growing—support for letting people make their own decisions about how to live their last days.”

Introduced in January 2015 by Councilmember Mary Cheh, D-Ward 3, and endorsed by The Washington Post last month, the Death with Dignity Act of 2015 would allow adult D.C. residents who have had two doctors confirm a terminal diagnosis to fill a prescription medication to end their lives in a peaceful and dignified manner at the time and place of their choosing.

A virtually identical law has been in place in Oregon since 1997. In 18 years, no significant problems have arisen, and it has been used relatively sparingly—only 1,327 times, with fully a third of those who successfully obtain a prescription opting not to use it.

“The Oregon law has been implemented carefully and worked exactly as intended for over 17 years,” Sandeen said. “The time is right for D.C. to adopt this law.”

At Councilmember Cheh’s request, the National Center helped draft, promote, and support the bill. “We’re pleased to see our decades of work continue in this historic Council hearing, as is happening in dozens of statehouses across the country. This is an important step toward providing District residents with the autonomy, freedom and peace of mind that has been a godsend in Oregon, Washington, and Vermont.”

Photo: DC Councilmember Cheh (left) with our Executive Director, Peg Sandeen, at the press conference before today’s hearing.

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Week 27/2015 in the Death with Dignity Movement

Last week (June 29 to July 5, 2015), California heated up in advance of tomorrow’s hearing on SB 128, End of Life Option Act at the Assembly Committee on Health. The Catholic Church stepped up the pressure on Catholic Committee members, several of whom are vaccilating on the issue (see our letter campaign).

The Statesman Journal ran another part in the series about the end-of-life journey of our organization’s friend and long-time Death with Dignity advocate, Dr. Peter Rasmussen, MD.

California

Pro and anti-Death with Dignity advocates stepped up campaigns in the run-up to the first Assembly hearing.

New York

Our friends at Death with Dignity Albany keep their streak of successes going.

Elsewhere and Other Stories

Image by Brittany Randolph.

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Sharing Death with Dignity Stories

We have long asked members of our community to tell us why they support Death with Dignity. The most common thread running through the responses is that people are in favor of Death with Dignity because of a heartbreaking personal experience. Over the past few months, as half of state legislatures considered Death with Dignity bills, we’ve received an unprecedented number of stories from people all around the country.

Today on this blog we begin a new series, underscoring, in our supporters’ words, the reasons for Death with Dignity to become a legal end-of-life option everywhere. We present the stories you’re about to read in raw form edited only for clarity and length. Because of next week’s hearing on SB 128 – California End of Life Option Act in the Assembly Committee on Health, we begin with stories from the Golden State, many of which express support for the pending legislation. And though none of the stories reference the upcoming Independence Day, the spirit that we associate with the holiday, of personal liberty, individual self-determination and decision-making, and freedom from outside interference, is palpable.

Why Californians Support Death with Dignity

My father, Mark Gonnella, passed away of colon cancer in California on March 10th, 2007, at the age of 51. I am still haunted by the extent to which he suffered in his final days. I remember my father telling me that he “didn’t want to die this way”; that he “didn’t want to suffer.” If my father had the option of aid in dying medication, he would have taken it. I spent the last week of my father’s life pressing the button of his timed morphine pump every 10 minutes, on the dot. He would still wake up screaming in pain. I wish I didn’t have to remember him that way. I wish he could have died on his own terms.
—Francesca G.


I was diagnosed with lung cancer in June 2014, and I had a lobectomy. I’m holding my breath at this time waiting on my cat scan. I don’t want to drown in my own fluids. Chemo was too strong for me, so much so that I once passed out on the way to the kitchen in the middle of the night. I would not end my life unless I felt the worst was starting. I don’t want to die, but I also don’t want a long excruciating death either. Why should I live in pain?
—Connie C.


My father passed away 5 weeks ago today with terminal cancer. He was 91 and had been healthy most of his life. He went to the gym 6 days a week and church every Sunday. We had hospice at home to help but it was a painful and horrible death. My dad never wanted to die like that. When my dad asked his long time doctor to please help him, “give me a pill,” the doctor leaned forward and said, “I wish I could, Calvin, but the only way for you to speed up the process, is to quit eating and drinking.” From that day forward my dad only drank enough water to get his pain pills down. It took thirteen days for him to pass away. I don’t understand how anyone who has watched someone they love die like that would not support a death with dignity law. Why do we allow someone else’s belief dictate our right to choose how we pass on? Thank you for supporting the SB-128 bill.
—David S.


I support Death with Dignity after watching my 83 year old mother-in-law suffer for 5 weeks (so far) as she dies a humiliating third world death of starvation and dehydration. Upon being diagnosed a year ago with terminal cancer, she lived her life to the fullest. She told her doctor and family her wishes to end her life when the time came. But when we engaged hospice we were informed that if we left the medications she wanted within her reach, we would be accused of criminal neglect. Please give our elderly the option, should they choose it, to end their lives on their own terms. They don’t deserve the pain and suffering.
—Lisa T.


My brother was diagnosed with ALS 7 months ago. We have no family history of the disease- I’m hoping I don’t get it He is detiorating SO FAST it is Painful to watch. He has not talked about suicide but he is kind of depressed. I think he should have the right to choose that option if he wants.
—Margo D.


I have seen too many people suffering needlessly and it’s not going to happen to me. I have emphysema, drugs aren’t helping. I will not get to the point where I’m gasping for air with no relief nor will I be a burden on my husband not only physically but financially. Instead of committing suicide, which may fail, I want the option of assisted death, ending the pain. Many physicians want to see Death with Dignity enacted, but as it stands now their hands are tied.
—Karen S.


I have cared for three of my closest family members that have gone home before me with terminal cancer dying the slow painful ending: my husband at only the age of 59, father, and years later mother who passed in hospice, finding no peace. I do not want my end to be the same story. My husband would have very much been for this bill to pass. Mother would say daily, “I want to die, let me go…” She was 92 and should have had the choice to leave with dignity. No one knows the pain they feel or the pain of the caregivers who stay behind to live with those memories. I do not want to leave that kind of memories for my children and grandchildren.
—Saundre L.C.


I’m just getting diagnosed with lung cancer on July 10th. My doctor has already told me about it and what to expect. I don’t want to die curled up in a fetal position totally knocked out and others having to care for my basic private needs. Please pass this bill so we can die while we still have our dignity.
—Connie K.


Had death with dignity been available in CA, it would have saved my 97 year old mother from her last two years of pain and misery!
—Frank K.


Both of my parents died horrific deaths, Dad nine years ago and Mom eight months ago.

My Dad was a brilliant architect before he had a stroke. One afternoon, we were trying to get him to the bathroom. He collapsed on top of me on the floor and I held him in my lap while Mom called 911. Dad wasn’t breathing and had no pulse. He died in my arms. EMT’s confirmed he was gone, then asked, “Do you have a DNR?” Mom and Dad hadn’t finalized their medical directives so EMTs started resuscitation and revived his heart. Dad never would have wanted to be resuscitated only to suffer. Death with Dignity would have been an enormous gift to him and to our family.

My Mom lived eight years after Dad died and lived in our home the last three years. During these years she had serious health problems. Her doctor gave her a choice: come to the hospital and he’d arrange surgery, or do nothing and die. He told her there was an 60% chance she wouldn’t survive the surgery. Mom made the choice to stay home and die. She said she wished she could just take a pill and end it. All I could do was comfort her, watch her suffer and wait for death.

I became an advocate for Death with Dignity after experiencing my parents’ deaths. Both of them were conscientious people yet our laws denied them the right to make decisions about their own deaths. It’s difficult to help a parent die. In our culture, no one teaches us how to face death. It’s time our laws supported end of life preparation through Death with Dignity.
—Joy C.

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Week 26/2015 in the Death with Dignity Movement

Last week (June 22 to June 28, 2015), the California Assembly Health Committee hearing on Senate Bill 128 – End of Life Option Act was rescheduled to July 7 while the bill’s sponsors seek to round up the votes.

The Economist magazine featured a themed issue, “The right to die,” with a number of articles:

California

The postponement of the Assembly Health Committee hearing on SB 128 generated a flurry of editorials urging the Assemblymembers to pass the bill.

New Hampshire

After Governor Hasson vetoed a bill that would establish a task force exploring end-of-life options in the state, calls re-emerged calling for Death with Dignity to be legalized.

Elsewhere and Other Stories

Image by jun.skywalker.

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Week 25/2015 in the Death with Dignity Movement

Last week (June 15 to June 21, 2015), following our presentation to the editorial board, The Washington Post endorsed Death with Dignity nationwide, including the bill currently pending in the DC Council.

California

A breather here between the historic Senate vote and the upcoming Assembly Health Committee hearing (now rescheduled to July 7).

Maine

The Maine Death with Dignity bill, LD 1270, fell short of passage by a single vote in the Senate.

Elsewhere & Other Stories

Image by Alex.

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