Week 34/2015 in the Death with Dignity Movement

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Last week (August 17 to August 23, 2015) a group of California Assembly Members introduced a modified End of Life Option Act bill in their chamber of the state legislature, for an extraordinary legislative session on healthcare issues. The Death with Dignity bill is back in the California legislature, and if it passes in the special session, it may become law by year’s end.

California

Assembly Members Susan Talamantes Eggman, Mark Stone, and Luis Alejo co-sponsored and introduced a new bill, amended from SB 128 which the California Senate passed on June 4.

Elsewhere & Other Stories

Image by DaveBleasdale.

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California Legislators Reintroduce End of Life Option Act

On Tuesday, California Assembly Members Susan Talamantes Eggman, Mark Stone, and Luis Alejo introduced the California End of Life Option Act in their chamber of the state legislature. The bill is nearly identical to Senate Bill 128, sponsored by Senators Bill Monning and Lois Wolk and passed by the Senate on June 4, with amendments fine-tuning the process of obtaining medications.

The bill will head next week to a special Assembly Health Committee, established by Governor Jerry Brown for an extraordinary legislative session to consider pending healthcare issues. This means that AB 2X-15, the amended End of Life Option Act, will not have to go through three committees as it did in the Senate. Instead, the bill will only have to be heard in the one special committee and reviewed by a fiscal-impact committee.

Californians, now is the time to urge your Assembly Member to support this important Death with Dignity-style bill. Please send this letter urging them to move the bill forward.

You may have heard opponents of Death with Dignity in California rejoice when the Senators pulled the bill from Committee due to lack of support. The detractors claimed the bill was dead. In reality, the Senators went back to work on the bill and the revised version addresses the concerns of a few hesitant Assembly Members. The Assembly will have until September 11 to approve the bill.

In recent weeks, judges in San Diego and in San Francisco dismissed two separate lawsuits which challenged California’s assisted dying statute; both judges stated that the issue whether Californians have the right to use a Death with Dignity law should be decided by the California legislature. This is why it’s now even more important the bill moves forward in the Assembly.

If you are a Golden State resident, let your Assembly Member know that every Californian, if faced with a horrible death from a terminal illness, deserves to die peacefully at the time and place of their choosing. Send him or her this letter today.

With your help, we are confident the bill will pass. As always, we are grateful for your advocacy efforts.

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Week 33/2015 in the Death with Dignity Movement

Last week (August 10 to August 16, 2015) the New Mexico Court of Appeals on Tuesday overturned a lower court’s decision that had, in effect, made Death with Dignity legal in the state. And, on Friday, a San Francisco Superior Court judge upheld California’s physician-assisted dying ban, saying the matter should be left for the state legislature to decide.

New Mexico

California

Other Stories

…And a Few We Missed the Previous Week

Image by Elena.

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Dying the Way I Want: Death with Dignity in Maine

This is a guest post by our long-time supporter in Maine, Valerie Lovelace. Val is the executive director of It’s My Death, which she founded to honor a promise to her sister Dee, dying of cancer, “to teach others how to be with dying, how to speak and listen to one another the way we had learned to speak and listen, and how to go on even when afraid.” She is an inter-faith minister, ordained by calling, studying and practicing in the traditions of her elders and teachers, who are Native American, Christian, and Buddhist. She is a hospice volunteer, artist, and the parent of three adult children. She is also a homeopathic practitioner and a Reiki Master, retired from the U.S. Navy, and a trained EMT.

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Maine Should Have a Death with Dignity Law

Maine’s legislature recently failed to pass LD 1270, An Act Regarding Patient-Directed Care at the End-of-Life. The bill would have allowed a qualifying, terminally ill adult to ask for a prescription medication to take at a time of their choosing as their death becomes imminent. It had a very clear process and protected all who chose to participate while forcing none who are morally opposed.

LD 1270 should have passed. It was modeled on the same law Vermont passed in 2013. Vermont’s law has been working exactly as intended. At last count, eleven people have exercised use of an end-of-life prescription in that state.

Opposition to This Legislation Is Hogwash

California’s legislature stalled SB 128, a similar bill, due to fierce opposition from some organized religious and disability rights groups.

In Tennessee, where a bill was referred to summer study, former legislator, John Jay Hooker, now 84 and dying, has sued his state in an attempt to gain his own liberty in death, asking that he be granted the civil liberty to ask his doctor for a life-ending prescription to take at the end. His physician is willing to write the prescription if granted legal permission to do so. Like bills in Maine, California, and elsewhere, Tennessee’s Death with Dignity bill is meeting the same resistance from the same groups spouting the same tired rhetoric.

Oregon’s Death with Dignity law has been in effect since 1997. Despite the fact that seventeen years of data and nine independent research studies prove the laws are working as intended, activist groups still feel they should prevent any movement at all in the discussion around civil liberty and dying. It’s hogwash.

In Oregon, Washington, and Vermont the World Has Failed to End

Is the issue controversial? Yes. Does an end-of-life prescription law demand careful, thoughtful legislation? Absolutely.

Dying wishes are very private. There are physicians, nurses, palliative care specialists, hospice folks, clergy, legislators, disabled people, family members, patients, pharmacists, and so forth, who fully understand the issues and concerns, and help to draft sound legislation and policies for implementation.

The fact that organized religious and disability groups, neither of which, by the way, speak for everyone who is disabled or religious, are involved in a crusade to squash each attempt at legislation is not an indication that the legislation is bad or that the issue is wrong. It’s an indication that people aren’t willing to read the bills, learn about the issues, or recognize that what a person needs while dying is a private and some could argue sacred matter.

But it should be sacred to the needs of the individual and their circumstances, not sacred to the ideas of others who wish to assert their beliefs over those who believe differently. Those who skew the truth suggest over and over that even a good law will result in total disaster and the end of the world as we know it.

The same was said for abolition, women’s voting rights, desegregation, freedom in marriage, and is argued for every other issue involving social change and civil liberty. It’s a good cue: If opposition is out making noise about how all of society as we know it will collapse if we allow such a thing to happen, then it must be about social change and civil liberty.

I Want Liberty

A very small number of people need this legislation. Less than one half of one percent of all deaths in Oregon occurred through the state’s Death with Dignity law. That number means this year there are around 30 to 35 people in Maine who will die without the civil liberty they need. Their doctors, even if willing, cannot legally help them. I know at least two of them. And it isn’t right. It isn’t right that special interest groups with their own agendas dictate for the rest of us how our dying ought to go.

I want social change. I want liberty. I don’t want to die the way someone else thinks I should.

Image by Ken Rowland.

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Week 32/2015 in the Death with Dignity Movement

Last week (August 3 to August 9, 2015) the Washington State Health Department released the 2014 annual report on the implementation of the Death with Dignity law. Read the full report, our highlights, or a write-up in Seattle Weekly.

In the run-up to the release of the report, the Vashon-Maury Island Beachcomber newspaper, a hyperlocal publication on a Puget Sound island southwest of Seattle, ran two stories related to the state’s Death with Dignity law.

Image by Howard Ignatius.

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Washington State Releases 2014 Death with Dignity Report

The Washington State Department of Health yesterday released the 2014 annual report on the implementation of the Washington Death with Dignity Act. The figures underscore not only that only a small number of people use the law, but also that the Washington Death with Dignity Act continues to work flawlessly and provides ease of mind and relief to Washingtonians facing the end of life.

In 2014, 176 terminally ill Washington residents received a prescription under the Act to help hasten their death. This is a 2% increase over the previous year. Of patients with the prescription, 170 are known to have died: 126 after ingesting the medication and the rest either let the disease take its course or their status is unknown. Since 2008, when the Act went into effect, “725 adults with terminal illness have chosen to end their lives with a physician-prescribed lethal dose of medication,” according to the report.

Fifty-seven percent of participants in the Washington Death with Dignity Act were women. Ages ranged from 21 to 101 years. A vast majority, 92 percent, were Caucasian, and 75 percent had at least some post-secondary education.

Cancer was the underlying illness for 3 out of 4 participants, ALS contributed with 13 percent. Ninety-three percent of patients had some form of insurance.

The three chief end-of-life concerns for the Death with Dignity Act participants who have died were losing the ability to engage in activities that make life enjoyable, losing autonomy, and losing dignity. Ninety-two percent of patients died at home, five in a long-term care facility. Ninety-six percent of patients experienced no complications after ingesting the medication.

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Week 31/2015 in the Death with Dignity Movement

Last week (July 27 to August 2, 2015) was a very quiet one in the Death with Dignity movement, as the middle of the summer tends to be…

Image by Elena.

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The Gifts Dying Can Give

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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