Demystifying Death: A Life Moment

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Photo by Alex Dodd
Photo by Alex Dodd

Stacey Tinianov is a caffeine-powered working mama and shiny object follower, runner, suburban environmentalist, cyclist, breast cancer ass-kicker, and empowered patient advocate. Follow her on Twitter, @CoffeeMommy.

Several weeks ago, my almost 13-year old daughter sat in the backseat as I drove her to a sports activity. Frequently, as she nears her teen years, this drive time is spent in silent meditation (aka: ignoring Mom’s questions about the day) but occasionally, we sing along together to the radio.

Without exception, my favorite days are the days she peppers me with questions that instigate an open dialogue.

“What do you think happens when you die?” she asked as if she were asking what we were having for dinner.

“What do you think happens?” I asked back immediately. The verbal sidestep is a typical mom move designed to create the opportunity to hear her untainted view as well as give myself time to think about my own answer.

She was patently unmoved by my attempt to deflect.

“I asked you your opinion,” she deadpanned and we locked eyes in the rearview mirror.

“Well,” I stammered thoughtfully, “I don’t exactly know.”

It wasn’t as if I hadn’t given a great deal of thought about the process of dying and what comes after death. We have said goodbye to several close friends and family members recently and the topic has been at the top of my mind.

“Some people believe in an afterlife, some people believe in reincarnation, some people believe that dead is dead and life is simply over,” I paused. “I suppose that since energy can neither be created nor destroyed, I believe our spirits live on in some way shape and form. Maybe as energy in a star.”

I anticipated a flurry of questions related to the loved ones who have died in the past six months but none came. Instead, my daughter regaled me with her opinions on death and dying. She was intent on explaining her fear of death is not exactly a fear of death and what comes or doesn’t come next, but a fear of missing out. Fear of not being ready to be finished with life.

“I mean I cannot imagine just not being here. I just have so much to do,” she clarified.

I smiled hearing my daughter discuss death with profound honesty and without a trace of sadness. I smiled not simply because we were having an open conversation about a topic long swept under the rug but because in the context of demystifying death, my daughter and I were sharing a life moment.

This week, I’ll lead the #DWDchat discussion on Twitter to discuss our thoughts and fears about death, how they may have changed over time, and how we bring these up with loved ones. Please join us on Thursday at 7:00pm EDT to share your thoughts.

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A Social Worker’s Role at End of Life

Kevin Kozin, MTS, LICSW, is a clinical social worker and therapist and formerly worked as a hospice social worker. He’s currently a board member of the National Association of Social Workers in Massachusetts and serves as the Chair of the Mental Health and Substance Abuse Committee. He works with adolescents, adults, couples, and families through psychotherapy and grief counseling, which lead to healing results.

The New England Journal of Medicine published an article this April titled, “Implementing a Death with Dignity Program at a Comprehensive Cancer Center”. This well-written article takes a candid look at the demographics and experience of a particular cancer center in Washington state, where the Death with Dignity Act has been in effect since March, 2009. Death with Dignity refers to the Washington and Oregon statutes which allow individuals who have six months or fewer to live (as determined by two physicians) and have the capacity to make medical decisions the option to request prescribed medication which allows for a peaceful and painless death.

The article’s conclusion states, “Overall, our Death with Dignity program has been well accepted by patients and clinicians.” As a practicing clinical social worker and former hospice social worker, this comes as no surprise to me. The National Association of Social Workers in Washington continues to be a strong proponent of the Death with Dignity law Washington passed in 2008. As a board member and Chair of the Mental Health and Substance Abuse Committee of the National Association of Social Workers in Massachusetts, I know our chapter also worked in support of legislation through a ballot initiative here and the initiative lost by less than 1%. The ballot measure was modeled on the assisted dying laws in place in Oregon and Washington. Why would our organization of social workers support this legislation so enthusiastically? Because social workers stand for giving people—especially the dis-empowered—as much self-determination as possible.

Perhaps one element of this New England Journal of Medicine article which was highly edifying to me is the role of the social workers at the Seattle Cancer Care Alliance. In practice, a social worker is assigned to each individual who’s considering requesting the medication allowed under the Death with Dignity Act. The social workers’ role, as advocate, is to assist the individuals in understanding their options as well as providing a safeguard to ensure decisional capacity, screening out clinical depression and anxiety, and coordinating across multiple disciplines. The social workers coordinate with family, friends, pharmacists, physicians, care staff, attorneys, insurance companies, and anyone involved in the process to help the individual make a clear and thoughtful decision. The role of a hospice social worker in Massachusetts is very similar in that we’re constantly looking to empower those who are dying with whatever resources are available to them and enable them to make their own decisions, when possible. Hospice social workers are experts in care coordination and hearing all of the various stakeholders in the care of the dying individual, making sure all voices are heard, and ensuring the dying individual’s choices are respected.

In reading “Implementing a Death with Dignity Program at a Comprehensive Cancer Center” in the New England Journal of Medicine, I’m once again reassured the small percentage of dying individuals in Washington who qualify for assisted death are getting excellent care, and social workers are playing a strong role in ensuring these individuals’ choices are respected. I look forward to a greater understanding of Death with Dignity throughout the United States—one which isn’t based on fear but on compassion—and allows for more options and self-determination for those at the end of their lives.

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A Matter of Life and Death: What Are The Choices?

California Assembly chamber, photo by LWY on flickr
California Assembly chamber, photo by LWY on flickr

Yesterday, Mike White, former board member of the Death with Dignity National Center, spoke before the California Assembly Committee on Aging and Long-Term Care about Death with Dignity laws. Below is the transcript of his testimony.

There is tension between the beliefs that end of life choices should be founded mainly on respect for the sanctity of life or on compassion for those who are suffering: sanctity based on religious and moral principles or compassion based on respect for personal autonomy. I resolve the matter for myself by focusing on the belief that lawful physician assisted dying extends the lives of those who are terminally ill.

In California, a terminally ill person who wishes to have the benefit of all medical resources that are available, or not, has that choice. However, a person who wishes to have the assistance of a physician in the dying process—either due to unremitting pain and suffering or the absence of adequate quality in life—does not have that choice. As one opponent to legalization of assisted dying once said in a debate with me, “So long as there are bridges and tall buildings from which a dying person can jump, there is no need for a law that would permit a physician to prescribe medication to end a person’s life.”

For a terminally ill person who wishes to end his or her life, the nonviolent choices available in California are (a) terminal sedation—that is, being rendered unconscious by a physician to end unremitting pain and suffering—and withdrawal of food and hydration until death occurs, or (b) electing to cease taking all food and hydration until death occurs, in short, starvation. In either case, a person’s discomfort may be palliated by medical support and supervision.

In the more than quarter century that I have been part of the effort to adopt the Death With Dignity Act, a statute which permits a physician to prescribe life-ending medication to a competent, terminally ill adult, an important change has occurred in the medical community, in part as a result of the perceived threat of enacting such a statute. Palliative care as a medical specialty has developed and its implementation has greatly improved the care given to those who are dying and suffering. A focus on the relief of such discomfort has become nearly uniformly viewed as an important, legitimate treatment objective. The question remains then, if such improvement in care has been made, is physician assisted dying even necessary?

I believe the question that ought to be considered when it comes to the matter of how one should be treated as death approaches is a very personal one. The extent to which the law should define the choices we have is the debate that has been going on for three decades and more. If I wish to ask a physician to help me at the end of life by prescribing medications for self-administration, should I have such a choice as a lawful option?

Is the issue a legal question? Is it a matter of public policy? Or is it a question of morality, founded on religion or other basis? I believe the simple answer to each of those questions is, “Yes.” And that is the problem.

If it is simply a religious question, respect for each person’s religious beliefs resolves the debate. If it is a matter of public policy, the debate will be waged by generally well-meaning stakeholders each contending they know what is “best” for us. And if the question is only one of law, then you as legislators must deal with those stakeholders, religious advocates, public policy gurus, lobbyists and organizations committed to the implementation of law that advance their agendas. For some of you, it is a matter of dealing as well with your own personal religious, moral, and ethical views.

Three states, Oregon, Washington, and Montana, and a number of European countries, now provide that option for its residents. Oregon and Washington adopted the Death With Dignity Act by initiative process. A similar statute was offered by initiative in California in 1992, and most recently in Massachusetts last November. Though public opinion supported the passage of the Death With Dignity Act in both California and Massachusetts, both failed. Conservative religious opposition succeeded in defeating the measures by spending about five times more money than proponents of the Act.

In Oregon, there has been 15 years of experience in implementation of the Death With Dignity Act; in Washington, the statute was enacted in 2008 and implemented in 2009. In Oregon on average, 45 persons per year have availed themselves of the statute. There are no reports from either state of any coerced or involuntary deaths; that is because there are adequate safeguards—hurdles to overcome—before a person may receive lawful assistance in dying from a physician.

In Oregon, about 60% of those asking for prescriptions to end their lives have used them. The percentage of deaths for that state occurring as a consequence of the implementation of the Death With Dignity Act is 0.0015 per cent (15 ten thousandths). If translated to California, a state in which there are at present about 233,000 deaths per year, that number would be about 360 who might avail themselves of assisted dying.

In Europe, physician assisted dying has been legalized in Switzerland, Belgium, Luxembourg and the Netherlands. The laws in those countries either permit a terminally ill person to request the assistance of a physician in dying or have decriminalized physician assisted dying.

However, from my experience with terminally ill persons attempting to avail themselves of physician assisted dying in Switzerland, non-Swiss citizens are greatly discouraged from utilizing the process by significant administrative roadblocks and substantial expense.

Physician assistance in dying, when permitted, “benefits” only those who choose that option; it does not in any direct or meaningful way affect those who object to the practice.

My experience in working with people who gain the knowledge that they may control their dying process informs me that providing compassionate assistance at the end of life extends lives; it does not shorten them. It reduces anxiety of dying persons and their loved ones. Once having gained the control they desire to end their lives if suffering is too great, precipitous action is avoided—bridges and buildings return to the functions for which they were designed rather than jumping off points for those abandoned to die alone.

For the most part, people do not fear death—what they fear, and wish to avoid, is unnecessary suffering during the dying process.

There have been efforts in a number of legislatures over the years to advance the Death With Dignity Act as well as other failed initiative efforts. Currently, in New Jersey and Vermont, there are bills moving toward possible implementation. In Montana, physician assisted dying has been sanctioned by court proceedings, a process, unfortunately, which results in a lack of safeguards, a major reason to implement the process by legislation.

Public support for physician assisted dying has grown over the years. This is reflected consistently in our news media, as prosecutors resist prosecution of compassionate efforts that result in the death of loved ones and judges are reluctant to impose jail sentences in such cases. These are not the cases in which a person takes the life of another for financial or other personal gain. They are the cases in which relatives or friends are drawn into committing a criminal act in order to relieve the suffering of a dying person.

Were a convicted criminal allowed to starve to death by involuntary denial of all food and hydration or being thrown from a tall building to impose a death penalty, is there any doubt it would be determined cruel and unusual punishment under the Eighth Amendment? Yet, those are essentially the legal options available to a terminally ill person who is not a condemned criminal.

In a debate I once had with a person who opposed the Death With Dignity Act, he said in all sincerity, “You know, there is redemptive value in suffering.”

My response was and is that I respect the right of my colleague (opponent) to suffer as much as he chooses, to seek all the redemption he wishes or needs. I only wish that he could similarly respect, rather than oppose, the right of others to choose a more compassionate and legally authorized dying process such as that contemplated by the Death With Dignity Act of Oregon or Washington.

There are arguments against legalizing physician assisted dying: It is immoral, it is contrary to religious doctrine, it could be abused, it could be a first step on a slippery slope to taking lives involuntarily.

But as we contemplate the array of choices one might have at the end of life, should a request for assistance of a physician in the dying process be respected and not prohibited by law? Surely such a request if honored does not in any way impinge on the rights or values of those who oppose it, for they are in no way obligated to choose that option.

I appreciate this opportunity to provide a view about the choices that pertain for those who are dying. I know from my experience in working with those who request assistance in dying that when they know that they have control of the dying process, their anxiety is lessened and they do not seek a bridge or tall building from which to relieve their suffering.

Why is it that we are reluctant to trust the desires of dying patients to engage in decisions with their physicians that are founded on relief of suffering? What justification is there for the continued ineffective criminalization of acts which relieve anxiety, extend lives and remove government from one of those very unnecessary intrusions into the personal lives of citizens? This is a question that ought to be resolved between physicians and patients—not by prosecutors and judges.

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Sarasota Bay Parrot Head Club Reef 7-2010 Check out the life and growth

For the past 6 years the Sarasota Bay Parrot Head Club has been creating a reef ball reef off of Sarasota, FL. This reef is adjacent to the Eternal Reef memorial reef site on Silvertooth Reef. The life and growth on this reef site is incredible and is making a real contribution to the marine environment and to future generations. Each time a Parrot Head chooses to be memorialized as an Eternal Reef we add another reef ball to the SBPHC site with a plaque identifying the Parrot Head and the club they were a member of. Visit us at www.eternalreefs.com and become a fan of Eternal Reefs on Facebook, www.facebook.com/eternalreefs Thanks, George

Life Death And Funerals

A film made by Northampton college students about Greenhaven Woodland Burial Ground Lilbourne nr Rugby Warwickshire cv23 0sz www.greenhaven.org.uk

Book Review: “Twelve Breaths a Minute: End of Life Essays”

 End of Life EssaysMeg Claire had dedicated her career to the success of grassroots nonprofit organizations. Currently, she
serves as a director at one of the country’s most prestigious children’s hospitals. For more, follow Meg on Twitter.

I want a good death. You probably do too. But people who have made clear their decisions about wanting to die at home surrounded by loved ones, still end up dying in ICUs. They undergo treatments that prolong their suffering and may shorten their lives, even when they know they are imminently dying. We hope for a heart attack, one big one to finish us off, but the odds aren’t in our favor. For most of us, it’ll be the long, slow decline we dread.

But how much should be done to prolong life like that? When should those efforts stop? How hard should we struggle for or against the wishes of the dying? Twelve Breaths a Minute: End of Life Essays, edited by Lee Gutkind (Creative Nonfiction Foundation, 2011) addresses those questions and many more. This collection of 23 essays is written by doctors, counselors, hospice workers, nurses, EMT dispatchers, attorneys, and family members—all of whom write honestly about their experiences witnessing the end of life. The book is an excellent and powerful resource for family caregivers, palliative treatment professionals, and clergy. It should be required reading for all nurses, physicians, and medical students.

While each essay presents individual experiences, what emerges is a larger picture of how, in the United States, in the early years of the twenty-first century, people are going about the business of dying. We learn that 71% of men admitted to nursing homes don’t last three months. And 80% don’t last six months. We learn the code words and nicknames used by medical professionals. Essayist Valerie Seiling Jacobs tells us “the nickname residents had for old people, for patients who required a ton of paperwork and tests but were unlikely to get better. ‘GOMERS’ they called them—Get Out of My Emergency Room.” But we also learn about the secret grace with which people face their own death. And the immense, sometimes painful courage it takes for family to stand by their side. We learn about cultural traditions around death and the mysteries that occur at the end of life, like one long-held multi-cultural belief suggesting opening a window just after someone died to let the soul escape. And we learn that apparently a great many of the dying report having casual conversations with deceased loved ones just prior to their own death. We learn that people can have a good death.

The essays are sometimes emotionally challenging to read, but they’re endlessly captivating.

  • An 18-year-old falls into a traumatic coma and her mother has minutes to decide whether to donate her organs. She develops loving friendships with those people who received the gift of life that originated from her daughter’s death.
  • A burned out hospice nurse estimates being present for the deaths of over 1,500 people. She decides to transfer to labor and delivery where she vows to deliver 1,500 babies before retiring.
  • In a surprising turn of events, an inexperienced ER intern has to treat his attending surgeon’s dying mother.

One of the most fascinating essays is “Waiting (to Go Home)” by Howard Mansfield who regularly visits nursing homes. With a wry humor (“Sea View, this place is called. No sea, no view—no surprise.”), and aching heartbreak (“I see a woman…collapsing into herself the way the aged do when they’re wheelchair bound, taking on the shape of a soft, deflating ball.”) he describes the day-to-day goings-on in an average nursing home.

The hardest to read is Beecher Grogan’s essay “Simple Gifts” about her eight-year-old daughter Lucy’s torturous battle with leukemia. “There was constant fear and anxiety but some beauty too,” writes Grogan. “Beauty in being forced to live in a moment-to-moment appreciation of the wonder and the gift of our children. Beauty in the grace with which our children bore suffering and tried to protect us from the darkest places.”

Sometimes the writing is simply beautiful. In “Yellow Taxi” Eve Joseph writes, “I believe it would be a fine thing to leave the world in a small wood and paper boat holding a lighted candle.”

Twelve Breaths a Minute tacitly magnifies our collective fears about growing old and dying. We’ve decided that death is a choice; one we don’t have to accept if we don’t feel like it. This is a uniquely Western—and specifically American—phenomenon. Doctor Jonathan Weinkle describes the medical establishment’s treatment of death this way: “The system is a little like junk mail. It keeps coming whether we want it or not, and it is much more difficult to opt out than to let it keep coming. Lab tests, x-rays, EKGs, and consults pile up, adding more useless information that obscures the fact that someone we love is dying, and nothing we do in response to the junk mail of test results is going to change that.”

“The American Way of Death” by Jessica Mitford, written over 50 years ago, shows us not much has changed in our absolute refusal to accept death as a part of life. Doctors use euphemisms to notify us of our loved one’s “passing”. Twelve Breaths essayist Joe Primo reminds us “…every ten acres of cemetery has approximately one thousand tons of steel, twenty thousand tons of concrete, and enough wood to build 40 houses. Not to mention enough toxic chemicals to embalm a village.” After death, we’ve removed the elements of family and community and instead inserted a “concierge” service that controls our grief by inhibiting intimacy. The funeral home is a theater of avoidance with pink lighting. We spend thousands to ensure our loved one is “properly disposed of”.

The most significant takeaway from Twelve Breaths a Minute that I will remember for the rest of my life is about permission. Apparently, the dying hang on longer if they think you can’t handle going on without them. When grief counselors step in and encourage the family to “give permission” to their loved one that it’s okay to let go of life, they let go. Tell them you’re ready; that they have your permission to die. Studies have shown that this simple statement of permission has sped impending death, even for the comatose, markedly decreasing suffering.

Twelve Breaths reminds us that on the continuum of life, death is the counterpart to birth. It’s just on the opposite end of the spectrum. It deserves the same reverence, the same respect, the same sense of community-building, and the same joy. The same recognition of a life, regardless of whether it is beginning or ending.

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Tribute Caskets: A One-of-a-Kind Tribute, to a Unique Life

For people who want something special and unique, but also affordable and environmentally responsible. tributecaskets.ca For many people, a “traditional” funeral is out of step with how we have lived our lives and want to be remembered. We want more than the standard wooden box or metal casket that our parents and grandparents chose — we want our funeral to tell the story of who we really were; what our life meant, and the legacy we leave behind. Now there’s a new funeral casket that is kind to the environment and reflects who we are and how we have lived our lives; our interests, passions and personality. This highly personal type of memorial is manufactured in Canada under the fitting name of Tribute Caskets. These caskets are made using sustainable, renewable fiberboard, non-toxic starch based glues and custom printed using vegetable oil inks. Suitable for traditional burial, cremation and the growing trend of natural burial.