Dying the Way I Want: Death with Dignity in Maine

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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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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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Canada Legalizes Physician-Assisted Dying

Canada today provided terminally-ill citizens with increased peace of mind and control over the dying process. The Supreme Court of Canada ruled that those who are terminally ill and experiencing intolerable suffering have the right to a physician’s assistance in hastening death. The monumental ruling demonstrates Canada’s commitment, as a country with a reputation of being a just and civil society, to allowing terminally ill individuals the right to increased control in their final stages of life and strikes down an inhumane ban on assisted dying that interfered with the most fundamental of relationships between a dying patient and his or her physician.

The Canadian case, Carter v. Canada, featured several patients, but was driven by the plight of countless others. Gloria Taylor was a woman living with ALS who appealed to the Canadian court system in 2011 for the right to a dignified and humane death. The British Columbia Court of Appeals granted Taylor a personal exemption from the ban on assisted suicide, providing her with the right to an assisted death. After her death, the case continued, reaching resolution today.

According to our Executive Director, Peg Sandeen, “this groundbreaking ruling demonstrates Death with Dignity is an issue of pressing concern for the courts, for state legislatures, and for terminally ill individuals and their family members all over the world.”

Currently, 19 U.S. states and the District of Columbia are considering Death with Dignity legislation based on the original model, the Oregon Death with Dignity Act. Additionally, an assisted-dying bill is being considered in the House of Lords in the United Kingdom.

Sandeen reiterated, “The rights of terminally ill individuals have been ignored for too long. The inhumane denial of autonomy and control for those who are dying must stop. The United States must look to Canada’s ruling and Oregon’s model law to provide a dignified death to all those terminally ill, mentally competent individuals seeking it.”

Image by Lone Primate

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Dying to Give Back to the Earth

Greensprings is located in New York's Finger Lakes region
Greensprings is located in New York’s Finger Lakes region

Hunter Marshall is a hospice nurse, advocate for the right of Death with Dignity, and environmental activist from the Pacific Northwest. This article was originally published on Waging Nonviolence and appears here courtesy of a Creative Commons license.

I met with Jean shortly after she was diagnosed with pancreatic cancer. As I approached her home for the first time, I was greeted by voluminous blue barrels at the bases of the gutters collecting rainwater from a passing storm. An attached hose snaked outwards towards a garden burgeoning into spring. She welcomed me inside with a warm smile that offset the cool air in her minimally-heated home. As a visiting nurse, I actively observe patients’ homes with an eye towards safety and functionality. Jean’s home, outside and in, was a testament to the more than 50 years she spent as an environmental activist.

Displaying a subtle yet undeniable eccentricity so common in activists, she served sparkling cider in champagne glasses while we discussed her end-of-life arrangements. Unsurprisingly, she wanted to die just as she had lived: green. So after a life of environmental stewardship, she was met with the daunting task of choosing how to most sustainably return her body to the earth.

The funeral industry is, by and large, a $20 billion for-profit enterprise, whose environmental impact has been greatly overlooked. This is understandable, given that those making end-of-life arrangements are frequently grappling with loss, which can monopolize one’s attention. Nevertheless, it is estimated that each year 30 million board feet of chemically-treated hardwood, 827,000 gallons of carcinogenic embalming fluid, and thousands of tons of concrete, steel, copper and bronze are buried along with the bodies of the departed. Not only is this a colossal waste of resources—a typical 10-acre cemetery has enough wood in the form of caskets to construct 40 houses—but there are also concerns about the pollution of groundwater near cemeteries. Formaldehyde, a major constituent of embalming fluid, has been proven to increase the cancer risk among those with high levels of exposure. Exacerbating things further is the fact that the use of these types of wood is largely unsustainable, with some caskets being sourced from endangered mahogany.

While cremation would seem to provide an appealing alternative, the carbon footprint and release of vaporized mercury (from the fillings in people’s teeth) still leave much to be desired. It is estimated that each year in the United States 600 pounds of mercury, among other pollutants such as dioxin, are released as a result of cremation. Legislative attempts to mandate that all crematoriums install filters that act to reduce emissions have been successfully blocked by industry groups in a number of different states. Currently, the Environmental Protection Agency does not regulate crematoriums.

Fortunately, eco-friendly, or green burials, are on the rise and offer an alternative to the financially expensive and environmentally costly conventional burial. In 2008, there were only a dozen eco-friendly burial providers. That number has since grown to 300 and shows no sign of slowing. A green burial is much like a conventional burial, but without the detrimental impact on the environment. For open-casket funerals, the body can be preserved for display using either dry ice or non-toxic and biodegradable embalming fluids. Rather than a casket made of unsustainable wood treated with chemicals, individuals have the option of either a simple burial shroud, or a casket with non-treated wood.

Standards have been developed to define what constitutes a green burial in order to thwart greenwashing, where the environmental benefits of a product or service are exaggerated to capitalize off of the public’s growing concern for the earth. This acts to empower people to make consumer choices that reflect their ethical and moral values. The standards are set and maintained by the Green Burial Council, which describes itself as “a nonprofit organization working to encourage environmentally sustainable death care and the use of burial as a new means of protecting natural areas.” To ensure continued compliance with these standards, the Green Burial Council continuously assesses the environmental practices of the companies and products that earn eco-certification. Furthermore, since the many ways in which a body can be returned to the earth have varying impacts on the environment, there are a number of designations under the eco-certification umbrella for burial grounds and products that range from having a neutral environmental impact to a positive one.

For Jean, however, simply minimizing her impact on the environment was not enough. Having utilized nonviolent direct action to protect local waterways from contamination, her zeal for protecting the environment led her to look for a way of turning her death into an act that would have a positive impact on the environment.

Jean—like an increasing number of people—was able to choose what the Green Burial Council terms a conservation burial ground. To receive this designation, Green Burial Council standards require that all burial grounds be “owned by, or operated in conjunction with a government agency or a nonprofit conservation organization,” whose goal is conservation. Conservation burial grounds, in effect, intend to transform cemeteries into nature preserves located in environmentally sensitive areas.

Here, one will find no acres of manicured lawns reminiscent of a golf course, but rather vast natural landscapes. At burial sites there are no plastic flowers or roses, but instead plants and flowers indigenous to the surrounding ecosystem. In a nod to sustainability, an additional requirement of the Green Burial Council is that 5 percent of the cost of the burial plot be allotted for an endowment to ensure the integrity of the land into the indefinite future. This might be thought of as a sort of posthumous occupation with the intent of protecting the most environmentally vulnerable areas from development or destruction.

When Jean died—only a few months after we had met—she left behind not only a legacy of beneficence, but an endowment geared towards educating and inspiring a new generation to continue her work of protecting wetlands. Throughout her life, Jean was a staunch advocate for Mother Nature. And thanks to the growing availability of green burials, Jean’s final act of returning her body to the earth was one that will continue her life’s work of environmental stewardship.

As Jean walked me to the door of her home that afternoon, I asked, “What advice would you give to the next generation of environmental activists?” She responded simply, “When you witness an injustice, do something.”

For Jean, that motto carried through to the very end, where she took a stand against the injustice of an unsustainable industry bent on profiting off her death by choosing instead to contribute to what she believed in most: life.

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Dying on Her Own Terms: A Tribute to Courage

Bitten, by Gina on flickr
Bitten, by Gina on flickr

I knew Riva for more than 40 years. At her healthiest she was less than five feet tall, weighed less than 100 pounds and, when energized or angry, she had the mouth of a longshoreman. Feisty is the word that comes to mind.

When she was diagnosed with emphysema, Riva put up more than a vigorous fight, she seemed to take on the whole world. She fought it for 20 years and lived vigorously during those years.

In the last few months of her life, she was hospitalized for a number of lung related ailments and her weight dropped down to about 70 pounds. She was offered and received all sorts of treatments, procedures and medications at huge expense. During her last hospitalization, finally fed up, she complained bitterly they were “killing her.” She took control and removed the IVs that were providing her hydration and medications. She demanded to be released AMA (against medical advice.) She just wanted to go home and die.

Riva knew of my interest in death with dignity. I was called to visit her and talked with her about her most recent hospitalization. She complained she was miserable and uncomfortable in the hospital, they were causing her great pain and discomfort and they were “killing her.” When I asked what she wanted, she said, “I just want to die. Can’t they give me something to do that?”

We were in California. Not Oregon or Washington—the two states with Death with Dignity laws at the time.

What was clear from my conversation with Riva was her fear of suffering. The medical support to keep her alive was invasive, uncomfortable and medications were making her feel awful. All she wanted was to die peacefully.

I explained to her what I believed to be her options. One option she didn’t have was to lawfully obtain medications to help her to die as she wanted like she would’ve had in a state with a Death with Dignity law. However, she could stop taking in food and hydration and she would soon die.

Riva looked at me dumbfounded. She had never thought of just stopping eating in order to die. She wasn’t a person with limited intellect. In her 70s and early 80s she was in school and earned a bachelor’s degree. She was a poet. She was sitting in her bed as I talked with her, using her iPad to pay bills, searching the Internet, and communicating by email with grandchildren. It had just never occurred to her to stop eating in order to die. The concept for most of us sounds awful—for some, even disgusting. I also assured her if she were uncomfortable in the process, medication could be provided to relieve that discomfort.

As I was leaving Riva, she unconsciously picked up a bread roll on the stand beside her bed, bit into it, stopped mid-bite, looked at me and spit it out into her hand, laughing. Our habit of eating is in great measure an unconscious one and certainly ingrained in our being. Riva had made her decision; she just hadn’t fully informed herself what that meant.

Riva had a couple of really wonderful days after that. She was loving and grateful; totally in control and happy. All of the unhappiness and anger she brought with her on return from her last hospitalization was gone. She said over and over she knew she was going to a good place and she was content with her life as it had unfolded.

In her weakened state, it didn’t take long for her to die. Her daughter spent her last hours in bed with her, just holding her, at home, in control and moving on.

For me, I’m saddened there are so many who believe giving people control over the end of their life is a moral issue. To me, it is a personal issue. For those who oppose physician assisted dying, I understand and support their right to die “naturally” with all the help the medical community can provide to delay their demise if they wish. Were there only reciprocal respect from those who resist turning control over dying to those who are dying and enabling that with compassion.

Whether Riva would have ingested medications to end her life or not I’ll never know. But I do know once she obtained control of the process, she took it, relieved of anxiety, and died with courage and in comfort.

The recent report by a Seattle cancer center of its implementation of the Washington Death with Dignity Act has given me a great sense of personal satisfaction as I’ve witnessed acts of compassion and wisdom in helping people to die on their own terms. I’ll never forget debating a person who opposed the Death with Dignity Act, where the opponent claimed there’s “redemptive value in suffering.” To which I retorted, and with compassion there are the values of respect and empathy.

Riva demonstrated for me the value in providing control over one’s dying process. Suffering—which we truly fear at the end of life—is simply relieved.

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Dying Wish: A Documentary About a Peaceful Death

Karen van Vuuren is a former broadcast news journalist with experience working in the field of end-of-life and directed the documentary Dying Wish. Below she explains more about working with Dr. Miller to film the documentary.

Karen’s currently completing a new documentary, Go In Peace! on caring for veterans with PTSD who are facing serious illness or death. She is also the editor of Natural Transitions Magazine, a quarterly magazine focusing on conscious, holistic approaches to end of life.

Retired surgeon, Dr. Michael Miller, knew he wanted to die in his own bed, at his home in Boulder, Colorado. His desire was to leave surrounded by family, and under the care of a supportive hospice team. Dr. Miller had done his homework on his end-of-life choices. He’d researched the dying process and discovered that patients who stopped eating and drinking often had an easier exit.

Yet, Dr. Miller found few studies specifically addressing Voluntary Refusal of Food and Fluids. What evidence he came across, proved largely anecdotal. He also discovered a lack of knowledge and information relating to dehydration and the dying process, not just among patients and their families, but also among professional healthcare providers. The documentary Dying Wish is the gift of a compassionate physician who laments his own past lack of skill at the bedside of the dying.  

Dr. Miller had decided when his own body began to signal his closeness to death, he’d allow nature to take its course by stopping drinking and eating. His existential pain around a prolonged dying process, and his belief that dehydration would alleviate some of his more troublesome symptoms, led to his decision to refuse food and fluids.

When filming began, Dr. Miller hadn’t yet embarked upon his fast. For some time, he’d been dealing with pain, nausea, and diarrhea, for which he was being treated by his hospice care team.

When Dr. Miller called a Colorado radio station with a request for a documentary about his death, he never imagined he’d meet a journalist with end-of-life expertise. In his conversation with me, Dr. Miller first focused on the possibility of a radio feature. When he learned of my previous experience as a television producer, he suggested a film. Within days, a camera crew was assembled and standing by for daily visits to Dr. Miller’s house.

Over the course of two weeks, Dying Wish followed Dr. Miller throughout his fast, to his death on the thirteenth day of not eating and drinking. We see the physical changes in him, the dizziness associated with hypotension, the muscle loss, cachexia, and the weakness. We hear about the methods of comfort care he employs to address the most common adverse symptom of dehydration in the dying: dry mouth. Those who have seen the film often express their surprise at Dr. Miller’s still frequent trips to the bathroom days into his fast, emphasizing the fact that abstaining from fluids doesn’t preclude urination. The body still needs to eliminate waste.

Dr. Miller wanted to highlight the common physical benefits of dehydration at the end of a terminal illness—the release of endorphins providing natural analgesia, reduced edema and pain from fluid-filled tumors, and fewer secretions, to name a few. His goal was to dispel myths of protracted pain and anguish due to thirst. At no point does Dr. Miller complain of either thirst or hunger. Indeed, it becomes clear cancer took away his hunger, months before he signed on to hospice. Reduced appetite, then, is seen as a natural part of the dying process, as the body begins to shut down.

Ultimately, Dying Wish provides a window on the dying process, demystifying it for the many whose only experience of death is as a chaotic, tragic event or as a medical emergency. Perhaps the most profoundly touching scenes are those in which he takes leave of his family, reflecting on his life and the nature of his leaving, turning the period of his dying into a meaningful rite of passage.

Dying Wish addresses far more than what it means to refuse food and fluids at the end of life. As an educational tool, it invites discussion about existential and psycho-spiritual questions such as the nature of a “good death” and what it means to be “ready to die?” I sought out bioethicists who could comment on these issues, and share their own experiences with patients who had made similar choices.

Dying Wish makes it clear patients have a right to stop eating and drinking at the end of their life. Dr. Miller’s own advanced directives emphasized quality of life. He was determined to avoid the indignity his 102 year-old mother faced at the end of her life when nursing home staff cajoled her into eating against her will.

Among the general public, Dying Wish has opened hearts and minds to a subject that, in our society, still does not bear thinking about. Audiences who’ve seen Dying Wish are often incredulous that patients can exercise such control over the circumstances surrounding their death.  

Clearly, as a medical man, it could be said that Dr. Miller had a need to control his death. But, equally, he had a desire to approach it with a degree of consciousness that assumed acceptance of the inevitable course of nature. Physicians who’ve seen the film, have commented Dr. Miller made them feel more comfortable about their own deaths. End-of-life professionals have used it with patients to broach sensitive issues that may be more easily aired through the less personal medium of a documentary film.

Dying Wish was screened at film festivals around the country and featured twice at the clinical conference of the National Hospice and Palliative Care Organization.

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Dying to Be Green

One of the hardest things to talk about in life is death, and what happens after we pass away. But there’s a growing movement to consider the environment when planning a funeral. Chief correspondent Tyler Suiters looks into how “green” burials and cremations allow people to make sure their death conserves energy and protects the planet.

‘Dying Green’ Explores Conservation Through Natural Burial

Learn more: to.pbs.org A new documentary explores environmentally friendly burial – and how it can be used to conserve land – by following a pioneer of the movement, Dr. Billy Campbell. Hari Sreenivasan recently sat down with Dr. Campbell and the filmmaker, Ellen Tripler, to find out more about the practice.