A Growing Conversation About Death with Dignity

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For years, many state lawmakers have been working quietly to put forward Death with Dignity legislation, and with the recent shift in the national conversation around end-of-life healthcare policy reform, some politicians are taking a more vocal stance. Within the last few years, Vermont Governor Peter Shumlin made Death with Dignity part of his campaign platform; New Jersey Assemblyman John Burzichelli introduced and is championing his proposed Death with Dignity legislation; and Pennsylvania State Senator Daylin Leach has begun being more vocal in his support for the Death with Dignity bill he proposed.

His bill emulates our model legislation, the Oregon Death with Dignity Act. In an editorial published this week, Senator Leach outlined why Pennsylvania needs to follow in the footsteps of Oregon, Washington, and Vermont. He pointed out how Americans want and seek out options in all facets of their lives:

The desire for choice seems to be in America’s DNA. As a people, we demand a cornucopia of choices in virtually every aspect of our lives. We demand everything from 31 flavors to 800 channels. We go to The Cheesecake Factory to choose between 300 menu items, in a mall with 400 stores…Yet we have, for the most part, passively accepted the denial of any choice in the one area of life where it perhaps means the most. In most places in this country, we can not choose how we want our lives to end.

He went on to explain specific provisions of the proposed Pennsylvania legislation:

The bill requires that any person wanting the medication fill out and sign a notarized form, indicating that they themselves were making the request. They would then need two separate doctors, a treating physician, and a non-treating independent physician to attest that the patient has a terminal disease and has less than 6 months to live. Only then would the medicine be disbursed.

Senator Leach addressed opponent’s false assertions which we’ve heard since Oregonians voted on the groundbreaking Death with Dignity Act in 1994; he pointed out the proposed law would only be an option for people who are clearly dying as a result of a terminal illness. He also reflected on the experience of people who’ve exercised their rights under other states’ Death with Dignity laws that “just having the medicine, and the options it brings, is enough comfort to enable them to keep going.”

Poignantly, he ends his op-ed by summing up the true aim of Death with Dignity laws: patient centered care.

Ideally, the end of life is a time filled with sadness, but also sweetness, reconciliations and meaningful goodbyes. It is an intensely personal time that should be choreographed and lived by the person and the family affected.

Senator Leach’s editorial is part of the growing public demand for laws to allow terminally ill people to decide what’s best for themselves in their final days, and it’s refreshing to see more and more politicians calling on their fellow lawmakers to stand up and respect the will of the people.

View full post on Death with Dignity National Center



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.

View full post on Death with Dignity National Center

Facts About Death with Dignity Guide the Conversation

New York Times Cover Aug. 12, 2012
New York Times Cover Aug. 12, 2012

Getting an important cause noticed by a large group of people is a challenge—it’s especially difficult when an issue is about something many people don’t want to talk about: death. What a difference it makes when one of the major papers in the US publishes an article on the front page of their Sunday edition.

Last Sunday, the New York Times published an informative article by Katie Hafner about assisted death and Dignity 2012′s effort to ask Massachusetts voters how they feel about Death with Dignity. Hafner’s article covers a lot of ground in a relatively short space. She shares the story of a Washington state doctor’s decision to request the medication, his physician’s and wife’s feelings about his decision, and even covers how the main myths regarding the Oregon and Washington Death with Dignity Acts have been debunked by years of data and research.

I’ve been watching the chatter on social media about the article, and the personal perspectives shared in it, such as this one, are mentioned most often:

Dr. Richard Wesley has amyotrophic lateral sclerosis, the incurable disease that lays waste to muscles while leaving the mind intact. He lives with the knowledge that an untimely death is chasing him down, but takes solace in knowing that he can decide exactly when, where and how he will die.

And anecdotal observations like this one capture many people’s attention:

There are no studies of the psychological effect of having a prescription on hand, but experts say many patients who have received one find comfort in knowing they have or can get the drugs. About a third of those who fill the prescription die without using it. “I don’t know if I’ll use the medication to end my life,” Dr. Wesley said. “But I do know that it is my life, it is my death, and it should be my choice.”

On the other hand, reactions to the article published on news sites and blogs have focused more on the facts about Death with Dignity Acts and how the original fears spouted by opponents haven’t happened. Dr. Bruce Wilson, a former hospice medical director, discussed these facts in an article featured in Milwaukee’s Journal Sentinel:

When one looks into physician-assisted suicide (or even euthanasia, which is illegal in the U.S., but legal in seven countries), one finds that the patients who choose these methods are not so much trying to orchestrate how they die, but how they will live in their remaining days.

Protecting high-quality time with their friends and loved ones is the goal. They wish not to lose dignity, or independence, or precious hours, days or weeks by undergoing aggressive treatments that cannot “cure” their diseases. This is what the data shows over the 14 years that this law has been in place in Oregon.

Understandably, the argument has been that this puts us on a slippery slope. What is interesting is that there does not appear to be one.

In no state where physician-assisted suicide is legal, or any country where euthanasia is practiced, has there ever been a vulnerable person who had this type of a decision made for them. In fact, the safeguards against this are many, and layered.

Nikki Tucker from Medical Daily described the safeguards in the law and how they’ve made sure everyone involved in the process is protected:

Both Washington and Oregon use meticulous and strict guidelines to determine who will be considered to receive the drugs. Two physicians are required to confirm that a patient has a maximum of six months left to live. The requests must be made twice, with each request made 15 days apart, before the prescriptions are given. The drugs also must be self-administered.

For an editorial writer in Astoria, Oregon the New York Times article brought back memories of Oregon’s debates in 1994 when the voters approved the state’s law—the first in the nation.

When Oregonians debated this proposal 18 years ago, opponents raised the specter of terminally ill people moving to Oregon in large numbers to kill themselves. There was also fear that indigent people would be forced to use the law. Hafner quotes researchers at Oregon Health and Sciences University who note that neither of those outcomes have occurred.

Roman Catholic bishops injected religion into Oregon’s debate, but the topic on voters’ minds was pain and self determination at the end of life. That same dichotomy is playing out in Massachusetts. Our debate and our law caused physicians to pay more attention to palliative care. Oregon’s example is being studied elsewhere. That’s a good thing.

A good thing indeed.

View full post on Death with Dignity National Center

A Personal Narrative about Funerals

Info about Passages International

Information about Green Burials and Passages International

Arabella Melville talks about the Eternal Forest Trust

Arabella talks about the natural burial charity and Trust ‘Eternal Forest’ at Boduan. Pen Llyn

Selena Fox tells us about Green Burial at Circle Sanctuary

First Green Burial At Circle Sanctuary. www.circlesanctuary.org www.celiaonline.com