BMJ Urges Move to Neutrality on Death with Dignity

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Stethoscope by David DeHoey, on Flickr

In a reasoned move, the British Medical Journal today called for all professional medical bodies in the UK to take a neutral stance on Death with Dignity laws. This viewpoint, put forth in an editorial by Fiona Godlee, Editor-in-Chief of the Journal, urged the British Medical Association (BMA) and the various royal colleges to move their official position on Death with Dignity from opposition to neutrality.

The editorial followed a recent poll of physicians in England asking if they favor or disfavor a move to neutrality. Of 1,000 physician respondents, 62% agreed that the BMA and royal colleges should move to a position of studied neutrality.

Godlee drew parallels to the position of professional medical bodies on the issue of abortion, noting these same organizations were opposed to abortion until a change in the law imminent. She said, “A change in the law, with all the necessary safeguards, is an almost inevitable consequence of the societal move towards greater individual autonomy and patient choice…and it may not happen until we value death as one of life’s central events and learn to see bad deaths in the same damning light as botched abortions.”

Death with Dignity has been the topic of debate in England for many years. It’s played out in Parliament, in the courts, and in the media.

There have been successive waves of Death with Dignity legislation proposed in Parliament; all blocked. Additionally, the Director of Public Prosecutions released guidelines in 2009 outlining the situations under which someone could be prosecuted for assisting in a suicide, at the request of a woman suffering from MS who wanted to travel to Switzerland to take advantage of their assisted dying legislation, but didn’t want her husband to be prosecuted for traveling with her.

Terry Pratchett, a popular English novelist, has taken up the cause. In 2011, his documentary Terry Pratchett: Choosing to Die was released on BBC, and went on to win the Scottish BAFTA award for Single Documentary.

These cultural responses all indicate we’re on the cusp of acceptance of Death with Dignity. Raymond Tallis, Chair of the pro-Death with Dignity group Healthcare Professionals for Assisted Dying, highlighted how the opposition is out of touch with trends in medicine toward patient-centered care. In the Journal press release, he summarized this sentiment well: “…the monstrous cruelty of walking away from a dying patient in unbearable suffering seems more obviously contrary to the ethos of medicine.”

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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

The Boston Globe on the Massachusetts Death with Dignity Initiative

Photo by Ryan Huddle of Globe staff
Photo by Ryan Huddle of Globe staff

Last Sunday, the Boston Globe Magazine helped many Bay Staters learn more about the proposed Death with Dignity Act in Massachusetts. The magazine’s feature, “Dying wishes”, by Scott Helman contains a personal story about why two Massachusetts advocates are volunteering their time in support of the ballot measure, outlines the facts of the measure, and highlights the history of Death with Dignity laws in other states.

Perhaps the most touching story from the article is that of Heather Clish. When her parents were visiting Heather in Massachusetts, her father was diagnosed with a terminal brain tumor—the same type of cancer Senator Ted Kennedy had. An Oregonian, Heather’s father knew of his state’s Death with Dignity Act, and chose to request the prescribed medication while he received palliative care and his family enrolled him in hospice care.

When his pain and suffering became too great for the doctors to relieve, he decided to take the medication. Heather and her sisters were able to travel to Oregon to be with her dad in his final moments:

Clish and her two sisters filled his ears with pleasant images. Mary Lou lay in his arms, as he’d wanted. He had earlier told her, “I hope I will be holding you when I take my last breath.” Johnson slipped into what looked like a deep sleep. After about 15 minutes, his pulse stopped.

Massachusetts’ proposed law emulates the time-tested and safe Oregon and Washington laws. All too often, inaccuracies are put forth about Death with Dignity Acts, but to reduce confusion, Helman does an outstanding job of explaining the facts about law:

Under the Massachusetts proposal, which is virtually identical to the laws in Oregon and Washington, terminally ill, mentally competent adults deemed to have six months or less to live would have the freedom to obtain a fatal prescription. They could qualify only after going through a process designed to ensure that they are not being coerced and that they fully understand what they’re doing. They would administer the drugs themselves. Any doctor opposed to the practice could opt out of writing the prescription.

In recapping the long history of Oregon’s law—which went into effect in 1997—and the extensive research that’s been done over the years. An especially poignant paragraph demonstrates that even researchers opposed to the Death with Dignity Act have found concerns about the law unfounded:

Even some personally opposed to assisted suicide agree Oregon has proved many of the concerns to be overblown. “When all things are considered, the arguments in favor of continued prohibition of physician-assisted suicide are not particularly compelling,” Daniel E. Lee, an ethicist and professor at Augustana College in Rock Island, Illinois, wrote in a 2003 essay for the Hastings Center Report, a prominent ethics journal. Lee wrote that it’s perfectly appropriate to maintain moral reservations, as he does. But he said that was not enough to “stand in the way” of those who want to make a different choice.

Included in the article is the perspective of another prominent supporter of Massachusetts’ efforts, Dr. Marcia Angell, former editor of the New England Journal of Medicine and senior lecturer at the Harvard Medical School. Her father suffered greatly with incurable prostate cancer, and killed himself. Dr. Angell firmly believes her father would have wanted the option, and all terminally ill individuals should be able to decide when or whether to shorten their suffering as death draws near:

Is ingesting a lethal prescription morally distinct from removing a ventilator or a feeding tube? Terminally ill patients and their proxies make those decisions every day.

Doctors can’t always alleviate suffering for the dying, she says, and patients should have the option to end it themselves. That, she argues, is consistent with the greatest obligation of doctors—to care for people as best they can, in accordance with their wishes.

Besides, Angell argues, top-flight end-of-life care and the choice of taking a lethal drug can coexist. “Good comfort care and the availability of physician-assisted suicide are no more mutually exclusive than good cardiologic care and the availability of heart transplantation,” Angell wrote in a 1997 Journal editorial. In fact, studies suggest that Oregon’s Death with Dignity Act has only improved end-of-life care in the state.

Heather Clish, drawing from her experience with her father’s peaceful death explained why this should be an option in every state:

This is not a choice that is right for everybody. But for each of the people who have chosen it, no matter how small the number, it is of immeasurable value.

Read the full article on the Boston Globe Magazine’s website, and if you’d like to learn more about how you can help, visit Dignity2012.org.

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Momentum in Montpelier for Death with Dignity Bill

Dick Walters, photo by A. Redlich
Dick Walters, photo by A. Redlich

Dick Walters is the president of Patient Choices at End of Life Vermont. The article below is his reflection on the 2011-2012 legislative session which came to a close on Saturday, May 5th.

The majority of Vermonters support the Death with Dignity bill. They can be proud of the progress made in the 2011-2012 legislative session toward enactment of this civil right. The issue has gained real momentum in the state capital.

The Death with Dignity bill would give terminally ill patients with fewer than six months to live the option—the choice—to request medication that they would self-administer as a way to control the timing and manner of their death.

The recent death of Vermont Republican Congressman Richard Mallary demonstrated the real need for the bill. Congressman Mallary was a well-respected leader in our state, and for years he called for passage of this bill—even appearing at a press conference at the beginning of this biennium. Unfortunately, the bill was not passed before his terminal illness overcame him. The revelation that he took his own life without the benefit of the peaceful approach allowed by the bill reminded all of us why we are fighting for this change.

The progress made and momentum for passage is clear.

Governor Peter Shumlin is a vocal champion for the bill’s passage.

Speaker of the House Shap Smith, the most powerful legislator in Montpelier, supports the measure. He, this year, stated confidently that the House stood ready to pass the bill if it passed the Senate.

Citizen activism supporting the bill this year reached an incredible level. The 2-1 public support demonstrated in poll after poll came through in the thousands of phone calls and emails that poured into the statehouse urging passage.

Senate supporters showed that they are willing to fight for enactment of this important civil right. Despite the bill being hampered by procedural issues in the Statehouse, the Chair of the Senate Health Committee, Claire Ayer, showed real leadership by helping the issue break through the wrangling so it could be aired on the Senate floor.

This year’s Senate floor debate helped publicly discredit a number of the false claims made against the bill. The fourteen-year track record of the Oregon Death with Dignity law and the law’s success in Washington state came through in the debate as a sound and responsible foundation for Vermont to act upon.

The Senate floor action this year wasn’t on the merits of the bill so it doesn’t accurately reflect the Senators’ positions on the bill. The spirited two-hour discussion of the issue there this winter ended with a procedural vote that precluded a vote on the bill itself. WCAX-TV noted, “That 18-11 [vote] doesn’t necessarily indicate how the Senate stands on the issue…Several senators made a point Thursday to say this vote is about the rules and following the process. They were very specific about that.”

Change can be difficult, but lawmakers will find a way to pass a bill favored by most Vermonters. Our state’s history shows that Vermont has an instinct to lead in matters of civil rights. We believe we are well on the way to achieve this important step.

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Washington 2011 Death with Dignity Report Attracts Little Media Attention

Robb Miller of Compassion & Choices of Washington
Robb Miller of Compassion & Choices of Washington

Robb Miller has been the Executive Director of Compassion & Choices of Washington—an affiliate of Compassion & Choices—since 2000. He was also one of the leaders of the coalition that passed Initiative 1000, the Washington Death with Dignity Act, with nearly 60% of the vote in 2008.

When the Washington Department of Health issued its third annual report on the Washington State Death with Dignity Act in early May, there was little interest from the media and no good news for opponents of patient autonomy at the end-of-life.

The lack of interest from the media tells us there was nothing sensational and no controversies to report. On the other hand, less media coverage means less awareness about the law.

Only 16 more people received prescriptions for life-ending medication as compared to 2010, and only 10 more died after receiving prescriptions. Of the 94 individuals who died, 70 self-administered medication, and 19 didn’t—32% of patients who acquired prescriptions in 2011 elected not to take the medication. This is bad news for opponents who claimed that people who use the law would be anxious to die and would take the medication prematurely. The report indicates just the opposite.

Other claims by opponents, such as “patients wouldn’t need the option if they had good palliative (comfort) care,” or that “patients will be encouraged to use the law to save money,” have been debunked by Washington’s and Oregon’s annual reports which indicate that the vast majority of patients who use the law were enrolled on hospice at the time of death and had health insurance.

Additionally patients’ concerns about pain control or the financial implications of treatment were both at the bottom of the list of end-of-life concerns of those who died after acquiring medication. As in prior years, their major concerns were loss of autonomy and dignity, and the loss of ability to participate in activities that make life enjoyable.

Prescriptions were written by 80 different physicians in 2011 (up from 68 in 2010) and dispensed by 46 different pharmacies. Participating physicians wrote an average of 1.3 prescriptions in 2011, and pharmacies filled an average of 2.2 prescriptions. This contrasts sharply with claims by opponents that only a few physicians would help the majority of patients who used the law.

An issue not fully addressed by the report is the difficulty that some patients face finding participating physicians in certain regions of the state. While considerable support for the law exists throughout Washington (the ballot measure received majority support in 30 of 39 counties), the 2011 report indicates only five out of 94 patients who died after acquiring—but not necessarily using—life-ending medication lived in Central and Eastern Washington.

Another problem is medical providers putting their values before those of their patients, i.e., practicing organization-centered care rather than patient-centered care. Although the Death with Dignity Act permits medical providers to decline to participate, participation is defined in law as performing the duties of a participating physician, pharmacist, or psychiatric/psychological evaluation provider. Participation does not include providing information about the Death with Dignity Act or referring patients to other physicians or organizations, such as Compassion & Choices of Washington, who will.

Nevertheless, some religiously affiliated providers, such as Providence Hospice of Seattle, a Catholic health care provider, have gone so far as to adopt “gag rules” that expressly prohibit its nurses, social workers, and other staff from discussing Death with Dignity or making referrals. Because a key component of hospice philosophy is patient autonomy, these kinds of policies are antithetical to the practice of hospice. They also violate informed consent, one of the most important principles in medicine.

One of the items the report doesn’t directly address is the peace of mind and comfort the law provides. Because most of the patients who use the law are clients of Compassion & Choices of Washington and work with our client support volunteers, we believe the law is a form of palliative care. Our clients frequently say the peace of mind and control they gain makes it easier to live out their remaining days, or once they’ve acquired the medication, they can “start living again.”

Finally, a major benefit of the Death with Dignity Act is that it allows patients to die at home in familiar surroundings surrounded by their loved ones. 93% of patients who self-administered life-ending medication died at home, most often with two Compassion & Choices of Washington client support volunteers present to support the patient and family through the process.

Like the 2009 and 2010 annual reports, the 2011 report confirms the law is safe and working as intended with no unintended consequences.

Compassion & Choices of Washington stewards, protects, and upholds Washington’s Death with Dignity Act and provides free counseling services to incurably and terminally ill patients statewide. Compassion & Choices of Washington also provides information and medical expertise to participating physicians and other medical providers. All services are free of charge, and confidentiality is strictly protected. For more information: 206.256.1636, 877.222.2816 toll free, info@CompassionWA.org, or www.CompassionWA.org.

The Washington State Department of Health’s 2011 Report on the Death with Dignity Act is available on the Washington Department of Heath website.

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Marian Spadone: Introducing the ‘Death Lady’

Marian Spadone is on a mission to help people explore death in more open and comfortable ways. In her business, A Fine Farewell, she makes customized burial shrouds and offers workshops that explore grief and ignite conversations about dying. Lately, Marian’s been winning awards with her lively lectures that raise awareness for home funerals, green burial, and creative ceremonies that help us shift our views on death… and come to grips with our inevitable journey to the other side. More about Marian @ afinefarewell.com Reveal What’s Real with Erin Donley: revealwhatsreal.com