True Dignity Vermont

There are still more legislators in this world than not who refuse to rush in where angels fear to tread.

http://alexschadenberg.blogspot.ca/2015/05/assisted-suicide-bill-defeated-in.html

Today, Governor Peter Shumlin signed S. 108 into law, on the second anniversary of the implementation of Act 39, Vermont’s law legalizing physician-assisted suicide.  That he did so was, sadly,  no surprise.

In a news media release, the Vermont Alliance for Ethical Healthcare (VAEH) had this to say:

S. 108 makes a pretense of keeping assisted suicide safeguards and protections from expiring when in reality any meaningful provisions were stripped out of the original legislation in a rush to passage in the final days of the 2013 legislative session.   

The Vermont Department of Health has no information about how the law is actually working.  Harry Chen testified, that beyond the number of prescriptions written, “any other information in terms of how many people took it, how many people were prescribed is really anecdotal and could certainly not be reported as true from my perspective.”  (Testimony on S. 108 before the Senate Health and Welfare Committee, 2/18/15.)

After relating that a resident of a local care home, who was not terminally-ill, had been approached about assisted suicide over a dozen times in one year, it became clear to Rep. Anne Donahue of Northfield that pro-assisted suicide organizations in the State are aggressively promoting that health care workers have a legal obligation to inform patients about assisted suicide, even if their patients do not inquire about it.

“It is a myth that doctors and other providers do not have to participate if they do not want to. And it is a myth that patients are not being pressured to consider using a prescription,” Rep. Anne Donahue said during floor debate on S. 108. 

“It was irresponsible two years ago when lawmakers passed this dangerous and poorly crafted law,” said Edward Mahoney, President of the Vermont Alliance for Ethical Healthcare, “and it is even more irresponsible for those same lawmakers to pretend that Vermonters are better protected by passage of S. 108.”   

“As we predicted in 2013, the so-called “choice to die” has turned into “pressure to die,” Mahoney said. “And, in the concept of voluntary participation on the part of patients and health care providers has fallen by the wayside.”

True Dignity will continue to maintain the abuse hotline that we established in 2013 for Vermonters who wish to report situations of abuse and coercion. The number to call is 1-855-STP-KILL (1-855-787-5455 )

At age 95, my grandmother was asked how it felt to be so close to the end of life, and if she had any deep thoughts to share.   She thought for a moment and then replied brightly, “I think you’re alive until you’re dead.”

What a simple but profound thought.  It may actually turn out to be the basis of a life-saving strategy for frail elderly people in Vermont who wish to die naturally, but, because of Act 39, can no longer rely on the protection of the law to let them do so.

Modern theories about death and dying propose that we carefully plan for our deaths. It makes sense to designate who will make your health care decisions if you are unable to do so. Practical plans about where you want to live as you age and how you will pay for it and what you will do if you need help with daily tasks are important at any stage of life, but particularly at twilight, and especially if you do not have unlimited financial resources, or a spouse or children on whom you can rely to care for you.

My mother passed away in her home at age 90 after six months in hospice care in a State which still protects its citizens from physician assisted suicide. But even there, we experienced a discomfiting adherence to a “you are dying” attitude that was not well received by my mother.   Each week, the hospice nurse arrived with her laptop and list of questions to review Mom’s terminal diagnosis and ask, among other things, “Have you made your funeral plans?”

Mom’s “strategy,” if you will, to deal with this, was denial, and I wouldn’t be surprised if her medical chart said just that. She really did not at any point acknowledge her terminal condition, and dismissed such questions with an offhand, “My daughter has all that information.” Just a few days before she died peacefully in her sleep (without drugs), I recall her saying she thought she was getting better. Her optimism hurt nothing and undoubtedly enhanced the quality of her last days.

Some might point out problems with such an approach. However, Mom’s strategy might be the best protection for elders in Vermont moving forward. Because of Act 39, planning for death and dying here now has to include a conversation about why you might want to consider using a lethal prescription to attempt to end your life earlier than nature intended. Act 39 specifically references the Patient’s Bill of Rights for Palliative Care and Pain Management, reiterating that patients have a right to be informed of “all available options” related to terminal care. What this means is that even clinicians who oppose Act 39 on ethical grounds are required to inform terminal patients that Act 39 is available, whether they ask about it or not.

In introducing an amendment to repeal Act 39 during last week’s House debate over S.108, Representative Anne Donahue (R-Northfield) told of a 90 year old woman in a nursing home to whom she had spoken. The woman had become frustrated after being repeatedly informed by caregivers that she had the option to use Act 39 to end her life. The woman has never been diagnosed with any terminal illness, “…other than being age 90,” Donahue said.

This woman is “feisty,” and has strong family support, according to Donahue, and ultimately informed the staff of the nursing home that she did not want to hear any more about Act 39. But, asked Donahue, “What if she wasn’t surrounded by loving family? What if instead she even knew – or perceived – that her family felt she was a burden?”

A person in that situation might well feel pressure to ask for a lethal prescription.

Health care workers have been trained that “talking about dying” is an essential part of caring for patients near the end of life. The idea that we as a culture need not be afraid of death (which comes to all of us eventually) and that talking frankly about mortality will make planning for the practical realities related to dying less daunting, is reasonable. But now that we have introduced assisted suicide into the palette of “care options” here in Vermont, we might want to rethink how far we’ve let the pendulum swing. For an elderly or disabled person with even a potentially terminal condition, the seemingly endless parade of reminders that “you are dying”, followed up by, “you have the option to end this with a lethal prescription,” could make even the most determinedly cheerful person wish to die.

Until we can repeal this horrible law, it is more important than ever for Vermonters to complete an advance directive (and use a good one that reflects your ethics) or, at the very least, assign a trusted loved one to make your medical decisions if you become unable to do so.

After that, you may want to choose my mother’s approach to her terminal diagnosis, and feign ignorance.

You’re alive until you’re dead.

Senate Bill 108 was approved Thursday by a narrow majority of representatives in the Vermont House, who offered little justification for their refusal to consider several proposed amendments that called for adding safeguards that might have helped prevent abuse and coercion of vulnerable Vermonters under Act 39.

A strong minority bipartisan coalition of the same legislators who lost a bid to fully repeal Act 39 the day before, continued their fight by proposing amendments to add protections to the bill and to ask for more data to help evaluate how the law is working. Among those sponsoring amendments Thursday were Representatives Janssen Willhoit (R-St. Johnsbury), Mark Higley (R-Lowell), Anne Donahue (R-Northfield), Lynn Dickinson (R-St. Albans Town), and Corey Parent (R-St. Albans City).

Many more spoke articulately and passionately in support of these amendments, and for the right to consider them.

Proponents of Act 39 offered little defense of their position and simply relied on their majority status to preserve S.108 in its nearly-original form, turning a deaf ear to compelling arguments for restoring the very same protections they approved in the original bill that led to Act 39 in 2013. That bill was stripped down in a last-minute deal among lawmakers hell bent on legalizing physician assisted suicide.

Two amendments were ruled not-germane by Speaker of the House Shap Smith; motions made to allow the body to vote on them as not-germane were predictably defeated. After one such defeat, Rep. Donahue said, “Refusing to consider this amendment is a blow to reconsideration of deep flaws in what this law purports to protect.”

Her explanation was followed by one from Rep. Doug Gage (R-Rutland) who said, “Mr. Speaker, there are allegations of known abuse of elders within this legislation. Don’t we owe it to our elderly to legislate a fix to this kind of abuse?”

Freshman Representative Corey Parent offered an amendment that would have called for more comprehensive data collection and a consideration of repeal of Act 39, pending legislative review, in 2018. He made a strong case for why such data is essential to responsibly studying Act 39.

Rep. Donahue spoke in support of the amendment, saying that if Vermont is, in fact, a “laboratory” for aid-in-dying laws, as asserted by the Vermont Ethics Network in some of their printed literature, then the Legislature needs to approach Act 39 “like good scientists,” collecting data to test the hypothesis that “Act 39 is working” or not.

A prepared list of challenge questions was read by Rep. John Bartholomew (D-Windsor), who seemed to be the assigned hatchet man for Act 39 proponents throughout Thursday’s debate. Most of his questions suggested that costs associated with data collection and creating rules would be burdensome to the State, making one wonder whether he felt that protecting human lives was too cost-ineffective to be viable.

When the data-collection amendment failed, a frustrated Rep. Paul Poirier (I-Barre) explained his vote by saying, “I voted yes for more data, but unfortunately the proponents are afraid of real data. What are they afraid of? The slippery slope is now an ice slope. Who needs good data- as it only gets in the way.”

Despite the absence any substantive defense of their refusal to consider adding safeguards to Act 39, the majority status of supporters ensured the passage of S.108, which did nothing more than repeal the sunset provision Act 39, keeping in place the very few safeguards that survived the hatchet-job it underwent on its way to passage in 2013. These safeguards would otherwise have gone away in July 2016.

We thank all those legislators who acted so decisively in defense of all Vermonters, rather than capitulating to the privileged few who want to compel physicians to assist them in obtaining the means to kill themselves.

Details of the amendments offered and of the roll-call votes can be found in the House Journal for April 30: http://legislature.vermont.gov/assets/Documents/2016/Docs/JOURNAL/hj150430.pdf

Please take a moment to find out how your representatives voted, and be sure to thank those who supported efforts for full-scale repeal and amendments to protect the rights and safety of all Vermonters.

We will continue to fight.

Sixty Vermont Legislators who voted to repeal Act 39 today will be able to sleep knowing they did the right thing to protect vulnerable Vermonters. Rep. Paul Poirier (I-Barre) co-sponsor of the amendment to repeal Act 39, made an impassioned plea on behalf of disabled Vermonters, noting the uniform opposition of the disability community to Act 39. He reminded his fellow legislators of their responsibility to prevent abuse, saying, “We are the lawmakers in Vermont! It is our responsibility (to protect the vulnerable).”

Unfortunately, 83 legislators turned a deaf ear to Poirier’s arguments and others presented by numerous legislators who spoke in favor of a wholesale repeal of Act 39. Amendment co-sponsor Anne Donahue (R-Northfield) stated that “Abuse is happening.” She cited a case she is personally familiar with in which a 90-year-old woman who does not have a terminal diagnosis has been pressured by caregivers to use Act 39 to end her life.

Others described the numerous deficiencies, dangers and unknowns related to Act 39.

Perhaps most compelling were personal stories from legislators who shared their own experiences with terminal diagnoses. Rodney Graham (R-Williamstown) stunned listeners with his revelation that, “Had this law been in place when I received my diagnosis, I would have asked for the drugs, so I am very thankful it was not law then.” He said his prognosis was wrong and his cancer has been managed with surgery and drugs. He emotionally expressed gratitude that he has lived to see his daughter graduate from nursing school, grandchildren be born, and other important family milestones. He urged his fellow legislators to vote for the amendment to repeal Act 39.

After the vote defeating the amendment to repeal, Rep. Corey Parent (R-St. Albans) noted, “I don’t understand how anyone could have voted not to repeal after hearing that story.”

Neither do we.

The House took a voice vote to approve S.108, which proposes to repeal the “sunset” in Act 39 and retain its minimal safeguards, and will continue debate tomorrow, after which a final vote is expected.

To view the roll call: http://legislature.vermont.gov/assets/Documents/2016/Docs/JOURNAL/hj150429.pdf

Scroll to page 4. A “yes” vote is a vote for full Repeal of Act 39; a “no” is a vote to keep this dangerous and flawed law in place.