Choosing one’s exit

Thanksgiving is hardly the time to think of shaking off these mortal coils; it’s a time for celebrating family and friends over a copious meal punctuated by good conversation and memorable stories of the year past.  Yet of course, death and dying are not respectful of season or holiday or the conventions of polite society.  Planning one’s exit is never too soon and frequently too late.

For some the question is one of pure selfishness:  what do you want for yourself?  Do you want above all to prolong to the last possible breath the final departure, no matter the impositions and burdens and financial implications?  Or do you want to avoid suffering, futile efforts and the degradations implicit in incontinence, immobility, loss of autonomy, paralysis, mental degradation, and physical dependency?  Each of us has our lodestar as to what is desired at the end of life.

A recent article in WaPo highlights the dilemma faced by those approaching death and understanding the inevitable decline which lies ahead.  It is not pleasant reading, but it is reality!

Suicide: Desperate, Hostile, Tragic… but mostly a Bloody Mess

A recent WaPo article by the daughter of a suicide highlights inadvertently the vital differences between suicide and Medical Aid in Dying. Its detractors persist in defying logic and decency in using the hoary, rejected terminology of Physician Assisted Suicide to imply that what befell Roxeanne Robert’s father some 20 years ago is analogous to what occurs in the states where MAID is perfectly legal.  And they are clearly polar opposites.

Medical Aid in Dying is neither desperate, nor hostile… perhaps tragic… but never a bloody mess.  Suicide though usually is; it is very often impetuous, brought about by irrational ideations, false impressions, or wildly uncontrolled emotions.  It almost always entails some horribly violent end, whether through gunshot, jumping off buildings or in front of moving vehicles, or electrocution.  It is never pleasant for the loved one(s) who come upon the remains of their deceased family member.

By contrast, MAID is the result of a rational analysis in conjunction with trained professionals, often in consultation with one’s family members who often accompany their loved one at his death bedside.  It is almost inevitably a peaceful, loving end, in a place and a time of one’s choosing, surrounded by love and empathy.  There is never bloodshed involved.

When MAID opponents harp on the term Physician Assisted Suicide, which almost every serious medical practitioner rejects as a misnomer, instead of the generally accepted term MAID, they are trying to confuse the issue and assimilate a national tragedy of an increase in suicide rates with society’s interest in reversing this trend.  They syllogism runs as follows “Suicide is a tragedy which we must discourage… and PAS is a type of licensed suicide… ergo, we must oppose PAS as encouraging suicide.”

The reality is MAID has nothing to do with suicide.  The situation of those who avail themselves of the practice is the polar opposite of those who commit self-murder.  The latter have an otherwise indeterminate life ahead of them; they inevitably are suffering from a mental delusion or heightened emotional state; they are often reacting impulsively to a temporary disappointment; they otherwise have numerous options including medical treatment for depression.

Those who use MAID have no illusions: they have been told they will die within 6 months, no matter what they do.  They know their quality of life is severely compromised and essentially hopeless.  They have been told that they can remain in hospice or embrace palliative care, and still they have weighed these imponderables and made a decision which few can question as being irrational.

So to those who enjoy bungling the English language and grasp on to dated terminology, I would note that once upon a time American psychiatrists deemed homosexuality a deviance if not a diseased syndrome, but they have moved on to a an illuminated understanding.  It’s about time, my linguistic troglodytes, that you too accepted that PAS is an inappropriate, medically incorrect and deeply offensive term.

Right to Try vs Right to Die

On May 30, 2018, President Trump whose newly-found pro-life bona fides can no longer be in doubt, signed the Right to Try Act of 2017, which amends Federal law to allow certain FDA-unapproved, still experimental drugs to be administered to terminally ill patients who have otherwise exhausted all approved treatment options.  Eligible drugs must nevertheless have undergone FDA phase I (safety) testing.  Among other aspects of the legislation, the law limits the liability of manufacturers, prescribers or dispenses which provide or decline to provide an eligible experimental drug.

President Trump cogently explained: “People who are terminally ill should not have to go from country to country to seek a cure.  I’d see people-friends of mine, and other people I’dread about, where they’d travel all over the world looking for a cure.  And we have the best medical people in the world.”

The analogy between Right to Try and Right to Die should be lost on no one.  When people enter a terminal phase, society should do all that is feasible to assist those in greatest need.  If the individual wishes to try an experimental drug which may give hope if not a cure, should we really allow bureaucratic red tape condemn that person to an early death.  Likewise, if a terminal person has concluded that the suffering and hopelessness are no longer worth the struggle, shouldn’t we provide redress, in whatever form it might take?

President Trump bemoaned the fact that our laws forced terminal patients to get up and seek treatment in another country.  Today in America, a terminal patient who seeks a peaceful end is equally forced to seek MAID in one of the 8 (well, for the time being 7 during prosecution of the appeal of California’s temporary limbo) jurisdictions where the procedure is legal.

What we are seeing is a general movement to disintermediate those hierarchical patriarchial forces which insist that they know better what is good for a patient, whether it is the Catholic Church, the AMA, or the FDA.  Slowly, the revolution of patient autonomy is being accepted and the individual is allowed to decide his or her future.

Setback in California

A Riverside County (California) Superior Court Judge, Daniel Ottolia, entered an order on Friday, May 25, in Ahn v Hestrin, holding as invalid California’s End of Life Option Act, signed into law by Governor Jerry Brown in June 2016.  The order effectively brings to a halt a law which has brought relief to some 500 Californians facing an end of life dilemma, who would prefer to hasten an imminent death due to an incurable terminal illness in the comfort of their home or other preferred place, rather than suffer pointlessly.

The Superior Court decision is being appealed by California’s Attorney General Xavier Becerro who was unable to stay the application of Judge Ottolia’s ruling.

The plaintiffs, several religiously-motivated physicians, brought the suit almost immediately after the End of Life Option Act went into effect in June 2016.  Judge Ottolia had initially refused to stay implementation of the act pending resolution of the plaintiffs’ claims.

It should be noted that the plaintiffs are alleging that the End of Life Option Act, which was introduced and debated during an extraordinary legislative session called for by Governor Brown to discuss “access to healthcare services”, does not constitute a matter of healthcare policy.  This argument seems counterintuitive if not nonsensical since MAID is by its very nature an issue of access to a fundamental healthcare practice, and since Governor Brown, who called the extraordinary session, supported and signed the legislation.  Nevertheless the plaintiffs chose their forum wisely, targeting a judge with known sympathies.

It is unlikely that Judge Ottolia’s ruling will stand the scrutiny of an appeal to the California Supreme Court, but for the time being, it is a setback and a bitter disappointment to some of the most vulnerable and suffering Californians.



Successful Charlotte Conference Highlights Need for MAID in NC

More than 80 interested guests joined us at our first conference at Charlotte’s UNC-C Center City on May 9, 2018, entitled “Expanding Medical Aid in Dying in North Carolina: Choices and Challenges”.  Keynote addresses by Barbara Mancini, whose heart-rending story of her politically-motivated prosecution for an innocent gesture of helping her dying 93-year old father take his pain medication, and Atty Kathryn Tucker, Executive Director of the California-based End of Life Liberty Project and a veteran of court battles seeking recognition of MAID, set the tone and clarified both the need for legislation and the uphill battle to see enactment in NC.   A panel of specialists and experts offered views on alternatives to MAID, such as VSED, self-exile to a state where the practice is honored, hospice and palliative care or, as a desperate measure, self-exit.

Atty Tucker elaborated on a different approach to MAID, now exercised in Montana, where doctors practice a Standard of Care.  Ms Tucker explained that historically and culturally, medical procedures are defined and policed by physicians applying a rigorous best practice, learning from each other through peer-reviewed journals, continuing education seminars, medical school instruction, etc.  In a state like NC where there is no statutory language prohibiting or endorsing MAID, physicians should logically be free to institute MAID as an offered procedure subject to using what the medical community deems to be a Best Practice.

A panel of legal, ethical, medical and legislative experts were invited to comment on Ms Tucker’s proposal, pointing out the risks and difficulties of proceeding without a clear legislative imprimatur.

Feedback from the audience was overwhelmingly positive, with the one consistent suggestion being to expand the timeframe for Q&A, even if it meant lengthening the conference by another hour or so.

DRNC wishes to thank all the presenters and panelists who made the conference a success.  Charlotte Conference Materials

A Victory in Hawaii

Yesterday, with the signature of Governor David Ice on the Our Care, Our Choice Act, the Aloha State became the 8th US jurisdiction to authorize Medical Aid in Dying.   After years of starts and stops, hopeful moves forward, followed by crushing disappointments, the voices of reason and compassion prevailed over fear and demagoguery.  And how quickly it came to pass in 2018.  A Hawaii House committee passed a bill on February 28, by a vote 4-1, and then the full House on March 6 overwhelmingly 39-12.  The jurisdictional Senate cCommittee passed the bill unanimously, followed by the full Senate 23-2.  Before signing the bill on April 5, Governor Ige stated

“Mentally competent, terminally ill people who are in pain and who are suffering should be even the choice to end their lives with grace, dignity and peace.”

A more complete description of the path that Hawaii’s Our Care, Our Choice Act took before enactment is provided here by Death with



Orange County Dems Endorse MAID

At the annual Democratic Party convention of the Orange County Democrats, a resolution calling for enactment of MAID in North Carolina introduced by DRNC Executive Director Edmund Tiryakian, who is also a precinct chairman, was unanimously approved.  In past years, when a similar resolution was proposed, there were several opponents who made their case.  Yesterday, there was no opposition and several delegates spoke of their own very personal End of Life experiences with loved ones in emphasizing the need for this law.  The resolution will next be sent to the District Convention and if approved to the State party convention.OCDP2018

DRNC announces major conference on MAID: May 9, 2018 in Charlotte

DRNC is sponsoring an important conference on the future of MAID in NC.  Our  keynote speakers are Barbara Mancini, whose harrowing tale of being arrested in PA while trying to help her bedridden dying father shocked audiences when she was interviewed on 60 Minutes, and Atty Kathryn Tucker, the nation’s premier litigator of MAID cases. This conference, to be held at Center City on the downtown Charlotte campus of UNC-C, will bring together experts who will lay out the difficulties and challenges in trying to get North Carolina to joint the nation’s 6 other jurisdictions which have seen the wisdom of enacting legislation allowing a terminally ill, competent adult to get a prescription filled from a participating doctor which can be taken then at a time and place of his/her choosing, rather than dying in the cold and antiseptic environment of a hospital or nursing home.

Admission is free but the best seats are limited so please register early by calling (919) 452-9092 or (704) 775-2052.  Donations to the cause are greatly appreciated to help us cover the costs of the conference.

When Words Matter

A recent NPR radio summary of an angry protest in Belgium over a controversial euthanasia incident likely disturbed any number of unwitting US listeners.  The broadcast explained that a Belgian doctor had just resigned in anger and disgust from the country’s euthanasia commission after a dementia patient who never specifically asked to die was euthanized at the family’s request.  Understandably a number of other Belgian doctors were asking for an inquiry into the circumstances and whether protocols were followed.

What would have confused and upset US listeners was the radio announcer’s assimilation of Belgium’s “physician-assisted suicide” laws with the existence in several states in America of nominally similar, or at least similarly-sounding laws.  The implication was that people living in Oregon, Washington, California, Colorado, Vermont, the District of Columbia and any other jurisdiction so foolhardy as to go Belgium’s route could find themselves euthanized against their wishes!!!

And yet nothing could be further from reality.  The NPR broadcast did quite a disservice to those in America who have made clear that in no state is euthanasia legal or even seriously contemplated.  Unlike the situation in Belgium (and the Netherlands and Canada as examples), in the US only self-administration of an Aid-in-Dying drug is authorized in those few jurisdictions which have legalized Death with Dignity laws.  A doctor in California or Oregon who administers a lethal drug to a willing patient is still guilty of murder and could be prosecuted as such.

Belgian (and European) cultural attitudes towards End of Life are vastly different than those in America.  Patients in those countries overwhelmingly ask their doctors to administer lethal doses when they are confronting a terminal, incurable and intolerable illness.  In America, where self-reliance is a touchstone, we do not want to empower doctors to have that power.

Opponents of MAID use Belgium as the stalking horse for their slippery slope arguments.  However, they have used that argument for almost 20 years and no US state has even proposed to allow euthanasia, which is the administration by a third party of a lethal dose to a wiling patient, sometimes called mercy killing.  The two regimes, in Europe and America, are vastly different and the truth, which opponents consistently ignore, is never will the twain meet.

It is regrettable that the NPR broadcast of a tragic, but exceptional, event in Belgium, was so inarticulate as to cast confusion on a far safer, far more voluntary and far more foolproof approach in the US.

MAID moves forward in Alaska, a Red State

On January 31, 2018 to the surprise and delight of many, an Alaska House Health Committee approved 5-2 a measure to enact MAID in Alaska, HB 54.

While several other states have seen the wisdom of allowing terminally ill individuals to request medication from their physicians which would mercifully end futile suffering at a time and place of their choosing, few typically GOP-leaning states have advanced the cause.  Alaska may be the first one, if the bill survives a full vote of the House and Senate and signature by Governor Bill Walker, currently registered as an Independent.  (The last time Alaska voted Republican in a Presidential race was in 1964 for Lyndon Johnson over Barry Goldwater.

While Montana, also a Red State, allows MAID, it was due to a decision by the Montana Supreme Court, and not through legislative enactment.  Colorado, a purple state, approved MAID through voter referendum.   The other states where MAID is authorized, OR, CA, WA, VT and DC, are reliably blue.

MAID is an issue which by its very nature transcends partisanship, as cancer, stroke and other terminal diseases are color-blind.  But the perception is that MAID is somehow a “liberal” concept, as it upsets medical orthodoxy.  The truth is that many Republicans who situate themselves on the libertarian spectrum of GOP politics are favorably inclined.

Success in Alaska would go a long way to dispelling the unfortunate assumption that only in Democratic-leaning states, can MAID legislation pass.

This is the essence of Dying Right NC’s mission– to work with both Republicans and Democrats in Raleigh to make NC the first Southern, Bible-Belt state to pass the legislation.

Alaska House Health & Social Services Committee Approves Medical Aid-in-Dying Legislation