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

When It’s a Matter of Days, Not Months

One of the more confounding reasons cited by opponents of MAID is the notion, that the timeline called for under the statutory enactments that two doctors believe the applicant is likely to pass within six months due to a terminal condition, is at best an unreliable, if not impossible guesstimate.  However, the statistics belie that incredulity, as the overwhelming number of individuals who are given six months by the best estimates of modern medicine do in fact unfortunately die more or less as predicted.

However, MAID is not just a recourse for those who do not want to spend half a year suffering, agonizing, bedridden, and deprived of life’s blessings.  Sometimes, it is the difference between a nightmarish last few days or hours and a peaceful, serene and even uplifting end.

Two recent articles highlight this notion.  In a recent New York Times op-ed by Karen Brown dated Jan 6, 2018 chronicling the sufferings of her father at the very end when hospice, otherwise such a stellar and indispensable addition to the End of Life options, failed leaving her in a mad scramble to get adequate pain medication.  We all need a fail-safe mechanism and having the ability to control one’s final destiny can indeed be the only thing separating us from a gentle passing or a horror show of terminal agony.  Who would want the last memories one leaves with loved ones to be of utter agony and screams.  Who would want their loved one to pass under such horrid circumstances.

https://www.nytimes.com/2018/01/06/opinion/sunday/hospice-good-death.html

Another recent example of when MAID can provide solace over a mere few days instead of months was brought to light by the tragic story of a 6-year old boy scratched by a rabid bat who was misdiagnosed until the rabies had spread into his system irreversibly and of course fatally.  If a human contracts the rabies virus and is not promptly treated, the disease will inevitably result in an excruciating death.  While MAID, where allowed by state law, is only accessible to adults, one can well imagine any number of situations where a human has but a few days at best to live and they will be nothing but delirium, agony and hell on earth.  For the patient and his/her family, MAID is a means to avoid an undesirable end in favor of a chance to pass peacefully.

https://urldefense.proofpoint.com/v2/url?u=https-3A__nypost.com_2018_01_15_6-2Dyear-2Dold-2Dboy-2Ddies-2Dof-2Drabies-2Dafter-2Dtouching-2Dbat_-3Futm-5Fcampaign-3Diosapp-26utm-5Fsource-3Dmail-5Fapp&d=DwIFaQ&c=JRU6Crajf79kKcplUJFHFfpcQ9GkS9xWLut8YRTooJY&r=NYWwqIRExyA_HyHOOJ4_UO1wQ8blO4sf1W23jTb8mNw&m=6iPYzRGx717fwvWD_33UtzCQ1d9MZGiHMT9Ua90DL_U&s=N-uBEI78ANsz-T4fgZVxkrlcH2KtLVhg6p296_IyLaQ&e=

 

We all know death is part of the human condition.  And we all know we all have a limited lease on life.  There will be times when death is a “maybe” in the near future, as when we go in for life-threatening surgery.  There will be times when death is more likely than not, when a soldier undertake a “suicide” mission at war.  And there are times when death is a near imminent certainty.  For those last few instances, MAID is a far better End of Life option than suffering pointlessly.

MAID is not the same as Suicide

Opponents of MAID are quick to mischaracterize the exercise as Physician Assisted Suicide.  It serves their narrative that a terminal patient seeking release from suffering, lack of autonomy, utter helplessness and futility in the face of the medically proclaimed inevitable should be viewed in the same prism as a vigorous young individual in excellent health who succumbs to a moment’s despair over a temporary setback.  Society has long held legal and ethical condemnations of suicide, enshrined in a Judeo-Christian tradition which views life as a gift from God, which only He can take back.

And yet society has evolved since those hoary days when a suicide brought such shame to a household, that a religious burial was impossible, life insurance policies were invalidated, and property of the decedent escheated to the state.  Today, it is accepted constitutional jurisprudence that an individual has a rich to terminate life saving medical treatment by pulling the plug on machinery keeping him alive.  Today, it is common practice for physicians, in concert with the patient but sometimes on her own initiative look to relieve suffering from such a potent, if not toxic, dose of morphine that death almost inevitably ensues.  These are considered routine hospital outcomes.

Slowly, experts in the filed are fighting back at the misnomer of Physician Assisted Suicide (“PAS”) as wholly inappropriate and misleading.  The American Public Health Association last year ruled that PAS should be avoided going forward in favor of the less problematic Medical Aid in Dying or Doctor Assistance in Dying.   And just this past month, the American Associate of Suicidiolgy whose mission is to study suicide in the hopes of preventing it ruled eloquently that Suicide is not the same as Physician Aid in Dying.

Their rationale follows and is worth a few moments’ study:

http://www.suicidology.org/Portals/14/docs/Press%20Release/AAS%20PAD%20Statement%20Approved%2010.30.17%20ed%2010-30-17.pdf

 

 

Debunking the Myths of Medical Aid in Dying

Among the many hoary predictions of MAID opponents is the notion that enacting Death with Dignity legislation will usher in a culture of suicide.  During the debate in the late 1990s in Oregon and Washington, one often read dire predictions that passage of the legislation would make those states suicide meccas and that soon the local medical communities would be swamped by folks availing themselves.  One prognosticator suggested that as many as 10% of all deaths in Oregon would be under the framework of the Oregon Death with Dignity Act.

Twenty years on, the data reveal outcomes vastly different.  Death with Dignity is very rarely used– in Oregon of the 25,000 annual deaths by cancer, for example, less than 200 individuals use the statute, or less than 1%.  And of course this exclude the thousands of others who die of terminal illnesses in the calculation.

The reality is that Death with Dignity is working just as its proponents suggested:  it is very rarely used, few doctors are called upon to participate, even fewer end up writing prescriptions, it has not engendered an increase in suicide among physically healthy individuals; it has increased recourse to hospice and palliative care; it has helped to take End of Life decision-making out of the closet and empowered people to exercise a modicum of autonomy when a disease is otherwise limiting outcomes.

A recent article in JAMA and UPenn Medical School make clear that Death with Dignity legislation does not lead to the nefarious consequences which its detractors predict, even today.

Read here

 

A few words from our M.D. Board Members

Our two Board members have recently been published arguing the logic and compassion underpinning Death with Dignity legislation, such as HB789.  Dr William Hazzard had his Letter to the Editor of the Winston Salem Journal published in early June in which he discusses the case of his sister Ra, who used the law in Oregon because of its unavailability here in NC.

Dr Hazzard’s op-ed

And Dr Haider Warraich, on the occasion of the British edition of his book Modern Death, published an excerpt in the Guardian detailing the travails of Karen Ann Quinlan who was perhaps the first public face of a terminal patient seeking redress through a compassionate death.

Dr. Warraich’s Guardian excerpt here

California’ End of Life Option Act: One Year In

On June 9, 2016 California’s version of Death with Dignity legislation (a/k/a Medical Aid in Dying), the End of Life Option Act, went into effect, following a contorted enactment over the course of several years.  Thanks in large part to the moving testimonial of 29-year-old Brittany Maynard to the legislature and to Jesuit Governor Jerry Brown, California became the 5th state (after Oregon, Washington, Vermont and Montana) to adopt a law allowing an individual to choose the time and manner of his/her death once diagnosed with a terminal illness, without the risk of criminal prosecution or civil judgment against the prescribing physician or pharmacist.

One noteworthy observation:  in its first year, California recorded 258 instances where the process was initiated.  There were 191 lethal prescriptions filled but only 111 people decided to ingest the medicine.  That suggests that as many as 42% of those who went through the application process to the extent of having the prescription filled, used the medicine not to end life, but to provide a sense of autonomy and control at a time when a disease has robbed them of almost everything which makes life worthwhile: hope and self-direction.

We shall see if California’s initial experience bears itself out going forward.  But after 20 years of data in Oregon, we can suspect this first year is not an aberration.  In Oregon, 38% of filled prescriptions under Oregon’s Death with Dignity Law are not used.  Again, individuals find comfort knowing that at hand they have a medical dosage which will quickly and painlessly accelerate the end if the pain or hopelessness becomes overwhelming.  Until that time, there is a sense of self control which in itself is a comfort.

You may wonder why this is worth contemplating.  In the 1997 companion cases of Washington v. Glucksberg, 521 US 702 (1997)  and Vacco v Quill, 521 US 793 (1997), Chief Justice Rehnquist, writing for a unanimous Supreme Court, sought to differentiate the withholding of medical treatment from the dispensing of a lethal dose of medicine.  Without the benefit of any data upon which to make an assessment, the Chief Justice wrote that a physician who withdraws care pursuant to an express patient demand “purposefully intends, or may so intend, only to respect his patients’s wishes”.  Whereas a doctor assisting suicide “must necessarily and indubitably intend primarily that the patient be made dead.”

This clearly is incorrect.  In the first instance in both cases, the doctor is merely “primarily respecting his patient’s wishes”.  Surely in both cases, the doctor would much prefer the patient be cured and healthy.  But the doctor is asked to provide a service: withholding medicine, “pulling the plug”, writing the lethal prescription.  Will the ultimate consequence be an acceleration of the inevitable death:  yes, in general.  But not all plugs pulled result in immediate death, not all withheld medicine will immediately kill the patient, and now we know, not all written lethal prescriptions will be taken.

The doctor writing a prescription under Oregon and California or any other state’s Death with Dignity laws can well anticipate that over a third, maybe 40% of his or her patients, will never take the medicine.  They will keep the medicine on their nightstand as a symbol of their last act of decision-making and destiny-determination.  At a time of hopelessness and despair, allowing a dying patient a modicum of autonomy and control might prove a liberating experience.

Justice Rehnquist pronouncement in Vacco v Quill has been proven in error.  It is important to highlight his mistake because Justice Gorsuch in his eloquent book against “Assisted Suicide” cites Justice Rehnquist approvingly.   Glucksberg and Quill are both ripe for reversal, given the evolution of the Death with Dignity movement across the country.  We now have further evidence contradicting the AMA’s refrain in opposition.

For more on the one-year mark in California Click here

HB789: All Hands On Deck

With the introduction of HB 789 on April 11,  Rep Pricey Harrison and her colleagues Hon Fisher, Hon Meyer and Hon Insko, have done their part to advance the legislation.  The ball is now in our courts– the people, to make clear to our various State Reps across the State, that this legislation is needed and important for the long term welfare of North Carolinians.  Anyone who has been through the calvary of a protracted and painful End of Life experience of a loved one does not want to witness a repeat performance, and very few people don’t want Medical Aid in Dying at least as one more option.

HB 789 will go nowhere, UNLESS some Republican legislators come out in favor, or at least request that the bill get a hearing.

So for all supporters, now is the time to go to work.  Use any contact you have with a State Rep, especially if he or she is from the GOP, to  please urge support of HB 789, not tomorrow or next year, but NOW.

HB789, The End of Life Option Act, introduced!

North Carolina has now become the latest state considering enactment of Death with Dignity legislation.  On April 11, 2017, four State Representatives, Harrison (D-57), Fisher (D-114), Meyer (D-50) and Insko (D-56), introduced HB789, almost exactly two years after the introduction of HB611.

Dying Right NC worked closely with Representative Harrison, whose passionate advocacy for an enlightened approach to End of Life choices is inspirational.  This bill introduces several safeguards intended to address concerns expressed by the law’s opponents.

For example the bill requires both witnesses at the time a written request for an Aid in Dying drug is made, must be independent and at least one must be a resident of NC, as must be the case for the patient-applicant.  The bill also criminalizes any actions interfering with an individual’s decision to ingest an Aid in Dying drug, such as by destroying the prescription or the drug itself.  It introduces a new voluntary role of Attending Witness to be nominated by the patient applicant to be present at the time of ingestion to make sure there is not coercion or duress.

It is not clear how far HB789 will go during this legislative session.  No Death with Dignity law has been enacted in a southern, Bible belt red state, but we are confident that the majority of North Carolinians favor this bill and we will undertake to make sure their legislators are aware of their preference.

The text of the bill is provided here. Continue reading “HB789, The End of Life Option Act, introduced!”