Understanding the Novelties of HB879

On April 16, 2019, the NC End of Life Option Act was introduced in the NC State House of Represnetives as HB879. Surprisingly, the bill had 2 Democratic primary sponsors (Rep Pricey Harrison and Rep Susan Fisher) and two GOP primary sponsors (Rep Jon Hardister and Rep Chuck McGrady). This is unprecedented in the history of MAID legislation, and bespeaks what everyone understands: cancer, and other terminal diseases are non partisan killers.

But aside from its unusual bipartisan backing, HB 879 introduces signficant changes from prior iterations. What are they and why are they important?:

I Terminal Comfort Care Drug— Most existing state laws on MAID refer to the prescribed medicine as an “Aid in Dying Drug”. HB879 introduces new terminology, and the obvious question is whether this is decorative semantics or something more substantial.

For some time, there has been a raging debate what to call the practice involved. In its humble beginnings during the 80s and 90s, as the Right to Die movement was just kicking in, the term of art was “Physician Assisted Suicide”, enshrining the notion that an individual who takes a prescribed lethal dose is committing suicide no less than the love-sick swain who jumps off a bridge. In time, a more elegant phrasing took hold, “Death with Dignity”, the notion being the medicine allowed someone a peaceful, dignified death not attached to tubes and catheters and kept gruesomely alive until the bitter end. That terminology gave way in recent years to the term we currently endorse of Medical Aid in Dying, or Aid in Dying or Physician Assisted Death.

Consistent in all the terms of art is the notion that the sole purpose of the prescription is to accelerate … death. And yet some 50 years of composite statistics has revealed something interesting: a not insignificant percentage of MAID applicants ( 35%) go through all the trouble of getting the prescription… and then never take it. Rather, they keep it by their bedside as insurance, as a comfort, as proof that they remain in control of their fate, no matter the indignities and suffering the fatal disease causes. In testimonial after testimonial, patients report they felt a sense of “relief”, “control”, “calm” once they had the prescription in hand. Whether they ended up needing the medicine in the end is almost secondary to the comfort they received in having it at hand.

So HB879 recognizes what has become obvious: for many but not all patients, the MAID drug facilitates the inevitable in a setting and time of the patient’s choosing. But for all patients, the MAID drug provides terminal comfort care.

II. Attending Witness HB879 introduces a new role, not present in any existing legislation: the voluntary, optional role of an Attending Witness. The Attending Witness is an individual designated by the patient at the time of making the written request. The prescribing physician asks if the patient would like to nominate someone (a family member, friend, loved one) to be present if and when the patient decides to self administer the Terminal Comfort Care drug. This attending witness would be there to help the patient in any way needed (short of administering the medicine which only the patient may do), but also to intervene in the case of a mishap, such as regurgitation. Finally, the attending witness is responsible for returning a self addressed envelope to the prescribing physician indicating when the patient took the medicine, how much he/she took and how long it took for the medicine to take effect.

The rationale for this new role is multiple: in general, we believe that people should not have to die alone, that the last journey in life warrants the company of family, friends and loved ones But there are practical considerations. People at end of life may be physically exhausted, and preparing the Terminal Comfort Care drug takes a certain energy and dexterity. Equally important, the prescribing physician has very detailed reporting requirements to the Dept of Health and Human Services. She has not only to report the number of patients for whom she wrote prescriptions, but how many actually took the medicine. There is no logical nexus after writing the prescription for the physican to know if the patient did or did not take the medicine. The Attending Witness will help in providing critical data for the physician to be able to complete all reporting requirements.

Finally the Attending Witness can insure that any unused medicine is properly disposed of, as there is obvious concern that such lethal substances not fall into the wrong hands.

III. Hospice Evaluation: Writing a MAID prescription requires a doctor to determine the patient is terminal, which means he/she has less than 6 months of life expectancy. This is the same criteria for admittance to hospice In fact, it would seem that the criteria for eligibility for MAID piggybacked off the requirements for eligibility for hospice, which traditionally requires at least two physicians to make the determination.

Statistics show that on average in all the states with MAID legally available, over 90% of MAID applicants were in fact enrolled in hospice when they made the decision to seek an alternative. Thus only a very small number of MAID applicants do not in the regular course pass through hospice before opting for MAID.

Second, we believe no one should opt for MAID out of ignorance of alternatives. Hospice remains for the overwhelming majority of end of life patients the gold standard, and with very few exceptions, patients and family are very happy with the end of life care which hospice provides. Requiring someone to at least investigate what hospice has to offer and undergo an evaluation ensures that no one will opt for MAID unaware of what hospice has to offer.

Third, undergoing a hospice evaluation requires at least one and maybe two physicians to conclude the patient is terminal. This is in turn the requisite for the MAID physician. Adding the hospice evaluation requirement up front, makes the MAID prescribing physician that much more comfortable in drawing his/her own determination of the patient’s terminal condition. We believe this in turn will make it easier to find physicians in North Carolina willing to participate in the program.

Fourth, MAID and hospice have traditionally had a mixed relationship: some from the hospice community reject the need for MAID as antithetical to what hospice can offer. The hospice community believes they can address a patient’s physical, emotional, psychological and existential needs such that the end of life need not be a horrible experience, or at least it can be made bearable.

We believe that indeed for a great majority, hospice does a wonderful job under very trying circumstances. But we maintain that for a certain minority, MAID is the preferred option and should be available. We prefer then to enlist hospice as an ally in our struggle for enactment of MAID in North Carolina by incorporating a hospice requirement in the legislative proposal.

Finally, adding a hospice evaluation requirement upfront with two physicians certifying the patient is terminal, obviates the need for a second MAID Consulting Physician. HB879 only requires the certification of the Attending Physician, with a Mental Health Care referral if necessary. All other states require the determination of an Attending and Consulting Physician. In certain parts of the state, it will be very difficult if not impossible to find two physicians participating in MAID. Hospice is far more widespread and accessible in NC.

IV. No Requirement for Consulting Practitioner: In every state which has adopted MAID legislation and in every legislative proposal across the country, an applicant for MAID must get the approval of two physicians: the Attending Physician, who writes the prescription, and the Consulting Practitioner, who confirms the diagnosis of the Attending. While that might seem like a trivial burden to someone with peak mobility, energy and access to transportation, for an individual in extremis at end of life, it can well be one more insufferable burden. Imagine as well, that the patient lives in an isolated or rural area with a dearth of physicians; then imagine that most physicians in that rural area are employed at a nearby Catholic hospital which doesn’t allow its employees to participate in MAID activities. It may well be close to impossible to find a single doctor willing to receive MAID patients, much less two.

The requirement of a Consulting Physician is to provide a safeguard for an Attending who, as all humans, might make a mistake. After all, if the Attending gets the diagnosis wrong and writes a MAID prescription, when in fact the patient was not terminal, but believed himself to be, the error could have fatal consequences. But adding an additional obstacle of finding a 2nd Consulting physician, while significantly reducing the risk of an erroneous diagnosis, significantly reduces accessibility.

HB879 proposes a new approach: by requiring the patient a priori to have undertaken a hospice evaluation, at which at least one and maybe two physicians will have met with the patient to determine hospice eligibility, including whether the patient has less than a 6 month life expectancy, by the time the patient reaches out to the Attending Physician, there has of necessity already been corroboration of the patient’s terminal status. There is an extra step on the front side of undertaking a hospice evaluation, which is of itself, a wise and prudent requirement, but than on the back end, there is one less burdensome requirement of finding a 2nd physician in the patient’s neighborhood participating in MAID.

V. 10 Day Waiting Period: The idea of a waiting period is understandable, when dealing with the finality of taking a life-ending prescription. People should reflect carefully, rationally, soberly before accessing MAID. And so the idea of a cooling off period has a certain logic behind it. But when one is dealing with a terminal illness which of necessity means an abbreviated life expectancy coupled typically with intractable pain, existential angst, and a wish to hasten the inevitable, extending the waiting period unnecessarily becomes a cruel burden. Most states have haphazardly come up with a 15 day waiting period, on the logic, that the longer the period, the more rigorous the safeguards In 2018, Hawaii did its mainland neighbors one better by tacking on another 5 days, to require applicants to wait 20 days between the time they initiated contact with a MAID physician and the time they can get the prescription filled.

Keep in mind, that there can well be many more days after the prescription is written before finding a participating pharmacy which has the required medication.

Because HB879 adds a requirement that the patient first have undergone a hospice evaluation, which means the patient is fully cognizant of their hastening and inevitable demise, the waiting period between the first call to the MAID physician and the time when the written declaration can be made is lowered to 10 days. That is more than enough nights in a row to “sleep on” the decision to make sure the desire is not a soon to be regretted impulse.

VI Felonious Interference MAID laws in the 8 jurisdictions with legislation understandably make it a felony to forge a prescription, to coerce someone into requesting a MAID prescription, or to obtain a MAID prescription under false pretenses. However, in no state is it equally a felony to interfere with a patient’s desire to apply for a MAID prescription, or to destroy the patient’s prescription or the medication.

This scenario is indeed quite plausible. A cancer-stricken elderly person requests a MAID prescription upon learning the cancer has metastasized, the chemotherapy is not working and her life expectancy is less than 6 months. She announces to her extended family her intention to take the medicine on a certain date A long estranged son suddenly repents of his tortured relationship with his mother, flies cross country to be with her, tells her he regrets the bad blood and forbids her to take the medicine. When she insists, he defiantly takes the prescription and flushes it down the toilet, believing it his right to prevent his mother from hastening her death.

No one can deny that the son acted in what he believed was the best interests of his mother and arguably out of love, if not guilt. But it is her right to decide, not his. HB879 makes clear that the act of destroying the medicine or interfering with his mother’s exercise of her right to self administer the medicine against her will constitutes every much the same felony as someone who forges a prescription.

VII “Self-Administer” vs “Ingest”–Legislation in place in 8 states makes clear the patient must ingest the medicine on their own. The direct application of the medicine by a third party constitutes an act of euthanasia, which remains illegal in every state as homicide, if not murder. However, in every state, a third party may mix the cocktail of drugs for the patient to then ingest on their own.

However, imagine a quadriplegic suffering also from a terminal disease. Such a person might not physically be capable of ingesting the medicine. HB879 addressed this scenario by requiring that the patient “self-administer” the Terminal Comfort Care drug. This would allow for example, an intravenous drip to be set up which the individual might be able to trigger through the batting of an eye or movement of the lips. It would be a cruel injustice to deny to someone paralyzed from the neck down the right to hasten a death to the same extent as an able-bodied patient.

Summary It has been 22 years since Oregon became the first state to enact MAID legislation. Since then, 8 other states have made MAID available. There are very granular data banks from these states on how MAID has been working and the data gainsay ALL of the opponents’ fears and predictions. Far from being the escape route of choice for financially indigent patients, it is almost universally accessed by people with insurance either through Medicare or private insurance, and financial worries are almost never the motivation. Rather than being a way of disposing of society’s most demographically vulnerable, such as people of color, the uneducated or the disabled, it is used almost exclusively by people with higher learning, from socially advantaged demographics. Rather than leading to an explosion of take-up, it remains rarely used, less than 0.5% of annual deaths in the states where available. In the states, where available, a much greater take-up of hospice and other End of Life alternatives is recorded, because both patient and practitioner have become better educated on how to plan one’s End of Life. And in the thousands of cases where it has abbreviated suffering and allowed people to die comforted by the familiar surroundings at home of family and friends, not one instance of coercion, mis-diagnosis, or abuse has come to light. MAID is working exactly as its proponents have said it would from the start. The opponents have been so frequently wrong-footed in their dire predictions, they have been shown for what they are : medical Luddites wishing to impose their deeply held religious views on society, against the desires of those most directly concerned.

However, state legislatures remain cowed by vested interests, whether hospice, State medical societies, or the most strident of disability rights groups, and back off when confronted with false accusations. We have data which tell us how well MAID works, and yet legislatures when they consider MAID proposals choose to model each bill on the Oregon model, which made eminent sense in 1997. HB879 is in many ways the first bill which incorporates the teaching of the data to streamline the process without sacrificing necessary safeguards. It is time for other states to look the innovations in HB879 for guidance.

End of Life Option Act Filed as HB 879

In a historic development, a bipartisan group of State Representatives has introduced a bill calling for enactment of Medical Aid in Dying legislation. Rep Pricey Harrison (D-61), Rep Susan Fisher (D-114), Rep Chuck McGrady (R-117) and Rep Jon Hardister (R-59) made history by sponsoring a unique bill which for the first time requires applicants for MAID to first undergo a hospice assessment. Opponents of MAID often posit that no one suffering from a terminal illness would ever knowingly opt for MAID if they first enter a hospice program. Statistics from OR, CA, WA CO and other belie that argument, as some 90% of MAID patients are indeed enrolled in hospice when they make the MAID application. Nevertheless, HB 879 provides a trade-off from the imposition of the required hospice assessment, by eliminating as no longer needed a second Consulting Physician’s confirmation of the applicant’s terminal status and reducing the waiting period.

Dying Right NC thanks and applauds the four House sponsors who have shown exemplary leadership in bridging the fractious political divide and finding common ground in HN879 as a much needed option for North Carolina’s terminally ill citizens.https://webservices.ncleg.net/ViewBillDocument/2019/3527/0/DRH10442-MG-15B

Please take a minute to thank the sponsors for their courage by writing directly to their legislative offices:

Pricey.Harrison@ncleg.net; Susan.Fisher@ncleg.net; Jon.Hardister@ncleg.net; Chuck.McGrady@ncleg.net

Montana bill to criminalize MAID fails in state Senate

In a startling rebuke to opponents of MAID, the state Senate rejected by a surprisingly wide margin 27-22 in the majority GOP upper chamber. The bill had easily passed in the House and had advanced through the Senate Judiciary Committee. Expectations were that it would pass in the full Senate, where Democratic Governor Steve Bullock was expected to veto the measure. But if ever there was proof that a libertarian streak runs long and wide in the Big Sky State, it was today’s vote to preserve a personal right first recognized by the state Supreme Court in Baxter v Montana, decided Dec 31, 2009.

https://www.thestate.com/news/article228899744.html

Orange County Democrats endorse MAID

At the annual Orange County Democratic Party convention on Sat, March 30, 2019 in Hillsborough, a resolution calling for enactment of MAID legislation was unanimously adopted. Orange County’s elected officials have consistently been supportive of such efforts, and Rep Graig Meyer and Verla Insko have been primary sponsors of all legislative efforts in the past. Nevertheless, it is further evidence that there is widespread support for this alternative End of Life Option for those facing a terminal illness. The approved resolution follows:

24. SUPPORTING LEGALIZATION OF MEDICAL AID IN DYING (“MAID”) IN NORTH CAROLINA 

WHEREAS, Medical Aid in Dying (MAID) describes a procedure where a terminally ill adult suffering from an incurable disease, otherwise of sound mind, diagnosed by two doctors as having six months to live or less may have a prescription filled by a licensed physician with an aid in dying drug; and 

WHEREAS, under MAID, any participating doctor or pharmacist acting in compliance with the numerous statutory safeguards listed above will be immune from criminal, civil or administrative liability; and 

WHEREAS, MAID has been legalized since 1997 in 8 US jurisdictions (OR, WA, CA, MT, CO, VT, HI and DC) providing a vital option for terminally ill individuals who opt to die at the time and place of their choosing, surrounded by friends and family; and 

WHEREAS, yearly Gallup polling data consistently show that over 70% of Americans, including a significant majority of almost all demographic groups, support the legalization of MAID as one End of Life option among several; and 

WHEREAS, states which have legalized MAID have seen enhanced overall End of Life care and pain management by prompting honest discussions between patient and physician; 

THEREFORE BE IT RESOLVED that the Orange County Democratic Party (OCDP) urges the North Carolina legislature to enact Medical Aid in Dying (MAID) legislation similar to Oregon’s Death with Dignity Act, to allow mentally competent, adult North Carolinians diagnosed with less than six (6) months to live due to an incurable terminal illness, to have one more option at the End of Life. 

New Jersey Latest State to Enact MAID

In a stunningly rapid reversal of years of stymied attempts, a bicameral vote of the New Jersey Senate ( by a vote of 21-16) and House (41-33) in passing on Monday, March 25, 2019 the Medical Aid in Dying for the Terminally Ill Act, which Governor Phil Murphy has promised to sign into law. In previous years, with the threat of a gubernatorial veto by Gov Chris Christie, the legislative efforts to introduce a bill did not proceed to a vote in both chambers.

New Jersey thus becomes the 8th US jurisdiction with legislative language authorizing and regulation MAID: NJ, VT, DC, OR, WA, CA, CO and HI, with Montana having MAID available pursuant to the Montana Supreme Court’s 2009 Baxter v Montana case. Increasingly, the stale and often vapid arguments of MAID opponents are failing to convince legislators, given the 22 years of very successful utilization in the pioneer state of Oregon, In New Jersey, several legislators cited personal experiences with loved ones as opening their eyes to the need for this bill for the sake of all terminal New Jerseyans.

We can only hope that the NC legislature will be as forward thinking in providing North Carolinians the same options as enjoyed by some 20% of the US population. It should not continue to be the case that North Carolinians who are entering the terminal phase of their disease feel obligated to establish residency in the closest state with legalized, accessible MAID to achieve their End of Life wishes.https://www.politico.com/states/new-jersey/story/2019/03/25/new-jersey-lawmakers-approve-aid-in-dying-bill-murphy-says-hell-sign-it-932789

NC Medical Journal Letter Makes Case for MAID in NC

In an important pronouncement, four respected NC physicians argued in an open letter in the NC Medical Journal that Medical Aid in Dying is currently available in North Carolina, subject to application of the appropriate medical standard of care. The four physicians, Dr Haider Warraich, Dr Adithi Sethi-Brown, Dr John Carbone and Dr Beth Rosenberg, examined the legal landscape across America and the current legal situation in NC as outlined by Atty Kathryn Tucker in a recent UNC Law Reivew article. They conclude:

“In light of the legal analysis of North Carolina law, we feel confident that Aid In Dying can be provided to patients who request it. The medical community can respond supportively and compassionately to a final act of autonomy by patients who are confronted by a dying process which they find unbearable despite best palliative efforts.”

The endorsement by four pillars of the NC medical community in the wisdom, compassion and medical imperative of providing a MAID prescription to a terminally ill, mentally competent and freely acting patient is further evidence that NC is rapidly moving to join the 8 other uS jurisdictions where this procedure is available.

http://www.ncmedicaljournal.com/content/80/2/128?etoc

Respecting freedom and dignity at the end of life

The premier newspaper in North Carolina’s triangle published an op-ed urging support for legislation to enact MAID in NC, similar to the statutory provisions in place in 7 US jurisdictions. (An 8th jurisdiction, Montana, operates under an Open Practice regime relying on physicians applying the appropriate standard of care).

The op-ed is co-authored by Kory Swanson, the long time CEO of the influential and much respected John Locke Foundation and bespeaks the breadth of support for MAID. The John Locke Foundation is known to celebrate libertarian values of individual freedom and autonomy, and urgent a light touch from the government when interrupting an individual’s right to choose what is best for him or her. The editorial makes clear that MAID laws are consistent with the underlying philosophy of a libertarian approach to individual autonomy.

“No person can choose the time and place of one’s birth, but increasingly, people are seeking to have the final word on the time and place of their death when they’ve been diagnosed with an incurable, terminal and insufferable illness. “, the co-authors begin. They elaborate on the urgent need for North Carolina to join the growing national movement to afford an indispensable option to terminally ill individuals, who, although fully insured, although enrolled in hospice and receiving robust palliative care, may one day decide they simply don’t wish to continue an effort which is both agonizing and largely futile.

https://www.newsobserver.com/opinion/article226636089.html



“Preparing for a Good End of Life”

In this weekend’s WSJ Review section (Feb 9-10, 2019; pp C1-C2), author Katy Butler notes the importance of making plans well ahead of time to make sure our passing does not become an undesired ordeal. She points out the frightening reality that “Seven in 10 Americans hope to die at home, but half die in nursing homes and hospitals.” She warns her reader that “Advanced medicine is replete with treatments (ventilators, dialysis, defibrillators, feeding tubes…) that postpone death and prolong misery without restoring health.”

And that may well be the rub. When an individual is suffering from a terminal, incurable and painful disease, there is essentially no hope of restoring health, even though life may be perpetuated. And with modern technology, it is possible to keep failing organs working artificially almost infinitely… but to what avail? The patient knows he/she will never be restored to a general state of well-being able to enjoy life as he/she once did. Instead, every breathing moment will be a miracle of modern science, totally detached from the essence of what a well lived life is all about. This is where the warnings of Katy Butler are so instructive.

In the absence of advance planning, an individual may well find his/her last days, if not weeks and months, tortuous and devoid of how he/she wants to live the end. Plan ahead, Ms Butler warns. And we all would be wise to take heed

.https://www.wsj.com/articles/preparing-for-a-good-end-of-life-11549643346

Atty Tucker’s Article Draws Comment


We have previously drawn notice to an important law review article [North Carolina Law Review, Vol. 97 Addendum, pp. 1–20 (2019)], in which noted attorney Kathryn Tucker, Director and Founder of the End of Life Liberty Project, posited that even today, in the absence of any statutory language sanctioning Medical Aid in Dying, NC physicians can legally write end of life prescriptions for their terminally ill, mentally competent patients, provided they adhere to the prevailing medical standard of care. Tucker’s article has the potential to change the understanding of what NC doctors can and cannot do today and will likely therefore shape the debate in the General Assembly when it considers legislation on point.

In a recent commentary in the online journal eMerit, “Can NC Physicians Legally Prescribe Meds to Suffering Terminally Ill Patients to Precipitate a Peaceful Death?”, Dr Jeffrey Segal, Chief Executive Officer and Founder of Medical Justice, ( who has also a JD degree) reviewed the analysis behind Tucker’s article and concluded that she makes a compelling case that North Carolina physicians can legally prescribe medications to hasten end of life in competent adults with terminal illnesses.

https://medicaljustice.com/can-nc-physicians-legally-prescribe-meds-to-suffering-terminally-ill-patients-to-precipitate-a-peaceful-death/

Standard of Care in NC: IS MAID Legal Today?

In a pathbreaking law review article published Jan 17, 2019 in the UNC Law Review, Attorney and Hastings School of Law professor Kathryn Tucker, who has brought any number of MAID cases to the US Supreme Court and various State supreme courts, argues that because there is no NC law prohibiting the writing of MAID prescriptions, NC doctors should be able now to write scrips for terminal, competent adult patients, provided they adhere to a prevailing medical standard of care.

https://www.northcarolinalawreview.org/single-post/2019/01/16/Aid-in-Dying-in-North-Carolina

Tucker’s article follows the logic prevailing in Montana, where in 2009 the Montana Supreme Court agreed that in the absence of a law proscribing MAID, it would be illegal to prosecute a doctor who, in conformity with the appropriate medical standard of care, wrote prescriptions for terminally ill, mentally competent patients. In the last ten years, many Montana doctors have been writing MAID prescriptions to help terminal Montanans end their life on their own terms at the time and place of their choosing.

Tucker makes the compelling case that NC doctors can apply the relevant standard of care in treating their terminal patients because the legislature has chosen not to intrude in an area where medical professionals are best equipped to develop an appropriate standard of care, as they do in almost every other type of procedure. Additionally, Tucker notes, given that there are 8 US jurisdictions and several foreign countries where doctors for some time have been helping terminal patients in choosing the optimal end of life option, NC doctors should be able to develop and adhere to a binding standard of care.

DRNC congratulates Tucker on this landmark article which makes a compelling case hopefully providing imminent access to the terminally ill in North Carolina of another End of Life Option.

This article is republished with the kind permission the North Carolina Law Review, Vol. 97 Addendum, pp. 1–20 (2019).