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.
Ed Tiryakian, J.D., MBA, founded Dying Right NC in 2015 and is its Executive Director. He previously worked in international banking in Asia before retiring to his native NC.He believes End of Life issues are one of society’s most pressing challenges as we all live longer and the medicalization of the dying process continues to conflict with the individual’s right to choose his or her end.