A RESPONSE TO PROPOSED HOUSE BILL HB-877: AN ACT DIRECTING THE NORTH CAROLINA INSTITUTE OF MEDICINE TO STUDY THE LEGALIZATION OF "MEDICAL AID IN DYING" IN NORTH CAROLINA; AND APPROPRIATING FUNDS FOR THIS PURPOSE
Principles of Ethics
In determining the goodness or badness of an act, it is often not sufficient to simply look at consequences that are expressed in terms of studies and statistics alone. One needs to be guided by ethical principles, which are self-evident and true in themselves. Such principles are expressed in axioms like, ‘when in doubt, do no harm’ or ‘do unto others as you would have them do unto you.’ In regards to the issue of assisted suicide, the guiding principles of ethics that should be first and foremost are ‘do no harm’, and even more fundamentally, ‘thou shall not kill’.
There are many ways to show how a violation of these principles will lead to negative consequences such as abuse, unintended death, pressure to die placed on the vulnerable and disabled, death as an easy way out, and even death as a means to save money. But the violation of the principle itself is the first harm, the starting point, from which all other ills will occur.
We all want the alleviation of suffering, and believe that is an indispensable element of compassionate health care. The attendant risks to human life when we violate these fundamental principles always leads to more death and suffering of patients in ways that were likely unforeseen and unintended by those who pursue death as an option in healthcare.
Killing the patient should never be an option in healthcare. It turns the entire health care system on its head, and subverts the very reason for its existence.
Contemporary medicine has made great strides in the relief of suffering, especially in the areas of pain control and palliative care for the dying. These means must continue to be pursued. Killing patients always undermines the more creative incentives and opportunities for true compassion. Real compassion elicits patience, perseverance, ingenuity and resources from those of us in the position to care for the vulnerable. Killing in the medical context is an act that lacks the unconditional commitment to the life of the suffering person which is the basis of good healthcare, and abandons them in their most urgent hour of need.
Despite the assurances of HB-877’s sponsors, who claim that, “in the collective 50 years of data available from the 11 states that have legalized MAID, there have been no recorded instances of misuse, abuse, or coercion and the MAID laws have been operating as envisioned since the time of enactment,” we are convinced that many persons living with sickness, advanced age or disability are put at risk of prematurely ending their lives, either through subtle societal pressure, or through direct pressure, such as suggestions from medical personnel, insurance companies and even family members.
In a world that is inherently imperfect, killing as a medical option can never, under any circumstances, be assured to be free of abuse. The claim that it is simply flies in the face of reality. People will inevitably die in ways that are abusive and unjust, and those deaths will be on the hands of legislators who dared to tamper with the natural order, and with the principles that govern that order.
What is more, faced with such a momentous shift in medical ethics and public policy, the very least that citizens in a democracy are owed is honesty as to what is proposed. But often, assisted suicide laws are shrouded in secrecy, called by euphemisms like “Medical aid in dying” and abuse is either not reported or covered up.
In Oregon, from the Oregon Death with Dignity Act, 2022 Data Summary, the following data was gathered showing prescriptions written and medications ingested under their “Dying with Dignity Act”.[i] Of note is the unknown status of so many of these patients due to underreporting, as well as the number of patients who outlived their prognosis.
“ Of the 431 patients for whom prescriptions were written during 2022, 246 (57%) died from ingesting the medication. An additional 84 (19%) did not take the medications and later died of other causes.
At the time of reporting, ingestion status was unknown for 101 patients prescribed DWDA medications in 2022. Of these, 43 patients died but follow- up information is not yet available. For the remaining 58 patients, both death and ingestion status are not yet known (Figure 2). In all, 16 patients (6% of DWDA deaths) outlived their prognosis (i.e., lived more than six months after their prescription date). These are not reassuring statistics. One wonders what has happened to the poisonous barbiturates that were prescribed to the 101 patients? These substances are currently at large.
The same is true for California: of the 772 individuals who were prescribed such drugs, 448 individuals, or 58.0%, were reported by their physician to have died following ingestion of aid-in-dying drugs prescribed under the Act; and 130 individuals, or 16.8%, died from the underlying illness or other causes.
The ingestion status of the remaining 194 individuals, or 25.1% is unknown. Of the remaining 194 individuals, 88 individuals, or 11.4 percent, have died, but their ingestion status is unknown because follow up information is not available yet. For the remaining 106 individuals, or 13.7 percent, both death and ingestion status are pending.
Furthermore, 38 individuals with prescriptions written in prior years ingested and died from the drugs during 2021.
Also of note is the fact that of the total deaths since its legalization in California, only 41% of people had their prescribing physicians present at the time of death. It is unknown who was present at the time of death for 49.8% of assisted suicide deaths.[ii]
What does “Terminally ill” mean?
In Oregon, those qualified to receive “Medical aid in dying” (MAiD) must be “terminally ill” in the written opinion of two doctors. This means that death is immanently foreseeable within six months. Aside from the fact that death can never be predicted with accuracy, and that many people live months, years and even decades beyond physicians’ predications, the very idea of “terminally ill” is sullied further by what the term does not mean. It does not mean that even a few other options have been first tried. It does not mean that suicide at the hands of a physician will be a last resort. It does not mean terminally ill with no hope of treatment.
Patients who could live much longer with treatment, or in fact be cured, but who refuse to do so, for whatever motive, are also eligible for the State’s assisted suicide protocols.
As reported in a paper entitled, “Oregon Health Authority Reveals Hidden Problems with the Oregon Assisted Suicide Model”,[iii] consider a cancer patient who has been abandoned by her partner. In her despair, she can refuse life-sustaining treatment, and thus be eligible to receive “MAiD”. This could be true for someone on dialysis, or on medication for diabetes.
Oregon health authorities admit that even if a patient wanted life-saving treatment that could provide a cure, but couldn’t afford it, they are still deemed “terminal” under the law and are eligible for MAiD.
Do the drugs cocktails work?
As reported by the Oregon Death with Dignity Act, 2022 Data Summary the length of time it took people to die from the point of ingestion of a deadly substance ranged from three minutes to 68 hours. And this data is reported only due to the fact that a health care provider was present when the patient died which occurred in 165 cases out of a total of 278.
Considering that 92% of patients were reported to have died at home, and many without a doctor present, this number could be much higher.
As reported in Oregon’s 2022 Data Summary, prescribing physicians were present at time of death for 36 (13%) of the patients who ingested DWDA medications. Thirty-seven patients (13%) had other health care providers present, and volunteers were present for 51 deaths (18%). Data on time from ingestion to death are available for 165 DWDA deaths (59%) during 2022. Among those patients, time from ingestion until death ranged from three minutes to 68 hours, with a median time of 52 minutes (Table 1).
In Oregon, of the known durations from ingestion to death, (which is 1,078 out of a total 2,384), 28.2% or 368 people have taken between 1 and 6 hours to die, 6.7% or 87 people took more than 6 hours, and 9 regained consciousness.
Death: The cheaper option
Assisted suicide would easily become the cheapest “treatment” offered, and importantly, covered by insurance companies.[iv] There have been instances reported of companies refusing to cover life-saving treatments in favour of the cheaper option, death, as this Nevada physician explains in a video. He wanted to transfer two patients to their home states of Oregon and California, but were denied by the patients’ insurances companies, and MAiD was suggested instead. The patients each had a high cure rate probability (over 70%) from the proposed treatments. https://youtu.be/CWrpr_5e4RY
Another young mother of four was denied coverage for treatment shortly after California legalized MAiD. She was informed that her assisted suicide co-pay would be $1.20.
The risk of insurance companies backing away from real life-saving treatments is a significant concern, that must be addressed in debates about MAiD.
Disability Rights Organizations Oppose MAiD
“If this bill passes, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.” Marilyn Golden, Disability Rights Education & Defense Fund
Every disability rights organization in the United States that takes a position on assisted suicide and euthanasia oppose these practices. Inevitably they set up a two-tier health care system that favours the strong and the able-bodied, and marginalizes the disabled. What many fail to recognize however, is that every terminally ill person is disabled, and they are suddenly on the frontlines of the medical system, dealing almost daily with the best and the worst of this inherently flawed system. When suicide becomes a medical option for people who are unaccustomed to being disabled through illness, it places on them an undue burden to take this option.
Not Dead Yet, a disability rights group that actively opposes assisted suicide, writes the following on their web-site:
“It should be noted that suicide, as a solitary act, is not illegal under any state’s statutes. Disability concerns are focused on the systemic implications of adding assisted suicide to the list of “medical treatment options” available to seriously ill and disabled people…. Anyone could ask for assisted suicide, but physicians decide who gets it.”[v]
Currently, there is a law suit in the State of California challenging the assisted suicide laws there as being inherently discriminatory towards the disabled community, who receive less than equal healthcare based solely on their disability.
Untreatable pain is not the main reason for assisted suicide requests
Contrary to societal perceptions, the main cause for requests is not pain, or even the fear of pain. It is loss of “quality of life” and autonomy.
The Oregon 2022 Report states, “As in previous years, the three most frequently reported end-of-life concerns were decreasing ability to participate in activities that made life enjoyable (89%), loss of autonomy (86%), and loss of dignity (62%).
In Washington State[vi], the most cited reasons were people gave for choosing assisted suicide were “less able to engage in activities making life enjoyable” (85%), loss of autonomy (85%), loss of dignity (73%), burden to family and caregivers (56%).
This is a sad commentary on the state of our nation, when the most vulnerable among us are not affirmed, loved, and made to feel part of the human family, but instead due to the loss of their abilities are left feeling isolated, alone, and of no consequence. We can do much better than giving fatal poisons to those who call us to our greatest vocation; unconditional love and care for those suffering at the end of life.
[i] Oregon Death with Dignity Act, 2022 Data Summary, https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year25.pdf [ii] California End of Life Option Act, 2021 Data Report, https://www.cdph.ca.gov/Programs/CHSI/CDPH%20Document%20Library/CDPH_End_of_Life%20_Option_Act_Report_2021_FINAL.pdf [iii] Fabian Stahle, Oregon Health Authority Reveals Hidden Problems with the Oregon Assisted Suicide Model, January, 2018 https://drive.google.com/file/d/1xOZfLFrvuQcazZfFudEncpzp2b18NrUo/view?pli=1 [iv] https://alexschadenberg.blogspot.com/2016/10/assisted-suicide-law-prompts-insurance.html [v] https://notdeadyet.org/disability-rights-toolkit-for-advocacy-against-legalization-of-assisted-suicide [vi] Washington Death with Dignity Act, 2021 Data Report, https://doh.wa.gov/sites/default/files/2022-11/422-109-DeathWithDignityAct2021.pdf?uid=6478ba22519e6