The End-of-Life Option Act Black Hole – Is it time to shed more light?

Do you ever wonder what happened since the Colorado End of Life Options Act passed – Colorado’s version of physician-assisted suicide? The ballot initiative was heralded as providing a safe, compassionate option for those faced with suffering from a terminal disease. The promoters of the initiative claimed that there would be safety and transparency in its execution. It would be the impetus to make great strides in improving end-of-life care for everyone. It would not “normalize” suicide for vulnerable youth with severe emotional pain. Given the findings from the 2018 End-of-Life Options Act report (published by the Colorado Department of Health and Environment), the reality may be quite different.

Between 2017 and 2018 there was a 74% increase in patients who chose assisted suicide. What is driving the increase? We will never know since patients are never asked why they resorted to assisted suicide as part of the requirements of the bill. Is it because they had uncontrolled pain – physical or emotional? Is there subtle financial coercion because of inadequate health care coverage or the inability to utilize family/medical leave? Is it because they feel a burden to their family? Do family members influence their decision? Is it because of their fear of disability? Is it because they are anxious or depressed about dying? If we had answers to these questions, we could devise solutions to reduce the demand for assisted suicide. We could explore new palliative options to address uncontrolled symptoms that the patients identified. We could pursue legislation to improve health care coverage and family/medical leave policies. We could enhance in-home hospice support services. We could make mental health services more readily available near the end of life. Even supporters of assisted suicide need to acknowledge that choosing suicide is a failure of end-of-life care at some level. Without insight into the system failures, we don’t have the knowledge or the motivation to make these improvements.

Patients who choose assisted suicide are, on average, whiter (94%) and more educated (53% with a college and/or advanced degree) than the average Coloradan. What does this say about assisted suicide? Is white privileged culture’s idolization of autonomy making terminally ill individuals feel less valuable and/or a burden when faced with a disease-related disability? Since education level correlates with income, is their choice to pursue assisted suicide a reflection of inadequate familial support that is not seen in lower income families of color? Anecdotally, it is rare not to see a multitude of Latino family members honoring and attending to their hospitalized family members with serious medical illnesses. Is this why Latinos are so underrepresented in those who choose assisted suicide? Does our state need to more aggressively pursue public policies that bolster support for people with disabilities and the family unit?

In 2018, only 60% of the patients who chose assisted suicide suffered from a malignant disease – which typically has a more predictable prognosis/course. This means that 40% of patients had a disease whose progression is less predictable – and perhaps less terminal. The End-of-Life Options Act did not require any oversight or chart audits to confirm that the prognosis was truly terminal (less than 6 months). We know from the 2018 report that at least one patient took the prescription 8 months after it was prescribed. (In Oregon, patients have taken the medication as long as 3 years after the medication was prescribed). This raises the possibility that there may be a substantial error in predicting the terminal nature of the disease.

We know that 66 unique physicians provided 125 prescriptions for lethal medication. We don’t know from the report whether these physicians also served as the required consulting physicians on other patients. Could we be fostering a system in which a tiny minority of physicians in Colorado prescribe/consult on these End-of-Life Options Act patients? Are these physicians even certified in specialties that correlate with the terminal diagnosis for which the patients are prescribed lethal drugs? How are these physicians being remunerated for their services? Because of the lack of documentation required in the Act, we don’t have any way to know the answer to these questions.

There were no Psychology or Psychiatry consultation reports submitted for any patients in 2018. Based on an array of studies, anywhere between 8-47% of patients seeking assisted suicide or euthanasia have clinical symptoms of depression. (Levene I, Parker M, J Med Ethics 2011; 37(4): 205-211). It is hard to imagine that in Colorado, 0/125 patients didn’t warrant at least an assessment by a mental health professional, if not treatment. There exists the very real possibility that we are “treating” depression in some terminal patients with assisted suicide. Is this truly what the electorate had envisioned when the ballot initiative was passed?

In Colorado, as compared to Oregon and Washington, most patients (69%) are receiving a lethal combination of Diazepam, Digoxin, Morphine, and Propranolol (DDMP). Secobarbitol is the more commonly prescribed (albeit more expensive) drug in other states with a better track record of lethality. Are Colorado patients dying quickly and peacefully after the overdose or are they suffering for hours/days? Based on a report in the Denver Post (December 14, 2017), after the lethal ingestion of DDMP, at least one patient choked/coughed and lingered over 8 hours as his wife panicked. Because the Act does not require either any supervision during the ingestion or documentation of the circumstances of the death, we don’t know often this happens and whether physician-assisted suicide is really the “compassionate” choice its promoters claim.

Compassion and Choices is the organization that drafted and bankrolled the assisted suicide ballot initiative. In states where assisted suicide has been legalized, the organization exerts monopoly-like control over its implementation/execution. Compassion and Choices volunteers frequently are present when patients elect to take the lethal overdose to assist the patient/family. Commonly, the positive narratives that are leaked to the media are filtered through this Compassion and Choices lens. Expecting Compassion and Choices to point out flaws in the interpretation/execution of the law is like expecting Boeing to proactively recommend grounding their 737 Max fleet because of safety concerns. It just isn’t going to happen

The End of Life Options Act does require the completion of 4 forms: 1) the Attending/Prescribing Physician Prescribing Form, 2) Patient’s written request for medical aid-in-dying medication, 3) Written confirmation of mental capacity from a licensed mental health provider (if applicable), and 4) Consulting physician’s written confirmation of the patient’s diagnosis and prognosis. Given the seriousness and lethality of the process being pursued, you would think that physicians would be meticulous in their documentation and compliance with the law. Again, the reality is quite different. 13% of physicians did not submit an attending physician report. In 28% of the cases, no documentation of the patient’s written request was received. 33% of consulting physician reports were missing. The report acknowledges that “it is important to note that the Colorado End-of-Life Options Act does not authorize or require the Colorado Department of Public Health and Environment to follow up with physicians who prescribe aid-in-dying medication, patients, or their families to obtain information about the use of aid-in-dying medication.” This is appallingly lax!

One important feature of the patient’s written request form is the requirement to have two signed witnesses. At least one of these witnesses is not supposed to be “a relative (by blood, marriage, civil union, or adoption) of the individual signing this request; be entitled to any portion of the individual’s estate upon death; or own, operate, or be employed at a health care facility where the individual is a patient or resident.” However, there is no mechanism in the law to enforce this requirement. Many researchers have reported that elder abuse affects one in ten elderly adults. In one review (Lachs, M, NEJM 2015; 373 (20):1947-1956), the authors point out that “financial exploitation of older adults ….. has recently been identified as a virtual epidemic”. As abhorrent as elder abuse has become, our laws should be formulated to act as a significant deterrence. The End-of-Life Options Act fails this test.

In Colorado suicide is the leading cause of death for youth between the ages of 10 and 24 (Community Conversations to Inform Youth Suicide Prevention, Health Management Associates, Colorado Office of the Attorney General, 2018). Suicide is a complex problem with multiple contributing factors including inadequate mental health, social media isolation, bullying, inadequate coping skills, academic pressure, drug abuse, lack of economic opportunity, and declining family support. However, in the Attorney General’s Report, “some described their belief that adult suicides have had a significant, and perhaps underestimated, impact on youth.” Since 2016, assisted suicide has been publicized as a compassionate response to suffering. Is it possible that the normalization of suicide for those who are experiencing suffering may make it easier for vulnerable youth to contemplate their own suicide?

The bottom line is that we don’t know a lot about our experience with physician-assisted suicide in Colorado. The regulations generated by the End-of-Life Options act are simply inadequate. We don’t know why the demand for assisted suicide is increasing. We don’t know if there are specific changes we can make in end-of-life care to reduce the demand for assisted suicide. We don’t know if the End-of-Life Options Act can become a tool of (financial) elder abuse. We don’t know if the glorification of autonomy in our Coloradan culture is contributing to our inability to deal with a terminal diagnosis. We don’t know if racial/ethnic variation in the use of assisted suicide is driven by family support/structure. We don’t know if those patients who select assisted suicide had accurate diagnoses and prognoses. We don’t know if a very small portion of the over 7000 active physicians in Colorado are “specializing” in assisted suicide – and potentially stretching the indications. We don’t know how many of the patients who seek assisted suicide are actually depressed and would have a different perspective if their affective disorder was treated. We don’t know how effective the lethal medications prescribed in Colorado are. Are people dying in minutes, hours or days? We don’t know if the legalization of assisted suicide is one factor in the epidemic of teen suicide.

We are not enforcing the meager documentation requirements that exist, much less demanding a new, more transparent process. It is time we take action and shed more light on this assisted suicide black hole!