Misconceptions about Medical Aid in Dying and the Disabilities Community

There is an astounding amount of often well-intentioned but extremely misleading misinformation surrounding how the sound medical practice of medical aid in dying affects people living with disabilities.  We take this seriously. Our work is about bringing people comfort during the most difficult time of their life — not causing harm, and we prioritize ensuring that any authorization of medical aid in dying protects vulnerable communities.  As such, we wanted to set the record straight. Here’s the truth:

There is no connection between the denial of expensive or experimental treatment and the coverage of medical aid in dying as an end-of-life care option.

Insurance providers may decide not to cover a treatment that is deemed unnecessary, experimental, or below the standard of care. In late-stage cancer patients, for example, insurance companies often decline to cover treatments with no proven efficacy, or those more likely to harm the patient than help them. But this insurance standard is consistent nationwide, regardless of whether or not the state where the applicant resides has authorized medical aid in dying.

The story most often cited to disprove that is that of Stephanie Packer, a California woman diagnosed in 2012 with a terminal autoimmune disease called scleroderma. Her insurance company denied her request to cover an expensive new chemotherapy treatment after initially saying it would be covered. Stephanie wrongly believed that this was because medical aid in dying had recently been passed into law in California — but in fact, her insurance company had refused to cover her chemo medication five times prior to the passage of the California End of Life Option Act.

Strong safeguards ensure that people suffering from depression or other conditions that may impair their judgement are able to make this decision carefully and rationally.

Under all existing medical aid-in-dying laws in the U.S., two physicians must certify that a person’s request is rational, informed, and enduring. If either physician suspects this may not be the case, the person is required to undergo an additional mental health evaluation with a mental health professional – usually a psychiatrist, psychologist, or licensed clinical social worker. The request for aid-in-dying medication does not proceed unless the mental health specialist affirms that the person is not experiencing the effects of any mental condition that would cause impaired judgement, ensuring the patient is capable of making a rational and informed decision.

Compassion & Choices strongly supports these safeguards. Imposing additional mental health requirements is unnecessary and contrary to long-established medical practice as it relates to giving consent and the doctor-patient relationship. Opponents of medical aid in dying will sometimes attempt to add onerous requirements to laws in an attempt to restrict access, and Compassion & Choices opposes those efforts. During the debate around a proposed Maryland medical aid in dying bill, opponents worked to add an amendment that would require every single person attempting to access medical aid in dying to obtain a psychiatric evaluation, even if their doctors did not consider it necessary. This happened while the state was suffering from a severe shortage of mental health professionals, and would have resulted in discrimination against patients who lived in rural counties, where the shortage was most severe. Given that it prohibited equal access to the law, Compassion & Choices saw this amendment for what it was – an intentional trap – and opposed it.

In more than four decades of practice, there is not a single substantiated case of abuse or coercion – nor any civil or criminal charges filed – relating to medical aid in dying. Not one.

Disability Rights Oregon (DRO) Executive Director Bob Joondeph confirmed in a letter written on Feb. 14, 2019, that: “DRO has never to my knowledge received a complaint that a person with disabilities was coerced or being coerced to make use of the [Oregon Death with Dignity] Act.”

And a Journal of Medical Ethics study of the Oregon Death with Dignity Act: “showed no evidence of heightened risk for the elderly, women, the uninsured…people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations.”

The Journal of Palliative Medicine has published peer-reviewed, clinical criteria for medical aid in dying to ensure physicians who practice it adhere to the standard of care, a diagnostic and treatment process that a clinician should follow for a certain type of patient, illness, or clinical circumstance.

Medical aid in dying receives much more independent scrutiny than other end-of-life care options, like continuous deep sedation or voluntarily stopping eating and drinking.

Unlike with these other end-of-life practices, the states where medical aid in dying has been passed into law release reports detailing things like characteristics of the people who have participated in the program, the number of prescriptions written, the locations of prescribing doctors and more.

These are readily available for CaliforniaColoradoD.C.Hawai‘iMaineNew JerseyOregonWashington and Vermont.

Existing evidence shows support for medical aid-in-dying laws from people living with disabilities.

Individuals and organizations representing people living with disabilities who have studied the issue agree.

State polls show a strong majority of voters living with disabilities support medical aid in dying in Connecticut (65%), Massachusetts (74%) and New Jersey (63%). Those numbers fall nearly exactly in line with overall support in those three states (Connecticut – 66%, Massachusetts – 71%, New Jersey – 62%)

Compassion & Choices
8156 S Wadsworth Blvd #E-162
Littleton, CO 80128

Mail contributions directly to:
Compassion & Choices Gift Processing Center
PO Box 485
Etna, NH 03750