End of life options act is crafted in a way that provides protections

Editor’s note: this is a response to the April Access Press editorial, Consider rights of the disabled before allowing assisted suicide. by

Rebecca Thoman, M.D.

As a physician and director of the campaign to pass the Minnesota End-ofLife Options Act (SF1813//HF 1930), I appreciate your thoughtful editorial comments. The End-of-Life Options Act, Introduced by Rep. Mike Freiberg and Sen. Dr. Kelly Morrison, would allow terminally ill adults the option to request and receive medication they can self-ingest for a peaceful death if their suffering becomes intolerable. I recognize that the history of abuse, neglect and trauma inflicted on adults and children with disabilities contributes to mistrust of the medical system and can make this conversation fraught with emotion. The original legislation upon which the Minnesota bill is modeled, crafted in Oregon more than two decades ago, was designed to account for concerns about the potential abuse of vulnerable populations. That’s why medical aid in dying is driven strictly by the patient and only the patient. Some of the major criteria include:

1) To qualify, a terminally ill adult must have a six-month prognosis (same as for hospice enrollment).

2) They must have full decisionmaking capacity understanding the risks and benefits of their treatment options and be able to give informed consent of their own volition. Substituted judgment (such as from guardians or healthcare proxies) is not allowed.

3) The request must be documented once in writing (which is submitted to the state department of health) and 2 verbal requests must be made to two different physicians or nurse practitioners of the patient’s choice who must document the request in the medical record.

4) Disability, advanced age or chronic

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disease in the absence of a six-month prognosis do not qualify a patient for medical aid in dying.

5) The individual must be able to selfingest the medication (by swallowing, use of a gastric or rectal tube). Injections and infusions are explicitly forbidden, as is coercion which carries a criminal penalty.

And, no one, including health care providers, is required to participate. As with reproductive healthcare or genderaffirming healthcare, providers may act in accordance with their own conscience.

Concerns about the potential for abuse were first raised before the Oregon law was enacted in 1997. But now, with 25 years of experience from Oregon (and decades of experience from the other authorizing states), we don’t need to speculate. Data shows that the laws work as intended. In fact, Disability Rights Oregon hasn’t received a single complaint of abuse related to the state’s Death with Dignity Act. Annual reports from Oregon, Washington, California, Colorado and Vermont show that the vast majority of individuals who chose medical aid in dying were enrolled in hospice and died from cancer, heart or lung disease, or a progressive neurologic disorder like ALS.

The movement for end-of-life options shares basic values with those of the disability rights movement: autonomy, dignity and self-determination. Our goal is to empower people at the end of life through conversations, advance care planning, and expanding end-of-life options. I welcome further discussion.

Thoman is director for Doctors for Dignity, which is part of Portland, Oregonbased Compassion & Choices. Compassion & Choices fights for the rights of people at the end of their life and pushes back against those who seek to strip those rights away. Learn more at https://www. compassionandchoices.org/

Access to rare disease specialists needs consideration by lawmakers

To the editor:

I’m a neurologist at Gillette Children’s and I have an ask for our elected officials that is near and dear to me and the families that we treat. I'm asking them to support the inclusion of SF 1029/HF 384 in the Senate and House HHS omnibus bills. This legislation increases access to the right specialist for the diagnosis, monitoring, and treatment of a rare disease.

Rare diseases are often complex, chronic, progressive, degenerative, and life-threatening. Many rare diseases affect several aspects of the body, requiring care from different types of specialists. Access to a provider that has the knowledge and experience to obtain a correct diagnosis or prescribe the correct course of management or treatment is essential for rare disease patients.

This legislation has the potential to reduce the time to diagnosis (from 7-8 years on average), provide cost savings to both the health care system as a whole and to individual patients and their families, and most importantly increase timely and appropriate access to care for rare disease patients.

Tim

Affordable housing availability is essential for people with disabilities

To the editor:

As a social work student in Minnesota, and recently working with clients in Housing Stabilization Services, I have seen firsthand the impact of affordable housing on people with disabilities. Everyone deserves an affordable, stable, and suitable place to call home, and having access to affordable housing is essential for well-being.

The Minnesota House recently passed a bill called HF2335. The bill would provide more than $1 billion in funding for affordable housing programs in the state. This bill includes a proposed 0.25 percent sales tax for the Twin Cities metro area; however, this tax would, among other programs, make possible funding for landlord mediation support and home rehabilitation financing for people with disabilities.

In Article 4 of the bill, (in Article 4, Section 1, Subdivision 14, line 34.3) agencies could tap into special loans to make housing work for a person with disabilities, when typical financing is not otherwise available. This bill allows agencies to use grants for “accessibility rehabilitation loans” when, according to bill’s wording, “the borrower or a member of the borrower's family requires a level of care provided in a hospital, skilled nursing facility, or intermediate care facility for persons with developmental disabilities;

(2) home care is appropriate; and (3) the improvement will enable the borrower or a member of the borrower's family to reside in the housing.” From this reading, this looks like more home rehabilitation loan funds available to individuals using waivered services.

This bill specifically includes, (in Article 2, Section 4), the establishment of a statewide housing mediation grant program, citing “people with disabilities,” when talking about supporting the needs of renters along with residential property owners. The proposed mediation grant program includes a provision stating that agencies may use the grant to “increase mediation services for seniors and renters with disabilities and illnesses that face housing instability.”

Passing this bill will demonstrate Minnesota’s commitment to increasing access to affordable housing and promoting the well-being of all Minnesotans. The next step for the bill, HF2335, to become law is for it to be passed by the Senate and if they approve the bill, it will be sent to Gov. Tim Walz for his signature. I urge Minnesota residents to contact your senator in your district, and the governor, to voice your support of HF2335.

AnnaMarie Ronning Graduate Student, Social Work

Henrietta Schmoll School of Health Sciences St. Catherine University