End of Life: YOU DECIDE

2/12/2018

Every year, as part of our work at the state legislature on behalf of people with disabilities, we are asked to support, or at least consider, legislation that is often contentious. This year we have again listened to presenters regarding the controversial Minnesota End-of-Life Option Act (SF1572/HF1885) authored by Senator Chris Eaton and Representative Mike Freiberg.
This legislation is modeled after Oregon’s 1997 Death with Dignity Act which has been adopted by six states (Oregon, Washington, Montana, Vermont, California, and Colorado) and the District of Columbia. The law allows terminally ill adults of sound mind to request and receive medication for a peaceful death. There are caveats that accompany the law such as the patient must be able to self-administer the medication, any health care professional can opt out of giving consent, and eligibility must be determined by at least two physicians, just to start.
There are numerous further safeguards including:

The patient must be terminally ill with less than six months to live
They must be fully informed of all their options
The patient must request the prescription from a physician and be free from undue influence or coercion
The patient must be offered multiple opportunities to rescind their request for aid-in-dying medication
Two witnesses need to sign the request form attesting to the voluntary nature of the request
Wills, contracts, insurance and annuity policies are unaffected by a person choosing aid in dying
Aid in dying is not considered suicide or assisted suicide

You can see why this legislation might be controversial on many levels, but it behooves each of us to consider with an open mind how well this has worked in other states. There is a surprising amount of evidence in favor of laws like the Minnesota End-of-Life Option Act. For starters, in 30 years of medical aid in dying in these other states, there has not been a single instance of documented abuse. In Oregon, who has the lengthiest history with aid in dying, they have found end-of-life care has improved due to the dialogue that arises about options. Hospice referrals are up, along with use of palliative care. Oregon now has the lowest rates of in-hospital deaths and the highest rates of in-home deaths in the nation. And, startlingly, violent suicide among hospice patients has virtually disappeared. These are tremendous outcomes and help us understand why 72% (above the national average) of Minnesotans support aid in dying.
However, the disability community is not as supportive as the average, and we are actually identified as one of “the groups” that do not support this bill. Obviously it is dangerous to make assertions about the beliefs of an entire group, but understandably given our history the disability community might well be cautious about such a bill.
Wherever you stand on the issue, it is important to be informed. Compassion & Choices is the Denver based non-profit that supports education and advocacy around the country on this issue. They have a local group at work in Minnesota that can be contacted via Facebook at www.Facebook.com/CompassionandChoiceMinnesota and would be happy to come and talk to your group or provide further information. So, get educated, give it some thought, and then you decide. Ultimately, as is our democratic process, Minnesotans will make the choice to incorporate aid in dying or not.
Feel free to reach out to your legislator regarding this bill.
Sheryl Grassie / Executive Director MNCCD

2 Comments

MNAAS link

2/20/2018 03:53:33 pm

There are many mischaracterizations in this description of the proposed legislation. Here are just a few. First, the article says that patients must be of “sound mind” to receive lethal prescriptions. But there is no requirement that patients receive a psychiatric evaluation beforehand, and in places like Oregon (where assisted suicide is legal) only a tiny fraction of patients receive such an evaluation. A study in the British Medical Journal found that some Oregon patients with depression had received lethal prescriptions.

Second, the article says that patients must be terminally ill and have six months or less to live. But such prognoses are often incorrect; according to the annual government reports from Oregon and Washington, patients qualifying for lethal prescriptions have gone on to live for years (yes, years) before dying. Moreover, “terminal illness” has actually been interpreted to encompass chronic conditions (like diabetes) that would only lead to death in six months if left untreated. The demonstrable truth is that assisted suicide laws aren’t limited to terminally ill patients at all (see, for example, http://alexschadenberg.blogspot.ca/2018/01/hidden-problems-with-oregon-assisted.html).

Third, the article says that there are safeguards to prevent undue influence and coercion. But there are no safeguards whatsoever once the lethal drug has been dispensed. There is no oversight to prevent coercion at the time the drug is taken. In places like Oregon, the doctor is generally not present at the time of death.

Fourth, the article says there has been no abuse in places like Oregon. There has absolutely been abuse (see, for example, https://dredf.org/public-policy/assisted-suicide/some-oregon-assisted-suicide-abuses-and-complications/), but it’s also true that assisted suicide laws provide no real way for authorities to uncover abuse. They lack transparency and accountability. But an analysis in the Michigan Law Review nevertheless concludes that “[t]he evidence strongly suggests that [Oregon’s] safeguards are circumvented in ways that are harmful to patients.”

Finally, the article assures readers that this practice is not “assisted suicide.” But suicide is intentionally causing one’s own death. Assisted suicide is when someone else assists. The practice the proposed legislation would authorize (receiving a lethal drug to intentionally cause one’s own death) is, by any ordinary definition, assisted suicide. The fact that advocates of the legislation are so committed to using euphemisms and denying dictionary definitions should cause everyone to be skeptical.

Those in the disability community who want to learn about this issue should not, as the article suggests, limit their “education” to Compassion and Choices, the primary assisted suicide advocacy group. They should also look at the disability rights groups (and other groups) that vigorously resist assisted suicide because of its dangers and its assumption that the lives of those who have disabilities are less worth living than the lives of everyone else. (See, for example, www.dredf.org and www.notdeadyet.org.)

Compassion & Choices link

2/21/2018 03:04:00 pm

The movement to expand end-of-life options is rooted in the same principles that underlie the disability rights movement: respect, dignity and autonomy. But, while 18% of Americans have access to medical aid in dying at the end of life, the practice is a crime in Minnesota.

Medical aid in dying authorizes terminally ill adults with decision-making capacity and a prognosis of six months or less to live to request and receive a prescription medication they may self-administer for a peaceful death if their suffering becomes intolerable. Medical aid in dying is patient-directed care. Only the dying individual can make the request and only the dying individual can administer the medication. They remain in control at all times.

Factually, legally and medically speaking, it is inaccurate to equate medical aid in dying with assisted suicide or euthanasia. Statutes in authorizing states emphasize that:
“Actions taken in accordance with [the Act] shall not, for any purpose, constitute suicide, assisted suicide, mercy killing or homicide, under the law.”

Suicide is a tragic result of unrecognized or untreated reversible mental-health disease such as Depression or addiction. Suicidal patients want to end their lives as a result of impaired cognition and deficiencies of impulse control, are most often alone and may use violent means. By contrast, patients seeking medical aid in dying want to live, but they are dying from an irreversible and untreatable physical disease. Their goal is to avoid unbearable suffering. They are surrounded by family and the passing is peaceful. The medical community has long rejected the term “homicide” to describe withdrawal of life-sustaining treatment. Similarly, the term “suicide” to describe medical aid in dying is inaccurate and should be abandoned.

Although opponents cite individual stories, a body of data has emerged that disproves early fears of abuse. A report published in the Journal of Medical Ethics about the Oregon DwDA concluded: “Rates of assisted dying in Oregon showed no evidence of heightened risk for … the physically disabled or chronically ill.” (Battin, M. van der Heide, A. Ganzini, L., van der Wal, G. Onwuteaka-Philipsen, B. Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in “vulnerable” groups, Journal of Medical Ethics 2007;33:591-597) . Further, in the twenty years that the Oregon DwDA has been in effect, Disability Rights Oregon has not received a single complaint of abuse related to the law.

Oregon, Washington, Vermont, California and Colorado post aggregate data on the use of medical aid in dying. The most recent report from the Oregon Health Authority Department of Public Health shows that in 2017, only 218 Oregonians received prescriptions under the DwDA and that the most common diagnosis was cancer, followed by ALS. The vast majority of individuals who requested prescriptions were enrolled in hospice at the time. (http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf)

The grassroots movement for medical aid in dying is growing and disability advocates are among the supporters. People with disabilities deserve bodily autonomy and the freedom to make their own end-of-life decisions like everyone else.

End of Life: YOU DECIDE

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