One of the longest standing concerns of the disability rights movement is the misappropriation by others of our rights to make our own decisions. This problem touches every facet of life and is a major factor in the continuing incarceration of older and disabled people in nursing facilities and other institutions for the “crime” of needing help in activities of daily living like dressing, bathing, preparing meals, etc.
Guardianship is the most severe and oppressive means by which our decision making rights can be taken away. The U.S. Senate Committee on Aging recently issued a letter requesting comments on guardianship and alternatives to guardianship and NDY responded on July 19.
NDY’s comments focused on concerns about abuses by guardians, particularly in terms of well documented financial abuse. Far less documented is abuse in the context of healthcare decision making, almost invisible due to patient confidentiality. Yet it should be obvious that many healthcare decision makers are appointed by default under state statutes, and are not necessarily the trusted person the patient would have appointed while considered able to do so. In many cases, default decision makers may have a conflict of interest, for example, if they are an heir or a care giver. Some healthcare providers and allied personnel may be alert to such conflicts of interest, but others are not. Decisions to withhold life-sustaining treatment made by others are a major focus for NDY.
Our recommendations in the public comment point out a number of protections proposed as part of the Uniform Guardianship, Conservatorship and Other Protective Arrangements Act and urge the Committee to work with elder and disability organizations to identify provisions that could be enacted by Congress to establish basic procedural rights to be required in state laws. When needed, supported decision making should be the first approach, while guardianship should never be used except as a last resort. We also urge data gathering and reporting to help better identify abuses and increase accountability.
This hasn’t previously been on NDY’s radar (h/t to Euthanasia Prevention Coalition), but Germany has been grappling with assisted suicide since at least 2005, when a woman disabled by paralysis, Bettina Koch, sought to purchase suicide drugs domestically. She was denied, and then travelled to Switzerland and committed suicide “with the help of the Dignitas euthanasia association.”
In 2012, after a years-long legal battle, her surviving husband received a ruling from the European Court of Human Rights. Although it did not rule broadly on individuals’ rights to assisted suicide, the Court did state that “German courts were negligent in refusing to hear [his wife’s] case,” sending it back to the German courts.
According to DW.com, a German news outlet, the European Court of Human Rights — “decided not to issue a ruling on the right to assisted suicide, saying this duty fell to individual countries. . . . [T]he court said it would not issue a binding ruling on the matter, especially as only four of the 42 comparative states the court examined allowed active assisted suicide. Only three EU member countries – the Netherlands, Belgium and Luxembourg – currently permit active assisted suicide, when someone agrees to a request from the patient to help them end their life. Switzerland is not in the EU.” (As of 2013, there are 28 countries in the EU.)
In a 2015 article, DW.com reported that, “In Germany, assisted suicide is not illegal under criminal law, but the doctors’ own professional code of ethic prohibits it.”
However, in 2015, the German Parliament voted against allowing commercial associations to help people to commit suicide. This criminalized the practice for such groups. At the same time, Parliament rejected other bills to fully legalize assisted suicide. Nevertheless, family members or close associates were reportedly still exempted from punishment in assisted suicide cases.
The after-effects of the 2012 “special case” were again keenly felt in 2017. After subsequent proceedings, on March 2, 2017, DW.com reported that Germany’s federal court ruled that people:
. . . “in extreme circumstances” should have legal access to drugs to end their own lives.
The federal administrative court in Leipzig ruled in favor of “the right for a patient who is suffering and incurably ill to decide how and when their life should end” provided the patient “can freely express their will and act accordingly.”
Reportedly, the purchase of deadly drugs in Germany is forbidden (though not criminal except for commercial associations), but the court found that the right of self-determination meant there should be exceptions for extreme cases “if, because of their intolerable life situation, they had freely and seriously decided to end their lives” and if there were no palliative-medical alternatives.
The “extreme cases” concept based on Mrs. Koch’s case of paralysis is extremely objectionable from a disability perspective, and the absence of a definition of what constitutes an extreme and exceptional case meriting assisted suicide is more than troubling.
In the same year, German Parliament strengthened palliative care to require greater insurance coverage of hospice care for patients in the country.
Then, in January of 2018, the 2017 ruling was called into question by former German Supreme Court judge Udo di Fabio. Also an attorney for Germany’s Federal Institute for Drugs and Medical Devices (BfArM), di Fabio asserted that the state providing drugs to individuals is unconstitutional, as it means the state intervening in some of an individual’s most personal choices. Since 2017, the BfArM had “not only [been] ordered to supply the pill, but also to decide on its own which cases effectively warranted suicide and which didn’t.”
Among other things, the shadow of the Holocaust renders Germany especially sensitive to state intervention in the lives and deaths of its citizens. The BfArM fears the possibility of enacting similar levels of state violence if it continued to be granted the power to give suicide drugs to patients. Although the outcome of di Fabio’s challenge remains to be seen, he has influential people such as Germany’s Federal Health Minister, Hermann Gröthe, on his side; as well as organizations like the German Foundation for Patient Protection.
We hope that these and other actors will continue to stand in opposition to state involvement in assisted suicide in Germany. But frankly, if families are permitted to assist suicide, one wonders if these opponents have ever heard of elder abuse, because from Not Dead Yet’s point of view they’ve certainly left a gaping hole in patient protections.
The California state assisted suicide report for 2017 omitted at least one important type of data, the reasons people request lethal drugs. The reasons data is something that Oregon and Washington have reported from the beginning of their “experiments” with these extremely flawed and dangerous laws.
This omission by California should raise red flags. First, the physician follow up form the state requires from the prescribing doctors after the patient dies includes a question about the reasons the patient requested assisted suicide. If the data is collected, why not report it?
Another red flag is the wording of the question on the form. The reasons question on the California form (See Question 15 below**) differs from the question on the Oregon form (also Question 15). The pain factor in California’s form refers to actual pain, while Oregon’s form refers to actual pain or concern about pain, potentially including fear of future pain. But the California form also includes “suffering” in the same factor, a vague term that could mean anything, including emotions such as loneliness, sadness or grief. By including pain and suffering in the same factor, the two are hopelessly conflated and rob the responses of important informational value. Indeed, as worded, both the OR and CA “pain” factors make it impossible to conclude that actual physical pain was the issue and, thus, don’t require the prescribing doctor to report actual uncontrolled physical pain that would raise questions about the doctors’ competence in pain relief.
More disturbingly, California omits two of the factors listed in the Oregon form – financial concerns and feelings of being a burden on others. Feelings of being a burden have been an increasing factor, with 55% reportedly expressing this in 2017 in Oregon.
As disability rights advocates have repeatedly noted, the reported reasons people request assisted suicide demonstrate, contrary to frequent claims by assisted suicide proponents, that pain is not the issue, but rather psychosocial and practical concerns that can be addressed by quality palliative care and other supports. In addition, these concerns demonstrate that the people who receive lethal prescriptions are disabled, whether their conditions be lifelong or acquired, chronic or terminal.
Since California is collecting but not reporting this data, we are left to ask why? Have assisted suicide proponents urged the state to withhold this information? Admittedly, disability advocates point out the corresponding data in Oregon as an indication of the dangers of assisted suicide laws. But if California claims to be committed to honest reporting, what do they have to hide?
** 15. Possible concerns that may have contributed to the patient’s decision to request a prescription for aid-in-dying drug Please check “yes,” “no,” or “Don’t know,” depending on whether or not you believe that concern contributed to their request (Please check as many boxes as you think may apply) A concern about. . .
o His or her terminal condition representing a steady loss of autonomy ☐ Yes ☐ No ☐ Don’t Know
o The decreasing ability to participate in activities that made life enjoyable ☐ Yes ☐ No ☐ Don’t Know
o The loss of control of bodily functions ☐ Yes ☐ No ☐ Don’t Know
o Persistent and uncontrollable pain and suffering ☐ Yes ☐ No ☐ Don’t Know
o A loss of Dignity ☐ Yes ☐ No ☐ Don’t Know
o Other concerns (specify): ____________________________________________
Looking at the picture of Noel Conway wearing a breathing mask like mine in today’s Guardian article “Terminally ill Noel Conway loses challenge to assisted dying ban“, I can’t help but feel a profound sense of relief. I acknowledge that acquiring a progressive neuromuscular disability later in life as Conway did is different than growing up with one as I did, but his claim of being “entombed” by his illness is more a reflection of his personal psychology than objective fact. And, let’s face it, he’s had more time to adapt to these physical changes than someone with a high spinal cord injury who faces a sudden and complete change with no gradual process.
According to the Guardian article, Conway seems to believe that his only option without assisted suicide is a difficult death by suffocation or traveling to Switzerland. I’m not sure where he got that suffocation idea, but it is not consistent with the standard of medical care. Hospice and palliative care professionals have been facilitating comfortable deaths when breathing support is removed for at least three decades.
Phil Friend from Not Dead Yet, which intervened in the case, said:
“We’re pleased that the Court of Appeal upheld the decision of the Divisional Court which had refused the claim that the prohibition on assisted dying is incompatible with the Human Rights Act.
“We’re particularly pleased that the court recognised some of the concerns in our submission around the dangers of legalising assisted dying. These include issues such as safeguards for people who might be at risk of coercion, the difficulties in predicting death within six months, and whether any scheme might be extended (as has happened in Belgium).
“The debate will continue, but we remain firm in our view that assisted dying opens the door to risks and dangers driven by attitudes about disabled people and their lives. It’s worth noting that no disability charity or organisation is campaigning for a change in the law around assisted dying. We want support to live, not to die.
“We’ve seen two recent NHS reports which catalogue the systemic failures to provide appropriate care for disabled people, resulting in their premature and unnecessary deaths. Until disabled people are seen, and treated, as equals in our society, the law must protect them.
“Our thanks go to Fry Law and Cloisters Chambers, which provided pro bono representation.”
Not Dead Yet joins with other organizations representing the national disability community, as well as numerous civil and human rights groups, in condemning the Trump administration’s policy of separating children from their parents at the U.S.-Mexico border.
We have already seen stories of disabled children experiencing the effects of this cruel and horrific policy. Some are included in statements issued by our colleagues in disability rights:
Statement from the American Assn. of People with Disabilities is at this link
Statement from the Autistic Self Advocacy Network (ASAN) is at this link
Statement from the Disability Rights Education and Defense Fund is at this link
Statement from the National Association for Rights Protection and Advocacy is at this link
And we have heard the statements of child development and medical experts about the incredible psychological harm, profound emotional pain, insecurity, and post traumatic stress disorder for some, that will haunt the affected children far into the future.
News reports say that Trump just signed an order that the family separation policy will stop. This must happen immediately, and our government must do whatever it takes to reunite children with their parents as quickly and humanely as possible.
Sadly, we continue to fear that the administration is ill prepared to reunite families, reportedly having failed to keep track of the children they seized. We also fear that its plans for detention of families seeking asylum will continue a pattern of irreparable harm and injustice. The impact of these realities on children with disabilities is deeply concerning and, in some cases, where a parent’s knowledge of their child’s health is needed, it could be life-threatening.
Looking at the picture of Noel Conway wearing a breathing mask like mine in today’s Guardian article “