NDLA Organizers Forum: Chronic Pain, Opioids, and Disability

Our News & Commentary Blog, palliative care,

NDLA ORGANIZERS FORUM: Chronic Pain, Opioids, and Disability

TUESDAY, AUGUST 21, 2018
1-2 pm Eastern time, 12-1 Central time, 11-12 Mountain time, 10-11 am Pacific time


Call-in: 1-515-739-1285
Passcode: 521847#

To join through your computer, go to: https://www.freeconferencecall.com/wall/organizersforum


Chronic pain is a major issue for many disabled folks. In light of recent efforts to curb opioid abuse and overdoses, people with chronic pain have been facing increasing barriers to adequate pain management. This call will talk about the major issues people with chronic pain are facing right now and how the disability community can better advocate around these issues. September is Chronic Pain Awareness Month, so it’s an important time for us to learn what actions we can take in our communities.

Speakers: 

Eiryn Griest Schwartmann, Chronic Pain Advocate 

Sarah Blahovec, National Council on Independent Living (NCIL) Disability Vote Organizer and Chronic Pain Advocate

Lindsay Baran, Policy Analyst and Chair of NCIL’s Chronic Pain/Opioids Task Force

Please forward to your lists ASAP. (Be sure to include computer link and passcode to CART below.)

To give us an idea of who joins our calls, if you are interested in joining on Tuesday, please fill out this quick form! https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dHAxWEV5Y3h3MUtrcW1LYXhTcjZyYUE6MQ 

CART: The call will have real-time captioning (CART)! The website where you will be able to view the captioning is https://2020archive.1capapp.com/event/forum/.Thank you to the National Disability Leadership Alliance for sponsoring the captioning of this call.

If you need additional accommodations to participate in the call, please let us know as soon as possible. 

MARK YOUR CALENDARS! The Organizer’s Forum has a call on the 3rd Tuesday of each month, 1-2 pm EST (10-11 am PST).

NOTE: We have a listserv for discussion on these issues. It’s organizersforum@yahoogroups.com; please go to: http://groups.yahoo.com/group/organizersforum/ and click “Join this group!” We also have our separate announcement-only listserv to allow everyone to easily get notices about the Organizer’s Forum, called disabilityorganizing@googlegroups.com. Please email us to be added.We also have a Facebook page! We can use this is a way to continue our conversation beyond the monthly calls. Please “like” Organizer’s Forum on Facebook. http://www.facebook.com/profile.php?cropsuccess&id=680444432#!/pages/Organizers-Forum/228971863811531?sk=info

Background:

The Organizing Workgroup of the National Disability Leadership Alliance hosts these calls the third Tuesday of every month as a resource for disability organizers, in an effort toward building the organizing capacity of the disability community across the country. They generally follow the format of a Welcome followed by 2-3 experts in a given area speaking for a few minutes on their experiences, advice and challenges. The calls include a 20-30 minute question and answer period.

To ask questions via CART: Sign-in to the Chat function on the right side of the transcript and type your question.  One of the call facilitators will read out any questions posted there.

Because we want to maximize the generously donated CART services, we will begin the call promptly at 1pm and end the call promptly at 2pm (eastern time).

Anita Cameron – ADAPT and Not Dead Yet: In Solidarity

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Not Dead Yet works with disability organizations around the nation in the fight against doctor assisted suicide.

One of these organizations is ADAPT, a national, grassroots disability rights organization working to ensure the civil rights, liberty and freedom of disabled people of all ages to live in our own homes in the community, rather than in nursing facilities or institutions.

ADAPT is in strong solidarity with Not Dead Yet that doctor assisted suicide is bad public policy. In fact, over 20 years ago, ADAPT was the first national disability group to join NDY in protests against “Dr. Death” (Jack Kevorkian) and in a friend of the court brief filed in the U.S. Supreme Court.

Why? Because ADAPT understands that people seeking the suicide drugs in Oregon cited loss of autonomy, feelings of being a burden, loss of the ability to engage in activities, loss of the ability to control bodily functions and loss of dignity as the top reasons for wanting to die. These are disability issues, not just terminal illness issues. Attendant care services and other supports in one’s home are the solution to this, not doctor assisted suicide!

ADAPT knows that assisted suicide sets up a two-tiered system of suicide prevention where non-disabled folks who express suicidal feelings receive suicide prevention services, while older, disabled and sick people are encouraged to seek doctor assisted suicide. The California legislature just passed AB 282 directly saying that it’s okay to “encourage” people to request assisted suicide!

ADAPT realizes that as assisted suicide spreads to states with diverse populations, Blacks, people of color and poor people will be especially vulnerable to assisted suicide due to disparities in healthcare delivery, including discrimination in prevention, treatment and pain relief.

ADAPT is aware that insurance companies are concerned about their bottom line. It’s all about the money. It’s far less expensive to kill someone than to care for them. Insurance companies in Oregon and California, where doctor assisted suicide is legal, have already denied patients lifesaving cancer treatments and offered assisted suicide instead.

For these and other reasons, ADAPT is firmly in solidarity with Not Dead Yet in vehemently opposing doctor assisted suicide. Access to services and supports at home, counseling and palliative care should be available to those who need it, rather than assisted suicide.

ADAPT is also working hard to promote the Disability Integration Act (HR 2472 and S 910) which would give people with disabilities and seniors the civil right to receive attendant services and other supports at home, instead of in institutions. It addresses many of the concerns of those who would feel they have no option but assisted suicide by assisting people to live, for whatever time they have, rather than assisting them to die.

 

NDY Public Comment On Guardianship Urges More Rights Protections for Disabled & Elders

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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.

To review the entire NDY comment, go here.

Sarah Cavar: Germany Grapples With Assisted Suicide In Courts and Parliament

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Head and shoulders photo of youthful person with a close cropped haircut, wire rimmed glasses and black, blue and white plaid shirt.
Sarah Cavar

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.

California’s 2017 Assisted Suicide Report: What Do They Have To Hide?

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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): ____________________________________________