On Wednesday, November 18, disability activists from Second Thoughts Connecticut as well as members of Progressives Against Medical Assisted Suicide participated in a press conference held by a broad alliance of assisted suicide opponents. The media event was held in response to a previous press conference conducted by assisted suicide proponents the same day.
Head and shoulders photo of Cathy Ludlum, a woman in mid 50s with glasses and wheelchair headrest.
Below are excerpts about and quotes from disability advocates, many of them featuring Second Thoughts CT leader Cathy Ludlum:
Opponents also held a press conference in the Legislative Office Building, where they called on legislators to reject the bill. Instead, they said the legislature should focus on improving hospice care.
Cathy Ludlum, a disability rights advocate with spinal muscular atrophy, said many of the concerns often cited in end-of-life debates stem from issues that some people with disabilities live with every day, like loss of autonomy or loss of dignity.
“Supporters often say each person is just one bad death away from becoming a proponent. I say if you had to fight for preventative care, aggressive treatment and sometimes for your life in the health care system the way we do, you might well come to our side instead,” Ludlum said. “The push for assisted suicide is not about pain. It’s about loss. It’s about fear of disability.”
…Others say the bill would have a negative impact on people with disabilities.
Nancy Alisberg, a disability rights lawyer at the time, was representing a 14-year-old boy who developed a severe form of leukemia. The boy also had an intellectual disability.
She says the doctors didn’t want to treat him as they thought he wouldn’t understand why he was suffering from the chemotherapy and that treatment would impair what residual intellectual capacity he had.
“What this incident showed me was that his life, as a person with an intellectual disability, was not worth living,” said Alisberg. “I feel that the laws on assisted suicide do not protect people with disabilities, and that they are going to be put into positions where they are being made to feel that they are an onus to their family, an onus to society, and they might as well just commit suicide. For that reason, I came to oppose physician-assisted suicide.” …
In a dueling press conference, opponents from the Connecticut Alliance Against Assisted Suicide also spoke out. They say the change in the law could create a threat to people with disabilities who could be taken advantage of for their estates….
….Opponents from the Connecticut Alliance Against Assisted Suicide say the lethal cocktail has not been tested.
“These drugs are being used outside of the scope and are experimental at best,” said Dr. Rebecca Henderson, End of Life Care.
They add lawmakers should focus on palliative care and hospice care.
“The push for assisted suicide is not about pain,” said Cathy Ludlow, Advocate for Disabled. “It’s about loss. It’s about fear of disability.”
Critics of the aid-in-dying — which include religious organizations and disability rights groups — have argued that even with robust protections, aid-in-dying laws in other jurisdictions have inevitably led to abuses and expansions to include patients who have not been diagnosed with terminal diseases.
“The ostensible safeguards in the legislation here in Connecticut are now called barriers in other states including Oregon and Washington, and are being removed through legislation and the court process,” said Cathy Ludlum, a disability rights advocate from Manchester.
DISABILITY RIGHTS ACTIVIST Cathy Ludlum and other opponents from the Connecticut Alliance Against Assisted Suicide spoke out against establishing a process for terminally ill patients in Connecticut to legally access life-ending medications.
“Once again, assisted suicide is bad medicine. It is bad public policy and it is bad for people,” said Ludlum, a leader of Second Thoughts Connecticut, grassroots group of disabled people and allies that opposes an end-of-life option.
“The push for assisted suicide is not about pain,” said Cathy Ludlum with Second Thoughts Connecticut, which has fought the legislation for years. “It’s about loss; it’s about fear of disability.”
“Assisted suicide cannot and will not stay limited to a select population,” said Cathy Ludlum, a disabilities rights advocate and staunch opponent of medically assisted suicide.
Ludlum said the eventual elimination of safeguards and expansion of medically assisted suicide is inevitable once legislation legalizes the practice. She called the proposed bill “bad medicine, bad public policy, and bad for people.”
“Supporters often say, ‘Each person is just one bad death away from becoming a proponent.’ I say, ‘If you had to fight for preventative care, aggressive treatment, and sometimes for your life in the health care system the way we do, you would likely join us on the opposing side,’” Ludlum said. “The push for assisted suicide is not about pain, it’s about loss. It’s about fear of disability.”
But many of the people present at the Capitol were disability advocates who feared that the bill would become a tool for a healthcare system that did not want to pay for costly treatment for disabled individuals.
“Assisted suicide cannot and will not stay limited to a select population. The ostensible safeguards in legislation here in Connecticut are now called barriers in other states, including Oregon and Washington, and are being removed through legislation or the court process,” said Cathy Ludlum, a resident of Manchester and a leader of a group of disabled individuals who are against the legislation.
Somers also referenced Canada, which has come under scrutiny for potential abuses of euthanasia.
“The question is how many struggling people will follow their lead, pressured by society and assisted by the health-care system to die,” Cathy Ludlum, of Second Thoughts Connecticut – a grassroots organization that opposes assisted suicide – said during a legislative hearing last year.
NDY’s Press Advisory issued Monday evening resulted in a Spectrum News interview of Albany disability activist Julie Farrar. The Advisory was distributed to New York media outlets in response to assisted suicide proponents’ announcement of a virtual press conference held Tuesday.
While giving more space to proponents’ hopes for passing the assisted suicide bill this year, Spectrum News coverage included video excerpts of the interview as well as the following quotes in the online article:
But not everyone is convinced. Julie Farrar of the organization Not Dead Yet said the legislation sends the wrong message, especially to people with disabilities.
Farrar believes the measure, in essence, tells people, “we are all cheaper dead, we are all less expensive if we need no treatment at all.”
Farrar said instead, lawmakers should consider ways of expanding health care and assisted living for vulnerable people.
“That makes living with a terminal illness very frightening if you don’t have access to the services you need,” she said.
For information on disability opposition to assisted suicide laws, read a short summary developed by NDY and the Disability Rights Education & Defense Fund.
No coverage of the assisted suicide issue is fair and balanced without the perspective of New York disability organizations and individuals who oppose it. (Proponents of bills to legalize assisted suicide will be holding a press conference at the state capital in Albany on Tuesday at 11:00 a.m.)
We live with a profit driven healthcare system facing tremendous cost-cutting pressures. Assisted suicide is the cheapest “treatment.” These bills grant legal immunity to doctors and others who assist suicides of people who may have a terminal condition. They do not prevent mistakes, coercion or abuse and, therefore, endanger the lives of old, ill and disabled people. In states that have legalized assisted suicide, the reported reasons for assisted suicide requests relate to disability, not pain. Suicide as “healthcare treatment” is not a progressive social cause but a threat that must be fought.
To speak with New York disability organizations and individuals who oppose assisted suicide bills, including members in Albany, please contact:
Recent Medscape Survey Indicates that Doctors are Divided on Life and Death Issues
by Lisa Blumberg
Medscape is an online resource for healthcare professionals. It provides medical news and information and does surveys on current issues. (1) Its 2022 survey of 4100 U.S. doctors on “Right and Wrong in Medicine: Life, Death and Wrenching Choices” (2) indicates how divided doctors are on so-called life or death issues.
I found aspects of the survey lacking in nuance and social context. For example, the survey does not touch upon whether consideration of healthcare inequities might alter a doctor’s view. There is one question on reporting a doctor for sexual harassment, bullying or racist remarks (3) but no question on ableism or implicit bias against patients with disabilities. This suggests that the latter concerns, although documented in studies (4) are not mainstream enough to ask doctors’ opinion on them. Also, Medscape seems to shy away from asking new questions in keeping with research. Some questions are ambiguous and are not qualified in the way they should be. This is probably one reason why “it depends” is such a common answer.
The survey does illustrate broad trends though and it is useful to read the survey in its entirety. Some of the reported comments are provocative but the better we understand doctors’ views, the better we can hone countervailing arguments. Below is a summary of the responses to the questions directly related to assisted suicide, withdrawal of treatment and futility as well as some brief thoughts on what this response may mean.
Should physician-assisted suicide be legal for terminally ill patients?
The responses were 52% yes, 27% no and 20% stated it depends. (5) In 2010 when a similar question was asked, the responses were 46% yes and 40% no.
It is interesting that the survey does use the term assisted suicide rather than one of the euphemisms used in the press and in legislation. It is also interesting that the survey does not ask whether an individual doctor would assist in a patient’s suicide. The question is framed in terms of legality. However, the increase in medical acceptance of assisted suicide is very troubling and indicates that the practice is being normalized. Doctors respond to public opinion and shifts in sentiments but the reverse is also true, i.e. doctors have political and social clout on issues deemed medical in nature. To a large extent, the public takes its cue from them. We need to continue working with our allies in the medical community to educate health care professionals on the corrupting influences of legal assisted suicide.
Should physician-assisted suicide be legal for patients in intractable pain?
The responses were 34% yes, 34% no and 33% stated it depends. (6) This represents some increase from 2018 when the responses were 27% yes and 40% said no.
Proponents of legalizing assisted suicide have repeatedly assured the public that “only” people close to death would be eligible… Yet these results indicate that two thirds of doctors would support permitting assisted suicide for other patients groups at least in some cases. This would follow the path of countries like Canada, Belgium and Holland.
Pain usually can be controlled. It is instructive to juxtapose the responses to this question with the responses to a later question as to whether a doctor would undertreat for a patient’s pain for fear of being sanctioned. (That question seems to be getting at a doctor’s willingness to prescribe opioids). In 2010, 6% of doctors replied yes, meaning they would undertreat pain. In the recent survey, 37% responded yes or it depends. Thus, there is both a substantial group of doctors saying they might knowingly undertreat pain and a substantial group of doctors saying that lethal prescriptions should be an acceptable solution for pain.
In any event, “patients in intractable pain” is, at least in part, code for allowing assisted suicide for people with chronic diseases or disabilities. The survey question seems to be phrased in a way to make it socially acceptable. However, severe pain is not a leading reason why people consider assisted suicide. People far more often request lethal prescriptions due to perceived lessening of autonomy, or feelings of being a burden. (8) Indeed, a recent study has shown that a fear of going into a nursing home is much more likely to fuel a desire to hasten death than pain is. (9) In Canada where euthanasia is permitted for people with disabilities, individuals have been candid that lack of in-home services allowing them to remain in the community has driven them to this awful alternative. (10)
We need to recognize how assisted suicide is likely to evolve if it becomes legal in a critical number of states. The public must not to be led believe the rhetoric of its supporters. We must continue to combat the “better dead than disabled” ethos in both the medical community and society.
Would you end life support at the family’s request if you think the patient might survive?
The responses were 18% yes, 35% no and 47% stated it depends. (11) In 2010, the replies were 55% no and 29% it depends. The question is so general that the respondents may be interpreting the question in different ways. How life support is defined and where is the person in all this? Can she communicate even if minimally? Did he indicate his wishes or values? The question behind the question is why a family would request this if they have been properly advised that the person might survive. Attitudes about disability are lurking here again.
It is extremely disturbing that so many doctors are now willing to consider withholding of possibly lifesaving care if family members so request. Perhaps, some are concerned about families bringing lawsuits if the person survives but with a permanent need for care. Be that as it may, this indicates that many doctors do not think that saving a life is a paramount goal and are willing to act on “quality of life” beliefs.
Some doctors and palliative care specialists are indeed concerned about “pulling the plug” prematurely (12) and these are the people disability rights activists need to work with to develop more oversight and guidance in cases of withdrawal of care. The present system leaves too much to discretion.
Would you provide life sustaining care at the family’s request if you think it is futile?
The responses were 44% yes, 15% no and 41% stated it depends. (13) These responses are essentially unchanged from 2020. Again, the question is so general that the respondents may be interpreting the question in different ways. The commentary itself points out that there are different definitions of futility and that some doctors will see futility even in situations where the care will be effective in saving a person’s life. It is somewhat incongruous that “life sustaining care” and “futile” are paired together. If the survey really wanted to get at doctors’ views, the question would be two questions, one referring to treatment which won’t appreciably delay death and one referring to treatment that will indeed save the person but the person will have disabilities.
When the replies to this question are compared to the replies to the previous question, the implications are that more doctors would be more willing to defer to a family’s request when the decision is for death than when the decision is for life. 65% of doctors would at least consider taking a person off life support even if there is a chance the patient might survive if that is what the family wants. On the other hand, 56% of doctors would at least consider refusing to provide life sustaining care at the family’s request if they deem it futile.
In conclusion, there seems to be no consensus among doctors about these issues and many appear to be conflicted. This is a cause for hope. There is a core of healthcare professionals that we should be able to work with. However, the trends are not going in our direction and this justifies our sense of urgency. The survey itself is frustrating. Some of the questions are too general and there seems to be an avoidance of the elephant in the room, i.e. attitudes towards disability and other devalued populations. The survey seems to be designed to get at what would be doctors’ decisions but not at the biases behind them. That is its fatal flaw.
There’s never a dull moment in NDY’s fight against the constant messages that we disabled people are better off dead – and society is better off without us. We couldn’t do it without the active involvement of disability advocates and organizations. We may be small but, because of your efforts and support, together we are leaving a big footprint. For more details about our work, please see our Annual Activity Report below. And, if you can, please consider making a year-end donation to help us continue the fight for our lives.
Not Dead Yet Annual Report: October 2021 – September 2022
The Center for Disability Rights continued to extend administrative support and sponsorship to Not Dead Yet (NDY), a national disability rights group founded in 1996 and headquartered in Rochester, New York since 2008. NDY is governed by a national Board of Directorsand employs five full- or part-time staff members, a President/CEO, Assistant Director/Policy Analyst, Director of Minority Outreach, New England Regional Director and Minority Outreach Assistant.
Publications: During the reporting year, NDY published 56 blog entries conveying a disability rights perspective on topics related to assisted suicide, euthanasia, medical ethics, third party decisions to withhold life-sustaining medical treatment and homicides of persons with disabilities. There were over 51,611 views of the website during the reporting year, and NDY posted 143 Facebook entries and 240 tweets. NDY created two video blogs on NDY topics, and a number of presentations were recorded on Zoom and made available. NDY wrote two articles in addition to the blog, published by a legal assistants’ magazine and by the Disability Visibility Project.
Media: National NDY issued three press releases and participated in two press conferences (CA and MA). NDY staff, board and affiliated activists authored 8 op-eds published in mainstream outlets. NDY staff and advocates submitted 3 letters to the editor at least one of which was published. Print and broadcast media coverage: NDY staff, board and advocates were interviewed for 8 TV, radio or podcast broadcasts. There were at least 26 print or online news articles covering NDY messaging, including in the Boston Globe, Hartford Courant, The Progressive Magazine, American Journal of Bioethics and Associated Press.
Systems Advocacy: NDY staff and advocates pursued several key systems advocacy policy initiatives during the reporting year, using a combination of strategies and approaches.
Assisted Suicide: NDY opposed assisted suicide laws or expansion through training, community organizing, legislative meetings, testimony and court efforts in 13 states (CA, CT, DE, FL, KS, MA, MN, NH, NV, NY, OH, PA and RI). Two direct actions with signs and leaflets were held in NY, and one in MA. No state passed a new assisted suicide law in the reporting year. NDY also continued advocating for House Concurrent Resolution 68 expressing Congressional concerns about assisted suicide laws.
COVID-19 and Crisis Standards of Care: Litigation continued in which NDY joined with NMD United and individual NY vent users in a civil lawsuit against the state (Not Dead Yet v. Cuomo) regarding a policy allowing reallocation of personal ventilators (filed Oct. 7, 2020). The case was dismissed for lack of standing and an appeal was pending at the end of the reporting year.
Opposing QALYs: NDY participated in the Partnership to Improve Patient Care’s Rapid Response Workgroup challenging the use of QALYs (Quality Adjusted Life Years) in health insurance coverage decisions. NDY supported Mass. H.201/S.753, An Act Advancing Health Care Research and Decision-Making Centered on Patients and People with Disabilities to ban QALYs, as well as advocated for a federal ban.
Court Cases: NDY and MA affiliate Second Thoughts opposed the Massachusetts Kligler court action seeking a constitutional right to assisted suicide, helping to organize a disability amicus brief and conducting public education, contributing toward a favorable result in the state’s highest court. NDY presented to 20 California lawyers on the assisted suicide issue, participated in legal meetings and public writing concerning various court cases, especially a euthanasia case brought under the ADA in the Northern District of CA.
Anti-Racism Work: NDY participated in the ongoing Racism Task Force of the National Disability Leadership Alliance, presented to the BIPOC Disability Collective, published a video interview with NDY’s Director of Minority Outreach concerning racism in treatment withholding practices, and published blogs by BIPOC staff and advocates.
Treatment Withholding/Withdrawal: Worked with CDR in opposing a NY “DNR Restoration” bill that would expand doctor/surrogate options to impose DNRs. Met with NY Senate Health Committee Director. Met about guardianship and health care decisions with the National Center on Advancing Person-Centered Practices and Systems (NCAPPS) and, separately, an attorney with The Arc.
NDY filed three formal public comments during the reporting period:
Submitted federal regulations.gov NDY comment on Section 14 (c) NPRM(11/12/21)
Submitted public comment for CMS-3409-NC re organ transplant discrimination (1/31/22)
Submitted CDC Opioid Guideline Comment (4/11/22)
NDY also signed onto 15 policy letters and position statements initiated by other organizations during the reporting year.
Conference, Workshop & Other Training Presentations: Not Dead Yet provided 14 video training presentations, workshops, university guest lectures and webinars.
Collaboration and Networking: Throughout the year, NDY participated in at least 167 meetings on a variety of committees involving NDY issues and related health care topics. These included, among others, NCIL’s Healthcare/PAS Committee, the NY Association on Independent Living Health Committee, Patients Rights Action Fund and the National Disability Leadership Alliance.
