Lisa Blumberg: Recent Medscape Survey Indicates that Doctors are Divided on Life and Death Issues

December 29, 2022"end of life", aid in dying, assisted suicide, futile care, futility, Health care decision-making, healthcare rationing, life-sustaining treatment, Our News & Commentary Blog, passive euthanasia, quality of life judgments, treatment withdrawalassisted suicide, futility, Surrogate decision making, treatment withholdingDiane Coleman

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.

FOOTNOTES

NDY’s Year End Review and A Heartfelt Request

December 27, 2022Annual Report, better dead than disabled, donations, Our News & Commentary BlogAnnual Report, donateDiane Coleman

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.

Press Release: Disability Rights Advocates Cheer High Court Constitutional Ruling Against Assisted Suicide

December 21, 2022aid in dying, assisted suicide, court decisions, end-of-life options bills, john kelly, Massachusetts, Not Dead Yet, Our News & Commentary Blog, Press Releases, Second Thoughtsaid in dying, assisted suicide, court decision, Not Dead Yet, press release, Second ThoughtsDiane Coleman

Disability Rights Advocates Cheer High Court
Constitutional Ruling Against Assisted Suicide

CONTACTS: John Kelly at mailto:SecondThoughtsKelly@Gmail.com 617-952-3302

Jules Good (mailto:JGood@NotDeadYet.org)

Boston, MA – Tuesday, December 20, 2022

Disability rights advocates from Second Thoughts MA and Not Dead Yet are cheering Monday’s decision by the Massachusetts Supreme Judicial Court (SJC), which ruled against plaintiff doctors Roger Kligler and Alan Steinbach in their lawsuit to declare assisted suicide a state constitutional right.

“This is a victory for disability rights,” said Second Thoughts director John B. Kelly. “Everyone who is terminally ill is already or will soon be disabled, and deserves the same level of suicide prevention services as everyone else.

“We appreciate the court’s reference to the amicus brief filed by the Disability Rights Education and Defense Fund (DREDF) and thank the state disability organizations who joined the brief (list on page 2).”

Not Dead Yet president Diane Coleman said, “Neither the U.S. Supreme Court nor any state high court has found a constitutional right to assisted suicide. The prohibition against assisted suicide protects the lives of all disabled people, including the terminally ill.”

Not Dead Yet Director of Minority Outreach Anita Cameron said, “Black people overwhelmingly oppose assisted suicide and don’t use it, and we don’t trust white elites with their newfound concern for how we die, when as the late comedian and activist Dick Gregory said, they never cared about how we live.”

Not Dead Yet Assistant Director Jules Good said, “As we have seen in Canada, granting assisted suicide and/or euthanasia as a fundamental right has resulted in the unnecessary deaths of disabled people who lack access to housing and proper healthcare. Through this decision, the Massachusetts Supreme Judicial Court has chosen to protect our most vulnerable neighbors and recognize the value of disabled lives.”

Second Thoughts member Ellen Leigh said, “I supported assisted suicide until I learned that it is all about disability – the top five reasons in Oregon involve depending on others, feeling like a burden, and shame – ‘loss of dignity.’ We all have inherent dignity and do not lose that when we become ill and disabled. Bringing ‘dignity’ into this only increases feelings of shame and burden for choosing to live.”

“We thank the court for its insistence that ‘physician-assisted suicide’ is the only correct and accurate phrase. Proponents and media alike should stop confusing people with pleasing euphemisms,” said Second Thoughts member Mary Makuc.

“Now let’s talk about fully funded home care so old, ill, and disabled people can live at home in the community, not feel like a burden on unpaid family members,” said Second Thoughts member Brian Shea.

Members of the two groups held an action on October 13 in front of the SJC to remind people that this matter belongs in the legislature, receiving coverage from Boston’s Neighborhood Network News, along with an interview with Not Dead Yet Assistant Director Jules Good.

Second Thoughts MA: Disability Rights Advocates Against Assisted Suicide organized in 2012 and helped defeat the 2012 Ballot Question 2 for the legalization of assisted suicide. The group has successfully lobbied against every assisted suicide bill since.

Not Dead Yet is the leading national disability organization opposing assisted suicide laws, futility judgments, and “better dead than disabled” policies. The group organized in 1996 to help stop Kevorkian, whose victims were overwhelmingly disabled and not terminal.

Disability Rights Organizations who Joined DREDF Amicus Brief:

National Organizations

•Disability Rights Education and Defense Fund
• The Arc of the United States
• American Association of People with Disabilities
• Assn of Programs for Rural Independent Living
• Autistic Self Advocacy Network
• Autistic Women and Nonbinary Network
• Disability Rights Legal Center
• National Council on Independent Living
• Not Dead Yet
• National Organization of Nurses with Disabilities • TASH
• United Spinal Association
• World Institute on Disability

Massachusetts State Organizations

• The Arc of Massachusetts
• Disability Policy Consortium
• Independence Associates
• MetroWest Center for Independent living
• Second Thoughts Massachusetts
• Stavros Center for Independent Living, Inc.

Victory Against Assisted Suicide In Massachusetts Supreme Judicial Court!

December 19, 2022aid in dying, amicus brief, assisted suicide, court decisions, dredf, john kelly, MAID, Massachusetts, Our News & Commentary Blogassisted suicide, court decision, Massachusetts, Second ThoughtsDiane Coleman

Following the precedent in the U. S. Supreme Court and several state high courts, the Massachusetts Supreme Judicial Court ruled in the Kligler case, rejecting the plaintiffs’ claim that assisted suicide is a constitutional right.

“Although we recognize the paramount importance and profound significance of all end-of-life decisions, after careful consideration, we conclude that the Massachusetts Declaration of Rights does not reach so far as to protect physician-assisted suicide.3 We conclude as well that the law of manslaughter may prohibit physician-assisted suicide, and does so, without offending constitutional protections.”

Not Dead Yet was one of nineteen disability organizations that joined in an amicus brief filed by the Disability Rights Education & Defense Fund.

We’ll cover this great news more in the coming weeks.

NDY’s John Kelly Among Those Featured in Boston Globe Article on Assisted Suicide

December 15, 2022"death with dignity", assisted suicide, boston globe, court cases, end-of-life options bills, john kelly, Massachusetts, Our News & Commentary Blog, palliative careDiane Coleman

Boston Globe photo caption and credit: Disability-rights advocate John Kelly, director of Second Thoughts Massachusetts, at his Fenway apartment. The group opposes what it calls “assisted suicide.” Barry Chin/Globe Staff

Voices from the ‘right to die’ debate

By Robert Weisman Globe Staff,Updated December 11, 2022, 5:20 p.m.

In anticipation of the upcoming reintroduction of an assisted suicide bill in Massachusetts, Boston Globe reporter Robert Weissman had a pro assisted suicide [“medical aid in dying”] article and sidebar appearing on page 1 in the online version on the evening of December 11th. The main article is entirely proponent arguments, while the sidebar piece includes both proponent and opponent arguments.

Lead article: https://www.bostonglobe.com/2022/12/11/metro/lawmakers-citing-new-momentum-plan-reintroduce-right-to-die-bill-january/#bgmp-comments

Sidebar: https://www.bostonglobe.com/2022/12/11/metro/voices-right-die-debate/

Not Dead Yet’s John Kelly was included in the voices featured in the sidebar article. Here is the excerpt reflecting some of John’s perspective:

Disability-rights advocate John Kelly, who lives in Boston’s Fenway neighborhood, is director of Second Thoughts Massachusetts, a group opposing what it calls “assisted suicide.” He’s also a quadriplegic who injured his spinal cord in a sledding accident 38 years ago.

Kelly, 64, has testified against medical aid-in-dying legislation and organized a rally against the appeal to legalize it through the Supreme Judicial Court. He condemns a “better dead than disabled” mindset he sees in those distressed about loss of control at the end of their lives.

“Proponents say it’s about pain and suffering,” Kelly said. “But it’s relatively privileged people’s response to their own disability and dependence on others.”

Folks with disabilities often grapple with a lack of access to health care and home care services, he said. “Everyone should receive effective palliative care,” he said. “But we also believe people should be able to stay in their home and have adequate care there. This is really a values discussion masquerading as a medical issue.”