What Can We Do When A Hospital Plans To Involuntarily Withdraw Life Support?

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Friday night, I got a phone call from a woman who said that a Minnesota hospital had stated its plan for Monday at 1:00 pm to discontinue providing oxygen to her friend, Catie, a woman with lung cancer who stated that she wants to live and keep getting oxygen.

NDY sometimes gets calls like this from people describing similar situations, most of whom are shocked by their experiences. Sometimes I can ask questions that help clarify a few issues, but the main thing we try to do is help identify potential advocates, lawyers and resources located where they are, advocates who will hopefully get directly involved. The woman who called also recorded a video of Catie expressing her wishes.

Of the resources that we and the caller were able to reach, Life Legal Defense Fund was first to step in. They issued a press release which includes the video link and states:

Hospital to euthanize woman who says “I want to LIVE”

Catie is a patient at a hospital in Minnesota. She has lung cancer and needs oxygen to remain comfortable. The hospital plans to remove Catie’s oxygen tomorrow morning, which will result in her death by suffocation.

Catie is on video saying she does not want the hospital to “pull the plug.” She relayed this to the hospital’s chaplain, who was sent to Catie’s room by the hospital to prepare her to be euthanized. Even though the hospital has been sedating Catie, she understands what the hospital is planning to do and says she is still fighting and is “not ready” to die.

We are appalled that a hospital would even consider withdrawing oxygen from a patient who has clearly communicated that she wants to live. When asked if she wants her oxygen removed, Catie’s response was “NO! I want to live!”

Withdrawing Catie’s oxygen to cause her death is active euthanasia, which is illegal in Minnesota and every other state.

Life Legal is evaluating legal options at this time.

Link to video: https://youtu.be/42rVk-wz1Hg

As of Tuesday, April 30, Catie is still alive.

 

NDY Demands Prohibition On Use of QALYs To Limit Health Coverage

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Not Dead Yet is deeply concerned by the New York Legislature’s failure to protect people with disabilities from discrimination in the budget passed this week.  Despite widespread criticism from the disability community, the Legislature incorporated language in the budget authorizing the state to use third party assessments, including those relying on the discriminatory and harmful Quality Adjusted Life Year (QALY), to limit access to prescription drugs for individuals on Medicaid.

Not Dead Yet has long opposed the use of the Quality Adjusted Life Year, which calculates the value of disabled life as a percentage of the value of the life of a non-disabled person. QALYs were firmly rejected in 1992 when the State of Oregon was denied permission to use QALY assessments in their Medicaid program due to the newly passed Americans with Disabilities Act. The Affordable Care Act prohibited the use of QALYs in the Medicare program and in the Patient-Centered Outcomes Research Institute (PCORI). Unfortunately, the state seeks to circumvent these restrictions by relying on third-party QALY assessments conducted by the Institute for Clinical and Economic Review (ICER), an organization that conducts QALY assessments on each new drug brought to market.

New York’s Medicaid Drug Cap empowers the state to restrict access to medications that exceed the cost assessed as reasonable by the state’s Drug Utilization Review Board. This poses a serious concern for people with disabilities, who often depend on such medication in order to survive and thrive. Already, the Drug Utilization Review Board has used QALY assessments in their assessment of Orkambi, a crucial medication for people with cystic fibrosis.

While we support measures to reduce the price of prescription drugs, we do not believe that people with disabilities and chronic conditions should be held hostage in negotiations between pharmaceutical companies and insurers, be they public or private. In addition, we firmly reject any role for the QALY in assessing the value of the medications that many in our community rely on as a matter of life or death.

Not Dead Yet urges state policymakers in New York and across the country to reconsider this ill-advised approach to value assessment and to prohibit the use of Quality Adjusted Life Years in state decisions around coverage, access, incentives and reimbursement. This prohibition should be broad based, applying both to direct state decisions and the use of third-party assessments that rely on QALYs.

People with disabilities deserve better than discriminatory and harmful restrictions rooted in an outdated and offensive idea that our lives are worth less than those of the general population. Not Dead Yet urges policymakers and advocates to act to address this grave risk to our community.

Mike Reynolds’ Op-Ed Published On the Eve of Maine Assisted Suicide Hearing

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In the Bangor Daily News:

I can’t believe I’m still fighting against assisted suicide

By Mike Reynolds, Special to the BDN • 

In what seems like a lifetime ago, I began my activism against assisted suicide in a small dorm on the University of Maine campus in Orono, never imagining that I’d still be arguing the same points about such a flawed law that was enacted in Oregon in 1997. That year I went to Washington, D.C., to protest outside the Supreme Court (on a day that was bitter cold by even Maine standards) as they heard the Vacco v. Quill case, which challenged the constitutionality of New York state’s ban on assisted suicide.

A year later I testified in front of the Maine Legislature for the first time against assisted suicide. By then, it had been defeated a handful of times. It failed that year as well, and voters soundly defeated a referendum on the same legislation in 2000.

VICTORY IN CT! Second Thoughts CT leads successful effort to stop assisted suicide bill in committee

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For the 5th time in 7 years, disability rights advocates, led by Second Thoughts CT , have thwarted a Connecticut bill – this time it was HB 5898 – to legalize assisted suicide. Not Dead Yet provided testimony and social media support, and New England Regional Director John Kelly joined the radio show “The Full Story”, on March 26, to debate legislative sponsors of assisted suicide bills in Connecticut and New York. (Diane Coleman submitted testimony detailing her own mistaken prognosis, and John Kelly concentrated on how the bill denies people real choice through misdiagnosis, treatment coverage denial, and so on.)

Second Thoughts CT, like its namesake Second Thoughts MA, is a grassroots group focused on opposing efforts to legalize assisted suicide. The group joins conservatives and progressives, disability advocates and professionals, into a potent force that left one prominent proponent “beyond disappointed” in a year passage was expected.

Second Thoughts CT members crashed the proponents’ press conference, securing media coverage as the bill’s opponents. The group held a press conference just prior to the hearing on March 18, and then testified against the bill. A week later, it held a lobby day to reach members of the Public Health Committee.

Disabled cofounders of the group Cathy Ludlum and Stephen Mendelsohn took complementary roles. While Stephen researched, helped organize, and handled social media, Cathy personally moved legislators and media with her powerful, incontestable, testimony from the perspective of a severely disabled woman. She told the health committee that disabled people would be “collateral damage” in any assisted suicide program. (See the NDY blog on Cathy’s testimony.)

Attorney Lisa Blumberg wrote against the bill in CT Mirror , observing, “If the selective writing of lethal prescriptions was a valid medical practice, as proponents assert that is, there would be no reason for laws to immunize medical professionals from suffering any consequences from  doing so.” Members Blumberg and Joan Cavanagh lobbied, organized, and submitted testimony.

Long time Not Dead Yetter Elaine Kolb of West Haven, who showed up in one of her Not Dead Yet T-shirts, told committee members, “Keep your poison pills, We’re not dead yet. And don’t make it easier for people to kill themselves.”

Cathy Ludlum said, “It has been a privilege to work with such a great group of people as we fight this bad legislation year in and year out. Thanks to everyone at Second Thoughts CT, our national partners at Not Dead Yet and DREDF, and to the legislators who stood strong.”

[And thanks to John Kelly for this recap of a brilliant effort by all.]

Cathy Ludlum: “We will be the collateral damage” of assisted suicide

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PUBLIC HEALTH COMMITTEE
Testimony regarding HB 5898
An Act Concerning Aid in Dying for Terminally Ill Patients

March 18, 2019

Senator Abrams, Rep. Steinberg, and members of the Public Health Committee:

My name is Cathy Ludlum, and I am one of the leaders of Second Thoughts Connecticut, a group of people with disabilities and allies who are working to prevent the legalization of assisted suicide. I am here to oppose HB 5898.

Let me start by explaining why the disability community is working so hard across the country to stop legislation of this type.

Nobody wants people to be in pain, desperate, and feeling that they have no control over what is happening in their lives. Believe me, those of us with disabilities know what it is to feel like you have no control.

But the harsh reality is that we will be the collateral damage in any formalized death-by- choice system. Many of us with severe and obvious disabilities are already too frequently thought of by medical practitioners as having reached a final stage, where death might be expected in the near future.

If we go to the hospital, we bring friends. We have to.

This will be even more true now that the Connecticut State Medical Society has dropped its opposition to assisted suicide. The last thing we need is for practitioners to have in the back of their minds, “Maybe it’s time for ‘Aid in Dying.’” If the CSMS will not advocate for good medical practice, who will?

It is reasonable to ask why a disabled person would choose a doctor who does not seem willing to fight for his or her life and health. Unfortunately, people are not always in a position to choose their own doctor. Private insurance often requires that the patient see a doctor in their network, or pay for the privilege of going out-of-network. Not every physician accepts Medicare or Medicaid, so again, choices can be limited.

Further, if a person lands in the hospital, he or she will be treated by doctors unfamiliar with the individual’s situation. This is what happened to my colleague, William Peace. He was hospitalized with a deep and grossly infected pressure sore. As a paraplegic, both his life and his quality of life were in serious jeopardy. A doctor spoke to him about devastation he would face as a result of this pressure sore: loss of job, bankruptcy, at least six months and probably more than a year in bed, and complete dependence on others, most likely in a nursing home. The doctor offered Bill the choice of refusing antibiotics, promising to make him “comfortable.” Bill refused. Many of those terrible things did happen, but eventually Bill recovered and resumed his life as a college professor. Assisted suicide was not an option in that state at that time, but the story demonstrates that the doctor believed Bill would be better off dead. 1

Any physician will tell you that medical science is inexact, at best. Sometimes predictions are slightly off, but sometimes they are off by decades. Look at the case of John Norton, a member of Second Thoughts Massachusetts. He was diagnosed with ALS when he was 18 years old. The diagnosis was verified by the prestigious Mayo Clinic. For some reason the progression of his disability stopped, and he was 74 when he submitted testimony to a Canadian court in opposition to assisted suicide. By then, he had a wife and children, and was retired from a successful career. Yet he testified that if assisted suicide was available in the 1950s, he would have taken advantage of it. Think of all he would have missed based on what was a reasonable prognosis for his condition. 2

We can spend time talking about problems with the proposed legislation.

  • Believe it or not, I would qualify as terminal under the definition given in Section 1, 19:

    “Terminal illness” means the final stage of an incurable and irreversible medical condition that an attending physician anticipates, within reasonable medical judgment, will produce a patient’s death within six months.

    Nowhere does it say “with or without treatment.” Most people assume this legislation is for people who have exhausted all their treatment options, but that is not what it says. I eat with a feeding tube and use respiratory support when I am sleeping. Without these treatments, I would not last six months. I would probably not last six days. What is to prevent someone like me from showing up at a doctor’s office and saying, “I have had enough. I will be stopping all my treatment”? While the typical population would receive suicide prevention services at that point, this person would be more likely to get compassionate nods of approval. 3

  • “Competent” is defined as allowing a third party to speak for a patient with a communication disability if that person claims to be “familiar with a patient’s manner of communicating.” What is to protect a patient with very difficult communication from having an exhausted caregiver misrepresent his or her wishes?
  • The proposed legislation says the prescription “may” be self-administered, not that it “shall be.” There is no language preventing another person from administering the prescription.

Unfortunately, adjusting the legislative language does not help. Proponents say that with adequate safeguards, no one is at risk. But in reality, no package of safeguards has ever or CAN ever be developed that will provide 100% protection from misdiagnosis, incorrect prognosis, coercion, or the devaluation of the lives of disabled people.

Finally, proponents’ repeated statements that there have been no problems with the Oregon and Washington State assisted suicide systems are false. There may be times when everything goes the way it is supposed to, but with over 1500 people dying under the law, it is hard for me to believe that no one died under questionable circumstances.

Even Dr. Katrina Hedberg of the Oregon Department of Human Services (who is a supporter of the state’s Death with Dignity law) said, “We are not given the resources to investigate [assisted-suicide cases] and not only do we not have the resources to do it, but we do not have any legal authority to insert ourselves.” Those words may be comforting to people whose want total privacy, but they send chills up my spine. We as a society cannot just set this in motion without any mechanism to protect people who will inevitably be taken advantage of. Privacy is certainly important, but so is balance, and there is no balance in this legislation.

The Disability Rights Education and Defense Fund has written a report showing that the safeguards in the Oregon and Washington State laws have not always been effective, and that assisted suicide does not always result in a peaceful death. 4

Is it acceptable for some lives to be shortened because people are acting on a wrong prognosis, or because they are pressured into making this final move, so that others can exercise what they see as a personal right? The last thing my colleagues and I want is to interfere with anyone’s choice. But when this choice becomes legislation that poses a direct threat to us and to others in our network, we must emphatically say NO.

Even if you support this legislation in concept, there is just no way to avoid having some people die for the wrong reasons.

HB 5898 is bad medicine, bad for people, and bad public policy. Please stop it from moving forward.

Thank you for your consideration.

Sources:
1 William J. Peace, “Comfort Care as Denial of Personhood” http://infiniteability.yolasite.com/resources/Hastings%20report_Peace.pdf

2  John Norton, “Affidavit in Opposition to Assisted Suicide and Euthanasia” http://www.massagainstassistedsuicide.org/2012/09/john-norton-cautionary-tale.html

3  Carol J. Gill, PhD, “Suicide Intervention for People with Disabilities: A Lesson in Inequality” https://pdfs.semanticscholar.org/196b/2ab9f5a29e2e41e7958d35c055a26d5f4386.pdf

4  The Disability Rights Education and Defense Fund, “Some Oregon and Washington State Assisted Suicide Abuses and Complications” https://dredf.org/public-policy/assisted-suicide/some-oregon-assisted-suicide-abuses-and- complications/