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The Answer Is Not Medically Assisted Suicide – Disabled People Demand Full Civil, Human Rights

Click here for a PDF image scan of the article and the page it appears on in the Quincy Sun. The full, screen reader accessible text of the article is below.]

by John B. Kelly for The Quincy Sun, August 18, 2022

38 years ago an accident left me paralyzed below my shoulders. My father was brokenhearted and wished I had died instead. His hopelessness about my life, however painful for me, was but a simple reflection of widespread prejudice against disabled people.

A few years after my injury, Jack Kevorkian became a sort of folk hero for “helping” terminally ill people die through his “self deliverance” machine. It later came out that more than two thirds of his clients were not terminal at all, but disabled people, primarily women, in psychological distress.

Over time, as medicine has focused increasingly on patient “quality-of-life” as a barometer of life-worthiness, death has been recharacterized as a benefit to an ill or disabled individual. Most physicians (82%, a Harvard study recently found) view our “quality-of-life” as worse. Disability advocates have raised concerns about the fate of disabled people like Oregonian Sarah McSweeney and Texan Michael Hickson. Both wanted to live, both were loved by family and caregivers, but they died after hospital personnel denied them treatment based on their disabilities.

Over the last 25 years first Oregon, then additional states and Washington DC established assisted suicide programs for people expected to die within six months. Proponent rhetoric has focused on compassion for people’s physical pain and suffering, and the hope of a choiceful, peaceful end.

The reality, as shown by the top five reported “end of life concerns” in Oregon, hinge not on pain, but on people’s “existential distress,” as one study termed it, in reaction to the disabling features of their illness: depending on and feeling like a burden on other people, losing abilities, losing the respect of self and others (“loss of dignity”), and shame over incontinence.

Prominent bioethicist Thaddeus Pope concedes that “Everybody who’s using medical aid in dying is disabled. And probably you could go to the next step and say the reason they want medical aid in dying is because of their disability.” To Pope, any disability a patient finds “personally intolerable” is sufficient reason to assist their suicide.

In Massachusetts, assisted suicide bills have been put forward every session for the last 20 years. Proponents proclaim strong public support for the measure, but that support is shallow. In the weeks leading up to the 2012 ballot question on assisted suicide, polls showed 64% support.* The ballot question lost, 51%-49%.  Now supporters say that 77% of Massachusetts residents support the bill, based on a poll question seeking compassion for terminally ill people “to end their suffering,” with its implication of physical pain.

State House Speaker Ron Mariano declared “We have a very divided House of Representatives. There’s not a 77 percent affirmative vote in the House right now.”

With the end of the legislative session on July 31, the bill died.

Disability rights advocates appreciate the willingness of many legislators to take our concerns seriously. We worry, with death reframed as a benefit for severely disabled people, that increased legalization will bring expansion of eligibility. Pope points out that the US is unique in the world for limiting assisted suicide to terminal people, and that every other jurisdiction, including Canada, offers euthanasia on demand to non-dying disabled people. He predicts that non-terminal disabled people will become eligible in the US. In Canada, disabled people have been euthanized because they were denied needed care or couldn’t find safe housing for multiple chemical sensitivities.

There are unsolvable problems with all assisted suicide laws. First, real choice resides with insurers, whose bottom line favors delay or denial of treatment. Dr. Brian Callister reported trying to refer two patients for life-saving but expensive procedures in Oregon and California, only to hear that the insurers limited coverage to hospice and assisted suicide.

Second, when people feel they have lost their dignity and feel like a burden on others, they are vulnerable to pressure and outright coercion to sacrifice themselves for others benefit. Abuse yearly affects one in 10 elders, exacerbated by COVID-19 restrictions. A self-interested heir can push a patient to make the request, serve as a witness along with a “friend,” pick up the drugs and, because no disinterested witness is required at the death, administer the drugs themselves. The law grants immunity to anyone who assists in the death who say they acted “in good faith.” Deadly abuse goes unpunished and unnoticed.

Third, terminal prognoses are notoriously inaccurate. NPR reported a few years ago that nearly one in five people who enter hospice survive the six-month benefit. Oregon revealed last year that just 4% of patients live past six months, meaning that the difference between 4% and almost 20% represents the body count of people who weren’t really dying. People who oppose capital punishment because of the inevitability of executing an innocent person should take note.

The 2012 Massachusetts ballot results and the patient demographics in states like California show there is a social class, race, and ethnicity component in the use of and support for assisted suicide. A 2013 Pew Research Center study showed that Blacks oppose assisted suicide by 65%-29%, and Latinos by 65%-32%. Majority Latino Lawrence voted 69% against the 2012 question, while white working class towns like Taunton and Gardner also opposed. Wealthier, whiter Massachusetts towns voted heavily in favor. In California, 94% of reported assisted suicides have been by non-Hispanic whites, more than twice the group’s share of the state population. Almost no black people have used the program.

The answer is to address people’s real needs. That means a fully funded Medicare home care benefit to reduce burden and keep people out of nursing homes. It means more and better palliative care. And for people whose discomfort cannot be otherwise relieved, there is the option of palliative sedation, whereby a person is sedated to the point of comfort while the dying process takes place.

The answer is not medically assisted suicide. We disabled people demand full civil and human rights, equal protection under the law, equal suicide prevention, and more respect throughout society.

John B. Kelly is the director of Second Thoughts MA

*Note to readers: in the hardcopy version of this essay, John Kelly wrote that polls showed 68% support for the 2012 Ballot Question 2 weeks before the election. The relevant Suffolk University poll, however, taken September 17, 2012, shows that support at 64%. We made the change to the accurate number.

Read The Answer Is Not Medically Assisted Suicide – Disabled People Demand Full Civil, Human Rights.

Not Dead Yet also published the article.


Mike Fahey on MA bills

Mike, a Massachusetts resident, researches the role of money in health care, and brings his expertise to his opinions below.

Here is a list of issues with House Bill 2381 and Senate Bill 1384. Not only are there NO protections, but the bills deliberately protect the people who could do harm.

  1. The Act states there shall be no coercion.  How will anyone know, especially if the patient is already dead?  The witnesses to the patient requesting the lethal “medication” only must verify the patient’s identity and do not have to know the patient.  Lines 108 -102 
  2. The penalty for coercion, i.e., making someone make a request, not letting it be known the patient has rescinded their request, or forcing someone to take the lethal “medication” is a $1000 fine or up to 2 1/2 years in jail or up to 3 years in prison.  Lines 300-304
  3. Only a patient with a legal guardian is not allowed to request the lethal medication.  A patient with a Healthcare Proxy can request lethal “medication”.  A Healthcare Proxy will not be notified if the patient makes a request to take lethal “medication”. Line 28
  4. Spouses and family members do not need to be notified when someone makes a request for lethal “medication”. Lines 172, 223-225
  5. Although coercion is not allowed, anyone, including a healthcare provider in a position of power and trust, is free to suggest to the patient that they should consider taking the lethal “medication”.  If a patient had a Healthcare Proxy, the Proxy would have to be notified before any discussion about healthcare options could take place, but not with lethal “medication”.
  6. The Act states that taking lethal “medication” shall not be called “suicide” or “assisted suicide”.  It is understandable why this might be needed for life insurance purposes, but could a spouse or family be told to cause of death? Lines 259-267
  7. Two witnesses, one of which must be supplied by the nursing home if the patient is in one (Lines  112-113), and the other, which could be supplied by a lethal “medication” advocacy group such as Compassion and Choices, must be present when the request for lethal “medication” is made, but no witnesses are needed when it is administered.
  8. The Act states that any health care practitioner at a facility that provides the lethal “medication” service who does not want to participate in facilitating lethal “medication” will have their name entered into the public disclosure record furnishable to anyone upon request.  Could this lead to harassment? Lines 280-295
  9. If the family is not told by the patient in a nursing home of their request for lethal “medication”, and it is self-administered, the family will only be told that the patient died of the underlying condition that led to the 6 months to live prognosis.  Lines 259-267
  10. The number of requests for lethal “medication” made, the number of requests administered, and the number of requests rescinded, along with disability, demographic, and socioeconomic background of all patients in Massachusetts will be recorded but nothing will be recorded about the circumstances of any individual patient.  The names of the witnesses, the consulting physician, the mental health professional, all of whom may come from a lethal “medication” advocacy group, will remain anonymous and protected.  Why the double standard compared with point 8 above?  Lines 249-253
  11. Compassion and Choices states the 25% of people die in uncontrollable pain.  This is not true when Hospice and Palliative Care are used.  In Palliative Care, medication, usually opioids, is given in sufficient quantity to relieve pain.  In the final stages of cancer, for example, it is quite common for the palliative drip to contribute to death.  However, this is qualitatively and ethically very different from someone who is not in pain and has just received a bad diagnosis taking lethal “medication”.  The reality today is there is no need for anyone to die in uncontrolled pain.  In fact, when people are on palliative care, they often experience much less anxiety because pain is alleviated
  12. In data gathered from Oregon Death With dignity Act (DWDA) (often cited as an example by Compassion and Choices), the majority of patients report the reason for wanting to end life are loss of autonomy (93.0%), decreasing ability to participate in activities that made life enjoyable (88.7%), and loss of dignity (73.2%).  Using these reasons as a legal justification for ending life raises very serious concerns from people in the disabled community.  In fact, the term “uncontrolled pain” and the image of people dying in agony is primarily used to justify passing legislation allowing lethal “medication”.
  13. The Act states that the witness supplied by the nursing home shall not be an owner, operator, or employee of the nursing home.  Today, with the massive takeover of nursing homes by private equity (aka hedge funds), nursing homes are becoming a maze of small intertwined LLC’s, all delivering individual services, such nursing, pharmacy, rehab, food, and other aspects of nursing home care.  By design, it is virtually impossible for an outside observer to know who owns and controls the nursing home.  It is also very simple for witnesses to come from any of the other LLC’s controlled by the hedge fund running the nursing home.
  14. Compassion and Choices states that there is no issue with paying for nursing home care since everyone can get Medicaid when insurance and Medicare run out.  The issue is that after someone who received Medicaid in a nursing home dies, then all assets, including homes and savings, are taken by the state to help reimburse Medicaid.  This puts tremendous pressure of elderly by their families to not lose everything and go into Hospice instead.  It is bad enough when people are pushed into Hospice in these situations.  This bill will make a bad situation much worse and much more convenient to ‘save the house and the bank account’.
  15. Some nursing homes operate on very low cost to be profitable with Medicaid reimbursement.  Many other nursing homes cost more than Medicaid reimburses and primarily operate on private insurance.  The more expensive nursing home do not want a Medicaid patient in their facility as Medicaid will typically only pay about 70% compared to a private payer, and will be financially incented to suggest lethal “medication” to a patient whose insurance runs out..
  16. The Bill says that patients who can communicate with providers may do so via “individuals who are familiar with the patient’s manner of communicating”.  How will anyone know if the request for lethal “medication” is what the patient is communicating or what someone else wants them to say?  Lines 14-15
  17. The drugs being used for the lethal “medication” are the same ones (variants of secobarbital, pentobarbital, phenobarbital, diazepam, digoxin) used for lethal injection on death row.  The Bill warns that in most cases it will take up to three hours for the dying process from lethal medication to complete and in some cases it will take longer (Lines 130-132).  Oregon reports up to 104 hours (see Table 4).  There are numerous instances of botched agonizing deaths with lethal injection on death row and numerous courts have halted lethal injection as cruel and unusual punishment.  If these lethal “medications” have such a terrible track record when injected, what makes people think it will be better when taken orally?  This is not a “peaceful” death as described in the patient request form in the legislation. (Line 126)
  18. Massachusetts needs legislation focused on making Palliative Care available to everyone in Massachusetts who needs it.  This will not be as good as allowing everyone access to Universal Healthcare, but it could help stop any unnecessary suffering for the terminally ill.
  19. Massachusetts needs legislation for nursing home reform including a living wage and benefits for all nursing home workers, restrictions on the takeovers by hedge funds and corporate shell companies, transparency on nursing home care and abuse investigations, ability to monitor patients with webcams (i.e., granny-cams), and much more.
  20. Massachusetts needs legislation to allow families to get reimbursed with a living wage and benefits for care provided at home for loved ones.  This will be a much less expensive alternative than nursing home care which costs on average $170K/year in the greater Boston area.
  21. This is not progressive legislation. This is legislation to streamline the process of using the elderly and infirm as cash machines for hedge funds, insurance companies, and pharmaceuticals. When the cash runs out of the cash machines, this Bill will make it easier to just get rid of them.