Disability activist slams right-to-die (RTD) law proposed in Minnesota

The Minnesota State House of Representatives and Senate are considering companion End-of-Life Option Act bills, and committee hearings have begun.  Since Minnesota is the state that will not permit even discussing end-of-life options among those who might want to decide the timing of their deaths with people who are experienced in how to achieve peaceful deaths on our own terms, it seems surprising that right-to-die (RTD) bills have been introduced in its legislature.  Nevertheless, opponents of the RTD are amping up their arguments against such legislation.  

John B. Kelly, a disabled man who uses a sip-and-puff switch to operate a wheelchair to afford him mobility, and is a prominent disability activist opposed to the right to die, views such laws as “too dangerous.” The points of danger he suggests can be summarized:

1.  According to Kelly, one medical journal has reported that as many as 15% of people diagnosed as terminal by clinicians outlive that prognosis; thus, these inaccurate prognoses lead to the premature deaths of some people who end their lives using RTD laws.  Kelly concludes, “Tragically, there are people who would be alive today but for their misplaced trust in a doctor’s prediction.”

Such deaths may be tragic, but a six-months-to-live prognosis is not the primary reason people use RTD laws to hasten their deaths.  Brittany Maynard received a six-month prognosis as a result of a brain tumor.  She died using Oregon’s RTD law when the headaches and other symptoms became unbearably severe.  She explained in a final Facebook post:

Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more.  

She died not because of the prognosis, but because of the symptoms of her disease.

She could have outlived the six-month prognosis, but chose to die to avoid the suffering and pain caused by the disease at a time when those symptoms became so severe that she could not have a quality of life acceptable to her.

In my experience with dozens of people who choose a hastened death, none of them do so because of a prognosis.  They hasten their deaths to avoid the irreversible symptoms that make their lives intolerable.  

In addition, many people who receive a terminal diagnosis and prognosis get a second (or third) opinion.  While two or even three clinicians may be incorrect about a diagnosis or prognosis, there is often some comfort to patients in knowing that more than one clinician has made the same diagnosis and agrees on the prognosis.

The main problem people with a terminal prognosis face is deciding the right time to die.  They balance their quality of life with the time they have left before they become unable to manage their own death.  Doctors are seldom involved with deciding when that time has come.  At the Final Exit Network (FEN), we term this time the “window of opportunity.”  If someone waits too long, they may be unable to carry out the final act that causes their death.  This difficult assessment may result in a “premature” death, but it is a decision within the control of the person who is dying, and it is almost always based on symptoms, not on a clinician’s prognosis.

2.  Kelly is concerned also about disability and elder abuse by those who might profit from the person’s death.  He writes,

Safeguards end after drugs get dispensed and, because no witness is required, heirs and abusers can engineer deaths without worry.  

I suppose abusers could benefit from the death, though that might depend on the reasons for the abuse.  Obviously, heirs could benefit monetarily.  Of course, no one knows how often or if such abuse occurs because the death occurs in private, observed only by potential abusers and heirs, if I follow Kelly’s logic.  But sick individuals have already convinced at least two doctors that they sincerely want to die.  What Kelly is questioning is when death occurs and on whose schedule, matters that should be in the control of the dying person as much as possible.

I know both disability abuse and elder abuse exist in our society.  Some of it is reported to legal and regulatory authorities and is a result of negligence or intentional harm.  Sick or disabled people may get bed sores from inadequate care, they may not be fed appropriately, they may not be kept clean, or they may be physically abused from frustration or sadistic impulses of a caregiver.  These forms of abuse can be readily determined and remedied by appropriate authorities, who should respond to abuse complaints.  But it is worth noting that most RTD participants in Oregon also use hospice services, which provide a further check on relatives and caregivers who are overzealous in favoring a too-hasty death.

The people I talk to who want to be able to end their lives when they decide never seem to want to die because of abuse.  They want to be able to die when their lives become unbearable because of disease and their quality of life is unacceptable to them.  I have never had anyone suggest that they want to die because of abuse by a caregiver or relative.  Suggestions of such motivations are mere speculation.  Citing a few questionable examples of such abuse taken from over twenty years of experience with the Oregon RTD law does not prove that it is widespread or an inherent problem with RTD laws.  However, I have argued previously that clinical social workers and clinical psychologists, because of their training and expertise dealing with family dynamics and psychosocial issues, would be better gatekeepers of the RTD process than are clinicians, whose role in the process would continue to be important.

3.  A third concern, which Kelly expressed in a letter to the Minneapolis Star Tribune earlier in October, is that using RTD laws is “the cheapest ‘treatment’ for serious illness,” allowing “assisted suicide [to fatten] insurers’ profits and [crowd] out traditional, more expensive treatment.”  Based on the data now available, we can’t know that the insurance companies will, as a policy, use RTD laws to increase their profits.  We do know that the purpose of all corporations and businesses is to make profits.  It shouldn’t surprise anyone that some of them do so at the expense of the health of their customers.  A handful of examples, many of which involve Medicaid regulations about the efficacy of certain drugs, will not support a blanket accusation against insurance companies, which often will not even pay for the lethal prescription used under RTD laws.

Inadequate insurance coverage is a problem not just for the dying or seriously ill.  It is a problem for all of us, except for our congressional politicians, who receive comprehensive government-provided health care as a benefit of their jobs, though they will not support such complete coverage for all other Americans.

Kelly’s solution to the medical needs of actively dying patients is for them to receive the palliative care offered by hospice, which does nothing for those patients whose pain is uncontrollable, a group that Kelly refuses to acknowledge even exists, or those for whom the quality of life, even with hospice care, is unacceptable.  He also mentions voluntarily stopping eating and drinking (VSED), a solution that requires constant care and, in most states, the mental competency to make a knowing refusal of such nutrition.  While Kelly also mentions palliative sedation, it is a rare procedure, though it may be available for a few patients.

I respect Not Dead Yet, the organization Kelly represents, for its work to improve conditions for the disabled.  But I don’t respect efforts to deny some of the most vulnerable people in our society the right to die on their own terms.  RTD laws are less dangerous to that vulnerable population than are those who would deny the disabled the right to make their own decisions about when, where, how, and with whom they choose to draw their final breaths.