Not Dead Yet Disability Advocates Critical of C&C’s Promotion of Death by VSED

What’s Wrong With Compassion & Choices’ VSED Campaign?  Voluntarily stopping eating and drinking (aka VSED) is being promoted in a new Compassion and Choices campaign to influence the decisions and behavior of individuals of all ages with disabilities, their family members and health care professionals.  C&C’s glowing portrayal of a peaceful death through VSED threatens to undermine the already stark inadequacies of suicide intervention for old, ill and disabled people.  Instead, the role of family and society should always be to affirm the value and inherent dignity of the individual and to strive to discover and alleviate any cause of suffering.


C&C Promotes VSED for Any Competent Adult, Whether or Not Terminally Ill.  C&C’s promotion of VSED is not limited to people who are diagnosed as “terminal,” but is for anyone “when physical decline and suffering become pointless and unbearable.”  The initial C&C VSED campaign has begun in Colorado with a press conference and presentations by Neil Rudolph, the son of Armond and Dorothy Rudolph, who reportedly died by VSED because they did not want to “lose their independence, die in a hospital or lie tethered to tubes and machines.”


People With Disabilities Are the Real Experts.  The disability community can readily empathize with chronic pain and the struggles to get the medical profession to address it with competence and commitment.  We can empathize with what it feels like to lose mobility and need help with daily tasks.  But we also know from experience that independence is not really about whether we need mobility devices or personal assistance, it’s about whether we have control over the way those needs are met.


Conflation & Con Jobs.  C&C misleads readers by bringing up the Rudolph’s concerns about dying in a hospital or lying “tethered to tubes and machines,” without acknowledging that the same “right to refuse” food and fluids C&C promotes also applies to hospitals, tubes and machines.


An Early Case of VSED and Disability.  The disability community encountered an earlier promotion of VSED by the Hemlock Society (prior to its renaming and merger to form C&C) in the case of Elizabeth Bouvia in the mid-1980’s.  Ms. Bouvia was a 26-year-old woman with cerebral palsy who had been through a miscarriage, marriage break up and other setbacks in her personal life.  She had gone to a local hospital, asking to be allowed to starve herself to death while receiving comfort care and pain medication.  The hospital refused but a Hemlock Society lawyer and co-founder, Richard Scott, took her case.  Miscarriage, marriage break up – if Ms. Bouvia had been non-disabled, she would have gotten some form of suicide prevention and support to get through those setbacks.  The discrimination was obvious to disability activists, but not to Hemlock, the media or the courts.


Problems in the Role of Medical Professionals.  C&C’s VSED campaign casts medical and psychological professionals in the role of determining whether the person is competent or capable, whether suicidal feelings are rational or the product of impaired judgment, and whether a particular physical condition is perceived as sufficiently below acceptable norms that it is “ethical” to ignore the typical professional duty to provide suicide intervention.  Reference to professional authority figures casts a glow of respectability on VSED advocacy.


The Disability Community Is Often More Skeptical About Medical Expertise.  Mistaken medical pronouncements, inaccurate predictions and incredibly ignorant characterizations of life with disability are prevalent.  Studies consistently show that physicians underestimate our quality of life compared to our own assessments.   Effective suicide intervention involves deep questioning of the stated desire to die in order to identify the causes and alleviate them.  And, indeed, research shows that this type of intervention is effective with people who are terminally ill and request assisted suicide.  Unfortunately, it may be difficult to provide genuine suicide intervention when the medical professional actually imagines life with severe disability to be an unacceptable fate worse than death.


Problems in the Role of Family Members.  C&C calls upon families to facilitate a relative’s death by VSED.  C&C would have us ignore the widely reported negative impact of caregiving on families and the even more disturbing prevalence of elder abuse, and assume that family assistance of VSED would always be altruistic and unselfish.  In that view, there would be no need, for example, to try to address someone’s feelings of lost autonomy or fear of being a “burden” on family by providing consumer controlled home and community based long term care services.


Social Devaluation.  It’s no surprise that people often feel that losing physical or mental abilities deprives one’s life of meaning and purpose.  This is the pervasive message of the dominant culture to all people with disabilities.  The socially assigned role of people with significant health impairments and disabilities could be compared to the inferior status assigned to women or children in some cultures.  What may be most needed by someone acquiring disabilities is persuasive and convincing affirmation of his or her continued value and belonging within a family.  Instead, C&C’s VSED campaign provides permission and a rationale for family members to support suicide by VSED.


A New Routine:  Putting Us Out of Their Misery.  The C&C blog launching VSED sums it up as follows:

We hope to awaken and empower people with the knowledge that their own doctor has the ability and legal authority to manage a peaceful death. …When those conversations happen routinely, …. [t]hen families will be able to sit beside their loved ones as they leave this earth in a way that reflects and honors the values they lived by. …[T]hey will grieve loss of the beloved, but rejoice in the peace and dignity with which they left.

As politicians increasingly label as “unsustainable” the costs of meeting the needs of an aging population, C&C’s VSED campaign paints a positive face on a socially facilitated death for old, ill and disabled people.


A Cautionary Note About Third Party Decisions.  The C&C VSED campaign will increase acceptance of withholding food and fluids among health care providers and the general public, and risks increasing its use through surrogate decisions and unilateral provider decisions (under futile care policies) on a non-voluntary and involuntary basis.


Society at a Crossroads.  By framing suicide by VSED as an individualistic and courageous act of self-determination, by carving out a professional exception to the typical duties of suicide intervention, and by offering family members an altruistic sounding rationale for accepting the suicidal feelings of an old, ill or disabled relative, C&C’s campaign threatens to further weaken the already declining societal commitment to meeting the sometimes costly but very real human needs of seniors and people with disabilities.