Renowned ethicist testifies on behalf of disabled, against discrimination


Last Tuesday, renowned Bioethicist Wesley J. Smith was among a long list of supporters for Texas Right to Life’s priority legislation Texas Senate Bill 675.  The proposed legislation would reform the Texas Advanced Directive Law of 1999 by ensuring that life-sustaining medical treatment is not denied or withdrawn because of discrimination against an elderly, disabled, or terminally ill patient. 

Because of his work in the field of bioengineering and numerous award-winning books and columns, Wesley Smith gave expert testimony in favor of SB 675 once being invited by Texas Right to Life.  Smith is known for his work with the Patients Rights Council and is also a special consultant for the Center for Bioethics and Culture.  He is renowned nationally and internationally for his work regarding human exceptionalism and medical ethics. 
Mr. Smith has previously addressed and criticized the current Texas Advanced Directives Law, and his support of SB 675 shows the pressing need for true and fundamental reform.  The elderly and disabled are at risk in Texas under the current law, and Smith joins Texas Right to Life in working to protect all Texans from gross quality-of-life discrimination.  
SB 675 is authored by Senator Kelly Hancock and supported by many Pro-Life and disability rights groups.  Below is the testimony Smith gave on March 19 before the Senate Health and Human Services Committee. 
The following is a transcript of Mr. Smith’s testimony.  
Testimony of Wesley J. Smith, JD, before the Texas Senate Health and Human Services Committee in Support of S.B. 675, March 19, 2013
Good afternoon.  My name is Wesley J. Smith.  I am a lawyer, author, and consumer advocate.  I am a senior fellow at the Discovery Institute’s Center on Human Exceptionalism, and a consultant for both the Patients Rights Council and Center for Bioethics and Culture.
For the last twenty years I have been deeply engaged internationally in public policy debates about the most important bioethical issues facing our nation and global community.  These include researching and writing about the ongoing erosion of Hippocratic medical values in bioethics involving areas such as assisted suicide, end-of-life medical treatment, and other areas of concern.  I am the author or coauthor of 12 books, including Forced Exit: Euthanasia, Assisted Suicide, and the New Duty to Die, which was first published in 1997 and now in its third edition.  I also wrote Culture of Death: The Assault on Medical Ethics in America.  Culture of Death was named “Best Health Book of the Year” at the 2001 Independent Publishers Book Awards.  Both books deal substantially with the issues involving end of life care.  I have also written extensively in the professional and popular media about matters involving bioethics, human exceptionalism, and the intrinsic equality of all human life.  My biography is attached to my testimony.
My work in the fields about which I advocate is entirely secular, which I believe is appropriate to the creation of public policy in a nation governed by the rule of law. 
I appear today to urge this committee to support SB 675.  It is my understanding that the primary purpose of the bill is to prevent Texas’ medical futility law from being applied in an invidiously discriminatory manner against the elderly or patients with disabilities or terminal illnesses.  I can think of no reason to oppose such protections from being instituted into Texas law.
It is a sad commentary on our times that Hippocratic values and the sanctity/equality of life ethic are under threat in an age of growing utilitarian values, particularly dangerous in the health care context.  Indeed, articles promoting forms of medical discrimination against certain categories of patients are published regularly in the most respected medical and bioethical journals as a way of controlling the surging cost of health care.1
What is meant by the term, “quality of life,” as applied to health public policy and medical practice?  In Clinical Ethics, bioethicist Al Jonsen and his co-authors write, “In general, the phrase expresses a value judgment: the experience of living, as a whole or in some aspect, is judged to be ‘good’ or ‘bad,’ ‘better’ or ‘worse.’”2
Such issues are, of course, a proper part of medical decision making.  For example, I once snapped a knee ligament while skiing.  My orthopedist told me that I could have it repaired surgically, but that it would be a delicate and painful process that would take more than a year to heal.  My other option was to simply quit skiing and engaging in other sports requiring lateral movements.  I decided to give up the slopes because I believed that choice best protected my life’s quality.  However, if I had been in constant pain, I probably would have made a different decision.  The same kind of cost/benefit analysis goes into most serious medical decisions, such as whether to accept a last-ditch round of chemotherapy or ask for medical technology to extend life.
The problem with the concept of quality of life arises when it ceases to be a factor in medical decision-making by the patient and becomes, instead, a determinate of moral worth and a concomitant justification for refusing wanted treatment (or other forms of discrimination in the medical context).  When applied in this manner, it is often called the “quality of life ethic,”—which stands in direct contradiction of the sanctity or equality of life ethic that underlies Hippocratic medicine.  Princeton bioethicist, Peter Singer—an advocate for the quality of life concept—describes the approach in his book, Rethinking Life and Death:
We should treat human beings in accordance with their ethically relevant characteristics.  Some of these are inherent in the nature of being.  They include consciousness, the capacity for physical, social, and mental interaction with other beings, having conscious preferences for continued life, and having enjoyable experiences.  Other relevant aspects depend on the relationship of the being to others, having relatives for example who will grieve over your death, or being so situated in a group that if you are killed, others will fear for their own lives.  All of these things make a difference to the regard and respect we should have for such a being.3
The danger of Singer’s approach should be obvious to every legislator.  The standards Singer uses to measure human worth are his standards based on what he considers important and “relevant.”  And therein lies the heart of the problem faced by those deemed to have a “low” quality of life: Subjective notions of human worth, in the end, are about raw power and who gets to do the judging.
In our not-so-distant past, for example, decisions denigrating the moral worth of a subset of people, i.e., blacks, were deployed to justify their oppression and exploitation based on the allegedly relevant characteristics of skin color and cultural stereotypes.  The quality-of-life ethic is no different—only the “relevant characteristics” have changed, not the wrongness of the approach.  Quality of life, as a moral measure, strips worth and dignity from people based on health, age, or disability, just as surely as racism does based on skin pigment, hair texture, or eye shape.
Not surprisingly, disabled people are especially worried about a quality-of-life yardstick for measuring moral worth: They are the targets!  “Many in society consider disability as worse than death and a drain on our limited resources,” says attorney Diane Coleman, a disability rights activist and the founder of Not Dead Yet, a national organization that battles medical discrimination against disabled people and resists the legalization of assisted suicide.  “There is a great revulsion against disabled people that is visceral.  This disdain is masked as pity but many people believe that in an ideal world, disabled people wouldn’t be there.”  
That being true—and who can deny it—what would happen to the rights of disabled people if decisions to withhold care were based on such discriminatory attitudes?  Coleman worries, “Anti-disabled bias would become especially dangerous.  If it becomes respectable to label us ‘inferior’ or even, ‘less human’ based on perceptions of the quality of our lives, it will become acceptable to oppress, exploit, and even kill disabled people.”4
To some degree, this is already happening.  People with disabilities are seriously discriminated against in health care as well as in other areas of life.
So are the elderly.  For example, a former Obama Administration adviser recently wrote in the New York Times that the time may have come for “death panels” to be applied against the elderly as a way of controlling costs.  Thus, Steve Rattner wrote:
We need death panels.  Well, maybe not death panels, exactly, but unless we start allocating health care resources more prudently — rationing, by its proper name — the exploding cost of Medicare will swamp the federal budget.
Rattner’s answer?  Ration care to the elderly—which is a form of discrimination based on quality of life by a polite name:
No one wants to lose an aging parent.  And with price out of the equation, it’s natural for patients and their families to try every treatment, regardless of expense or efficacy.  But that imposes an enormous societal cost that few other nations have been willing to bear.  Many countries whose health care systems are regularly extolled — including Canada, Australia and New Zealand — have systems for rationing care.  Take Britain, which provides universal coverage with spending at proportionately almost half of American levels.  Its National Institute for Health and Clinical Excellence uses a complex quality-adjusted life year system to put an explicit value (up to about $48,000 per year) on a treatment’s ability to extend life…We may shrink from such stomach-wrenching choices, but they are inescapable.5
Texas’ medical futility law is supposed to be about protecting patients from inappropriate treatments, not consigning disfavored categories of patients to discrimination.  But these issues do not arise in a vacuum.  There is no question that Futile Care Theory (as I call it) is symbiotically attached to cost of care issues.
SB 675, then, is an appropriate and common sense preventative to allowing withholding treatment decisions to stray into discriminatory territory by ensuring that invidious views and concepts do not become the basis for refusing life-sustaining treatment.
The growing concern about cutting costs in health care has exacerbated the threats to the vulnerable in the health care context.  Indeed, discriminatory views combined with the desire to cut costs—primarily those incurred by the most expensive patients—have the makings of the proverbial perfect storm.
S.B. 675 can calm the increasing winds.  It prohibits doctors from withdrawing life-sustaining treatment because the physician believes that extending the life of an elderly, disabled, seriously ill, or chronically ill patient does not have a life of equal value to other patients—and hence, is not worth the cost of the treatment.  It also prevents the worry about further disability associated with providing treatment to the basis for removing care.  Such a law will further the interests of the people of Texas being viewed as individuals—rather than as members of discriminatory categories—best in keeping with the importance of accepting universal human rights and Hippocratic medical values.
In this sense, S.B. 675 is a necessary and non-intrusive prophylactic that will deter physicians from misapplying their rights under Texas law to withhold “futile” treatments and provide a common sense remedy if that should occur.  Indeed, I view the bill as nothing less than a civil rights measure intended to protect the most defenseless and vulnerable Texans.  As such, it has my wholehearted support.
Thank you for the opportunity to present my views.  I will be happy to answer any questions you might have.

1. For example, the New England Journal of Medicine editorialized in favor of adopting the “quality adjusted life year” (QALY) into healthcare decision making and coverage determinations.  Roughly stated, QALYs value the lives of patients differently based on issues such as disability, age, health, and prognosis when making cost-benefit analyses.  See, Peter J. Neumann, Sc.D., and Miltion C. Weinstein, Ph.D, “Legislating against use of Cost-Effectiveness Information,” NEJM, October 14, 2010. 
2. Albert R. Jonsen, et. al., Clinical Ethics, 4th ed. (New York, McGraw Hill, 1998), p. 108.
3. Peter Singer, Rethinking Life and Death, (Cambridge, Cambridge University Press, (1993) p. 191.
4. Quoted in Wesley J. Smith, Culture of Death: The Assault on Medical Ethics in America, (New York, Encounter Books, 2000), pp. 28-29.
5. Steven Rattner, “Beyond Obamacare,” New York Times, September 16, 2012, 

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