Buck v Bell at 90 years old

Last month marked the 90th anniversary of Buck v Bell. Justice Oliver Wendell Holmes wrote the Supreme Court decision that ruled that Virginia’s sterilization law was constitutional and infamously stated regarding the litigant Carrie Buck, “Three generations of imbeciles are enough.”

In his 2016 book Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck (Penguin), Adam Cohen goes over the facts of the case as seen through its main characters. The picture that Cohen paints is grim. In his telling, by the time Carrie Buck’s case reached the Supreme Court, she did not have a chance to prevail. The system from top to bottom was wired against her. She was merely a trial case to establish the legality of state-sanctioned sterilization for the ‘feeble-minded,” leading to the sterilization of between 60,000-70,000 people.

Cohen’s book has received mixed reviews on stylistic grounds, some saying it spends too much time on one part of the story and not enough time on other parts. That said, none of the reviews I read suggests that he gets the story wrong.   Given the role that eugenics plays throughout Carrie’s story, this is especially chilling, because the book is more than history, it is a warning to those who want to remake humanity in their own image.

Cohen, a graduate of Harvard Law, states at the outset, “Another reason Buck v. Bell cannot be left in the past is that unlike so many of the Supreme Court’s worst rulings it has never been over-turned . . . In the twenty-first century, federal courts are still ruling that the government has the right to forcibly sterilize—and citing Buck v. Bell” (12).   While we would like to think something like this will never happen again, history does not allow us that luxury.

For those of us interested in bioethics, Cohen puts the matter plainly: “… Buck v. Bell remains critically important because its deepest subject is a timeless one: power, and how those who have it use it against those who do not” (12). If we devalue a person simply because they do not meet our standard of what a person should be, we are all devalued.   The story of Carrie Buck needs to be told and retold, and I am grateful to Cohen for retelling it.

 

 

 

Undermining the USPSTF: The most important stakeholders are the patients

A strange “health care” drama plays out daily in our clinics and hospitals. A healthy person has a medical test done (even though he or she is healthy): a blood test, a chest x-ray or mammogram, maybe an ultrasound of some body part. The test comes back abnormal. The patient (for she has now gone from being a healthy person to being a patient) is struck with worry, and undergoes a further round of testing to determine whether the initial, “screening” test was accurate. This more invasive, risky definitive testing causes the patient pain, complications, infections, further procedures to fix the complications. But the testing shows that the original screening test was wrong, and the patient is relieved of their worry and overcome with a sense of gratitude: “Yes, the follow-up surgery was painful, but at least it’s not cancer.” However, notice what caused the worry in the first place: not some symptom that they were experiencing, but a test that was performed on a healthy person. What a marvelous bit of sorcery: we take a happy patient, create unnecessary worry, then win their undying gratitude by performing risk-laden procedures on them to remove their worry!

There is something very intuitive about the concept that detecting a disease (especially cancer) early leads to better outcomes, that screening tests are inherently good. Yet when one studies the actual outcomes of implementing mass screening programs in a population of people who have no signs or symptoms of a particular disease, one finds to one’s surprise that, not infrequently, more people are harmed by our screening test than are helped (See: PSA testing, carotid ultrasounds, annual stress tests, etc). This harm may take many forms: worry, invasive procedures with all the risk they bring, radiation exposure, disfiguring treatments, stroke, even death. Yet there is no shortage of promoters of various tests that capitalize on our intuition that “More testing is better.”

In steps the United States Preventive Services Task Force (or USPSTF), a group of experts in preventive medicine and primary care (since it is mostly primary care providers who order screening tests). Their task is to examine the scientific evidence of the potential risks and harms of preventive strategies like screening tests, and to make recommendations based solely on that evidence. They strive to use the best scientific data available to benefit the most people possible. Even when their recommendations are unpopular (because they go against our intuition that more screening is better), they have a large effect on what tests are performed — and what tests insurance will pay for.

This week the USPSTF recommended against screening for thyroid cancer in people without symptoms. The data show that screening has found lots of thyroid cancer that never would have been found otherwise. The data also show that screening has not produced a reduction in death from thyroid cancer or an increase in quality of life. What it has produced is an increase in harms, such as injuries to vital nerves from the increase in thyroid surgery. Who knew?

Now there is legislation pending in Congress proposing that “stakeholders” — that is, specialists and industry representatives — be included in the membership of the USPSTF. This is a very bad idea. Consider: What do specialists like thyroid surgeons (who are not experts in screening for thyroid cancer; rather, their livelihood is tied to operating for it) or drug and device manufacturers (who sell the tests and ultrasound machines used to screen for thyroid cancer) add to the USPSTF’s process?  The main thing “stakeholders” (that is, people with a financial interest in seeing the test done) add is a conflict of interest. Whatever difference such “stakeholders” make would be tilted to the advantage of the few who stand to profit from the screening, and to the detriment of the many in the population who would be harmed from the screening. The USPSTF’s work must not be transformed from a transparent procedure that seeks to minimize harm into a get-rich-quick scheme.

All We Need is (Unconditional) Love

On March 24, 2017, Joe Gibes posted an entry on this blog, entitled “A ‘disabled’ person speaks out against a particular form of discrimination.”[1] That post featured links to several stories about Kathleen Humberstone, a young woman with Down Syndrome who spoke at a recent UN event commemorating World Down Syndrome Day, which was observed on March 21.

After reading through Joe’s post and the stories to which his post links, I’d like to add the following two very basic observations (which I will only state here – further elaboration shall have to await another time):

  • OBSERVATION #1: Thankfulness and disability are entirely compatible – indeed, one can be genuinely thankful for one’s disability. “Thank you Down’s syndrome!” Kathleen says enthusiastically, in her prepared remarks for the UN event.[2] It’s hard to imagine she doesn’t mean this sincerely.
  • OBSERVATION #2: As Hans S. Reinders has said repeatedly,[3] often the thing that people with profound intellectual disabilities need most is simply to be chosen as friends. This point is easily generalizable to persons with any kind of disability—very often, what we “need” most is simply friendship, not “healing” or “relief” or “freedom” from the (supposed) “burden” of disability itself.

With continued developments in prenatal genetic testing techniques, including the relatively recent advent of non-invasive prenatal testing (NIPT), it has become even easier to detect, at earlier and earlier points in pregnancy, the presence of disabilities such as Down syndrome. And this, of course, opens the door to so-called “selective termination” of unborn children who test “positive” for such conditions.

For Denise Humberstone, Kathleen’s mom, this makes no sense whatsoever. Why shouldn’t we accept all persons, Denise wonders, including those with Down syndrome and other disabling conditions, with the same kind of unconditional love that we would offer to any other, nondisabled person?

“Whatever happened to unconditional love?” she asks. “When did society decide we should want and love a child only if it is as perfect as medical research allows?”

In a Facebook post[4] written just prior to Kathleen’s speech at the UN event, Denise addresses the “unrealistic demands for perfection” that appear to drive so many of these decisions to abort unborn children diagnosed with Down syndrome and other disabilities:

I’m also wondering if in parallel to scientific research, these unrealistic demands for perfection stem from the fact that we are also now living in a world where we can not only get anything we want off the internet but that item always comes with a return form should it not be up to your expectations. Not perfect? Bam! Return it, free-post, no questions asked, item will be replaced in no time….

What are we teaching our children? People are worthy of life and love only if they are perfect? We can’t cope with children unless they’re perfect? Your marriage/partnership won’t last unless your children are perfect? Siblings will be ok as long as they are all perfect? I can assure you that my friends are not happier because they don’t have a child with special needs…. There is always something to be unhappy about, it’s human nature.

So why can’t we just go back to the basics and try and love unconditionally? Why can’t we just deal with the hand we’ve been dealt… and rise up to the challenges that life throws at us?

Around the same time as Joe posted his blog entry about Kathleen Humberstone, quadriplegic and disability advocate Joni Eareckson Tada posted a blog entry[5] about World Down Syndrome Day. Here’s what she wrote:

I love smiling children… the image imparts such hope and joy, reminding us we are all made in the image of God. I especially delight in the smile of a child with Down syndrome. Anyone who has rubbed shoulders with someone who has Down syndrome will rave about the love, openness, and zest for life they bring to every family. Their laughter and joy is infectious. Today, as we celebrate World Down Syndrome Day, I’m reminded of a touching video I saw two years ago – titled “Dear Future Mom,” it shows children and teens with Down syndrome. Each has something brief and sweet to say about their disability. Then, they look into the camera and address the worries of any pregnant woman who is fearful about carrying a child with Down syndrome.

This video blessed me so much, I just had to share it with you. Perhaps you know of an expectant mother who has learned her baby has a genetic disorder. Please share this with her – the smiles on the faces of these young people will ease fears and give hope, helping her welcome her precious baby into the world.[6]

In the end, Kathleen Humberstone and the children and teens featured in “Dear Future Mom” remind us of what we all need the most: unconditional love.

 

[1] See http://blogs.tiu.edu/bioethics/2017/03/24/a-disabled-person-speaks-out-against-a-particular-form-of-discrimination/.

[2] http://www.bbc.co.uk/newsbeat/article/39339338/downs-syndrome-teenager-addresses-the-un-in-geneva

[3] See, for example, his Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics (Grand Rapids, MI: Eerdmans, 2008).

[4] https://www.facebook.com/denise.humberstone/posts/10155948159319126?comment_id=10155950465429126&reply_comment_id=10155950568324126&notif_t=feed_comment_reply&notif_id=1488705525554890

[5] http://www.joniandfriends.org/blog/world-down-syndrome-day-2017/

[6] “Dear Future Mom” can be viewed here: https://youtu.be/Ju-q4OnBtNU.

How to make Nazi doctors

Most people who go into medicine have as at least part of their motivation the desire to help other people. I’m sure this was as true in 1930’s Germany as anywhere else. So how did a cadre of Nazi doctors come not only to commit crimes against humanity, but also to defend the moral correctness of their conduct when placed on trial for those crimes? The answer is complex, but one way was through the teaching of medical ethics.

An article in the April 18th Annals of Internal Medicine tells a cautionary tale for teachers and learners of bioethics. Entitled “Lectures on Inhumanity: Teaching Medical Ethics in German Medical Schools Under Nazism,” the article details how the Nazi party developed a curriculum for teaching ethics in medical schools that “was intended to explicitly create a ‘new type of physician’ . . . trained to internalize and then implement the Nazi biomedical vision . . . shifting the focus of ethical concern and medical care away from the individual patient and toward the general welfare of society or the people.” The curriculum included lectures in racial hygiene, the science of heredity, population policy, military medicine, and the history of medicine. Only long-standing members of the Nazi party were appointed lecturers. The lecturer at Berlin University, Rudolf Ramm, wrote the ethics textbook used in the curriculum, which emphasized physician paternalism in practicing their moral obligation to rid society of certain groups, and asserted that every (Aryan) person in Germany had a moral duty to stay healthy.

The article’s authors write, “The Nazis neither ignored nor abandoned medical ethics. Instead, they implemented their own version of it in order to substantiate their health policies and secure physicians’ allegiance. . .  an ethic that turned away from the individual and instead emphasized the well-being of the community. . . [They] reinterpreted the Hippocratic Oath for their purposes . . . [drawing] an analogy between the German people and a sick patient . . . so that the Hippocratic Oath seemed to fit with Nazi medical ethics: Exterminating Jewish persons, disabled persons, or patients with hereditary diseases was acceptable in order to heal the organism of the German people.”

The article’s authors draw the conclusion that “we should not rely on the existence of ‘eternal’ or ‘universal’ values in medicine because it is not the medical profession alone that determines the medical ethos but also the moral climate in society, the system of government, and its political goals.” However, this seems to me backwards; it is precisely because society, government, and politics are so fickle that it is vitally important that the practitioners of this art cling tenaciously to the universal values stated so simply and starkly in the Hippocratic Oath: I will not kill, whether in the womb or out of it. I will protect patient privacy.  I will treat everyone with the same regard, regardless of their status. Real Hippocratism should have been a resistance movement against Nazism; it should be again now against the forces that are threatening to deform the medical ethos. If we do not hold fast to these values and teach subsequent generations of doctors to do the same, we will find — we are finding — that we are playing variations on a Nazi theme: for the eugenic ideals inherent in Nazism, the idea that it is morally acceptable to kill some (unborn) people to benefit others, and the belief that there are lives which are not worth living, ideas which have “laid the groundwork for medico-ethical transgressions in the past, remain in play across time.”

Surrogacy in the Market of Desire

The State of Florida has spilled no small quantity of ink outlining the legal confines of gestational surrogacy (see particularly sections 742.13-742.17, here).  Legally permitted gestational surrogacy in Florida does not include “bringing in and harboring aliens, sex trafficking of children, forced labor and furthering slave traffic,” however; these charges were leveled against Esthela Clark in 2015. Clark had held a Mexican woman in her one-bedroom apartment, repeatedly inseminating her with semen from Clark’s boyfriend. When the woman failed to become pregnant, she was forced to have sex with two strangers, and placed on a diet restricted to beans.  On 29 March 2017, the 47-year-old Clark from Jacksonville, FL, pled guilty to one count of forced labor. The woman had been forced to clean Clark’s apartment. (See story here.)  What happened to the issues surrounding the smuggling of the woman across the border in order to be a surrogate for Clark and her boyfriend?

On the other side of the globe, India is arguably the world’s leading provider of surrogate mothers, with the industry estimated several years ago as “likely worth $500 million to $2.3 billion.”  India legalized surrogacy in 2002, and is now considering reining in its surrogacy situation:

     The Surrogacy (Regulation) Bill, 2016

 

  • The Surrogacy (Regulation) Bill, 2016 was introduced by Minister of Health and Family Welfare, Mr. J. P. Nadda in Lok Sabha on November 21, 2016.  The Bill defines surrogacy as a practice where a woman gives birth to a child for an intending couple and agrees to hand over the child after the birth to the intending couple.
  • Regulation of surrogacy:  The Bill prohibits commercial surrogacy, but allows altruistic surrogacy.  Altruistic surrogacy involves no monetary compensation to the surrogate mother other than the medical expenses and insurance coverage during the pregnancy.  Commercial surrogacy includes surrogacy or its related procedures undertaken for a monetary benefit or reward (in cash or kind) exceeding the basic medical expenses and insurance coverage.
  • Purposes for which surrogacy is permitted:  Surrogacy is permitted when it is, (i) for intending couples who suffer from proven infertility; and (ii) altruistic; and (iii) not for commercial purposes; and (iv) not for producing children for sale, prostitution or other forms of exploitation.

In their 2012 Journal of Medical Ethics article, Deonandan, Green and van Beinum formulate eight “Ethical concerns for maternal surrogacy and reproductive tourism

Robustness of informed consent

Custody rights

Quality of surrogate care

Limits of surrogate care

Remuneration

Multiple embryo transfers and abortion

Medical advocacy

Exploitation of the poor

Of the eight ethical concerns Deonandan et al found in the Indian experience of surrogacy, at least five of them were present in the Florida case described above –and that would-be surrogate was not even pregnant! It seems that India is not the only entity that should reconsider commercial surrogacy.

 

— D. Joy Riley, M.D., M.A., is executive director of The Tennessee Center for Bioethics & Culture.

A “disabled” person speaks out against a particular form of discrimination

Amidst lots of dark and tragic stories, a bright ray on the BBC website this week: Kathleen Humberstone, a 17 year-old English girl with Down syndrome, addressed the UN in Geneva to mark World Down Syndrome Day.

Rather than reading anything I have to say, a far better use of your time would be to read what Ms. Humberstone said. You can find the full text here; if you scroll down you can listen to her speech and an eloquent talk her mother gave afterwards.

The speech is only 3 minutes 42 seconds, and the mother’s talk 5 minutes 48 seconds. It is well worth every second of your time to listen to these women. However, for those of you who don’t have the time or place to listen, I will give a few highlights here.

From Kathleen’s talk (when she refers to “testing,” she’s talking about prenatal genetic testing to detect and abort fetuses suspected to have Down syndrome):

Bonjour, Hello! I can’t believe I’m here! I’m at the UN, in Geneva! Do you know why? Because I have 47 chromosomes. That’s just crazy!! Thank you Down syndrome! I’m here to talk to you about my life and why it is worth living . . . I love everybody. I can’t help it! I hope everybody loves me. I have Down syndrome. Yes. Is that so wrong? So, why all this testing? Why? My name is Kathleen Humberstone and I love my life!!

From Kathleen’s mother’s talk:

You know that trisomy 21 happens to be one of the easiest disabilities to identify at the moment in utero. More will follow. And eventually all disabilities will be identifiable in utero. So, parents of future generations will have quite a few choices to make. Now sadly, the real downfall of people with disabilities is that we parents still have not found this unit of measurement which would enable us to quantify all they bring to society. But how on earth do you quantify something so strong, so beautiful, and yet so invisible, so intangible, and therefore so worthless, so meaningless, and so easily dismissible to most people who can’t experience it? And how can you blame them? I long for the day when we can quantify this most powerful and almost magical je ne sais quoi, because you would finally understand that our children are not a burden; disabilities are not a burden; they are everything but. I’ll tell you what the burden is. It’s a growing lack of empathy and a thick-lined cloak of altruism: “We don’t want them to suffer.” But it’s not just a burden; it’s also a threat to people like my daughter. It’s time beings-in-the-making stop being discarded solely on the ground of their predicted disabilities. Because we are also doing away with a mountain of hidden abilities. . . you know what else is so sad? A society without disabilities, without diversity, without differences, will not be any happier than the one we’ve got now. It’s an illusion.

Also see here.

But at least we don’t have socialized medicine

I just read T. R. Teid’s 2009 book The Healing of America. It’s a timely read in light of the bar brawl over health care that’s brewing in the U.S. legislature this week. Of particular interest are his snapshots of the health care systems of the UK, France, Germany, Japan, Taiwan, Canada, and Switzerland, systems about which I held many cherished misconceptions. All of these countries provide universal health care coverage for their citizens, but they do so in very different ways. Some countries are single-payer systems; in other countries, costs are paid by multiple (not-for-profit!) insurance companies, and employers and workers share the cost of insurance premiums. In some countries patients must pay a co-pay, in others they never see a bill. In some countries people have long waits for specialist care, in other countries they get in the same day. Despite the differences, there are some very important similarities. First and foremost, everybody in the country is covered and has access to health care. Everybody can see any doctor; none are “out-of-network.” By almost every population health measure from childhood mortality to life expectancy, these countries far surpass the United States. And they do so at a cost that is a fraction what the United States spends for health care.

The attitudes expressed by representatives of the various countries are revealing. In France, one doctor says, “It would be stupid to say that everybody is equal . . . But when we get sick–then, everybody is equal.” The founder of Germany’s system, Otto von Bismarck, called it “applied Christianity,” and said, “A rich society must care for the poor.” Japan has an individual mandate; everyone must sign up with a health insurance plan. As one Japanese doctor said, “It’s considered an element of personal responsibility, that you insure yourself against health care costs. And who can be against personal responsibility?” The report that helped launch Canada’s Medicare system reads, “Economic growth is not the sole aim of our society. The value of a human life must be decided without regard to . . . economic considerations. We must take into account the human and spiritual aspects involved.”

Reid reiterates several times that he believes that societies have a moral obligation to make health care universal. But in this country, there is another mindset, another ethic, that stands in opposition to that view: the view that at best government has no business getting involved in health care, and at worst that government is evil and must be prevented from extending its nefarious reach into health care. Adherents to this ethic often use the term “Socialized Medicine” in a pejorative sense to refer to any health care system that has more government involvement than their own. According to this ethic, the spectre of Socialized Medicine covers a multitude of sins, as in:

  • In our system millions of people don’t have access to health care. But at least we don’t have Socialized Medicine.
  • Untold numbers of people are afraid to leave jobs they dislike because of health insurance concerns. But at least we don’t have Socialized Medicine.
  • Despite paying way more than any other country for health care, our country has worse health outcomes. But at least we don’t have Socialized Medicine.
  • Many people can’t go see their doctors that they have seen for decades because they are suddenly not “in network.” But at least we don’t have Socialized Medicine.
  • Our for-profit health insurance companies have the highest administrative costs in the world, which is a large part of the reason we pay so much more for such lower quality. But at least we don’t have Socialized Medicine.
  • Thousands of people — uninsured and insured — face financial ruin every year because of medical costs. But at least we don’t have Socialized Medicine.
  • Thousands of people die each year in our country because of diseases that could have been treated had they had access to health care. But at least we don’t have Socialized Medicine.

If we really think Socialized Medicine is so evil, then we had best scrap that purest form of Socialized Medicine which is in our midst: the VA system. While we’re at it, we really ought to dismantle Medicare as well. But if we’re not willing to take those simple steps — if Socialized Medicine is after all not quite so evil in these instances — then we should be willing to debate different forms of financing health care on their own merits, and not merely dismiss any discussion with a nebulous term that we fondly imagine carries such moral weight that it lays to rest all other urgent ethical questions about our own system.

The Gift of Finitude

I’ve been thinking a lot lately about finitude. About limits. Incompleteness. Even failure.

Like the friend of a friend who is dying and has just been admitted to hospice, whose young teenaged daughter is facing the prospect of a life without her mother.

Like the colleague who is grieving the loss of both a spouse and a parent within a month of each other.

Like my power wheelchair that keeps breaking down, making everyday activities significantly more challenging.

Like the never-ending “to-do” list that seems to be anything but finite, and never quite seems to get any shorter.

Life is, in a word, full of limits. Boundaries. Unavoidable stopping points.

Or is it?

What if we could transcend our limits, as recent developments in genetic and related technologies (e.g., CRISPR) seem to promise? What if, through genetic manipulations of various sorts, we could significantly reduce our limitations—eliminate specific diseases and disabling conditions, improve cognitive function, “select” for desired physical traits, and so on?

If we could do these things, should we do them?

Of course, as anyone who has followed the field of bioethics for even a short period of time knows, these questions are neither new nor hypothetical. In many ways, the “future” is already here: we “enhance” ourselves, “transcend” limits and boundaries, and otherwise seek to “overcome” finitude in a myriad number of ways, on a daily basis. And much of this is salutary.

Still, it’s always worth pausing to consider: supposing finitude could be eliminated entirely from our lives (which seems extraordinarily doubtful), is it the sort of thing we ought to try to eliminate? Put differently: is there anything good about finitude, such that we ought to embrace it (even if in a qualified way)?

Gilbert Meilaender, a bioethicist and Distinguished Fellow of The Center for Bioethics and Human Dignity, suggests that there is something good about finitude. In a reflection on the “created duality” of our human nature—we are simultaneously both “free” and “finite”—Meilaender observes that this “two-sidedness” to our nature both opens up possibilities and imposes certain limits upon us. We are, he observes,

created from dust of the ground—finite beings who are limited by biological necessities and historical location. We are also free spirits, moved by the life-giving Spirit of God, created ultimately for communion with God—and therefore soaring beyond any limited understanding of our person in terms of presently “given” conditions of life…. Made for communion with God, we transcend nature and history—not in order that we may become self-creators, but in order that, acknowledging our Creator, we may recognize the true limit to human freedom. Understanding our nature in this way, we learn something about how we should evaluate medical “progress.” It cannot be acceptable simply to oppose the forward thrust of scientific medicine. That zealous desire to know, to probe the secrets of nature, to combat disease—all that is an expression of our created freedom from the limits of the “given,” the freedom by which we step forth as God’s representatives in the world. But a moral vision shaped by this Christian understanding of the person will also be prepared to say no to some exercises of human freedom. The never-ending project of human self-creation runs up against the limit that is God. It will always be hard to state in advance the precise boundaries that ought to limit our freedom, but we must be prepared to look for them.[1]

I am inclined to agree with Meilaender. Moreover, as I have shared in an autobiographical essay published recently,[2] my own experiences as a person with a physical disability have taught me valuable life lessons that, arguably, might not have been learned otherwise—lessons such as the value of patience and endurance, accepting my limits (an ongoing struggle, I must admit!), and even the importance of having a sense of humor at the (sometimes ridiculous) circumstances in which one finds oneself. Our limits shape our character, our career, and our life choices as much as do our “freedoms”—often in surprising and unexpected ways, and frequently for the better.

None of these reflections, of course, even begin to scratch the surface of the “what?”, “where?”, “when?”, “how?”, or “why?” questions related to the ethical permissibility (or lack thereof) of pursuing various genetic, reproductive, or other technologies. Nor do they, by themselves, tell us whether (and when) we ought or ought not to avail ourselves of abortion, physician-assisted suicide, euthanasia and the like.

They do, however, remind us of one very simple, yet all-too-often overlooked fact: finitude is, in many ways, a gift. Let us not neglect it.

 

[1] Gilbert Meilander, Bioethics: A Primer for Christians, 3rd ed. (Grand Rapids, MI: Eerdmans, 2013), 3-5.

[2] See “Why am I Disabled? Reflections on Life’s Questions and God’s Answers,” in the Beyond Suffering Bible (Tyndale, 2016), available at beyondsufferingbible.com and http://www.joniandfriends.org/bible/.

A Conflict of Interest is NOT an Ambiguity

Oregon Senate Bill 494 has been described as a “euthanasia bill” that is “intentionally ambiguous,” and as a piece of legislation that would “allow the starving and dehydrating of patients who suffer from dementia or mental illness.”

What has received less press is the composition of the 13-member committee who would be perpetually in charge of advance directive forms in the state, with no oversight by the legislature. Who would those persons be? According to the bill, the 13-member “Advance Directive Rules Adoption Committee” would include

  • The Long Term Care Ombudsman or that individual’s designee
  • 12 members appointed by the Governor
    1. one representative of primary health care providers
    2. one who represents hospitals
    3. one clinical ethicist affiliated with a health care facility
    4. two health care providers with palliative care or hospice expertise
    5. one who represents persons with disabilities
    6. one who represents “consumers of health care services”
    7. one who represents “the long term care community”
    8. one who has expertise in “advising or assisting consumers with end-of-life decisions”
    9. three members from among those proposed by the Oregon State Bar:
      • an expert in elder law
      • an expert in estate planning
      • an expert in health law

Why is the State of Oregon so interested in making sure their appointees are in charge of advance directives?  Is it because the state is so concerned about the health of its citizens?  Hardly, when those citizens in the health care system are described not as patients, but consumers.  Stacking the committee with lawyers who are experts in estate planning and elder and health law seems to assure the state that they will get their pound of flesh.  The State is aware of this:  deceased consumers no longer need their money or their organs.  The conflict of interest inherent in this scheme is not ambiguous.

 

— D. Joy Riley, M.D., M.A., is executive director of The Tennessee Center for Bioethics & Culture.

Advance Care Planning and its Detractors

The default mode of our technologically advanced medicine is to use our technology. Nowhere is this more true than close to the end of life. And our technology is really impressive; with it, we can keep chests going up and down and hearts beating for a long, long time.

The troubling thing is that there are many people who would rather not have lots of machines keeping their bodies going, thank you, maybe you could just give me some oxygen and pain medicine and let me die at home with my family? But they never get a chance to talk about it with their doctors, mostly due to doctors’ lack of time or comfort in addressing such questions. And, unlike every other procedure in medicine, doctors don’t need your permission to do one of the most invasive procedures of all to you: CPR. Of course, CPR is generally performed on someone who is indisposed and unable to give their informed consent to the procedure. And CPR is often the first step on the technological path of ventilators, tubes, dialysis, medications to support the blood pressure, machines that keep the heart pumping, and all of those wonderful interventions that are life-saving when used appropriately and death-prolonging when used indiscriminately. Treatments that treat . . . nothing.

Ideally, doctors take time to discuss patient preferences about such treatments with patients and their families before the occasion to intervene arises; however, the factors noted above make such discussions rare. Those discussions are ideally an exploration of patient values and expectations from health care, and a translation of those values into appropriate medical interventions. They also identify people who are familiar with the patient and their values who can act as surrogate decision-makers should the patient not be able to make or express their own desires in a particular situation.

Because of the difficulties finding time for these important discussions, it was proposed as part of the Affordable Care Act (aka ACA, aka Obamacare) that Medicare reimburse doctors for the time they take to counsel patients and find out their preferences for end-of-life care. In an act of breathtaking rhetorical deception (aka lying), these discussions with patients, meant to elucidate their preferences for care, got labeled as “Death panels.” (I am not making this up.) The proposal was dropped from the ACA.

Then, in 2015, Medicare started reimbursing physicians for having The Conversation. But last month a Representative King introduced a bill in Congress, deceptively titled the “Protecting Life Until Natural Death Act,” which would revoke such payments.

Fortunately, the bill’s fate is “highly uncertain.” It should never see the light of Congressional day. It propagates the idiocy that lay behind the charges of “Death panels.” And rather than promoting “Natural Death,” it will lead to more people dying anything but a natural death; instead, they will be dying a technological death, hooked to lines and machines and drugs — things they would never have wanted or received had they only had a chance to talk it over with their doctor.