Nonvoluntary Treatment for Substance Use Disorders Take III

This article just came across my social media this morning.  It is discouraging to say the least, especially given the scope of the problem we are facing.  As I have said before, the ethics of nonvolutnary treatment only hold up if we are able to provide the solicitous care people with sever substance use disorders need; treatment that could be reasonably expected to help an individual into recovery.  Based on this article it is clear that there is both a policy and implementation problem. It is hard to say that it’s treatment not prison when it looks like this:

The men stay for 30 to 90 days in small rooms, which are former cells with metal mesh on the widows, bunk beds and wooden foot locker like benches. (Robin Lubbock/WBUR)

Sadly, I am not surprised.  Despite our understanding of the “disease model” of addiction we still do not treat persons with substance use disorders the same way we treat people with other chronic illnesses.  Can you imagine opening a facility to treat other illnesses like heart disease or diabetes but then telling patients “sorry, we can’t administer lisinopril or insulin?”  This fits with our overly moralistic view of addiction and the lingering prejudice that places a focus not on treating an illness but rather on punishment, stigmatization, and the enforcement of some sort of moral conversion.

I am wholly sympathetic to the families of these men: “He’s treated like prisoner, he eats awful food like the prisoners, but it’s worth it because he’s alive,” Vehmeyer said. “I wish there was another option but there no other option.”  How terrible it is that all we can offer families is the false dichotomy of death or ineffective treatment in a prison setting. Under these conditions it is difficult to justify the abridgement of civil liberties when it is very unlikely that that temporary abrogation of rights will ultimately result in the return of the capacity for autonomous choice.  

 

Nonvoluntary Treatment

I’ve been meaning to share this for a week or so.  Dom Sisti is an Assistant Professor of Medical Ethics and Health Policy at the University of Pennsylvania and Director of the Scattergood Program for the Applied Ethics of Behavioral Health. In a recent article in JAMA, Dom writes about the distinction between involuntary and nonvoluntary treatment.  It is a really good article that effectively reframes how we should talk about involuntary or mandated treatment, a topic to which I constantly return.

Fool me once, shame on you. Fool me twice, it’s going in the syllabus.

The Facebook page “Shit Academics Say” recently posted the professor’s mantra “Fool me once, shame on you. Fool me twice, it’s going in the syllabus.”  I’ve been following that rule for a few years now, and so my syllabi have begun to rival Remembrance of Things Past” in scope.  I’ve begun distributing all of my auxiliary rules as an appendices to the syllabus.  Apart from my grading criteria, they contain my list of unacceptable excuses that have been culled from student grovelling over the past few years.  I tell my students that if they come up with an excuse I haven’t heard yet I will add it to my list and name it after them.  Would that be a violation of FERPA?  See, managed to make this post about ethics!  Anyway, and without further adieu, I give you:

Professor Lukens’s Compendium of Unacceptable Excuses for Late Papers

 

  1. “My computer crashed.” I’m sorry to hear that.  Fortunately, there are things like backup drives and thumb drives where you can save additional copies of papers so that they are not lost.  Also, there is this amazing thing called the “internet” that makes available to us things like “cloud storage” where you can put copies of your papers.  Also, when you tell your professors that you cannot turn in a paper because your computer crashed, your professor hears “the dog ate my homework.”

 

  1. My printer ran out of ink, paper, magical elves, etc. Plan ahead.  You know your paper is due, so make sure you have everything you need to turn it in on time.  You can always go to the printing center at Staples with your paper on a thumb drive (see above).  Also, this means having your paper stapled.  Unlike yesteryear when students had to hand forge staples from bits of wire scavenged from refuse piles, staples and staplers are remarkably ubiquitous in the modern age—please use them.

 

  1. “I had a test in Dr. So and So’s class and Professor What’s Her Name also has a paper due this week.” I will take this to mean that you think the work due in those instructors’ classes is more important than mine is—this cannot possibly be true.  Again, plan ahead, and perhaps even consider starting your assignments days or **gasp**even weeks before they are due!

 

  1. “I’m getting married,” “I’m going on my honeymoon,” “We planned a family vacation.” Sounds like fun!  You also enrolled in graduate school and signed up for this course; plan the aforementioned events for after the semester. There is a reason all my graduate school friends and I have anniversaries that coincide with Spring break and took our honeymoons during the summer.  Unless Doctor Who lands in your garden in his TARDIS and asks you to help him defeat a Dalek invasion, travel is an unacceptable excuse.  Of course, the Doctor would be able to return you back in time well before the assignment is due, so really, Dalek invasions are even a weak justification.

 

  1. “I’m sick,” “I have the flu,” “I have this stomach thing.” Wow, that sounds horrible.  You should go to a doctor immediately after handing in your paper to me.  Also, if I hear this excuse, I may begin to suspect that in fact you have been out late with your friends, probably hanging around The Olive Garden and Bennigans—I mean who could resist an evening of B52s, Peach Bellinis and endless breadsticks!?  You should resist.  Remember the basic formula for graduate school: Papers and studying come before Jäegerbombs.

 

  1. “I wasn’t here when you talked about the assignment.” The evolution of human knowledge is really an amazing story.  Did you know that the first person known to have posited a heliocentric model of the universe was  Aristarchus of Samos in the 3rd century BC? Did you also know that it was not until the 16th and 17th century that the burgeoning scientific community made the observations and calculations that established the heliocentric model as an accurate representation of the universe?  How does this apply to excuse #6 you may ask?  Well, what Copernicus, Kepler, Galileo, and Herschel  so ably argued is that in fact it is the sun and not the Earth or even **gasp** graduate students at  the center of the universe.  It may be shocking to hear, but when you are not present in class, the loss of your gravity does not cause your classmates and professor to float off into space.  Rather, class goes on, lectures are delivered, and assignments are discussed; I recommend you catch up with one of your classmates (who are also not at the center of the universe) and find out what you missed.  We also have this thing called a “syllabus” which details the assignments and due dates.

Helping Those Affected by Hurricane Harvey is Your Moral Obligation….

…well, at least if you are Peter Singer, and today I am willing to be Peter Singer.  Back in 1971, Singer wrote about our obligation to help those suffering through a famine half a world away.  I’m not really much of a Singer acolyte, but I think his argument is a strong one and compels us to act to relieve those affected by Hurricane Harvey:

“I begin with the assumption that suffering and death from lack of food, shelter, and medical care are bad. I think most people will agree about this, although one may reach the same view by different routes. I shall not argue for this view. People can hold all sorts of eccentric positions, and perhaps from some of them it would not follow that death by starvation is in itself bad. It is difficult, perhaps impossible, to refute such positions, and so for brevity I will henceforth take this assumption as accepted. Those who disagree need read no further.

My next point is this: if it is in our power to prevent something bad from happening, without thereby sacrificing anything of comparable moral importance, we ought, morally, to do it. By “without sacrificing anything of comparable moral importance” I mean without causing anything else comparably bad to happen, or doing something that is wrong in itself, or failing to promote some moral good, comparable in significance to the bad thing that we can prevent. This principle seems almost as uncontroversial as the last one. It requires us only to prevent what is bad, and to promote what is good, and it requires this of us only when we can do it without sacrificing anything that is, from the moral point of view, comparably important. I could even, as far as the application of my argument to the Bengal emergency [or Hurricane Harvey!]is concerned, qualify the point so as to make it: if it is in our power to prevent something very bad from happening, without thereby sacrificing anything morally significant, we ought, morally, to do it.”

I assign this article in my classes and we spend substantial time dissecting the pros and cons of Singer’s argument.  Certainly there are places to critique Singer’s paper, but that is for another post. The important take away is that when people are facing a dire situation, giving of one’s time, labor, or resources is non-supererogatory.

Times like these, the Red Cross launches fundraising campaigns.  If you like the Red Cross and want to donate that way, go ahead an do so.  I have some issues with the Red Cross and prefer to donate to local relief agencies.  If you want to find local groups who are doing relief work, here is a good place to start.

 

 

Free Speech and “The Paradox of Tolerance”

White nationalists/ White supremacists/ Nazis/ Clansmen (can someone please come up with a word that captures all these clowns since they are really the same?) have been reasserting themselves.  By their own admission, they have felt emboldened by the President’s  racist and xenophobic rhetoric and the fact that he will not outright condemn white supremacy.  In Charlottesville the galvanizing issue was the removal of Confederate statues which, by the way, actually have little to do with the real history of the Civil War and antebellum South.  If you want a memorial to the ideas those southern generals fought to uphold then put up statues of Gordon or “whipped Peter.”   That’s a topic for another post perhaps.  What I am interested in is a discussion of the limits of free speech and the toleration of hate speech.  A popular meme on Popper’s “paradox of tolerance” has been making the rounds on social media.  I have also seen petitions being circulated (including at my alma mater UPenn) regarding the curtailment of hate speech on campus.  Popper’s paradox of tolerance is an important argument for why we must be organized in our opposition to the Nazi clowns who feel that they can safely craw out from under their rocks to protest the removal of monuments to white supremacy.  However, attempts to use legislative or policy mechanisms to curtail free speech are misguided: if you really believe in social justice you should resist attempts to restrict free speech. Such laws have typically been used for illiberal purposes by suppressing the voices of labor activists, advocates for economic justice as well as those opposed to slavery, racial and gender discrimination and Americas imperial interests.

The Paradox of Tolerance

Here’s the meme that has been floating around recently.

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The paradox comes from Volume One of Popper’s The Open Society and Its Enemies.”  To give you the full context, here is what he writes:

“Less well known is the paradox of tolerance: Unlimited tolerance must lead to the disappearance of tolerance. If we extend unlimited tolerance even to those who are intolerant, if we are not prepared to defend a tolerant society against the onslaught of the intolerant, then the tolerant will be destroyed, and tolerance with them. In this formulation, I do not imply, for instance, that we should always suppress the utterance of intolerant philosophies; as long as we can counter them by rational argument and keep them in check by public opinion, suppression would certainly be most unwise. But we should claim the right to suppress them if necessary even by force; for it may easily turn out that they are not prepared to meet us on the level of rational argument, but begin by denouncing all argument; they may forbid their followers to listen to rational argument, because it is deceptive, and teach them to answer arguments by the use of their fists or pistols. We should therefore claim, in the name of tolerance, the right not to tolerate the intolerant. We should claim that any movement preaching intolerance places itself outside the law, and we should consider incitement to intolerance and persecution as criminal, in the same way as we should consider incitement to murder, or to kidnapping, or to the revival of the slave trade, as criminal” (Popper, 1971, p. 265).

Here is a rare case where an endnote becomes the most talked about part of a book!  The fact that this is an endnote also makes it troublesome because the ideas are not as thoroughly developed as one would expect from a philosopher of Popper’s caliber.  So, what does he mean then?  How far should the intolerance of illiberal ideas go?  Was Popper arguing in favor of legal restriction on free speech?  I doubt it, at least not as a first defense against illiberal ideas (that is, ideas antithetical to a free and open society).  It is especially doubtful given his close association with several leaders of the burgeoning Libertarian movement. The problems with memes and tweets and sound bites is that they do not reveal the depth of an idea.  Case in point is the meme above which misses a critical line in Popper’s work:

“I do not imply, for instance, that we should always suppress the utterance of intolerant philosophies; as long as we can counter them by rational argument and keep them in check by public opinion, suppression would certainly be most unwise” (Popper, 1971, p. 265).

To understand the implications of the paradox of tolerance we need to be clear on exactly what we mean by tolerance.  If we can clarify that point, I think we can see that legal restriction on free speech–even the most odious and idiotic white supremacists rhetoric—is unnecessary.

On Tolerance

                Tolerance implies a respect for rights, not necessarily a respect for ideas or the people that hold them.  Unfortunately, we have often taken tolerance to mean that all ideas must be weighed or considered or even respected, or that we need to be nice and respectful toward Nazis.  There is no such moral obligation.  In a liberal society, my only obligation is to recognize the right of others to hold ideas contrary to my own, even ideas that I believe are reprehensible.  However, I am not obligated to be understanding toward those ideas or even respectful towards the people who hold them.  In fact, I believe the ridicule is a powerful weapon against hate. It is also fun. I mean look at these folks–the ridicule pretty much writes itself.

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Hey ladies, he’s the master race AND he’s single

You will often hear those on the right prescribing intolerance to those on the left who do not, for instance,  support religious beliefs that discriminate against the LGBT community or think that statues that glorify white supremacists are appropriate in a pluralistic society.  During the last election, B-actor Scott Baio said that those who preach tolerance are the most intolerant he has ever met.  I think this is a misunderstanding of tolerance: if your ideas would attempt to rob others of their rights or treat them as second class citizens or perpetuate white supremacy I am not obligated to respect you or your ideas.  I must be tolerant only insofar as I recognize your right to hold awful ideas.

What popper was getting at (I think) was the idea that when confronted with ideas that are illiberal and that would undermine a liberal democracy we are not only permitted, but are morally obligated to confront those ideas forcefully.  Our forceful opposition may and perhaps even should contain downright disrespect for the ideas.  Let us all take heart: we are doing this, and doing it well! When the alt-right backed “free speech rally” came to Boston, believers in a free and open society were there to answer with vigor (and humor).

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But all that being said, let’s not forget Popper’s injunction: legal suppression of free speech is unwise.

Free Speech Matters

                The cause of the liberal society is served by free speech.  This is evidenced by the fact that those who which to stifle the open society have frequently resorted to the suppression of free speech in the name of social order (or even “tolerance”) as a way of maintaining an illiberal order.  The suppression of free speech has typically served those with an interest in consolidating and maintaining their economic and political power. A few examples:

1.       The Alien and Sedition Acts of 1798 were used to restrict the rights of immigrants and eventually to imprison newspaper editors and punish political opponents of the Federalist Party.

2.       Abolitionists were frequently the target of free speech suppression.  Eventually it became illegal to send abolitionist materials through the U.S. mail  as they were regarded as “inflammatory” and “seditious.” Interestingly, the postmaster general at the time invokes a crude version of the paradox of tolerance to justify the disregard for the 1st amendment in favor of the rights of southern slave states: “if the former be perverted to destroy the latter, it is patriotism to disregard them.”

3.       During the First World War, the Wilson administration actively prosecuted even minor acts of political dissent that were perceived as “anti-war” under the Espionage Act of 1917. This culminated in the thoroughly terrible Schenk v. United States decision that upheld the prosecution (persecution) of socialist anti-war activists.  This case made famous the lines by Supreme Court Justice and noted eugenicist Oliver Wendell Holmes that free speech can be restricted when it amounts to “shouting fire in a crowded theatre” (a false analogy) and presents a “clear and present danger.”  We see how easily the concept of clear and present danger can be widely interpreted to justify abuses by those in power.

4.      The Suppression of the free speech of African Americans was de rigueur during Jim Crow and the civil rights movement as it was a threat to the Southern social order.

5.       The Berkeley Free Speech Movement arose in opposition to campus policies that restricted on campus political activities, including anti-war and civil rights advocacy.  This restriction served the conservative leadership of the state of California. Given the sacrifices of the free speech movement (mass arrest and punishment) I am dismayed to now see University students advocate for restrictions on free speech.

6.       Various anti-protest bills  have been passed that suppress anti war and economic justice protests.  Be sure and stay in your “free speech zone” like a good little protester!

If you believe in the rights of immigrants, the rights of marginalized racial and ethnic groups, the rights of the LGBT community, social and economic justice, and the ability to protest unjust wars then you must recognize that the fight for all of those things has been inextricably tied to the fight for free speech! Are we really prepared to have our right to free speech be governed, controlled, or restricted by the vicissitudes of economic interests or political fashions as it has in the past? Besides, in suppressing free speech we may only further the ridiculous narrative of the “oppressed white man.”

The dark side of free speech can be effectively countered by the good of free speech—this was the lesson of the Boston protests.  Let us mind Popper’s injunction; we have not yet hit a point where the threat to a free and tolerant (in my sense of the word) society is so grave that we must resort to illiberal tactics like free speech suppression.  Once you cross that line it is difficult to come back again, and when political fortunes turn, the rules you put in place to protect the rights of the marginalized will be easily wielded against them. We already see on the right an effort to label Black Lives Matter a “hate group” that engages in dangerous “hate speech.”  The is already a lawsuit trying to accomplish this very thing. This lawsuit could create a legal precedent that would have a chilling effect on the civil rights group.

In the end, legal restrictions on free speech (I include state and federal laws as well as campus speech codes) accomplishes for freedom and an open society what nuclear armament accomplishes for human existence: mutually assured destruction.  The use of policies or laws banning speech are the nuclear option (as Popper implies) as opposing sides unleash restrictions on each other’s rights in the name of social order, tradition, justice or whatever else.  As we learn from WOPR in War Games   “the only winning move is not to play.”

 

Popper, K.R. (1971) The Open Society and Its Enemies Volume I: Plato. Princeton, New         Jersey: Princeton University Press

 

In Times Like These I Think of Albert Camus

The reemergence of White Nationalism as a visible political movement will be a big part of my policy courses this fall semester.   My hope is that as we explore policy and race through the Civil War, reconstruction, Jim Crow, and the civil rights movement, my students will come away with a better understanding of the historical context. Perhaps they will understand that the events in Virginia are at least in part just a modern iteration of the same old racial politics that have haunted this country since its founding.  If my classes were not already so jam packed with readings, I would make The Plague by Albert Camus required reading; it is one of the most poignant moral tales of modern literature.  Camus reminds us that while we may recoil at the hatred and violence our fellow men and women can so easily muster we must not lose sight of the human capacity for goodness as well.  He also cautions us that hatred and violence is never defeated once and for all, but rather is only temporarily driven back and waits quietly in dark corners for an environment where it can again thrive.

Like many, I have been disturbed by the violence in Charlottesville, Virginia.  We are not far removed from a generation of men and women who made profound sacrifices to defeat the symbols and ideology that the White Nationalist now feel emboldened to display on the streets.  We still have among us many men and women who were the victims of the genocidal impulses of the fascist movements of the mid twentieth century.  When the climate is right, such hatred can thrive. In the aftermath of a particularly vicious campaign that sought to stoke white discontent, the ugliness came creeping out.  That is all such hatred and viciousness needs to thrive, a structure of power that protects and promotes it.  But as disturbed as I may be by the images and rhetoric I am not surprised.  The darkness is always there, biding its time and hoping for its moment.  Within such reactive mass politics is, as Camus pointed out, a reflexive totalitarianism.  Thus, we see how human freedom is never really safe and how political systems can be so easily infected by our darker impulses.

Camus’ masterwork is ostensibly about an outbreak of bubonic plague in the walled city of Oran in North Africa.  When the outbreak begins, the city is sealed off leaving its inhabitants to labor ceaselessly to assuage the suffering of their fellow residents. They must carry on as best they can as they watch their friends, neighbors, and loved ones die around them. The story is of course a parable about the disease of fascism that had spread across Europe in the 1930s and 40s.  Having been a member of the French resistance and editor of the resistance journal Combat, Camus understood firsthand what it means to live in a time of pestilence.   Camus understood that in the end our sole moral duty becomes resistance to the any movement that is powered by such searing hate.

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Sophie Scholl memorial in Munich

 

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Civil Rights Memorial, Montgomery, Alabama

We honor the men and women who resist because we recognize that out of the depths of despair come great acts that reassert our humanity:

 “And it was in the midst of shouts rolling against the terrace wall in massive waves that waxed in volume and duration, while cataracts of colored fire fell thicker through the darkness, that Dr. Rieux resolved to compile this chronicle, so that he should not be one of those who hold their peace but should bear witness in favor of those plague-stricken people; so that some memorial of the injustice and outrage done them might endure; and to state quite simply what we learn in time of pestilence: that there are more things to admire in men than to despise.”

Having born witness to the horrors of the totalitarian movements that swept across Eastern and Western Europe, Camus was also aware that the dark impulses that would destroy human freedom are never defeated.  Today, we see in our own battles with White Nationalism (AKA Fascism) at home and terrorism and totalitarianism abroad that Camus was right: he predicted the politics of hate that would rise and fall and rise again throughout the rest of the twentieth century and into the new millennium.  But for Camus that prescience was never a cause for hopelessness, but rather was a call to moral rebellion.  Let the stories we tell be those of the men and women who have resisted: the fight against fascism in Europe, the solidarity movement in Poland, and the civil rights movements here at home. However, the stories we tell must also come with a caution, which is that there is never a final victory.

“… the tale he had to tell could not be one of a final victory. It could be only the record of what had had to be done, and what assuredly would have to be done again in the never-ending fight against terror and its relentless onslaughts, despite their personal afflictions, by all who, while unable to be saints but refusing to bow down to pestilences, strive their utmost to be healers.

And, indeed, as he listened to the cries of joy rising from the town, Rieux remembered that such joy is always imperilled. He knew what those jubilant crowds did not know but could have learned from books: that the plague bacillus never dies or disappears for good; that it can lie dormant for years and years in furniture and linen-chests; that it bides its time in bedrooms, cellars, trunks, and bookshelves; and that perhaps the day would come when, for the bane and the enlightening of men, it roused its rats again and sent them forth to die in a happy city.”

I think a lot about virtue ethics and the role of character in moral courage.  Paradoxically, moral courage requires not self-righteousness, but humility.  It requires that recognize that when we undertake the fight to create a world that is more just we should always be aware of our own human frailty.  The Greeks would have understood this as the virtue of reverence, the opposite of which is not irreverence, but rather hubris: a dangerous overconfidence.  When one begins to think of one’s own moral judgment as infallible one becomes positioned to be the new oppressor. When I was young I watched the series The Ascent of Man on PBS, and I will never forget the great historian and mathematician Jacob Bronowski quoting Cromwell: “I beseech you in the bowels of Christ: Think it possible you may be mistaken.” Despite his own endorsement of socialism Camus often found himself “out of fashion” with the intellectual and political left in France.  Camus’ commitment to human rights and human freedom meant that while he could join with other intellectuals in condemning the Fascist right, he had a serious falling out with the likes of Jean Paul Sartre, a leading apologist for the other horrific ideology of the mid twentieth century, Stalinism.  For Camus, our morality was not in our adherence to proper political doctrine or simple rule following, but rather in our willingness to rebel against the totalitarian impulse regardless of its political origins.  Camus showed implicitly, if not stated explicitly, reverence in his understanding of our great moral capacity but also our moral frailty.

I don’t know if The Plague is taught in colleges anymore, let alone high schools.  Given the current state of lit-crit, I fear it would be read only as an expression of French colonialism in North Africa (or some other such abstraction that misses the point) instead of the great moral tale that it is. Perhaps I’ll figure out a way to make it a required reading.

 

 

 

 

The right to say “no?” Necessary, but in the end inadequate.

Elyn Saks is a powerhouse in psychiatry and the law and an advocate who I admire.  That being said, I disagree with her recent article on Politico.  The answer to the sticky question of consent is not “making it easier to say no” or expanding the way we define competence.  Advances in consent and the right to refuse medications should come through the use of shared decision making and advanced treatment planning.

Consent and the ability to refuse pharmacological interventions by persons with major mental illnesses is a question that continues to challenge social workers, advocates, physicians, and ethicists.    Saks raises some important issues:

  • Mental health treatment has often been authoritarian and, by extension, demeaning.
  • There are many reasons patients may not want to take medications. There are some severe side effects to some psychiatric medications and that the decision to refuse medications can be entirely rational.
  • Patients resent being “forced” to take medications.

I don’t disagree with any of this.  What I do disagree with is Saks contention that making it easier for patients to refuse medications is the solution as it gives the patient a bargaining chip in a negotiation and thus reduces the potential power struggle between patient and provider.  I also don’t think that reframing how we think about competence is the answer. My objection to this article is that it seems to ignore some significant developments in illness management that are based on collaboration and advanced planning. Consent can be much less adversarial.

Shared decision making is finally making inroads into behavioral health and I think show great promise in assisting patients and providers in arriving at mutual goals.  The capacity to make decisions often fluctuates.  When clients are highly symptomatic their capacity to make decisions may be impaired; weeks or months later when symptoms ebb that capacity may return.  The vast majority of patients can participate in decision making to some degree at various times, but there are also times when decision making is just too impaired.  Rather than expand the definition of competence, why not focus on interventions that help clients plan ahead for times when they may be in crisis?

I am an advocate of the recovery model that gives clients greater control.  I also recognize the ethical pitfalls that may accompany recovery oriented services. Fortunately, advocates and researchers have been developing interventions to address those ethical concerns. A great example is the development of consumer oriented interventions like Wellness Recovery Action Plan (WRAP) that expand the control that clients have over decisions when times of crisis emerge.  It is not about making it easier to say “no” or expanding the definition of competence; I’d rather we focus on shared decision making and advanced treatment planning.

Charlie Gard: A Social Work Perspective

I often say to my students that debates involving end of life care are so deeply contentious because they raise very fundamental questions about what defines a life worth living and who gets to decide.  This is further complicated when the life in question is that of a child.  Muddying the waters still more is the tendency of politicians unconnected to the case to use the heartbreak and suffering of others as a mechanism for ideological grandstanding.  Add to all of this the very distant promise of experimental treatment and you have the incredibly sad case of Charlie Gard.  Nearly every bioethicist I follow on social media has weighed in on this case over the past few months.  Now the case has come to a close; Charlie Gard died a few days ago after entering hospice.  I really had not planned on writing about Charlie’s case even though I have been involved in similar conflicts between providers and patient families as a member of ethics panels.  However, I had a somewhat contentious discussion with a hospital social worker regarding this case; she argued that had she been assigned this case she would have advocated for Charlie to receive whatever treatment her parents saw fit.  I disagreed.  As painful as it may be, I believe the medical staff made the correct decision to resist further medical interventions in Charlie’s case.  Doing otherwise would have simply prolonged his suffering.

Background

                We all face at some point the grief of losing parents or grandparents.  We may find solace in thinking about the long life they have lived, the legacy they have left behind, and the many years of happiness we have had with them. The parents of Charlie Gard have no such solace.  Charlie was born in August of 2016 with a very rare genetic disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS).  In short, Charlie experienced a significant depletion of his mitochondria (the “energy supply” for cells) that lead to cellular injury and death.  This disease is almost always fatal, and even when it is not, it results in significant brain damage.  In Charlie’s case, he had been maintained on life support at London’s great Ormond Street Hospital, one of the best children’s hospitals in the world, since last October.  Charlie had severe brain damage, was blind, could not breathe or move on his own, was deaf, and had epilepsy.  The muscles in his face were so week that he could not hold his eyelids open, and his eyes were disconjugate.  According to the hospital staff, he had also suffered damage to his liver, heart, and kidneys.

The medical staff at Great Ormond Street argued that there was nothing further they could do to save Charlie and that further medical intervention served only to prolong his suffering.  For this reason, they advised Charlie’s parents that hospice and palliative care was the most humane thing that can be done for him.  While the hospital argued it could do no more,  Dr. Michio Hirano, a neurologist at Columbia University Medical Center weighed in and argued that Charlie would benefit from an experimental nucleoside treatment.  Charlie’s parents fought to get him access to this treatment.  The Pope, the President, and several politicians weighed in, arguing that “the state” was denying Charlie a potentially life saving treatment.  In response, questions were raised regarding Dr Michio Hirano’s financial link to the company that produced the experimental treatment he was advocating.  As legal appeals were being pursued Dr. Hirano acknowledged that recent MRIs indicated that it was highly unlikely Charlie would benefit from the experimental therapy.  Charlie’s parents decided to drop further appeals and moved him to hospice where he died.  Every parent can sympathize with his parent’s efforts to exhaust every possibility and admire their determination in fighting for their desperately ill son. Before their decision, this case divided the bioethics community with some arguing that his parents should be able to pursue all options and that the state and medical community had no standing to decide otherwise. Some have argued otherwise.

The Challenge for Social Workers

                One of the many roles that social workers may assume in hospital settings is that of patient advocate and liaison between the medical team and the patient and patient’s family.  One of the more complex situations that social workers can find themselves in is when they are caught between patient and family and the medical staff when there is a disagreement about whether treatment should continue.  In the case at hand, we have a child who cannot make decisions, therefore his parents are empowered to make choices they believe will be in his best interest.  Charlie’s medical team also made a decision they believed to be in his best interest.  Both parties fundamentally disagreed.  I have served on ethics panels before and have heard similar cases.  So let us assume we are social workers assigned this case: what should we do?  Which “side” do we take?

I discussed the Charlie Gard case with a hospital social worker who was adamant that her job is to be an advocate for the family, and that she would have done everything she could to help the family obtain the experimental treatment they had sought.  I strenuously disagreed with this position. It is true that social workers are advocates and that there is a special duty to one’s clients to advocate for their right to make decisions they believe are in the best interest of themselves and their families.  However, this duty is not absolute.  If we believe a client’s choices may be harmful or detrimental to others then we are not obligated to support their choices.  In this case, the decision to pursue extraordinary medical intervention would have prolonged Charlie’s suffering while not (according to the opinion of several top physicians) providing benefit.  Advocating for the parent’s right to pursue additional treatment would violate our duty to act in the best interest of those who cannot make decision for themselves.

When measures to extend life only cause further suffering, adults have the right to stop such interventions for themselves.  When the case involves a child, it must be those who have the best interest of the child at heart who make the choice to stop futile efforts.  I have no doubt whatsoever that Charlie’s parents every decision was based in their desire to save and protect him.  However, as social workers in this situation we would need to consider whether Charlie’s parents’ grief or fear or difficulty in acknowledging the reality of his condition has in some way clouded their judgement.  Sadly, there have been several high profile cases in which parent’s have struggled to accept medical reality. In this particular case, it would be incumbent upon the social worker to support the medical decision of his or her treatment team colleagues and to provide Charlie’s family with the support and education they need to come to terms with his profound illness.  I believe the wrong choice would be to exacerbate a difficult situation by further dividing the medical team from Charlie’s parents by advocating that they be permitted to pursue treatments that only prolong his suffering.

While Charlie’s parents eventually made the decision to drop further legal appeal I suspect it is a decision they wills struggle with for a long time. When a decision is made to withdraw life support from a child there will often be painfully nagging questions: did we act with too much haste?  Was there some intervention we did not consider?  Was there something that could have been done that wasn’t?  I think these questions will be particularly haunting to Charlie Gard’s parents as the decision to not seek other treatments or interventions may not have been entirely theirs.  I do not know how much of their decision to end further treatment was an acceptance of Charlie’s condition and how much was due to the medical, legal, and political pressures in this case.

We must also recognize that there may have been some solace for them in knowing they pursued every option, including experimental ones that were a long shot.  As Charlie’s parent’s said in an earlier interview (prior to the MRI that revealed the experimental treatment was unlikely to work) “Even if it doesn’t work, which I think it will, we know that we’ve done everything.”  They were not given this opportunity. But “doing everything” may not always be appropriate or ethical, especially when it is likely to cause more harm or suffering.  That said, the decision to oppose a parent’s medical choice should weigh heavily on the minds of the doctors, nurses, and social workers who are part of the decision.  However, the burden of that choice should not prevent a social worker for making a choice that is ultimately in the best interest patients who cannot speak for themselves.

 

Further Thoughts on Mandated Treatment for Substance Use Disorders

I got some really great feedback on the inaugural post on the ethics of forced/mandated treatment.  I readily admit that I am not an authority on substance abuse disorders—the last few years I have been far more focused on health care and homelessness.  This is evidenced by the fact that I am not up on the current terminology.  So let me address some of the comments sent to me by colleagues and students of mine who work int he field

Nomenclature

A few folk pointed out that in current policy and treatment environments, the term “substance use disorder” is the preferred nomenclature  as per the newest edition of the Book of Human Troubles, the DSM-5.  For clarification, here is how the DSM defines the issue:

“…a problematic pattern of use of an intoxicating substance leading to clinically significant impairment or distress, as manifested by at least two of the following, occurring within a 12-month period:

  1. The substance is often taken in larger amounts or over a longer period than was intended.
  2. There is a persistent desire or unsuccessful effort to cut down or control use of the substance.
  3. A great deal of time is spent in activities necessary to obtain the substance, use the substance, or recover from its effects.
  4. Craving, or a strong desire or urge to use the substance.
  5. Recurrent use of the substance resulting in a failure to fulfill major role obligations at work, school, or home.
  6. Continued use of the substance despite having persistent or recurrent social or interpersonal problems caused or exacerbated by the effects of its use.
  7. Important social, occupational, or recreational activities are given up or reduced because of use of the substance.
  8. Recurrent use of the substance in situations in which it is physically hazardous.
  9. Use of the substance is continued despite knowledge of having a persistent or recurrent physical or psychological problem that is likely to have been caused or exacerbated by the substance.
  10. Tolerance, as defined by either of the following:
    1. A need for markedly increased amounts of the substance to achieve intoxication or desired effect.
    2. A markedly diminished effect with continued use of the same amount of the substance.
  11. Withdrawal, as manifested by either of the following:
    1. The characteristic withdrawal syndrome for that substance (as specified in the DSM- 5 for each substance).
    2. The substance (or a closely related substance) is taken to relieve or avoid withdrawal symptoms.

Complicating things is the fact that some agencies and organizations are still using use, abuse, and addiction and the manner in which we measure the rates in a  population may not yet have caught up with the new DSM criteria.  Nevertheless, my colleague Elspeth Slayter points out that this terminology is important  “…the use of the term “substance use disorder” is favored to “substance abuse” in the addiction treatment community – as they are trying to move society towards the understanding of addiction as a disease vs. a choice. Same holds true for “substance user” vs. “substance abuser.””  I often scoff (as Elspeth pointed out to me) at language policing.  In this case I think that  she is correct in that it is simply a more precise term that fits with the current science of addiction.  So, I stand corrected and will keep this in mind for future posts.

Questions of Effectiveness

          In my initial post, I argue that the moral justification for involuntary treatment was premised in no small part of being able to answer the effectiveness question.  Not an easy task.  My colleague Elspeth pointed out, and I agree, that there are weaknesses in the literature.  The biggest weakness is the tendency to lump all substances and/or settings together when making claims about the effectiveness of mandated treatment.  However, further look at the literature indicates that there is evidence to show that mandated treatment for opioids can be effective as can mandated treatment for alcohol use.  It should be noted that much of the data comes from programs that were connected to the criminal justice system.  When the clients were operating within a system that had greater coercive power (they could be hit with a technical violation of probation or parole if they failed to complete a treatment program) there were stronger outcomes.  Some studies of programs that do not have that degree of legal coercion were also found to be effective but only within certain narrow outcomes.  There are also a few studies that show a negative relationship between coercion and treatment outcomes.  So how do we make sense of this?

The effectiveness of mandated treatment is situational.  Type of substance, criminal justice involvement, treatment setting, and treatment goals are all key factors in determining the likely success of a program.  Again, there is also a need for better research; the authors of the systematic review I recently read indicate consistent issues in the research: “variation in coerced treatment outcomes is due to (1) inconsistent terminologies, (2) neglected emphasis on internal motivation, and (3) infidelity in program implementation.”  As I have mentioned, there is also the tendency to lump together different substances.  But this also brings me to another weakness in my original post: I emphasized opioid use as the issue that prompted me to reconsider my position on mandated treatment.  However, my former student Kate Taylor who is also an experienced practitioner in substance use treatment pointed out that the social, economic, and medical toll of alcohol use disorders is far greater than that of opioid use and that it is folly to consider mandated care for one while ignoring it for the other.

Having spent more time in the treatment literature, specifically looking at mandated care I still maintain that on balance the evidence indicates it is probably as effective as voluntary treatment, though we must acknowledge the contingencies above.  I am also anxious to see new research with programs that employ cutting edge pharmacological interventions.  I maintain my initial position that mandated treatment is ethically justified insofar as it it effective and I maintain that under the proper conditions it is probably as effective as voluntary treatment.  However, Kate as well as other former students of mine in the field as well as colleagues with expertise in this area point out another problem with mandated care: implementation.  The original purpose of my post was so answer an ethics question and develop an ethical position.  It is however worth mentioning the problem of feasibility.

Policy and Infrastructure Challenges

            The system we have in place (I am speaking of Massachusetts here) for treating persons who have been mandated under Section 35 is, as the kids like to say, a hot mess.  In short, there is a lack of beds in treatment facilities.  A few choice observations from friends and former students working in the field.

“treatment and lack of beds is deplorable and lack of solid sober accredited housing for women is practically non existent. My clients beg for opportunities, only to be rejected because of underlying mental health issues. Not many with serious addictions lack mental health problems”

“There’s also a huge gender discrepancy in MA. With section 35, when the treatment beds are full men were sent to Bridgewater, minimum security with built in addiction services. Women however were sent to Framingham, medium security with no addiction program in place. I know they passed legislation last year to increase women’s services and resources in this regard but I’m not too sure of how that has panned out. Of my female patients who have been put on section 35s in the past 5 years, all but one went to prison for 90 days.

So, there is obviously a serious policy and implementation problem here.  The issue of policy and implementation comes after the question of whether mandated care is even morally justified.  And hey, policy problems are easy to fix, right?  In all seriousness, I would like to see a case made that invokes the right to treatment.  If the state is going to abridge the liberties of an individual then the state must provide the kinds of services and therapeutic milieu that could be reasonably expected to help an individual regain the ability to exercise personal autonomy.  Absent that, mandated treatment becomes, as my colleague Michael Melendez points out, punishment and custodial care rather than treatment. If the state cannot provide the solicitous care individuals mandated to treatment require then the state is violating the basic premises of mandated care that undergird its moral justification. If the state cannot or will not make the necessary policy, infrastructure, and economic commitments that allow for effective interventions then the state no longer has the moral foundation to continue the practice of “sectioning” persons with substance use disorders.

Further Issues to Consider

          There are three other points that folks brought up that I was going to address in this post. The first is the misreading of J.S. Mill.  My friend and colleague Dom Sisti made mention of this, and I am in agreement that Mill’s thoughts on individual rights are not as libertarian as is often supposed.  The other issue that was brought up by two people who really know the substance use literature (my colleague Michael Melendez and my doctoral classmate Maayan Schori) is the issue of harm reduction policies and programs.  I have been thinking about these two things a lot and think they each deserves its own stand alone post.  The ethics of harm reduction are quite complex and require some space to discuss.

            Lastly, Dom Sisti challenged me on the fact that I have thus far justified my argument in favor of mandated care based on the scale of the public health problem.  Are we justified in mandating care even if the problem is demographically small?  What if it is only one person?  To be sure, I couched a lot of my argument in the social welfare and public health implications of substance use disorders.  This makes sense in light of how we have generally conceptualized individual rights, especially in the United States–“do what you want so long as you don’t interfere with others.”  We tend to think of our rights as negative, that is, we have a right to be free from interference.  For instance, my freedom of speech means that the government may not censor me, however, it does not mean that the government must provide me the means or mechanism for personal expression (like this blog).  I have a freedom from rather than a right to.  As such, we can partly justify mandated treatment on public health grounds since the scale of the public health issues and the accompanying transgression of the rights of others trump an individual’s right to non-interference.  However, I think that implicit in the idea that we curtail freedom in order to promote freedom (Caplan’s argument) is a different conceptualization of rights and the role of the state.  There is an implicit notion that the state has a part to play in actively promoting the exercise of rights and autonomy.  If we conceptualize the state as having a role in promoting human flourishing then it follows that mandating treatment for persons with substance use disorders is morally justifiable on teleological grounds apart from the public health implications.  I think that virtue ethics may provide a foundation for a more nuanced approach to this issue. I have an inclination toward virtue ethics and will be exploring in future posts the role of virtue ethics in social work and how they are a remedy to the kind of shallow, bureaucratic decision making and enforcement of political orthodoxy that are engendered by the current NASW code.

Mandated Treatment for Addictions (Re)considered

For most of my career in social work and social welfare policy advocacy I have favored a conservative approach to the use of civil commitment for persons with mental illness.  This view has been informed by my knowledge of its historical abuse, especially as directed against women and minorities. When it comes to persons with addictions I have outright rejected the use of civil commitment procedures on philosophical grounds.  The growth in opioid addiction, overdoses, and accompanying public health and social welfare challenges it poses have prompted me to reconsider my generally civil libertarian thinking on addiction and civil commitment.  I now support the use of civil commitment/mandated treatment for addiction for two reasons. The first is a practical/instrumental consideration of the growing social and economic burden addiction is creating. The second is that a moral case can be made (as Art Caplan has) that we paradoxically promote the autonomy of individuals with severe addiction in the long term by temporarily abridging autonomy in the short term.

The Challenges of Autonomy and History

                Even a cursory glance at the history of civil commitment and involuntary treatment in the United States and Europe reveals policies and practices in which some of the worst abuses of civil liberties have been endemic.  These abuses have been motivated by a constellation of historical issue ranging from fear and medical ignorance to economics, racism, sexism, and political oppression.  Let’s not pretend that any discussion of involuntary treatment doesn’t take place against this very dark horizon of excess and abuse.  I have certainly couched many of my own reservations about civil commitment in this historical narrative.  What’s more, the sad history of civil commitment has reinforced my philosophical reservations.

“…the individual is not accountable to society for his actions, in so far as these concern the interests of no person but himself. Advice, instruction, persuasion, and avoidance by other people if thought necessary by them for their own good, are the only measures by which society can justifiably express its dislike or disapprobation of his conduct. (J.S. Mill, On Liberty, Chapter V, p. 177)

Mill was an Englishman but manages to capture a very American sense of individual rights.  Insofar as my actions do not cause harm to others, I am free to pursue my own ends.  You may plead, argue, or even beg—that’s fine—but under most circumstance you cannot use the power of the state to interfere or coerce.  Mill goes on to argue the terms under which the state may intervene to prevent crimes or maintain a social, political, and economic environment conducive to the exercise of liberty.  Rereading Mill, I am struck by how many civil libertarians (I guess I must include myself in this) have read the first part quoted above but then ignored the rest of the chapter; it contains much more nuance than I had previously given credit. Perhaps I’ll revisit On Liberty in a later post. Nevertheless, I endorse the strict legal standards established by O’connor v Donaldson  (422 U.S. 563, 1975) and Lessard v. Schmidt, (349 F.Supp. 1078, 1972) which have always struck me as fairly Mill inspired.  When it comes to substance abuse, I have been opposed to the use of coercion outright based on my belief that all competent adults have the right to refuse medical interventions. This belief is also rooted partly in Mill’s ethics.

Holding in our heads, as many of us in the field of social welfare do, the history of civil commitment and our very Western understanding of autonomy, attempts to expand the use of civil commitment procedures often elicit a visceral response. I am reminded of the backlash against a JAMA article from 2015 called Improving Long-term Psychiatric Care: Bring Back the Asylum. To say the article caused a stir is an understatement.  The controversy was probably enhanced by the fact that one of the authors is noted bioethicist and bomb thrower Ezekiel Emmanuel.  It so happens I know the lead author Dominic Sisti from my days at Penn, and while I disagreed with his conclusions, I found his argument to be rooted in both reason and compassion.  But, it took a while for the dust to settle and a meaningful discussion to emerge from the article.  Why?  Civil commitment is one of those issues that inflames passions.  However, feeling are not the end of a debate.  Sometimes they can be the beginning but they should never be the end.  Given the scope of the addiction problem in the U.S.—specifically opioid addiction—it is time to reconsider coerced or mandated treatment (even the word “coerced” can make one cringe).

An epidemic?  Probably

                I don’t like to use the word epidemic lightly.  Popular media tends to throw the term around in their typically sensationalist way to drive the fear and outrage that sells papers and drives clicks.  That being said, the current jump in opioid overdoses is properly called an epidemic—or at the very least a crisis.  Massachusetts alone has seen a 35% increase in opioid related deaths between 2014 and 2015.  In 2015, the death rate in Massachusetts due to opioid overdoses was about 25 persons per 100,000 according to the CDC or 1751 individuals.  Data for 2016 show an increase to 1,979 deaths (data are partially estimated).  This increase in overdose deaths is common across much of new England, the mid Atlantic, and parts of Appalachia and the southwest.   These increases are stunning in light of the fact that anti-overdose medications such as Naloxone are readily available in many places.  Also, these rates may be a gross underestimate.  There is a huge impact for substance abusers and their families: lost potential, parents losing children, children losing parents, and wives and husbands losing spouses.

While “psychic damage” may be hard to quantify, the actual burden on the social welfare system is something we can probably get a handle on.  The foster care system, already struggling to meet demand, is under even greater strain.  Further pressure is being put on police, ambulance services, homeless shelters, jails , and even librarians.  We are also looking at an increased burden of infectious disease  and new challenges in treating HIV/AIDS.  And shall we also talk about the children born addicted to opioids?

Despite the fact that the medical profession has itself been the gateway to opioid addiction for many users, we tend to want the individual to shoulder the entire burden. A position that is hard to justify when one considers that the U.S. accounts for 5% of the world’s population but consumes the vast majority of its prescription opioids; perhaps up to 80%.  The use of prescription opioids has been linked to the use of heroin. Despite this structural problems associated with addiction, the backlash against individuals with substance abuse problems has been sadly predictable.  One sheriff in Ohio has made headlines by refusing to allow his officers to carry Narcan.  Will this our response to the suffering of others and the suffering of their families?  Just put them out to pasture? The Governor of Maine has argues that the “Lazarus” effect of Narcan serves to do little more than create a moral hazard and encourage abuse (the same stupid argument was used against the distribution of free condoms during the height of the AIDS crisis).  While the debate over the use of Narcan rages in places like Ohio and Maine , one consideration that has not received the same media attention is the use of civil commitment procedures to treat addiction and therefore reduce the overall burden on first responders.

Current Law

          There are 38 states that have statutes permitting the use of civil commitment for the purposes of addictions treatment. There is wide variability state to state in terms of the ability and willingness to use civil procedures to mandate D&A treatment. These laws are only used regularly in about 15.  In 5 states statues have never been used. Here in Massachusetts, involuntary treatment for addition is defined under section 35 of the Massachusetts General Laws.  Section 35 permits the courts to involuntarily commit someone whose alcohol or drug use puts themselves or others at risk for up to 90 days.  The action must be requested by spouse, blood relative, or guardian or police officer, physician, or court official who must fill out papers at local court. The court can order commitment only if there is a medical diagnosis of alcoholism or substance abuse, a likelihood of serious harm to the subject or others as a result of the substance abuse exists. Very similar to the standards for psychiatric commitment.  Several states, including the libertarian bastion of New Hampshire, are considering similar legislation.  In some cases persons with addiction are asking to be committed.   

But legal does not mean ethical.  To be ethical, mandated treatment must be justified in terms of both means and ends.  In other words, we must be able to justify civil commitment as ethical in theory as well as effective in practice.  I’ll touch on the effectiveness question first.

Effectiveness of Mandated Care

          The big question of course is does mandated treatment work?  The immediate response of many people is “no,” believing that persons with addiction must first “want to get better.”  This general attitude may relate to how we conceptualize addiction and recovery, especially in the U.S.; we believe that recovery requires not just an abatement of symptoms, but also a moral conversion.  The actual evidence is not so clear cut, and appears to favor the notion that mandated treatment is as effective or almost as effective as is voluntary treatment.  Mandated treatment has been endorsed by NIDA.  There is no denying that there is a lot of room for more and better research on this topic; addictions treatment in general is an area that is in need of more research and innovation. That said, NIDA argues that the relapse rates for addiction are similar to those of other chronic diseases.  Assuming that forced or mandated treatment is roughly equivalent in its effectiveness to voluntary treatment, the question then becomes whether it is morally justifiable to force an adult to undergo such treatment.

The Ethics (Re)considered

                I understand that any effort to curtail individual autonomy will be controversial; I myself have been a vocal critic of paternalism in social work.  Nevertheless, we need to have a conversation about the limits of individual autonomy rather than taking it to be an absolute. A rather one sided and ham-fisted article on The Daily Beast talks about civil liberties and autonomy without considering whether a person with a severe substance abuse disorder can meaningfully exercise those rights.  Furthermore, we often marginalize another prima facie duty which is to approach out clients with beneficience, that is, to understand that there are times when we must act in the best interest of others when their capacity to make decsions is compromised

 Art Caplan  has argued that rather than understanding autonomy as an absolute value that must be upheld at all times, we are justified in abridging autonomy when, paradoxically, it helps guarantee autonomy.  It is worth reading the entire article, but in short, Art’s argument is this:  a person suffering from a severe substance abuse disorder is no longer capable of meaningfully exercising personal autonomy due to the “behavioral compulsion” of the addiction.  If a person undergoes detox and enters into recovery, he or she may regain control over those compulsions and thereby exercise autonomy in a meaningful way.  He or she may make plans for the future, deliberate over choices, and significantly reduce the risk that the state will be forced to take away his or her freedom after a criminal act is committed.  Thus, we curtail autonomy to promote autonomy.

For the reasons outline above, I have changed my position on involuntary treatment for substance abuse disorders.  The use of civil commitment procedures is justified both morally and instrumentally.  We should be under no illusions that there is not the possibility of abuse of the system.  There is need for a nuanced debate on what the conditions or criteria for civil commitment should be.  If psychiatric commitment is any indicator, the policy and legal debates will be intense and ongoing.  Those reservations aside, the scale of the opioid problem and its impact on individuals, families, and our social welfare system justify this approach.