Sunday, 16 November 2014

What's Mine is Theirs?



“When you work hard, the results are yours.”  When I was young, that’s what my dad would often say to motivate me to study hard.  I wish things were that simple. 

I took a hiatus from blogging partly because I have been busy working on various articles for publication, and partly because I was applying to an academic program, and didn’t want to say things that can give them pause if the admissions committee members were to google me.  For academics, blogging about our own ideas and thoughts would not count for evaluation and promotion purposes.  Not even if they were well researched.  (But I would admit that I’m not blogging for an academic audience.)  Only peer-reviewed articles published in high-impact journals would count.  Self-published blog entries may get us in trouble for nothing when we express controversial ideas.  So many academics with very interesting ideas wouldn’t even blog, especially if they are pre-tenure.  

If my dad was correct, the result of my research work would be mine, whether in the blogosphere or in academic journals.  But copyright provisions in the publishing industry make clear that the results of my work are not necessarily mine.  I may own my ideas while they are still in my head or on my computer – and trust me, they are brilliant in my head!  But the journals own the copyright of the result of my ideas – i.e., the article – and they get to decide how that is distributed or shared.  For many people who don’t have access to an academic library or a good library collection (e.g., in poorer countries), they may have to purchase (or in some cases, rent) an article of interest, which can cost more than $1.20 per page.  Not from me.  From the publisher.  So, even if we work hard, the results aren’t ours.  If I want to share “my” article with the world by making it Open Access, some journals would charge $2000+ per article.  Some scholars, particularly those with grant money, may pay for that because that can get more people to read and cite their work, which is worth something in the academic world.  

A friend who advocates for technological and informational freedom took me to see Cory Doctorow recently and motivated me to blog again.  It’s no coincidence that these two gentlemen also share a love for Ubuntu, which is so much more than just an open source operating system.  Doctorow’s fascinating new book, Information Doesn’t Want to be Free, examines the state of copyright and creative success in the digital age.  True to his word, Doctorow told the audience – after the host announced all the usual prohibitions at most artists’ or writers’ appearances – that he would be fine if people wanted to take his pictures or even record his interview and put them on the web.  A lesson from his talk and his book is relevant here: if a publisher refuses to publish your work unless they can put a lock (e.g., copyright) on it, “you can be pretty sure that those locks aren’t there for your benefit.”

Sadly, unlockers have not been treated kindly.  Some may remember Aaron Swartz, who would have turned 28 on November 8th if not for his suicide 22 months ago. Instrumental in the campaign to prevent passage of the American Stop Online Piracy Act (SOPA), Swartz was being charged with wire fraud and violations of the Computer Fraud and Abuse Act for systematically downloading academic journal articles from JSTOR, a digital repository.  These charges carried a cumulative maximum penalty of $1 million in fines, 35 years in prison, and more.  

Many academics are passionate about their work and treasure any opportunity to facilitate dialogues and progress in their respective fields.  They would likely have been happy to share their work publicly.   But depending on the copyright provision, they may not have been allowed to do so.  Doctorow’s book reminds me of how our current intertwining evaluation and publishing practices make it difficult for real exchange and promotion of knowledge.  

Efforts have begun to facilitate the adoption of Creative Commons in the academic world to expand the sharing of scholarly work, with some universities (MOOCs) also recognizing the value of making course materials open access.  Moreover, various accomplished scholars have taken a stand in raising awareness of certain for-profit journals. In the case of academic journals, when publications are no longer restricted to the print form, scholars can also be more creative in using other media to share their work.  And maybe at that point, I can tell my dad that not only are the results of the hard work mine – I can even decide how to present them!

Image Source: work hard; Swartz

Saturday, 15 March 2014

Til Death Do You Have Dignity



Last week, I saw a preview of Whose Life Is It Anyway? (by Brian Clark) at the Cultch.  The powerful performance is about a witty sculptor, Ken, who became quadriplegic after a car accident.  Having lost his mobility and facing the prospect of living in an institution from there on, Ken believes that his form of existence is undignified.  He severs ties with loved ones and refuses various life-sustaining treatments that the hospital imposes on him.

Refusal of life-sustaining therapy is already legal in Canada. Justified by the ethical principle of respect for autonomy, patients who are capable of making healthcare decisions can refuse medical treatment, even if doing so would foreseeably lead to their death.  In recent years, debates about the so-called right to die focus on whether the autonomy argument also supports physician-assisted suicide and/or euthanasia.  

For this post, I will put aside the nuanced distinctions among various forms of assisted deaths.  My focus here is on people’s expressed desire to die allegedly because of their impairment.  Many argue that one’s desire to die is a private matter, such that control over one’s death is a natural extension of the right to privacy and an expression of one’s autonomy.  If people believe that their life with impairment is unbearable, even if they are not terminally ill, they should be allowed to end their intolerable suffering and have control over when and how they die.  

But discussions that focus on the person’s impairment often overlook the socio-political context within which people consider their life as not worth living. People with impairments, some of whom spend prolonged periods in institutionalized care due to lack of home support and other social resources, frequently lose control over their identity.  They are often desexualized, infantilized, and presumed to be globally incompetent by others.  While studies show that people with impairments often report a higher quality of life than that projected by people without impairments, our society continues to see a life with impairment as pitiful and tragic, and this attitude can further marginalize people with impairment and contribute to their despair.  Even though many are passionate in fighting efforts to legalize euthanasia or physician-assisted suicide as matters of civil liberties, few are as fervent in promoting suicide prevention by correcting the disabling social environment that causes or exacerbates people’s despair in the first place.  

Would Ken have wanted to live if he could return home with support instead of having to move to a care home? As I illustrate in a forthcoming book chapter, various court cases show that some people with impairments who seek assisted death would want to live if social support and opportunity-enhancing arrangements are available, even if their physical condition remains unchanged, suggesting that other factors can have significant impact on one’s quality of life and desire to live. 

The founder of Realwheels Theatre, which produces this play, maintains that the play isn’t about the value of a life with disability, but an individual’s right to choose.  But individuals never choose within a social vacuum.  Without examining the contexts of people’s desire to die and the social structure within which people form such desire, we cannot ascertain the autonomy of these decisions. 

Having lost a family member to suicide and other loved ones to terminal illnesses, I am keenly aware of the unbearable anguish that some go through, to the point that death appears to be the only feasible escape or comfort route.  My clinical ethics work has also given me a window to the agony suffered by many who struggle to hold on to hope.  I mourn for those who live or die in utter despair and loneliness, whatever the cause of such despondency, and yearn for better access to social and relational resources, mental health care, and end-of-life care.  In the context of impairments, we need to bear in mind that non-clinical concerns regarding the loss of social significance, communicative problems, living arrangements, quality of care, and loneliness often contribute to people’s suffering.  When an individual chooses death as the only viable way to escape an intolerable situation partly brought on by the social environment, it seems “perverse and unfair to say that this is an expression of self-determination or autonomy.”[i]

Perhaps Ken’s story is really about a right to live with dignity – to have one’s voice heard, to have one’s full humanity recognized regardless of one’s level of functioning, to be able to rely on others without feeling guilty, and to have control over one’s own identity and living environment.  Until we all live in a world that sees life with impairment and dependency as equally worthy and provides appropriate opportunities for people to flourish and retain hope, even legal access to euthanasia or physician-assisted suicide won’t guarantee dignity, in life or in death.  


 




[i] Jerome Bickenbach, “Disability and Life-Ending Decisions,” in Physician Assisted Suicide: Expanding the Debate, eds. Margaret Battin, Rosamond Rhodes, and Anita Silvers (New York: Routledge, 1998), 123-132: 128.

Thursday, 19 December 2013

Gladiators on Ice

A couple weeks ago in Boston, Shawn provoked a fight with another man, Brooks, after the latter offended Shawn’s colleague, Loui. Brooks refused to fight. A few minutes later, Shawn came back for the unsuspecting Brooks, pulling him onto the ground and punching him, all the while being cheered by screaming bystanders. Lucky for Brooks, security officials were close by, and they soon restrained Shawn, although not soon enough to spare Brooks from a concussion. While recognizing Shawn’s accountability, newscasters suggested that Brooks was a coward and should have just fought Shawn when he was confronted. Shawn was put on a one-month suspension from work and given a fine.

If this is your first time hearing about this real-life act of retribution, you may think that, regardless of Shawn’s reasons for wanting to fight Brooks, it is bizarre to suggest that Brooks should have complied. As the saying goes, violence begets violence. You may even believe that Shawn should be charged for assault and/or battery with a much harsher punishment, or question the moral character of people who cheered on during the attack.

So why do many think differently when fighting and vigilantism happen in organized sports? Hockey fans may recognize that the story above occurred in a recent Bruins-Penguins game, when Shawn Thornton retaliated against Penguins defenceman Brooks Orpik for an earlier hit in the game by pulling him from behind onto the ice and then pounding him in the head.

The National Hockey League sent what some call a “strong message” when it delivered the 15-game suspension. The “pretty honest hockey player who made a mistake” is now appealing the suspension. Putting aside how similar assaults off ice would fare in a criminal case, most commentators have been discussing this incident as either an individual player making an isolated mistake or the League’s inadequacy in curbing violence on the ice.

But violence in sports, particularly in hockey, goes beyond individual actions. As one commentator notes, telecasts of contact sports often build up the “sport as war” metaphor and replay violent hits in slow motion and close-ups camera shots. These clips are often replayed in promotional segments for upcoming matches. The cheering crowd in that incident reminds us that hockey fights are an accepted and enjoyed part of the game. Fans salute their “heroes” who are not afraid to transform their bodies into weapons and cause severe injuries to other human beings. They enjoy the brutality in sports because violence allows them to escape “that drab and monotonous way of life they have or that job they truly dislike.”

I may be idealistic here. But I want to think that regular people have more civilized ways to escape boredom than to hit or watch others hit someone’s child, brother, father, uncle, or partner. Play with the kids in their lives and teach them the real art and skills of various sports. Volunteer or be involved in the community. Have real human contact – and I don’t mean punching another human being. Perhaps people think there can be a different moral code on ice because fans can contain their thirst for blood only in the stadium. But it is hypocritical to say that we don’t condone violence in other parts of life except in hockey. And the fact is, the license to retaliate and the corresponding acceptance of violence and brutality in hockey have spilled onto the street. Let us not forget how sports fans often engage in destructive violence after their teams lose – the riot in Vancouver after Canucks’ Stanley Cup loss in 2011 was just one example. Insisting that violence is simply part of the game neglects the fact that the game is purposefully designed by humans within a certain social context, and can be changed if the context were to shift. Roman gladiators engaged in violent confrontations as part of the game as well, but we no longer consider those games to be acceptable. But if professional hockey has become (or continues to be) physical brutality in disguise, have we socially evolved since the Roman times?

Organized sports are big businesses. Referees, franchise owners, general managers, coaches, broadcasters, and players all operate within this context. They do what is in their interests. If fans stop watching and courts impose hefty fines on teams or organizations for injuries, profit-driven stakeholders would likely change and strictly enforce the rules of the game. Thornton’s 15-game suspension was handed out in the context of a looming class-action concussion lawsuit. But fans – who are supposedly everyday people – continue to celebrate violence despite the public health concern of concussions and related mental health issues. If regular people have no problem tolerating or even cheering for people who act like gladiators, those who control the game would likely have even less reasons to change the game.

It is easy to simply punish a bad apple. It is a lot more difficult to admit that we may be partly responsible for growing a rotten tree. If we not only fine players who hit, but also spectators, I bet that even if this strategy may not stop us from being hypocrites about violence, we can get rid of hockey violence overnight.

Images: Crime and Punishment, Orpik Injured, Canada: Hockey and Iraq

Sunday, 19 May 2013

You Can('t) Find Him in the Vegetables Section




I wonder who first thought of calling a person a “vegetable.” Certainly, some people may have minimal or undetectable consciousness, and these situations pose challenging clinical and ethical questions about whether to continue life-sustaining treatment that will unlikely provide any chance of recovery.  But how did we ever get to a point where we would call a human being a vegetable?  I eat vegetables.  Even vegans eat vegetables.
 
In Toronto, the situation of Mr. Hassan Rasouli, who underwent surgery to remove a benign brain tumour but then suffered a massive brain injury because of post-op infections, is being considered by the Supreme Court of Canada.  Very briefly, Mr. Rasouli’s physicians believed that their patient was in a “persistent vegetative state” with no realistic chance of medical recovery.  They decided to remove mechanical ventilation that was likely “futile” – an F word that some may find contentious and subjective.  Mr. Rasouli’s family fought against the decision based on their religious beliefs and their perception that Mr. Rasouli was gradually more aware of his surroundings.  They took videos of him clutching a ball thrown to him and making a “thumbs-up” gesture in response to his family’s requests.  As medical professionals continue to assess Mr. Rasouli’s neurological status, the Court’s task is to determine whether patient or family consent is necessary to withdraw life support. 

As mortal beings, there are times when even critical care will not reverse fatal conditions.  In some of these situations, aggressive treatment may cause more harm than benefits, and medical professionals have good reasons not to prolong the dying process or aggravate suffering with these interventions.  Mr. Rasouli’s medical team probably wondered if his family just didn’t get it or couldn’t let go, his wife being trained as a physician notwithstanding.  


From my experience as a clinical ethicist working with clinicians and families in similar situations, families often do recognize that the end is near.  But for many families, clinical indications are not the only considerations.  Many families also consider other relational and emotional issues when making treatment decisions, such as how various decisions may affect the family dynamic, symbolize their relationship with the patient, or honour their memories of their loved ones.  In times of unexpected medical tragedies and grim prognoses, many families also need time to process what’s going on to make sure that they are doing the right thing – after all, they will have to live with how their loved one dies for the rest of their own lives.  Many families want to hold on to hope, and advocate for their loved one who may not be able to speak for themselves anymore.  They want to remind those of us on the medical team that their loved one is not dead yet, so that we should not give up on them.  In their mind, stopping treatent equals abandonment.

Clinicians can be the best technicians and care providers they can be, but they are not miracle workers and should not be considered as such.  So keeping hope and not giving up cannot be about trying to do the impossible.  But they can be about remembering that, regardless of their recovery potential or neurological status, the patient in front of us is somebody’s partner, parent, grandparent, child, friend, or sibling with rich stories and relationships.  Keeping hope is also about reassuring families that we will honour their memories, relationships, and  grieving process, and that whatever the prognosis and treatment decision, we will never abandon the patient.  As my colleague and I regularly explain to clinicians and families, care is and will always be 100%.  Even when critical care may no longer be clinically appropriate, there is a lot that we can and will do to help the patient live as well as possible for as long as possible, as a palliative care colleague would often say.  We will continue to treat the patient with dignity and provide symptom management and pain relief as appropriate for the patients’ specific situations, and we will recognize the relational identity of the patient and help ease the family’s distress in these heartbreaking moments. 

Being involved in research regarding medical decision-making and bedside consultations, I contemplate how we can best serve the dying and their loved ones in the most distressing times on a daily basis.  My grandmother just passed away at the age of 98.  She was the gentlest soul, and yet her body was most resilient, making some of the care decisions very complex.  Lamentably, I could not communicate with her the last couple times I visited her -- she was not rousable on the days I visited, although my family assured me that she was more alert on other days.  In the past few years, there were times when I had to discuss with my family what care pathway would best honour my grandmother and promote her well-being if and when her health declined.  But most importantly, having worked with numerous compassionate and devoted clinicians, I hung on to one hope.  It was the hope that technologies had not desensitized us into thinking of human beings as mechanical body parts, and that regardless of the treatment decisions and my grandmother's (in)ability to communicate, she would never be treated like a broccoli, or a carrot.  She was my grandmother, and would and should always be remembered as such. 
 
Image Sources:
(1)    Carrot All
(2)    Mr. Rasouli