Ethics discussion questions on AWAKENINGS1. How do we know that the catatonic patients are in there in a morally relevant sense Severalterms are used frequently throughout the film as though they indicate moral relevance: (a)patients are described as merely asleep, (b) they are described as being in there (as though theyhave locked-in syndrome), (c) they are described as merely lacking will… but that they can stillmeaningfully participate in the world if they borrow the will of something or someone else (forexample, by grabbing a moving object, or being steered to walk by a nurse).

2. Note the following conversation between Dr. Sayer (played by Robin Williams) and theelderly doctor Peter Ingham (played by Max von Sydow) as they watch historical film footagefeaturing some of the survivors of the Encephalitis epidemic of the 1920s and 1930sDr. Ingham: I began to see them in the early 1930??™s??¦I referred them to psychiatrists. Beforelong they were being referred back to me. They could no longer dress themselves or feedthemselves. They could no longer speak in most cases.

Families went mad. People who werenormal, were now??¦elsewhere.Dr. Sayer: What must it be like to be them What are they thinkingDr. Ingham: They??™re not. The virus didn??™t spare the higher faculties.

Dr. Sayer: We know that for a factDr. Ingham: Yes.Dr. Sayer: Because??¦.

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Dr. Ingham: Because the alternative is unthinkable.How should we think about persons in catatonic states How do we determine whether or notthey are able to even register our attempts at communication What do we owe to persons insuch a state in terms of their rights to care What if people require artificial life supports tocontinue living Who decides if and how and under what circumstances to continue or not tocontinue providing care for them3. Note the following conversation between Dr. Sayer and Mrs.

Lowe (Leonard??™s mother):Dr. Sayer: Does he ever speak to youMrs. Lowe: Of course not.

Not in words.Dr. Sayer: He speaks to you in other ways. How do you meanMrs. Lowe: You don??™t have children.

Sayer: No,??¦Mrs. Lowe: If you did you??™d know.What does Mrs. Lowe understand about Leonard that Dr. Sayer at this point does not Personswith developmental disabilities sometimes are not able to speak or vocalize their wants, needs,thoughts, etc. in conventional ways. However, they may have just different ways ofcommunicating, and those who know and care for them show themselves able interpreters oftheir expressed and sometimes unexpressed behaviour.

What evidence do we see of this in thefilm How might we work to re-see the capacities of persons with mental disabilities in ourcultureC:Documents and Settings m806891Local SettingsTemporary Internet FilesOLKB7AWAKENINGS Discussion Questions.doc Page 2 of 5Tim Krahn, Bioethics Department. Dalhousie University.4. What are the signs that the various characters use to judge whether the patients are morallyrelevant people, and are these appropriate Before he really begins to work with his patients, Dr.Sayer (played by Robin Williams) describes these patients as ???insubstantial ghosts.??™ His fellowpsychiatrists view the catatonic patients on the ward as though they were just live tissue, andtheir abilities to move or respond to stimuli as mere reflex.

Dr. Sayer notices that Leonard(played by Robert DeNiro) has brainwave responses to his own name. Leonards mother believesher son is aware of his surroundings in some way, although she chalks it up to parental intuition.Should it even matter5. How would you (the audience) want to be treated if you were in Leonards position Wouldyou want someone to decide on your behalf to conduct experiments on you If so, under whatrestrictions: for example, would it be necessary that you yourself might benefit from theexperimental treatment If you knew that the treatment was only temporary, would you want tobe awakened at all6.

It is a common view that researchers are obligated to exercise more precaution with vulnerablepopulations, like children or persons whose mental capacities are seriously compromised. If Dr.Sayer had taken a similar approach to medical experiments with children as he did with the moremature adult patients seen in this film, would we think any differently about his professionaljudgment concerning the risks he was willing to expose his patients to Why or why not7. Before Dr.

Sayer is allowed to conduct the drug trial of L-dopa with Leonard, Dr. Kaufman(played by John Heard) insists that he obtain the written consent of Leonards mother. Whatallows Leonards mother to consent to the treatment on Leonards behalf What makes hercapable of this and Leonard incapable of giving the required consent for himself Did Dr.

Sayergive Mrs. Lowe adequate information for her to be able to make a good judgment of whether ornot the drug trial was in Leonards best interests Was Dr. Sayer forthcoming about the risksinvolved Was enough known about this drug to warrant testing it on clinical subjects–that is tosay, on patients8. Is it even ethical to perform experimental drug tests on these patients before conducting testson animal models or some other kind of models for testing At one point, Robin Williamscharacter sneaks into the lab to secretly triple the dosage given to Leonard of the experimentalmedicine. This seems morally legitimate because it worked — it awoke Leonard — but does thissuccess justify both the risk and the deception9.

When it is evident that the therapeutic therapeutic effects of his experimental drug treatmentare wearing off and that he is beginning to suffer serious side-effects, Mrs. Lowe in conversationwith Dr. Sayer and Dr. Kaufman states:Mrs. Lowe: When my son was born healthy, I never asked why. Why was I so lucky, what did Ido to deserve this perfect child, this perfect life But when he got sick, you can bet I asked why. Idemanded to know why.

Why was this happening There was nothing I could do about it. Therewas no one I could go to and say, “Stop this, please stop this, cant you see my son is in pain”Dr. Sayer: Hes fighting, Mrs. ??¦C:Documents and Settings m806891Local SettingsTemporary Internet FilesOLKB7AWAKENINGS Discussion Questions.doc Page 3 of 5Tim Krahn, Bioethics Department. Dalhousie University.

Mrs. Lowe: Hes losing.Clinicians and family members or friends are sometimes desperate to see improvement on thepart of persons who are ill Those with illnesses can be desperate to be better. Our need to regainand restore health can blind us to the risks that sometimes accompany experimental therapies.What principles and regulations need to be in place to prevent medical experiments that are toorisky with the potential for unacceptable harms to research subjects or patients10.

The cost of administering the L-dopa to 15 patients was $12,000 (US) in 1969. Why are newdrugs so expensive What justifies their price if they are not even proven What do you make ofthe way the funding was generated for the experiments Should the kind of research we see inAWAKENINGS be funded by private donors What drug costs are covered, if any, underMedicare in Canada What determines who gets coverage and who doesnt In this regard, whatis fair about our social welfare system in Canada in providing for citizens medical needs andwhat is not Is this an issue that should concern everyone, those that are relatively healthy asequally as those that are not so well off11. What is an orphan disease The elderly doctor Peter Ingham at the beginning of the filmdescribes the Encephalitis survivors as ???medically irrelevant.??? He adds: ???That??™s the problem witha unique disease.

Once it no longer rages, I??™m telling you, it becomes very unfashionable.??? Giventhat we have limited research dollars and limited funding for health care, how do we protectagainst the neglect of those who happen to contract orphan diseases or conditions12. When Leonard is prevented from going for a walk on his own, is his outrage justified Heargues (reminiscent of ONE FLEW OVER THE CUCKOOS NEST) that the doctors and societyin general are sick for locking him and his fellow patients away from general society out of fearof what they represent. Is there merit to this claim and Leonard??™s further speech that: ???It isnt usthat are defective, its them. Were not in crisis, they are. Weve been through the worst that canhappen to a person and survived it. They havent.

They fear it. And they hide from their fear byhiding us, because they know, they know ??¦Because we remind them that there??™s a problem thatthey don??™t have an answer to. ??¦We??™re not the problem, they are the problem.???13. Whose safety is at risk if Leonard were to have been allowed to go for a walk on his own Atthat point in his recovery, was Leonard capable enough to make decisions for himself Whatauthority do his doctors have over whether or not he should be prohibited from leaving theinstitution at his own behest Should Dr. Sayer have fought harder to let Leonard have his walks,or at least should he have been up front with Leonard before meeting with the committee that hewould not be supporting Leonards petition14. When Dr.

Kaufman asks Leonard what difference it makes if he is able to go for a walk allalone or presumably with an accompanying staff from the clinic, Leonard responds by saying: ???Itmakes all the difference??¦.You didn??™t wake a thing, you woke a person. I??™m a person.??? What doesLeonard mean by this What is it about being a person that includes being autonomous??”beingone??™s ???own captain??™, so to speak How is this different from just being a thing What happenswhen we treat persons as things Does this ever happen anymore in today??™s institutions, or inC:Documents and Settings m806891Local SettingsTemporary Internet FilesOLKB7AWAKENINGS Discussion Questions.doc Page 4 of 5Tim Krahn, Bioethics Department. Dalhousie University.

present medical settings Have we made any moral progress in this way since the times depictedin the film15. Note this conversation at the beginning of the film when Anthony (the hospital orderly) andDr. Sayer are walking down the corridor together:Anthony: Spent much time in a chronic hospital DocDr. Sayer: I??¦.

.Anthony: You??™d remember??¦.Dr. Sayer: What are all these people waiting forAnthony: NothingDr.

Sayer: But how are they supposed to get wellAnthony: They??™re not. They??™re chronic. ??¦We call this place the garden.Dr. Sayer: WhyAnthony: ???Cause all we do is feed and water.Providing the kind of care Leonard and his fellow residents require is both very mentally andphysically challenging. It is difficult for the hospital staff portrayed in this film not to slip intoneglecting their charges as persons and instead treating them as things. Yet we also witness thatmany of the staff seem to come up with innovative ideas of how to engage the residents.

Whatallows them to see these possibilities What are factors that could stand in the way of acting in ahopeful way with residents How does one nurture hope that is both uplifting and yet realistic(not cynical)16. What do you think of the kind of care provided in the chronic hospital where Leonard livesWhat do you think of the architectural setting as a ???care facility??™17. Why is it a compliment when Paula remarks with astonishment to Leonard: ???You??™re apatient You don??™t look like a patient.??? One can feel empathy for Leonard in this situation. Why18. What do you make of Leonard??™s speech when he states to Dr. Sayer: ???Read a newspaper,people have forgotten what life is all about. Theyve forgotten what it is to be alive.

They need tobe reminded. They need to be reminded what they have, what they can lose, what I feel, this, the,the, the ….???19. First and foremost, when reflecting on the experiments with L-Dopa conducted by Sayer andcolleagues on the patients in their care, there is a pull in two directions: on the one hand, thereare serious worries about the moral propriety of what they did; on the other hand, there is a sensethat for a brief period of time there was a restoration of what had been hitherto lost (and, inrestoring what had been lost, successful treatment). It seems impossible not to be moved by theawakening of Sayers patients.

This seems to speak against blanket judgments about the proprietyof intervention, even in cases where the biochemistry of the patient is intentionally, thoughexperimentally, changed. How do we reconcile a compassionate response to the results of suchexperimentation with worries about using patients as guinea pigsC:Documents and Settings m806891Local SettingsTemporary Internet FilesOLKB7AWAKENINGS Discussion Questions.doc Page 5 of 5Tim Krahn, Bioethics Department.

Dalhousie University.20. In what ways is Doctor Sayer a kind person How integral is being kind to doing his jobDoes Dr. Sayer??™s kindness ever facilitate or get in the way of his professional judgment Whatdo you make of the following conversation between Dr. Sayer and Nurse Costello as they view amovie of Leonard??™s deteriorated state togetherDr. Sayer: You told him I was a kind man ..

. Its kind to give life only to take it awayNurse Costello: Its given and taken away from all of us.Dr. Sayer: Why doesnt that comfort meNurse Costello: Because you are kind.

And because hes your friend.There are many indications that Dr. Sayer relates to Leonard as a friend and not only as aprofessional. In doing so is Dr. Sayer contravening what is expected of him as a professionalWhy21. Though it seems an act of compassion to seek such awakenings, even if they only occur forlimited periods of time, is such a pursuit compassionate There was a great deal of anguish, bothfor the patient and his or her caregivers, associated with the subsequent neurologicaldegeneration post L-Dopa intervention.

How is this properly weighed against the brief happinessassociated with the period of full awakening22. In the movie, Leonard talks of experiencing nothing when he stops engaging with hisenvironment. The ability to catch balls or pass them between individuals, though a remarkablefeat of information processing, need not evince an accompanying phenomenal consciousness.The relevant behavior of patients with blind-sight comes to mind here.

Though Leonardsexecutive functions are spared in some sense, they are not in another. For Leonard and his fellowpatients, how should we talk of the period between awakenings23. When Leonard becomes more assertive, and almost volatile his mother accuses Dr. Sayersaying: ???I don??™t know who that is up there. I don??™t think he knows. (to Sayer) You??™ve turnedLeonard into something he is not.??? Is this true Has Dr.

Sayer done Leonard a disservice IsLeonard??™s mother right to expect that her son not be the person he is on L-dopa How changed isLeonard24. In trying to figure out the neurological condition of his patients, Dr. Sayer remarks: ???Onewould think that after a point enough atypical somethings would amount to a typical something.

But a typical ???what??™??? How true is this remark for neuroscience research Our identities are verylinked to stable brain functioning. How might brain changes result in identity changes forpersons How could changes to our brains affect how we think of ourselves and others Howmight this affect how we even think about our ethical obligations to one another25. After the therapeutic effects of the L-dopa no longer seem to be working for Leonard and hisParkinsonian condition worsens dramatically, he says to Dr.

Sayer: ???Sometimes I??™m not aperson, just a repertoire of tics. ??¦This isn??™t me.??? What does Leonard mean by this Is hispersonhood really under threat from this disease In what way(s)