Will to Die Show, Part 1

You may remember the story of Sue Rodriguez, who was diagnosed with ALS back in 1991. On two occasions, Rodriguez took her fight to have assisted suicide made legal in this country all the way to the Supreme Court of Canada -- and lost both times.  In 1994, she took her own life with the help of a physician who remains anonymous.  Stories like hers don't happen every day.

Nagui Morcos is a modern-day version of Sue Rodriguez.  Nagui, who is in his early fifties, has Huntington's disease, a brain disorder affecting one in ten thousand Canadians.  People with this condition lose control of their movements, their speech, and their emotions.  Over time, they lose their ability to think and to remember.  In the end, they become incapacitated and die. 

Nagui has lived with the prognosis of a near-certain death since being diagnosed in the mid 1990's, when he was in his late thirties.  In 2002, symptoms forced him to give up a successful career in marketing. 

Huntington's is a genetic disease.  The biological children of people with Huntington's have a fifty percent chance of getting the disease themselves.  Nagui has two brothers, both of whom have been tested and found to be free of the disease.  Nagui and his brothers watched their father die of Huntington's back in 1995. 

On the show, you will Nagui Morcos speak clearly and unequivocably about his desire to take his own life before a deterioration in his clinical condition forces someone else with the appropriate authority to act on his behalf.  Nagui says he was strongly influenced by his father's experience with the disease.  "Twice, my brothers and I were asked to play god with my father's life," he told me on White Coat, Black Art.  The first time, Nagui and his brothers told their father's doctors to do everything in their power to save his life.  The second time, they let their father die without life-prolonging intervention.  Nagui says he wants to end his life before his wife or some other decision maker has to "play god" with his life.

The other stated reason why Nagui wants to take his own life is that he wants his wife to be at his side when he does so.  He told me on White Coat, Black Art that his wife's greatest fear is that Nagui will take his own life without telling her and that the first she'll hear of it is when the police come knocking on her door. 

Of all the interviews I've ever done on the show, this one evoked the most conflicted feelings I have ever felt.  First, it's unfamiliar territory for me.  As an ER physician, I see lots of patients with suicidal ideation.  If I think they have a psychiatric disorder and are a danger to themselves and/or others, provincial mental health legislation obliges me to send them to a shrink - against their will if necessary by completing a Form 1 under the Ontario Mental Health Act. 

But Nagui belongs to a very different category of patient.  He sounded completely rational.  I could not detect any indications of clinical depression or a formal thought disorder suggestive of psychosis.  In the interview, Nagui said his neurologist will testify that he's of sound mind. 

Nagui mentioned seeking advice from Dying With Dignity, a non-profit organization that advocates for improved hospital and palliative care in Canada and provides a confidential support program for people at or near the end of life.

With Nagui's permission, I interviewed Dr. Sharon Cohen, a behavioral neurologist in Toronto.  Dr. Cohen is Nagui's specialist.  On the show, she talked of listening to Nagui in a non-judgemental way.  Dr. Cohen said it's her job to listen to Nagui and to let him know that his life has meaning to her but not to try and persuade him to stay alive.  Dr. Cohen said she has not sought the advice of a expert in bioethics.  However, did say that she's had a special interest in patients like Nagui and is informed by experiences looking after patients in critical care settings whose lives were prolonged by technology to futile lengths. 

Listening to Dr. Cohen, I felt even more conflicted.  I admired her honesty and willingness to listen to Nagui's desire to kill himself without judgment.  And yet, I also felt something else:  a desire to try and persuade Nagui that life is worth living not matter how grim the prognosis.  In some ways, I felt like the the videojournalist who records a house fire and then realizes that his or her greater duty is the put the camera down and try to rescue the people trapped inside.

I'm also conflicted because the desire to end one's life -- often experienced by people with Huntington's disease -- is not always a rational desire.  A study by Paulsen in the American Journal of Psychiatry found much higher rates of suicidal ideation than in the general population. The study identified two critical periods when suicidal thoughts jump sharply: immediately prior to receiving a formal diagnosis and as symptoms progress to the point that independence diminshes.

When it comes to Huntington's disease and depression, it's not a case of either or. Codori and colleauges documented a strong correltation between a diagnosis of Huntington's disease and depression.  That study concluded that physicians who care for patients with Huntington's disease consider consulting with a mental health professional.  In her interview, Dr. Cohen said she has had patients with Huntington's who she felt were depressed; in those cases, she arranged for urgent consultation with a psychiatrist. I was glad to hear that.

To help me sort through the ethical minefield, I asked Dr. Stephen Workman, a general internist and ethicist at Dalhousie University, to weigh in on the doctor's responsibility with patients who want to take their own life. 

At the end of my interview with Nagui, I asked him to come back.  I don't remember ever doing that before.  Maybe it's because a part of me hopes for one last chance to get a fine man like Nagui to change his mind and choose life.  Don't blame me for being conflicted.  Who says MDs are certain about everything?

NOTE: To hear Part 2 of this show, please click here.