Ethics OSCE Station Blueprint

Station Name: Nancy B

Issue:

Decisions to Forgo Treatment

Presenting Situation:

Susan Potts is requesting the removal of her respirator. She has been diagnosed with chronic Guillain-Barre Syndrome. There is no hope for her recovery.

Activities:

Patient encounter.

Time Required:

10 minutes

This station was developed by Dr. Peter A. Singer (Centre for Bioethics and Department of Medicine, University of Toronto), and Anja Robb (Department of Family and Community Medicine, University of Toronto. It is part of the Ethics OSCE Project which is funded by Educating Future Physicians for Ontario (EFPO). There is an accompanying videotape. This material can be used for teaching or evaluation. It is not copyrighted and may be freely reproduced for educational purposes.

Instructions to Candidate:

You are about to see Susan Potts. She is a 25 year old woman who suffers from progressive motor paralysis caused by Guillain-Barre Syndrome. You are the physician newly in charge of her care.

For almost two-and-a-half years since the onset of the disorder, Susan has been intubated and living on a respirator. She now depends on this respiratory support to live, since her respiratory muscles have atrophied. A year ago, the chief neurologist at your hospital diagnosed a nervous disorder resulting in complete loss of the motor nerves. Susan was informed that there was no cure for her condition.

The nurses have told you that Susan wants to talk to you about stopping her treatment.

CHECKLIST ITEMS
^^^^^^^^^^^^^^^^


YES     NO     The Candidate:
        
               1.      asks why and/or when patient started
                       thinking about having treatment stopped.
----|-----------------------------------------------------------
               2.      asks if patient has discussed her
                       decision with family members and/or if
                       she is willing to have a family
                       meeting.              
----|-----------------------------------------------------------
               3.      asks about patient's mental
                       state/emotional state (i.e. is patient
                       depressed).                  
----|------------------------------------------------------------
               4.      asks if patient would like counselling
                       or support (e.g. from psychiatrist or
                       member of clergy).                   
----|-----------------------------------------------------------
               5.      ascertains what patient understands
                       about her condition (i.e. what
                       information she has been given about her
                       disease, or about her prognosis).                          
----|-----------------------------------------------------------
               6.      ascertains that patient understands
                       consequences of decision (i.e. that she
                       will die without respirator).                      
----|-----------------------------------------------------------
               7.      states that patient has right to refuse
                       treatment.
----|-----------------------------------------------------------
               8.      agrees to respect patient's decision or
                       to pursue request with ethics committee
                       or other knowledgeable authority.                          
----|-----------------------------------------------------------
               9.      describes what will happen in terms
                       of medications and keeping patient
                       comfortable.                 
----|-----------------------------------------------------------
               10.     states that patient can change her mind.
----|------------------------------------------------------------ 
================================================================= 
  
                              
RATE FROM 1-5:
 +------------------------------------------------------------+
 |        |          |          |    VERY    |                |
 | POOR   |   FAIR   |   GOOD   |    GOOD    |    EXCELLENT   |
 |  1     |    2     |    3     |     4      |       5        |
 +------------------------------------------------------------+

1.      How would you rate the candidate's communication skills?                                 
        1      2       3      4      5

2.      How would you rate the candidate's ability to address the
        ethical issue in this case?                 
        1      2       3      4      5

Instructions to Standardized Patients:

Your name is Susan Potts. You are 25 years old and single. Your parents are alive and well. You have 1 sister. You were a strong child, very active, loved life and having fun. You had planned to become a teacher. Before the illness, you were very religious. As a child you attended church regularly. You think of yourself more as a spiritual person now rather than religious. You believe in God, but you do not necessarily believe in going to church.

You are suffering from progressive motor paralysis caused by Guillain-Barre Syndrome. For almost two-and-a-half years since the onset of the disorder, you have been intubated and living on a respirator. You cannot breathe for yourself. You now depend on this respirator support treatment to live, since your respiratory muscles have atrophied. A year ago, the chief neurologist at your hospital diagnosed a nervous disorder resulting in complete loss of the motor nerves. You cannot move. You have been literally "nailed" to your bed. You have been told there is no cure for your condition.

You pass the time watching television. You are very sad about what has become of your life as a result of your illness. You do not want to continue living this way. It is not enough. Now you depend on others for everything, you have no privacy, and you feel this kind of life is not "livable". You are determined to be taken off the respirator and to let nature take its course.

You have talked about your decision with your family. At first, they didn't think it would be possible. It was difficult for them, but they support your decision.

In reality, a person on a respirator would not be able to talk. A certain suspension of reality is required. We are asking the candidate to talk to you as if you could talk.

Prompts are used to standardize the scenario and give all candidates an opportunity to address relevant issues.

PROMPT 1 (immediately):
I want to be taken off this respirator.

PROMPT 2 (by 3-4 minutes):
It's my life isn't it? Isn't it my right?

PROMPT 3 (by 5-6 minutes):
Will you do this for me?

PROMPT 4 (by 7-8 minutes):
What happens next? What's going to happen?

You know your diagnosis and prognosis. If asked, you know that you need the ventilator to live. If it is disconnected you know you will die. If asked why you want to do it, it is because living like you are living is not enough! If asked if you want to die, the answer is no. It's not really that you want to die, it's more that you want to be free of the ventilator. You do not want to die, but you cannot accept living on the respirator and life as it has become. If asked whether you're depressed, you can say: "I'm depressed about my situation, but since making this decision, I have some peace of mind." You are not pathologically and clinically depressed (i.e. you do not need treatment or medication for depression). Your affect is more one of resolve and determination to see this through.

Be prepared to answer questions such as:

How did you come to this decision?

After a lot of thought and talking with my family.

How long have you been thinking about this?

Almost a year. Ever since the neurologist told me I'd never get better.

Have you talked to anyone about your decision?

I've talked to my parents. You're the first doctor I've told.

What's it been like?

People have been nice to me. Everybody's been doing everything they can. I can't complain about my treatment. But I want more out of life.

Do you have any movement at all?

No. I'm nailed to my bed. I depend on other people for everything.

Have you received counselling about your decision?

No. I'm resolved within myself about this. But I don't mind talking about it with someone.

How has this affected you psychologically?

I was really sad about it at first. But I feel better now that I've made my decision.

Have you experienced a significant increase in sadness?

No. I guess I'm more frustrated than anything.

What kind of words would you use to describe how you feel?

Resolved. At peace.

What's the day like for you?

I'm trapped. I can't do anything for myself. I watch TV. My mom reads to me. But it's not enough. It's frustrating to be dependent on someone else all the time - for everything.

Are you still in contact with your friends?

Some still come to visit me but we don't have much to talk about really.

Are there any things that you still enjoy?

I like seeing my family. I like having my mother read to me. But it's not enough.

Do you know what would happen if the respirator was disconnected?

I know I would die. I would stop breathing and I would die.

Do you want to die?

No. It's not that I want to die. I just don't want to go on like this. I want to be free of the ventilator.

Are you a religious person?

I consider myself more spiritual than religious. I've made my peace with God.

Is there anything that could be done to make you want to reverse this decision? (e.g. another facility, going home, use of a portable respirator)

No. Nothing's going to make me better. I'm 25, I'm never going to get married. I'm never going to have a family or live the life I want. Living like this is just not enough.

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