CONSIDER THIS PAINTING BY Robert Pope
“Sparrow”
Questions for reflection or group discussion
Who do you think this patient is and what are they thinking?
You’ve come to obtain consent from this patient for a procedure. How do you start that conversation?
When you start talking to the patient, you realize they’re confused and not sure where they are. What do you do next?
DETERMINING WHO SHOULD PROVIDE CONSENT
Patients have a right to freely choose whether or not to have a medical intervention. If they cannot, loved ones (next of kin) can exercise this right on their behalf. Selecting an appropriate decision maker can be broken down into three general steps.
STEP 1 - Is your patient competent, has capacity, and is legally able to provide consent? If the answer is yes, that is the person you should talk to first for consent.
STEP 2 - If your patient is unable to consent for themselves, select an appropriate surrogate decision maker.
STEP 3 - If your patient is unable to consent for themselves AND there are no appropriate surrogates or time to find one (emergencies), clinicians can proceed with presumed consent or use the best interests principle.
***NOTE - These situations vary a bit from country to country, state to state, and even institution to institution. Read more below.
STEP 1 - CAN YOUR PATIENT CONSENT FOR THEMSELVES?
Legal criteria for consent varies a bit from country to country and state to state. Generally there is a minimum age to provide consent such as 18 years old with special situations where younger patients can provide consent for certain things such as testing for sexually transmitted infections.
The patient must also have competency and capacity.
Competency is only determined by a court and is absolute. All patients are legally competent unless a court has deemed them to be incompetent. In such a case, the patient will have a court appointed guardian to make decision of their behalf. This is the person you should talk, not necessarily their next of kin.
Capacity is determined by any qualified medical professional and varies with time and the decision being made. Someone may lack capacity one day but then clinically improve and have capacity a different day. They may also lack capacity to make a more complex medical decision but have capacity to make simpler one.
Clinicians often incorrectly assess capacity. For example, an estimated 1 in 4 inpatients lack decision making capacity and clinicians incorrectly assess capacity in more than half of these patients. Capacity is often incorrectly assumed to equate to being “A&OX3” or patients with diagnoses such as schizophrenia or dementia are assumed to lack capacity. Instead we should assess capacity at that time for that specific decision. Although being “A&Ox3” correlates with having capacity it is not part of the definition. To have capacity, the patient should demonstrate the following 4 criteria when talking to them about a decision.
Understanding - They understand the situation and their options
Appreciation - They appreciate the nature and potential outcomes (risks and benefits) of those options
Choice - They express a choice based on their values, which is free from coercion
Reasoning - They can explain coherent reasoning, weighing the risks and benefits of the options
If your patient is legally able to provide consent with competency and capacity, that is who you should talk to first regardless of previous diagnoses or the existence of a durable power of attorney. Some patients with decision making capacity may defer to others, such as their family, to make the decision on their behalf. This is permissible as along as you have given them the option to decide themselves and the situation is free of coercion.
WATCH THE VIDEO AND TEST YOURSELF WITH THESE CASES
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The patient - you should first assess the patent see whether he still lacks capacity while doing your physical exam.
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Their legal guardian - if they were previously deemed inompent by a court, they should have a court appointed legal guardian. This may be that family member but often is not.
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Explain that you are legally obligated to give the patient the opportunity to hear their diagnosis and provide consent. If they would prefer not to hear it or have family consent for them, that is okay. You may also counsel the family that keep a serious diagnosis secret across multiple appointments and treatmets often is not possible but you will try to respect the patient’s wishes.
TEST YOURSELF - DOES THIS PATIENT HAVE CAPACITY TO CONSENT TO A JOINT INJECTION?
Mrs. Doe is a 76-year-old patient who was diagnosed with mild dementia two years ago. Today, she comes in with arthritis in her bilateral knees, and she would like to get cortisone injections to treat the pain.
Determine whether she has capacity to consent to the procedure.
STEP 2 - SELECT AN APPROPRIATE SURROGATE DECISION MAKER
An appropriate surrogate decision maker should free of coercive relationships and use substituted judgement, meaning that they express what they believe the patient would have wanted, not necessarily what they would chose to do.
If the patient has been deemed incompetent by a court (see step 1), they will have a court appointed legal guardian to provide consent on their behalf.
Otherwise, you should assess whether the patient has appointed a preferred surrogate decision maker. Jurisdictions vary but in most patients can appoint a health care representative or durable power of attorney to make decision on their behalf when they cannot.
If no preferred surrogate has been appointed, jurisdictions vary on how to select a “default surrogate.” Two common models are either a prioritized list such as reaching out to a spouse prior to adult sibling whereas others defer to clinicians to choose the most appropriate surrogate or weigh input from multiple people who seem to be most familiar with the patient’s preferences.
What’s my state’s approach to default surrogates?
STEP 3 - EMERGENCIES AND BEST INTERESTS
What about situations where the patient lacks capacity and there are no appropriate surrogate decision makers or insufficient time to find one?
Emergencies and presumed consent - Most jurisdictions allow physicians to proceed with an emergent intervention if delaying care to obtain consent would likely result in death or serious harm AND a reasonable person would chose to have the intervention. This is called “presumed consent.” Institutions vary in how they require this to be documented such as having two physicians agree to proceed, but this often is not a legal requirement.
Non-emergent interventions and best interests - Some patients lack family or friends free of coercive relationships but the potential intervention is not emergent to justify presumed consent. In such situations, clinicians can still legally proceed with an intervention if they believe it is within the patient’s best interests and a reasonable person would likely agree to the intervention. However, individual institutions vary substantially in their policies for handling these cases. Often they either require an ethics committee to make decisions or multiple independent clinicians to agree that the intervention is within the patient’s best interest. Because of this variation, it is important to be familiar with your institutions’ policies.
CONSIDER THIS SHORT STORY BY WILLIAM CARLOS WILLIAMS
“The Use of Force”
They were new patients to me, all I had was the name, Olson. Please come down as soon as you can, my daughter is very sick.
When I arrived I was met by the mother, a big startled looking woman, very clean and apologetic who merely said, Is this the doctor? and let me in. In the back, she added. You must excuse us, doctor, we have her in the kitchen where it is warm. It is very damp here sometimes.
The child was fully dressed and sitting on her father's lap near the kitchen table. He tried to get up, but I motioned for him not to bother, took off my overcoat and started to look things over. I could see that they were all very nervous, eyeing me up and down distrustfully. As often, in such cases, they weren't telling me more than they had to, it was up to me to tell them; that's why they were spending three dollars on me.
The child was fairly eating me up with her cold, steady eyes, and no expression to her face whatever. She did not move and seemed, inwardly, quiet; an unusually attractive little thing, and as strong as a heifer in appearance. But her face was flushed, she was breathing rapidly, and I realized that she had a high fever. She had magnificent blonde hair, in profusion. One of those picture children often reproduced in advertising leaflets and the photogravure sections of the Sunday papers.
She's had a fever for three days, began the father and we don't know what it comes from. My wife has given her things, you know, like people do, but it don't do no good. And there's been a lot of sickness around. So we tho't you'd better look her over and tell us what is the matter.
As doctors often do I took a trial shot at it as a point of departure. Has she had a sore throat?
Both parents answered me together, No . . . No, she says her throat don't hurt her.
Does your throat hurt you? added the mother to the child. But the little girl's expression didn't change nor did she move her eyes from my face.
Have you looked?
I tried to, said the mother, but I couldn't see.
As it happens we had been having a number of cases of diphtheria in the school to which this child went during that month and we were all, quite apparently, thinking of that, though no one had as yet spoken of the thing.
Well, I said, suppose we take a look at the throat first. I smiled in my best professional manner and asking for the child's first name I said, come on, Mathilda, open your mouth and let's take a look at your throat.
Nothing doing.
Aw, come on, I coaxed, just open your mouth wide and let me take a look. Look, I said opening both hands wide, I haven't anything in my hands. Just open up and let me see.
Such a nice man, put in the mother. Look how kind he is to you. Come on, do what he tells you to. He won't hurt you.
At that I ground my teeth in disgust. If only they wouldn't use the word "hurt" I might be able to get somewhere. But I did not allow myself to be hurried or disturbed but speaking quietly and slowly I approached the child again.
As I moved my chair a little nearer suddenly with one catlike movement both her hands clawed instinctively for my eyes and she almost reached them too. In fact she knocked my glasses flying and they fell, though unbroken, several feet away from me on the kitchen floor.
Both the mother and father almost turned themselves inside out in embarrassment and apology. You bad girl, said the mother, taking her and shaking her by one arm. Look what you've done. The nice man . . .
For heaven's sake, I broke in. Don't call me a nice man to her. I'm here to look at her throat on the chance that she might have diphtheria and possibly die of it. But that's nothing to her. Look here, I said to the child, we're going to look at your throat. You're old enough to understand what I'm saying. Will you open it now by yourself or shall we have to open it for you?
Not a move. Even her expression hadn't changed. Her breaths however were coming faster and faster. Then the battle began. I had to do it. I had to have a throat culture for her own protection. But first I told the parents that it was entirely up to them. I explained the danger but said that I would not insist on a throat examination so long as they would take the responsibility.
If you don't do what the doctor says you'll have to go to the hospital, the mother admonished her severely.
Oh yeah? I had to smile to myself. After all, I had already fallen in love with the savage brat, the parents were contemptible to me. In the ensuing struggle they grew more and more abject, crushed, exhausted while she surely rose to magnificent heights of insane fury of effort bred of her terror of me.
The father tried his best, and he was a big man but the fact that she was his daughter, his shame at her behavior and his dread of hurting her made him release her just at the critical times when I had almost achieved success, till I wanted to kill him. But his dread also that she might have diphtheria made him tell me to go on, go on though he himself was almost fainting, while the mother moved back and forth behind us raising and lowering her hands in an agony of apprehension.
Put her in front of you on your lap, I ordered, and hold both her wrists.
But as soon as he did the child let out a scream. Don't, you're hurting me. Let go of my hands. Let them go I tell you. Then she shrieked terrifyingly, hysterically. Stop it! Stop it! You're killing me!
Do you think she can stand it, doctor! said the mother.
You get out, said the husband to his wife. Do you want her to die of diphtheria?
Come on now, hold her, I said.
Then I grasped the child's head with my left hand and tried to get the wooden tongue depressor between her teeth. She fought, with clenched teeth, desperately! But now I also had grown furious--at a child. I tried to hold myself down but I couldn't. I know how to expose a throat for inspection. And I did my best. When finally I got the wooden spatula behind the last teeth and just the point of it into the mouth cavity, she opened up for an instant but before I could see anything she came down again and gripping the wooden blade between her molars she reduced it to splinters before I could get it out again.
Aren't you ashamed, the mother yelled at her. Aren't you ashamed to act like that in front of the doctor?
Get me a smooth-handled spoon of some sort, I told the mother. We're going through with this. The child's mouth was already bleeding. Her tongue was cut and she was screaming in wild hysterical shrieks. Perhaps I should have desisted and come back in an hour or more. No doubt it would have been better. But I have seen at least two children lying dead in bed of neglect in such cases, and feeling that I must get a diagnosis now or never I went at it again. But the worst of it was that I too had got beyond reason. I could have torn the child apart in my own fury and enjoyed it. It was a pleasure to attack her. My face was burning with it.
The damned little brat must be protected against her own idiocy, one says to one's self at such times. Others must be protected against her. It is a social necessity. And all these things are true. But a blind fury, a feeling of adult shame, bred of a longing for muscular release are the operatives. One goes on to the end.
In a final unreasoning assault I overpowered the child's neck and jaws. I forced the heavy silver spoon back of her teeth and down her throat till she gagged. And there it was--both tonsils covered with membrane. She had fought valiantly to keep me from knowing her secret. She had been hiding that sore throat for three days at least and lying to her parents in order to escape just such an outcome as this.
Now truly she was furious. She had been on the defensive before but now she attacked. Tried to get off her father's lap and fly at me while tears of defeat blinded her eyes.
Questions for reflection and discussion
Have you ever “forced” a treatment on a patient because you believed it was in their best interest or a public health hazard?
How do we balance patient autonomy with guiding patients as content experts, particularly when most patients have limited health literacy?
When treating children, at what age or point should you seek assent even if they cannot consent for themselves? Any exceptions?
REFERENCES