Best Interest - Medical ethics (II)
He was a middle aged man with thick spectacles and a hearing aid. He was jaundiced - almost florescent - and complaining of abdominal pains.
When I say 'complaining', what I mean is that he was holding his stomach, grimacing and whimpering. He never really said very much except to scream uncontrollably and attempt to hurl himself against the wall when I tried to come near to him. The poor man couldn't express himself as he had a rather severe form of Downs Syndrome.
Somehow, we managed to convince him to have an ultrasound scan of his abdomen. His carer was present and we scanned her abdomen in front of him to show him that it was harmless and painless and in fact rather a tickly sort of test. He giggled when the ultrasound probe wiggled around his belly - showing us numerous gallstones lodged all over his gallbladder and a blocked bile duct, the reason for his jaundice and the source of his pain.
Over the few days he was in hospital, he refused to eat or drink anything - too much pain. He was losing weight and becoming terribly dehydrated. He wouldn't let me near him to put in a cannula (cannula = tube into the vein through which a drip can be given) - quite understandably, because he had been cannulated in the past and remembered that it was painful. We gave him antibiotic tablets instead and tried to encourage him to drink water, juice, anything - not the best treatment regime, but the one which was most tolerable to him.
However, the only way to unblock his bile duct and relieve the pain and jaundice would be to do an ERCP.
ERCP = Endoscopic Retrograde Cholangiopancreatogram
This is a test by which one uses a telescope camera (the diameter of this scope is about 1 cm) to look down the gullet and into the stomach and first part of the small intestine - Endoscope.
By doing this you can see the opening of the bile duct in the small intestine. A guidewire is inserted into the bile duct opening and dye is squirted into the opening in such a way that it travels backwards into the duct (Retrograde).
X-ray pictures are taken from outside the body will show the anatomy of that person's bile duct and gallbladder as well as the pancreatic tree, as the dye coats the insides of all these structures, making them visible to the Xray camera (Cholangiopancreatogram). This shows up the exact position of the gallstones as well as the part of the bile duct which has become blocked.
Once the camera is in place, guidewires with scissors and baskets at the end of them can be used to cut the opening of the bile duct, thus allowing the gallstones to escape and be caught in the baskets. A stent is inserted then into the duct (with the help of the X-rays to check the position of the stent within the duct) to keep the duct patent and prevent further obstruction.
Sounds longwinded? It is a longwinded test and rather invasive, as you can imagine. You probably would find it difficult to keep still whilst someone shoves a bloody great big snake-like object down your gullet, even with sedation.
So how would one go about doing this test on somebody who has Downs syndrome, who can't understand what is going on? (Mind you, sometimes even people of normal intelligence can't seem to grasp what is going on.) He won't understand what you are doing or why you are doing it, so one can't get him to consent to going ahead with the test, and one certainly can't get him to co-operate.
I couldn't even get him to agree to have a cannula put in so that he could have a drip. I did try with the help of his carer, to say - you need this (pointing at a needle) to make this (pointing at his stomach) get better (pointing at a picture of a happy person). But he just shook and shook his head, and I knew all he was thinking was 'needle = PAIN!!!'.
In cases like these, doctors tend to work in the patient's best interest. The 'Best Interest' rule comes into effect when an adult patient is unable to make an informed decision about his or her treatment. We judge the ability to make an 'informed decision' based on whether a person is able to understand and retain information about his/her condition and consequences of treatment/non-treatment.
Not all Downs Syndrome or mentally disabled patients will have treatment under the 'Best Interest' rule - I have met a few Downs Syndrome patients who were able to refuse treatment on the grounds that they understood what would happen if they did not receive treatment.
Anyway, the day came when my patient would be having his ERCP. The plan was simple. I would sedate him with some tablets, then cannulate him and give him more sedation through the cannula, so that he would be asleep during the ERCP.
Easier said than done.
He took the tablets and became drowsy, but not so drowsy that he couldn't put up a fight when I came to cannulate him. It took 5 people to hold him down, and he still managed to kick two of my helpers in the stomach and jab a nurse in the eye and scream like there was no tomorrow.
I managed to get the cannula in and sedate the poor fellow so that he was snoring away in under 10 seconds...but I really felt like I'd sold my soul. I felt like I had assaulted this poor fellow - 5 people grabbing him and forcing him down whilst a sixth person shoved a needle in his arm. The look of terror on the poor man's face! It was like a horror film.
He got his ERCP and was soon napping quietly in his bed again...and by the next day he was feeling much better and was tucking into his breakfast cereal and fruit juice, ready to go back home again.
Yes, I know he needed his ERCP, and I know he feels better know. And maybe, as a doctor, I might have done the right thing with regards to treatment.
But have I done the right thing with regards to the patient? All I have done is instill in him a fear of hospitals and hospital staff. I look at the bruises on his arms and legs and I know that I was the one who caused them. He will never trust me now, nor any other medical staff. And all he knows about hospital is that it is a place where people hurt you. What will this do for him in the future, if he needs to come into hospital again? Will he mask his pain from his carers in the future in the hope of avoiding hospitals?
If I had done this same thing to a child or an elderly person with dementia? When am I allowed to treat a person against their will? How far am I allowed to go before it's classed as assault? What are the psychological repercussions of my actions?
I feel terrible.
When I say 'complaining', what I mean is that he was holding his stomach, grimacing and whimpering. He never really said very much except to scream uncontrollably and attempt to hurl himself against the wall when I tried to come near to him. The poor man couldn't express himself as he had a rather severe form of Downs Syndrome.
Somehow, we managed to convince him to have an ultrasound scan of his abdomen. His carer was present and we scanned her abdomen in front of him to show him that it was harmless and painless and in fact rather a tickly sort of test. He giggled when the ultrasound probe wiggled around his belly - showing us numerous gallstones lodged all over his gallbladder and a blocked bile duct, the reason for his jaundice and the source of his pain.
Over the few days he was in hospital, he refused to eat or drink anything - too much pain. He was losing weight and becoming terribly dehydrated. He wouldn't let me near him to put in a cannula (cannula = tube into the vein through which a drip can be given) - quite understandably, because he had been cannulated in the past and remembered that it was painful. We gave him antibiotic tablets instead and tried to encourage him to drink water, juice, anything - not the best treatment regime, but the one which was most tolerable to him.
However, the only way to unblock his bile duct and relieve the pain and jaundice would be to do an ERCP.
ERCP = Endoscopic Retrograde Cholangiopancreatogram
This is a test by which one uses a telescope camera (the diameter of this scope is about 1 cm) to look down the gullet and into the stomach and first part of the small intestine - Endoscope.
By doing this you can see the opening of the bile duct in the small intestine. A guidewire is inserted into the bile duct opening and dye is squirted into the opening in such a way that it travels backwards into the duct (Retrograde).
X-ray pictures are taken from outside the body will show the anatomy of that person's bile duct and gallbladder as well as the pancreatic tree, as the dye coats the insides of all these structures, making them visible to the Xray camera (Cholangiopancreatogram). This shows up the exact position of the gallstones as well as the part of the bile duct which has become blocked.
Once the camera is in place, guidewires with scissors and baskets at the end of them can be used to cut the opening of the bile duct, thus allowing the gallstones to escape and be caught in the baskets. A stent is inserted then into the duct (with the help of the X-rays to check the position of the stent within the duct) to keep the duct patent and prevent further obstruction.
Sounds longwinded? It is a longwinded test and rather invasive, as you can imagine. You probably would find it difficult to keep still whilst someone shoves a bloody great big snake-like object down your gullet, even with sedation.
So how would one go about doing this test on somebody who has Downs syndrome, who can't understand what is going on? (Mind you, sometimes even people of normal intelligence can't seem to grasp what is going on.) He won't understand what you are doing or why you are doing it, so one can't get him to consent to going ahead with the test, and one certainly can't get him to co-operate.
I couldn't even get him to agree to have a cannula put in so that he could have a drip. I did try with the help of his carer, to say - you need this (pointing at a needle) to make this (pointing at his stomach) get better (pointing at a picture of a happy person). But he just shook and shook his head, and I knew all he was thinking was 'needle = PAIN!!!'.
In cases like these, doctors tend to work in the patient's best interest. The 'Best Interest' rule comes into effect when an adult patient is unable to make an informed decision about his or her treatment. We judge the ability to make an 'informed decision' based on whether a person is able to understand and retain information about his/her condition and consequences of treatment/non-treatment.
Not all Downs Syndrome or mentally disabled patients will have treatment under the 'Best Interest' rule - I have met a few Downs Syndrome patients who were able to refuse treatment on the grounds that they understood what would happen if they did not receive treatment.
Anyway, the day came when my patient would be having his ERCP. The plan was simple. I would sedate him with some tablets, then cannulate him and give him more sedation through the cannula, so that he would be asleep during the ERCP.
Easier said than done.
He took the tablets and became drowsy, but not so drowsy that he couldn't put up a fight when I came to cannulate him. It took 5 people to hold him down, and he still managed to kick two of my helpers in the stomach and jab a nurse in the eye and scream like there was no tomorrow.
I managed to get the cannula in and sedate the poor fellow so that he was snoring away in under 10 seconds...but I really felt like I'd sold my soul. I felt like I had assaulted this poor fellow - 5 people grabbing him and forcing him down whilst a sixth person shoved a needle in his arm. The look of terror on the poor man's face! It was like a horror film.
He got his ERCP and was soon napping quietly in his bed again...and by the next day he was feeling much better and was tucking into his breakfast cereal and fruit juice, ready to go back home again.
Yes, I know he needed his ERCP, and I know he feels better know. And maybe, as a doctor, I might have done the right thing with regards to treatment.
But have I done the right thing with regards to the patient? All I have done is instill in him a fear of hospitals and hospital staff. I look at the bruises on his arms and legs and I know that I was the one who caused them. He will never trust me now, nor any other medical staff. And all he knows about hospital is that it is a place where people hurt you. What will this do for him in the future, if he needs to come into hospital again? Will he mask his pain from his carers in the future in the hope of avoiding hospitals?
If I had done this same thing to a child or an elderly person with dementia? When am I allowed to treat a person against their will? How far am I allowed to go before it's classed as assault? What are the psychological repercussions of my actions?
I feel terrible.
Labels: Clinical observations
posted by tscd at 6:52 pm
2 Comments:
I think you did the right thing!
Thanks for the revalidation. :) He still hates me though.
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