Painful procedures without informed consent : a growing dilemma in healthcare for the elderly

My niece spent a week shadowing me for work experience recently. Most sessions were with helpful colleagues, but I brought her into one of my endoscopy sessions. I looked forward to showing her how interesting it was. In the car, on the way home at the end of the week, I asked her if she was still keen on medicine,

                “Definitely. I loved the surgery..but I couldn’t do what you do, I couldn’t hurt people.”

That got me thinking! The realisation that being a doctor involves inflicting pain is quite shocking and unpleasant for medical students. For me it came in the fifth year, when I started doing phlebotomy rounds every morning. Particular patients, listed for daily venesection, would wince as they caught sight of me entering their bay. After the third failed stab I had to pause and ask myself if it was reasonable to continue. But I did, only giving up after five attempts. The fact that each episode of pain represented a tiny step up the learning curve made me feel even more guilty. Now, as a consultant, I am not removed from the dilemma of ‘therapeutic pain’.

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Here is a scenario (the details have been changed from reality, as normal). A previously rather impressive, but moderately demented 91 year old lady is admitted with pneumonia. She had been living at home, assisted by carers who visit twice a day. The infection causes delirium, and despite some improvement with antibiotics it becomes clear that her strength and overall level of function have taken a significant hit. On the ward rounds and board rounds doctors, nurses, physiotherapists and occupational therapists begin to discuss the intensity of the care package that she will require. It is felt that the most realistic option will be a residential home.

She enters a period of stability and the doctors spend a little less time with her each day – there is very little to do, medically speaking.

One day she passes some altered, darkened blood on the toilet. Her blood count falls. It is supposed that she has bled from a gastric ulcer, and an endoscopy is arranged. Her family are informed, and a Consent Form 4 is completed. This is the type of consent form that doctors write on when a patient does not have the mental ‘capacity’ to make up their own mind if they actually want the procedure. In this case the doctors agree that the endoscopy, although unpleasant, is brief and straightforward enough to be justified, ‘in her best interests.’ She has the procedure, under the minimum dose of sedation…and no ulcer is found. The endoscopist writes ‘procedure poorly tolerated’ on the report. Next day she has no memory of having the camera passed through her mouth into her stomach.

She remains stable.  Two days later she bleeds again, and is transfused another two units of blood. The team arrange a CT scan to look for a bowel tumour –it doesn’t show one, but the radiologist suggests that the caecum (90cm into the bowel) is examined directly. They choose to wait again, reluctant to submit her to a colonoscopy.

She bleeds again. Another two units. Each episode of blood loss weakens her a little. The medical decision is, on the face of it, easy…she needs a colonoscopy. But this test is difficult for elderly patients. It requires that the bowel is cleaned thoroughly with strong laxatives, before the endoscope is negotiated through entire length of the large bowel. The elderly tend to have angulated, inflexible colons, factors that make the procedure more uncomfortable. It is no small thing to arrange such a test for a 91 year old.

Her family are informed of events again. Colonoscopy is explained in some detail. ‘What will happen if she doesn’t have it?’ her son asks. She will bleed again, and require another transfusion. It could go on and on. She will not be able to leave the hospital. It is likely that she her health will deteriorate and she will succumb to a complication. The fact that there is limit to the amount of blood that can be given to patient is not discussed.  ‘Can you put her to sleep for it this time?’ The answer is no. A general anaesthetic is out of the question in such a frail lady. The family agree that she should have the colonoscopy. After all, it is usually safe, and she managed the other one pretty well. It is arranged.

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It was I who did the first endoscopy. It started well but after thirty seconds she became distressed and tried to pull the camera out. I asked a nurse to hold her hand while I finished the test. She fought and dug her nails into the nurses palm. I was relieved to hear that she couldn’t remember a thing afterwards.

It was my list that she was booked onto for her colonoscopy. I didn’t recognise the name when I arrived in the department and read my patient list, but when her turn came towards the end of the afternoon I went out to consent her, I sighed. She appeared frailer, and could barely engage me in conversation. Another Consent Form 4 had been filled out, and I duly countersigned it, thereby adding my weight to the decision that had been taken on her behalf.

I gave the sedation (as much as I could safely give) and started the procedure. Within minutes, as the camera began to stretch and twist the part of the bowel affected by diverticular disease (almost universal in the elderly), she began to object. I carried on, sure that within a couple of minutes the worst would be over for over. But it wasn’t, and her cries became louder. I changed her position, I used every endoscopic trick, and a centimetre at a time progressed along the bowel. Facile words of encouragement from myself or the endoscopy nurses, such as ‘You’re doing very well,’ ‘Concentrate on your breathing…not too much longer now,’ and ‘You’re completely safe, it’s worth it to find out what’s wrong…’ did no good. She wasn’t listening, and we had already determined that she was not able to process the information that was given to her. That’s not to say she couldn’t talk. As the procedure continued she began to say, then shout, with great clarity,

                “Stop it!”

After the fourth or fifth ‘Stop it’ I stopped. Another five to ten minutes and I would have reached the caecum. I was already seeing signs of bleeding, trickling down the walls of the bowel from a lesion further in. I could get there, I had no doubt about it. I could make a diagnosis and perhaps even stop the leakage of blood. But it would mean at least five minute of pain, inflicted against her clearly expressed wishes.

What should I do? I asked the two nurses. They shrugged, uncomfortable with their patient’s pain but experienced enough to know how important it was to find out what was causing the bleeding.

This was the question I had to ask myself. Did I think that it was better for the patient to suffer for as long as it took me to find the problem and seal the blood vessel, to be saved further transfusions, or achieve instant relief by removal of the camera, thus forfeiting the chance of a cure. It was up to me. Present pain (audible, visible, horrible to witness) versus future health (theoretically).

I carried on. I usually do. It had been discussed with the family. Her doctors had considered the pros and cons of the procedure in some depth. I explained this to the more doubtful and distressed of the two nurses, and together we got the frail old lady through it.

I found nothing. We never made a diagnosis.

I went to see her the next day, and introduced myself. She remembered nothing. Is amnesia the same as analgesia? I don’t think so. She suffered in that endoscopy room, at my hands.

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I explained some of these thoughts to my niece at a later date, but I didn’t make much of an impression.  The pain was very real for her too, and her opinion, as an ‘innocent’, unbiased by the utilitarian, task-oriented approach that doctors sometimes take, seemed very valid. Whatever the justification, we – the team, her relatives, me – judged that she would have wanted to trade pain for the chance of cure. The more I reflect on this equation, the more I doubt it’s solution.  As our patients become older and less able to give informed consent we are going to have to address this issue in greater detail. Every disease has a treatment. We are used to analysing the ratio of discomfort to benefit for our patients, but the more I treat such ‘very’ elderly patients, the greater the weight I give to the present rather than future state of health with which we choose to justify pain.   

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