Convinced informed consent

(Aneurysm is a balloon like bulging in the wall of an artery and is a point of weakness where the vessel can rupture. SAH is subarachnoid hemorrhage, a sort of brain hemorrhage)

A case of ruptured Anterior communicating artery aneurysm, Mr Allahudin had returned from Saudi Arabia to get the aneurysm fixed at our hospital. He was a 48 year old man, who presented with the classical ‘thunderclap headache’ associated with vomiting followed by loss of consciousness for an hour. My interaction with Allahudin first happened when I happened to be on night duty. I had just finished informing the evening bulletin to the HOD and was doing my cursory ward rounds before heading off to the ICU when a senior who was to assist in Jassudin’s surgery called me to the intermediate ICU to dump his responsibility of convincing the patient for surgery.

This often happens. Patients and more often their relatives develop cold feet before a surgery, especially the night before, when any sincere but callous resident going for the case would list out the possible risks and complications associated with surgery and how there’s a high likelihood of a poor outcome considering the nature of the illness and surgery. Although this particular resident, a senior of mine was sincere enough to explain those risks, he thought his responsibility ended there and if they don’t consent it was upto me as the junior PG on duty to call the HOD and have another patient assigned for the OT slot on the next day. I thought and felt a little differently about the matter. I understood the apprehension associated with a thorough but insensitive consent. I’ve been on the receiving end of quite a few in my own life, including for my dad’s multiple procedures and have over time learnt the importance of empathy and explaining the risk versus benefits for any procedure so as to help patient and bystanders make a more informed decision.

I gave the family another briefing and made it clear that he needs surgery, and if he din’t consent I’d be forced to give the slot to another patient and discharge him tomorrow against medical advice. The family spoke to him. The wife, father in law, sister all tried their best. They called the head of the mosque who came in and said his prayers and told him to go ahead. But, the patient wasn’t ready. It had been about 20 minutes.

I thought I’ll try my luck for 5 minutes. I walked to the patient and re-explained to him the risks of not just the surgery, but the also the risks of not undergoing surgery, that when untreated a ruptured aneurysm was very highly likely to re-rupture, and this ticking time bomb if not diffused may cost him his life. The man, a pious muslim told me he believed this was God’s will. That if God meant for him to die, he’s willing to follow the Lord’s beckoning. This attitude did not sit well with me at all. I told him that perhaps he was reading the message all wrong. God needn’t work in mysterious miraculous ways; sometimes God just showers his grace on you in the form of timely medical attention, that to get a bed on time is not a joke. On top of that, upto 50% patients with SAH secondary to a ruptured aneurysm die before they reach a hospital. So the fact that this man had survived, and came back to India and managed to get a bed on time was no less than a miracle.

Allahudin was still not convinced. He told me that he was a man with a limited income and he couldn’t afford the surgical complications and risk being a burden to his family as a paralysed man or a vegetable and preferred death over that any day. And again I had to tell him that a similar fate may be encountered if it re-ruptures and that surgery overall offered not only the best chances of survival, but also a non dependant normal life. Finally, he relented. He signed the informed consent form. The family was happy. The lazy senior didn’t have to write another pre-op note and left pleased. And I was proud of my negotiation skills and patted myself on the back as I headed towards a busy night in the ICU.

Allahudin underwent surgery the next day, it was a relatively straight forward clipping. The procedure was uneventful and I received him still intubated in the NSICU. The immediate post op CT was looking okay. We waited for quite a while but the patient never became fully conscious. He was localising pain so we went ahead and extubated him. He was not improving. I briefed the patient relatives about his condition and reassured them. The generic “ Let’s give him some time” helped. The next morning at 3 am the duty SR noticed that he wasn’t localising pain and a repeat CT showed the left side of his brain infarcted. He was taken for emergency left decompressive hemi-craniectomy. The thing he was most apprehensive about was finally happening. And we had no idea why. Post surgery I spoke to the relatives in the morning and understandably they were very upset, and they’d started bargaining. From wanting to have him back healthy to ‘just save his life, somehow doctor’. A thorough work up left us at square one. Nothing made sense. He was heavily sedated and on the ventilator for 48 hours. A repeat scan at 48 hours showed similar evolving infarcts, but this time on the right side. We lost all hope. He seemed to be in a vegetative state. The next month was spent weaning him off the ventilator after a tracheostomy and aggressive limb and chest physiotherapy. The nursing care at our hospital was top notch and we almost never had bed sores or malnutrition in the NSICU.

Talking to the relatives, briefing them about him was a daunting task. They’d listen intently and I’d have to repeat the same morose lines each day, “ He’s still the same, it doesn’t look like he may improve, let’s keep our faith in God and hope for the best. I haven’t seen patient’s in his condition improve, but I’ve not had a vast experience, I’ve heard of such miracles, let’s see”. They’d listen to the same lines each day with disappointment. I had the patient’s sister come on one of the days in the first week and weep as she felt extremely guilty as she convinced him for surgery. Another day it was the father-in-law. And I too felt guilty for having “negotiated” with him, but knowing surgery was a must made me recover faster from these meetings. Soon I’d unconsciously pick up minor things like a glint in the eye or a flicker to pain and become hopeful and mention it in my interactions with the family; probably making myself feel less miserable seeing them walk off with a hint of satisfaction that their prayers were beginning to work.

After about a month in the ICU and another month in the ward we discharged Allahudin and sent him to a local hospital for supportive care. I’d occasionally see the family at the hospital during scheduled OPD visits hoping he had improved but he remained the same. I could see the crumbling of the family, each time they appeared more distraught and defeated than the previous time.

Finally, after a year I came to know through a senior who was their relative that he passed away. It was sad. I felt a bit of guilt for doing what at the time I thought was the right thing. But people often meet their fate along the road they take to avoid it. But as a doctor, we still have the responsibility of helping the patients and their bystanders make the best choice for him. Unfortunately, that means having to endure a few more cases like Allahudin along the way.