Decisions. Dilemmas. Directives.
-Written by Dr. Geeta Sundar
T/W: End-of-life care, loss of a loved one, death, descriptions of trauma and post-op recovery
Despair is a fragile entity. It’s a pathetic feeling. Hopeless to the point of betting on a situation that is bound to fail. There is no pride, humility or race in front of this emotion. It’s a point blank desperate-non-logical scenario, where you just fall, befall the grief in the most self deprecating way.
A 23 year old male brought to us, referred from a different hospital, with severe traumatic brain injury, status post surgical intervention, with M1 clinically with bilateral fixed, dilated pupils and brainstem reflexes absent.
I know the prognosis. I even know what the scan will read. Large patches of infarct, diffuse edema, brainstem lost to the confines of the skull, with bleeds, and loss for white-grey differentiation. A point of no return. And it reads just that. A disappearing brain, a vanishing soul, in the final stages of its existence.
The patient’s family is an uneasy disturbance I need to face. The older brother is maimed – he moves by crawling on two lower limbs that look like chicken legs, dragging his weight around, whereas the uncle has a disabled lower limb that he needs to hold before he takes any step – polio has done it’s damage to them both; the father is thin, weary and somehow knows his fate but is in complete denial. A counseling session on the rocks, I know this is all I can muster up empathetically – it’s 2 am in the night and I’ve had a hectic, jam packed day, but this takes priority. I feel for them. I feel for the patient. But I can’t feel too much. The emotion is bitter and I won’t even think about digesting it.
I explain in over five different versions of words, sentences all mashed together, languages included, deliberately pausing, not being too clinical, hoping they will understand the prognosis, the imminent inevitable end that is fast approaching, but they don’t understand the gravity of the situation. And they crowd around me, more than 10 of them, all intense faces, staring, watching, judging that I could even announce their patient’s poor prognosis. How dare I, being a woman, think I could even declare such a thing? I shrink away but I don’t back down. I don’t cower, but I retreat. (Lesson to self – learn self defense and boxing).
They. Just. Don’t. Get. It. They don’t understand the implications.
And well, they won’t. Denial is a wonderful instrument. It can hide away the reality in shadows and close the blinds on the truth.
Their decision is final. Admission. Do all you can. Save as much as possible. Even if it’s crumbs, they want it. Even if it’s peril at the hands of a devil, they want it.
Ok, I say, and admit the patient to the ICU. The story sadly, doesn’t end there. In 10 hours time, they have heard more versions of the sad truth, the reality, from senior male consultants, they have seen that almost lifeless body in the ICU and the tough bite of the nipping cold bottom line strikes them. There are tears. There is shouting. There is anger. There is an enormous guilt and they backlash at anything and everything in front of them. Including me.
They wish to discharge the patient and take him home. Home to the confines of a secluded place in the warmth of one’s kith and kin, was what I had advised right at the beginning. But they had not paid heed. “Can you pull the tube out”, “What if he collapses on the way”, and a thousand more doubts fiddle their head.
Decisions, they made in an emotional state of affairs, now implicating a far more different scenario. Their decision – I remind them, despite my counseling, was to do the maximum we could. Their decision again, now, if they wish to leave, but a signed consent obviating negligence, and their decision to give up.
Decisions are so easy to speak out, so easy to voice over, but so hard to maintain and pertain to promises. It’s not easy making decisions. It’s far worse when making decisions on continuing care versus giving up with a little segment of compassion intact. Decisions are often accompanied by dilemmas. Recently, my professor wanted to strike up a debate to identify the need for fusion techniques in the spine when apparently many studies have shown that decompressive techniques are enough. Sure enough, it was a long drawn debate over days, and involving more than just the intended masses of residents and consultants. When a surgeon stands in the place of acting as the man/woman who will take a call on a patient’s need for surgery, they are literally choosing to make a decision for that patient – and whatever may the fad be, the norm be, and even books caution this as ‘the operative intervention if based on clinical decision and case by case scenario’, they are to stand by that decision. And if one were to dissect a surgeon’s life, they would understand the depth of how much perioperative care and decision making is of the utmost importance, and how often a decision requires a lot of backing of investment, time, energy. One cannot simply make a decision and not deal with the repercussions. For a surgeon especially, bad outcomes are common as breathing and even if not anticipated at the time of making a decision, they become a part of life.
But when making decisions for a family member, standing by the decision is not easy. 82 year old female, multiple comorbids, right malignant MCA infarct with hemorrhagic transformation – borderline operative, cisterns were starting to efface and she would eventually cone. The son was very adamant on surgical intervention – I suppose to him it looked like surgery would be the answer to all the problems his mother had. Despite subtle maneuvers to dissuade him and explain about tracheostomy, ICU stay, decreased sensorium, arrhythmias, he wouldn’t budge. Surgery was the one answer only. Do all you can. Save her. Fix her. Post surgery, well, she didn’t improve. She worsened upto a point where the bill was larger than the payable capacity and they literally didn’t know what to do with the patient, and then chose the only (chickened) way out – take her home, and give her the ‘non-intrusive’ way out in peace. Tch. Tch. Tch.
What then of the words we spoke, and counseled? What then of his decision making? She would probably have worsened, but a probably is still a probably rather than a definitive, isn’t it?
Combining all the enormous hours I’ve stayed up at the triage sorting cases and patients, I’ve seen a few handful of patients who are brought in such a condition where palliation is recommended and the only way out. And it’s even more rare to see the family accompanying such patients who come prepared to bear and understand the palliative side of treatment. There is a sense of calm in them, their eyes give away their settlement, they endorse the directives and somehow their acceptance makes it so much easier to broach about the hospice. Directives are very difficult to honor. Choosing to do something, or in this instance not do something for a near and dear one, can create a huge amount of conflict in a person. But with that decision, I think there comes a calm with the storm, where the decision is made, the next step is known, and oftentimes that decision is a huge relief for a person battling pros and cons.
In essence, life is a dilemma. Life is a decision and we are faced with directives on each and every level – some we can muster up and live by, others we crash and burn in a partial flow and there are others that completely knock us off our feet. Maybe that’s what makes life so miserably enchanting…so harshly enthusiastic, a constant change with persistent variabilities.
