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One morning in April, my brother called me frantically from home. Our grandmother, Ammamma, had had a stroke, he said, and the paramedics were at our house. She was throwing up and could not move the right side of her body. I was surprised by my reaction to this news. After a few initial moments of heart-thudding prayers, I calmly got ready and proceeded to fill a bag with the things that I felt would be necessary: Advil in case someone had a headache, Meclizine, cell phone charger, tissue packs, and my prayer beads.
A stroke occurs when blood supply to any part of the brain is blocked, leading to a lack of oxygen to brain cells. The brain cells can then literally die or be damaged irretrievably. The occlusion can be caused by a clot of blood, by gradual buildup of plaque, or by other fatty deposits. In other cases, a blood vessel in the brain can burst, leading to a hemorrhagic stroke. The brain is a highly specialized structure and the brainstem is perhaps its most primitive part, controlling a number of functions vital for life, such as respiration, heart rate, and blood pressure. While a stroke higher up in the brain can mean loss of higher order functions (read: specialized functions such as personality and memory, without which we can still exist), a brain stem stroke leads to deficits in the basic functions necessary for life.
According to the National Stroke Association, 2 million brain cells die every minute during stroke, increasing the risk of permanent brain damage, disability, or death. Recognizing symptoms and acting fast to get medical attention is therefore very important. An MRI can provide information about the type of stroke and also help localize it. Treatment obviously involves restoring blood flow or controlling hemorrhage. Depending on the type of stroke, if diagnosed within three hours, t-PA (tissue plasminogen activator, which dissolves clots) can be administered along with some other drugs to minimize the damage.
The frustrations that my family faced those first few days following Ammamma’s stroke were numerous. Despite her declining mental status, a miscommunication caused the pulmonologist at the ER to declare that she was ineligible for an MRI due to her cataracts. Waiting 48 hours for a CT scan seemed torturous; we were wrought with worry and guilt. As a neuroscience major, I could not handle the wait time. I wanted to know exactly what part of the brain had been affected, what deficits to expect, and whether or not my grandmother was going to make it. Also, since Ammamma had her stroke at some point in the night, the exact time of onset was ambiguous, ruling out t-PA as a possible medication. The CT scan led the neurologist to believe that she had had a brainstem stroke. My heart sank. An MRI later showed that it was a basilar artery stroke near the pons, the respiratory center of the brain. This being her second stroke, and that too at the level of the brainstem, I prepared myself to lose my grandmother.
My aunts, uncles, cousins, nieces, and nephews flew down to Los Angeles that week. We spent a few days too shocked to do anything beyond crying and clinging to each other. Ammamma lay motionless, her face distorted by tubes that were breathing for her. As a family, we hovered in the Critical Care Unit (CCU), desperate for a doctor to tell us how she was doing. When we did manage to get a hold of the neurologist, my uncles asked him repeatedly whether and when Ammamma would be able to walk again. Less than five days later, the doctors wanted us to think about placing tracheostomy and gastronomy tubes for life support.
Day after day, we went home and sat in a circle in the living room, unable to speak, much less have an opinion about placing Ammamma on life support. Those of us with some understanding about brainstem strokes found ourselves drawing pictures of the brain and explaining the function of the brainstem to the rest of the family. There were doctors, residents and medical students amongst us, all trying to explain why we were seeing the apparent deficits and why there was a possibility that Ammamma’s higher cognitive functions could still be working despite her delicate condition. Faced with this, we wondered whether it was right to pull her off life support when she could possibly hear and understand what was being done. At the same time, we knew her. And we knew from the many conversations that we had had over the years that she would be very troubled if she needed constant care from us. This would have a very negative psychological impact on a woman who was already struggling with her inability to communicate.
Communication between family and doctors, especially when the family is making a decision about removing a loved one off life support, is invaluable. Unable to come to a decision and not wanting to make that decision in the first place, every family member clung to the words of the doctors. Even if Ammamma started breathing on her own, she would never be able to chew food, talk, or walk around again. We prayed for a medical miracle.
I have often wondered why it is that many Indian immigrant families do not talk about advanced directives. As a child, I remember being admonished for bringing up any word even remotely related to death. Ammamma herself used to warn us about thathasthu devathas (so-be-it angels) who apparently floated around invisibly, eavesdropping on our conversations. We couldn’t utter anything untoward just in case a thathasthu devatha happened to be passing by and blessed us with a “so be it.” I am almost embarrassed as I remember this—how could I have ever taken it seriously? Of course (I hope), nobody wishes to be put in difficult situations, but isn’t it practical to think about whether or not you would want to be put on life support, God forbid you should ever be in that position? Talking to those near and dear about your opinion on end-of-life care would save them a considerable amount of emotional guilt and struggle. Every person has a right to choose the type of care provided to them. In a situation in which an individual might be incapable of communication, having a living will or advanced directives would make the decision easier for already distraught family members.
The advanced directives form at the National Institutes of Health, where I am currently a research fellow, advises patients to think about core values and to use those values to decide which treatments they would or would not want if they lost the ability to make their own decisions. The medical conditions relevant to end-of-life decision making are usually the following: a terminal condition from which there is no reasonable chance of recovery, and when the use of life-sustaining treatments would only prolong the dying process; a complete coma; loss of capacity for communication; loss of capacity for self care; and intractable pain. The treatment options in such cases are: emergency resuscitation (CPR), a Do Not Resuscitate (DNR) order, ventilatory support, artificial nutrition and hydration, and comfort measures such as pain killers. The advanced directives form asks for a primary substitute decision maker, wishes about medical research participation, and wishes for health care. Would you want all effective treatments to keep you alive, no matter what your condition, or do you not want life-sustaining treatment in the event of any of the above outlined medical conditions?
My Ammamma has seven children and 15 grandchildren. Her face would light up when she saw any of us; she loved us unconditionally. She constantly wanted to feed us elaborate meals, reveled in our triumphs at school and work, was always thinking about our futures and our weddings. In many ways, she was the traditional Indian grandmother, but over the years that my grandparents lived with us in Los Angeles, I have often been surprised by her spirit, her love of independence, and the simplicity of her nature. The best part about coming home from college was the sound of her bangles tinkling as she walked down the stairs, beaming and exclaiming that I was home.
Those first few weeks after Ammamma’s stroke, when our house was full of family, I found myself turning my head every time I heard bangles, expecting to see Ammamma, only to find one of my aunts.
Ammamma is still alive today. After weeks of discussions, my grandfather ultimately made the decision not to take her off life support. After a month at a sub-acute facility, she was moved to a nursing home. Even now, as we watch her struggle, we wonder whether we made the right decision. If Ammamma had been in a position to communicate, would she have chosen to confine herself to a nursing home bed and machines, far away from the family that she loved? At what point do you draw a line between quality of life and life itself?
I am not blind to the difficulties of coming to a decision about one’s own end-of-life care. It has been six months since Ammamma’s stroke, and I cannot honestly say that I know exactly what I would want done for me. But I am thinking about where I may want the line drawn. Are you?
Lakshmi R. Gokanapudy graduated from UCLA with a degree in Neuroscience and is currently a research fellow at the National Institutes of Health, Bethesda, MD.