I had no idea how reading ‘Being Mortal- Medicine and what matters in the end’ would help me. The book was suggested to me by blogger, author GS. Subbu, after dad passed away. A line from the book mentioned in GS. Subbu’s review made me want to pick it up – “It is not death that the very old tell me they fear. It is what happens short of death- losing their hearing, their memory, their best friends, their way of life.” During the last few months of lockdown when I asked dad not to step out, he said, he wasn’t scared of death. He was scared of how his body would slowly start breaking down before death came. He was worried he wouldn’t be able to hear us when we called or he wouldn’t be able to walk or he would be bedridden. It made me sad to hear he wanted to die. After he went away I wondered if I had responded rightly to his fear- if he knew I understood.
Ironically, I had read GS.Subbu’s review in May 2020 and had decided to buy the book then but one thing and another, it had slipped out of my mind. Had I picked the book then, I may have done a few things differently. However reading the book now has helped me reconcile the mixed emotions of guilt, doubt, sorrow that I have been carrying in my heart since 26th November, when dad breathed his last.
I began reading the book on 16th December after I had completed the last rituals. I finished the book only yesterday, on the 4th of Jan. It’s a book that requires time to digest. I read a few pages everyday- allowing it to speak to me- thinking about it, discussing it with my family and sleeping on it. It felt like therapy. Every section I read helped me understand dad, the situation, and myself, better. It helped me understand that the problems we had gone through with regards to not being able to understand the doctors, our disappointments about the lack of personal touch at the assisted living facility, the manner in which hospitals work, are problems faced world over. It gave me relief knowing that there was nothing we could have done differently and most importantly it helped me understand that some people like dad like being in control of their lives – that’s what matters most to them and its important that they are allowed it even when they age. What many of us describe a person as ‘being difficult,’ is only independence and confidence, that we once looked upon with great pride and respect.
In his book, Dr. Atul Gawande says while the end has to come, endings can determine how families feel after it. Because of the modern treatments – ICUs, ventilators, provided by hospitals, there’s never really a chance to say a proper ‘Goodbye,’ and this leaves loved ones depressed for a long time. I agree. The author speaks about a person’s ‘last words.’ Dad’s last words in an email to us on the 23rd were, “Stop paying the doctors.” It meant he had decided he did not want anymore of it. Verbally, he had asked for the accounts officer. He wanted to settle the bills. He believed in doing things in a planned manner- he even made his will, five years ago and handed a copy of it to me and my sister. I had asked him then why he was doing it. And he said, “Because it needs to be done. I might as well do it when I am mentally sound.” There was no ‘I love you,’ or any of that at the end. There was no need for it. Dad had shown us he loved us throughout his life in everything he did.
Dr. Atul Gawande has managed to cover every single aspect of the problems that caregivers and terminally ill patients or the ageing face. It’s amazing how he manages to provide answers through stories of friends, neighbors, acquaintances. The book is not a ‘story’ book in the ordinary sense and yet it tells a story- the author’s story of how his grandfather died and later how his father died. Its a book that every single person should read simply because it covers the one aspect that binds all of us – the reality of our lives and those we love- our mortality.
After dad left I felt sorry that I had let him move in to an assisted living facility a year ago. In the words of the author, ” Whenever the elderly have had the financial means, they have chosen what social scientists have called ‘intimacy at a distance.’ It helped me remember that we had spoken every single day after he moved- about the lockdown, the news, the food I was cooking, the washing machine going bust (he had been worried that I was doing the washing), the books I was reading, my painting and he had seemed happy, up until July 2020 when his body started growing feeble and he was certain there was something wrong. It frustrated him that the doctors couldn’t identify it. He kept losing weight. Meeting a geriatrician wouldn’t have extended his life but would have made the ending easier. But I hadn’t known of geriatricians until I read the book. Call me ignorant if you may. A geriatrician is a doctor who helps the aged. There are not many of them around and hospitals don’t guide you to them because they help the aged in managing ageing without suggesting wasteful procedures and unnecessary treatments.
The author talks about how it is not just safety that the aged need but a purpose to carry on, he explains the difference between assisted living, nursing homes and hospice care (unfortunately it isn’t widely available though it is what we truly need). He gives a scientific explanation to the way things works by linking the economy to medical facilities. He explains how people die in their homes in underdeveloped countries because they do not have the resources to go to hospitals and that it is the same in extremely rich countries but in the latter it is a matter of choice- people choose to die in their homes with their family around. But in countries that are developing like India, most people end up dying in a hospital. Further he explains how clinicians are scared of doing too little but do not realize how doing too much can be devastating. The author, a surgeon himself, states that doctors are of 3 types – the ‘paternalistic’ ones who are authoritative, the ‘informative’ ones who inform you all the pros and the cons and leave it to you to decide (which are the majority) and the ‘interpretive’ ones who help patients determine what they want and help patients and caregivers understand that time is finite and how to improve one’s quality of life within the limited time available. Sadly, very few doctors fall into this category but this is who patients need.
When talking about dealing with his own father’s illness Dr. Atul Gawande says, ” Between the three of us (him, his father and his mother- all of whom were doctors) we had 120 years of experience in medicine, but it seemed a mystery. It turned out to be an education.” Knowing this helped me accept the fact that being a doctor or knowing one wouldn’t have made it any different for us.
In the book, the author says, “The neurosurgeon at my hospital didn’t much like my father’s questions. He was fine answering the first couple. But after that he grew exasperated. When the doctor finished, my father didn’t ask any more questions. But he’d also decided that this man wasn’t going to be his surgeon.” Reading this was important for me to understand dad wasn’t being difficult as I and others who knew him probably thought. It’s helped me clear him of a label that wasn’t his to begin with. He was just clear about what he wanted, right from the beginning; he was capable of taking his own decisions until the end. “He found it difficult to put his trust in any operation he did not understand,” Atul Gawande says about his father. Dad wasn’t a doctor. He was an engineer but he was brilliant and this resonates so well with me. I remember seeing the doctor’s frustration while answering dad’s questions and I remember wishing he didn’t ask so many. Now I know better.
Dr. Atul talks about having the ‘hard conversation,’ with loved ones. I didn’t know I was having it with dad when he said, ” I do not want to be paralyzed or to be on a ventilator.”
When I met the doctor after dad passed away to ask what had gone wrong after she had said the surgery was successful and we had spoken to dad- he had seemed fine for 2 days and then he seemed drowsy, she said, ” He refused to take his medication, his fluids. He stopped responding.” I couldn’t understand why or what happened after two days when they had said he would be discharged on the 25th. Dad had told me that he found it difficult to stand after sitting- that his ribs hurt. I had told him it would heal and all he had to do was to rest for two or three months. I was being overly optimistic. The author’s words of what his father had said the day before he passed away, “I’m thinking how not to prolong the process of dying. This- this food prolongs the process,” was the answer to my own question, ‘why had dad stopped responding.’ It’s creepy how close the book was to our own experience.
“He was at peace in sleep, not in wakefulness. And what he wanted for the final lines of his story, now that nature was pressing his limits, was peacefulness,” is what the author says of his father. I felt the same when I saw dad during the last two days- he kept sliding between consciousness and sleep- he looked peaceful in his sleep.
I recommend this book to all those who are caring for their aging parents and wonder why their parents make it difficult for them or do not value all that they do for them. It will help you manage your responses better thanks to a better understanding of their situation. Your responses will help them and you. This book is also for those who have lost a loved one to ageing or a terminal illness and are still troubled by questions. I’m sure it will answer at-least some of the questions you carry in your heart.
I believe this book should also be read by Doctors. I wish it was part of their curriculum like taking the Hippocratic Oath so that they’d be more understanding and humane and understand that it is the quality of life that one needs to maintain until the end not prolong life.
While I grieve my dad’s absence I am grateful to God that he died in a way he considered to be dignified.
I give the book a five star rating. If there were more stars I would give it that too. This book has helped me find my way as I walked blindly through a dark tunnel and it showed me the light. I recommended this book to my younger sister who is associated with a home for the aged in the US because I felt it would help her do what she loved doing, better and also because I know she has questions too because as the author says, “In families does everyone see such situations the same. It seems unlikely.”
Last but not the least, I’d like to share some lines from the book. There are many, many more that are precious.
“Culture has tremendous inertia. That’s why it’s culture. It works because it lasts. Culture strangles innovation in the crib.” – about changing the way senior homes work.
“How we seek to spend our time may depend on how much time we perceive ourselves to have. As your horizons contract- when you see the future ahead of you as finite and uncertain- your focus shifts to the here and now, to everyday pleasures and the people closest to you.” I know this to be true for dad. Other than my sister, me, our husbands and my children, he spoke to nobody else in the last six months. He disconnected himself. In the last two years he refused to make any new contacts. I tried taking him downstairs when he lived with me and introduced him to a few men of his age. He spoke to them that one time but refused to go down again when they were around. I did not understand then why he wasn’t being social. I do now.
“Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength.”
“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of annihilation. you don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”
If this review makes you want to read the book and if reading it helps you in any way, I will be happy.
Finally, I am attaching the review that made me want to pick up the book here for your reading.http://subbusg.blogspot.com/2015/06/being-mortal-by-dr-atul-gawande.html
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