Books that come to you for a purpose

You know there are days when I pause and reflect on the enormity of all that’s happened in a matter of weeks. And especially on those days, I cannot tell you how often I feel thankful for things small and big. People who showed unconditional support, things that fell in place and wisdom that showed up just when I needed it.  Atul Gawande’s “Being Mortal” also is one the books I’m grateful for. It couldn’t have come to me at a better time.

I’d picked this book ten days before the “Final Dance” (which is what I’m calling my cancer). When I look back now, the way it came about seems almost planned. I was travelling back from Bangalore to Mumbai and was already between two books. I went to buy a bottle of water and happened to take a stroll in the nearby book stall. For the last one year, I’d been reading praises about Being Mortal and I always felt I didn’t want to read this book as it would leave me depressed. I decided to pick this book for a friend, who I knew enjoys reading about medical stuff. When I finally sat in the aircraft, I was overcome with this enormous greed to start reading and there was no turning back from there.

Atul Gawande is an American surgeon, writer and public health researcher.  His books beautifully put together his observations on the medical practice and the interface between us and the healthcare system. While I was reading it, I was amazed by the voice that Gawande gave to the often neglected part of the healthcare system, the patient. I started reflecting on my own approach to family and friends who’d been unwell. Little did I realise that the book was actually preparing me for the unwanted intrusion of disease and the paraphernalia that comes with it.

The essence of this book is well described by its tagline “Medicine and what matters in the end”. Gawande discusses several aspects of patient care and his book largely focuses on the care of the elderly and people with terminal illnesses. But the scope of his observations lies far beyond these two groups.

The first thing the book brings about is something we’ve all witnessed or been guilty about: the complete overshadowing of the disease over the person. Once someone falls ill, everyone’s focus shifts to patient care, and what would physically fix the person back to normalcy. This probably works well with diseases that have a short recovery period. Can we apply the same principles of care to the elderly where being sick is a by-product of age or the terminally ill where living without illness is not an option? Do we completely forget the person and her identity with our single-minded objective of treating them?

Since I’ve been diagnosed, I’ve been feeling a number of these things every single day. I don’t remember a single discussion with my oncologist where he asked me about what is important to me, how attached I am to my work and how we can find a way to make all my worlds meet. When I was in the hospital, I was woken up by my nurses at odd hours to change my clothes or the linen.  The loss of control over one’s life makes the whole process wearier than it is. Even from the time, I’ve been back home, I’m constantly negotiating with my family about things I want to do to feel useful and to be active. I understand their concern but it’s a long road and so many things are changing around me that I wish at least some things don’t.

People with serious illnesses can have priorities other than just prolonging their lives. And I think our doctors especially should try to find them out from patients by asking them. We can then make more meaningful medical choices when those factors are also incorporated by our doctors while they talk to us about options of treatment.

The second aspect that resonated very deeply with me is the patient-doctor relationship. Gawande argues that ideally, a doctor must neither be paternalistic (the earlier trend) or just informative (how doctors tend to be now) but somewhere in the middle. They must jointly interpret the patient’s situation with them and arrive at crucial decisions together.

My oncologist, though an excellent doctor, leaves no space for dialogues. He seems to take the approach of giving only relevant information and laying out the options on the table. There is no space for interpretation, no back and forth discussions on what I’d like or what my priorities in life are. These days, I’ve started preparing myself before my appointments with him, otherwise I always feel overwhelmed and unanswered.

Yesterday I had to meet a fertility specialist and discuss my options before chemotherapy begins. I was so put off by her authoritarian approach when we spoke. For her I was just an organism with ovaries, and follicles. I was not a young person battling a difficult disease. Not even someone who’s having to make difficult decisions about weighing risks pertaining to conception in future.

The book poses some very important questions to all stakeholders involved in patient care. I recommend everyone to read it. We all are eventually going to be caregivers to someone significant in our lives. It leaves you with a little more sensitivity and empathy for the person who actually is at the centre of it all. It also has helped me in not loosing sight of the larger picture. However overwhelming and excruciating the process gets, I cannot forget the fact that this illness cannot and does not define me.