Beautifully written, illuminating, wise and deeply moving are some reactions to this masterpiece by Atul Gawande. He has exhaustively dealt with a sensitive issue of ageing and death in our society. Through research, fluid storytelling and personal experiences he conveys what it is that matters most to us as we face the inevitable end of our lives. The book divided in eight chapters follows the trajectory from “independence to death” is easy to read and should be recommended as a must read both for doctors and non-doctors alike. Each chapter begins with a story/personal experience and is followed by a detailed analysis of what it reveals about the healthcare ecosystem.
Each one of us is going to die – most of us probably as a result of ageing consequent to a lengthy period of declining health and debility. Our existing medical ecosystem will be of little help to us. Most of us would spend our ageing years in medical institutions like hospitals, nursing homes or intensive care units at the mercy of regimented routines completely cut-off from important things that matter most to us. The problems of old age and death cannot be handled by modern medicine and we need a different approach to manage the same.
Atul Gawande discusses in detail the life and routine of the ageing and terminally ill patients in nursing homes and intensive cares across US. He very elegantly brings out various reasons why these institutions are detested by most inmates – some of them being shared living, lack of privacy, regimented daily life, lack of free will etc. This in most cases results in resistance by patients “mainly through non-cooperation – refusing the scheduled activities or medications” creating everyday “battles and rage over the priorities and values people are supposed to live by”. He also talks about some successful innovations around these institutions which created “assisted living spaces” – which is something “between independent living and life in a nursing home”. The basic concept of assisted living as envisioned by its creator Keren Brown Wilson, was “freedom and autonomy no matter how physically limited the patient was”. The residents were not called patients but “simply tenants” regardless of their disabilities. They had private apartments with a full bath, kitchen, and a front door that locked. They could have pets and to choose their own carpeting and furniture. They were given control over temperature settings, food, who came into their home and when. They were just people living in an apartment. The novel experiment was monitored closely by the government and they concluded that the “residents had not in fact traded their health for freedom. Their satisfaction with their lives increased, and at the same time their health was maintained. Their physical and cognitive functioning improved. Incidence of major depression fell. And the cost for those on government support was 20 percent lower than it would have been in a nursing home. The program proved an unmitigated success.”
In another innovation to a standard nursing home, Bill Thomas dramatically turned around the Chase Memorial Nursing Home by bringing in two dogs, four cats, 100 birds and small children into the nursing home to combat the “Three Plagues afflicting people in nursing homes – boredom, loneliness, and helplessness.”
The author also talks about doctors, most of whom treat old age as a medical problem. “They treat the disease and figure that the rest will take care of itself”. As per Juergen Bludau, a geriatrician, “The job of any doctor, is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world”. Doctors also need to change their relationship with patients. Most doctors follow the Paternalistic Relationship Model where the “doctors knows the best” and he acts accordingly. In another model he calls the Informative Doctor Model where the doctor will tell you the facts and figures. The rest is up to you. Atul feels that we need an “Interpretive Model” where the doctor’s role is to help patients determine what they want through a shared decision-making model. Interpretive doctors ask, “What is important to you?”, “What are your worries?” and use this information to come to an agreement on the treatment plan that would best meet the patient’s own priorities.
The chapters “Letting Go” and “Hard Conversations” are central to the book. In the chapter “Letting Go” he asks a crucial question like “How can we build a system that supports people at the end of their lives decide that they have had enough treatment?” A doctor always feels that some more treatment can be tried. The growing awareness of palliative care / hospices allows the patients and caregivers to see the value in doing away with endless treatments which offer little or no comfort but allows more relaxed and comfortable life howsoever little the life remains. Gawande writes that doctors view death as the enemy that needs to be defeated, not surrendered too. Unfortunately, “…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 total 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”
In the chapter “Hard Conversations”, he talks about his father’s cancer and how the family navigates through the crisis. He talks about the need to have uncomfortable discussions with patient and their caregivers. Discussions like “What is your understanding about the disease?”, “What are your concerns about what lies ahead?”, “What kind of trade-offs are you willing to make?”, “If time becomes short what is most important to you?”, “Who do you want to make decisions if you can’t?”. A doctor following the “Interpretive Model” would be able to map the treatment plan based on the answer you provide. Like in the case of Susan Block whose father had to be operated for a spinal cancer where there was a risk of becoming quadriplegic – Susan did ask these questions to her father. Her father said that he was ready for surgery and risk being a quadriplegic provided he could have ice-cream and watch football post-surgery. The conversation proved critical, Susan says, because after surgery he developed bleeding in the spinal cord. The surgeons told her that in order to save his life they would need to go for surgery again. But the bleeding had already made him nearly quadriplegic, and he would remain severely disabled for many months and likely forever. What did she want to do, the doctor asked? “I had three minutes to make this decision, and I realized, my father had already made the decision.” She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. Yes, they said. She gave the okay to take him back to the operating room.
Though the book is based on the US health ecosystem, but extremely valuable lessons can be extracted by us Indians too. We do not have such elaborate healthcare system like the US, but the questions and issues the book raises are relevant to us and forces us to think hard. Dr Atul has explained how medical science should shift focus to supporting well-being and not just prolonging life at all costs. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?
In the end he states “I never expected that among the most meaningful experiences I’d have as a doctor – and, really as a human being – would come from helping others deal with what medicine cannot do as well as what it can”