Death to most of us is a brutal subject of discussion. We all have experienced, at some point in time, how the death of someone close can leave us with a wretched empty feeling. We hold this inevitable event in a negative light and I understand why we forbid ourselves to even think, let alone talk about the single most unavoidable episode of our lives.
Without an exception, we all are going to perish someday. That’s how nature has designed our lives – to come and go.
Between these two extremes; the birth and the death, there is a story to be lived and passed on. To experience and remember the moments of life that were worthwhile. And, when our loved ones move toward the end of life’s journey, how do we best prepare them for the outcome? How do we make their waking moments more meaningful than ever?
While we see technology has deeply made some breakthroughs in the field of medical science along with the sophisticated devices and myriad drugs to cure the sick, and institutions to take care of the old debilitated people, how much do we think of a system that can provide comfort and well-being to those who are in their last stage of life, in a truly compassionate manner?
As I perused Dr. Atul Gawande’s Being Mortal, I got a new understanding of a subject that we all must have thought of in passing on numerous occasions but chose not to contemplate. How do we take care of our parents when they are old and of a loved one who is suffering incessantly? What to do if we are in a similar condition?
In India, I know how strongly we feel about taking care of our aging people. The children naturally would keep their old parents with them and tend to them till the very end. It is a practice that is ingrained in us and not something that is questionable. While this is unsurprising as part of our culture, America and some countries struggle with this approach of nursing their old, fragile folks.
Being Mortal is a wonderful book that deals with this sensitive subject and its underlying issues, poignantly expressed by the author, things he has seen as a surgeon in the health care system, the contrast that he finds in the attitude toward the dying in the US and in India, where his roots lie. He talks about his grandfather who had lived more than 100 years of age.
He led a dignified life and he was respected by everyone in his family. All the serious matters of the family were consulted with him despite his age. On the contrary, his age factor served him the respect he deserved. Had his grandfather lived in the States, he would have been pushed to a nursing home because he may not have fitted into the category of people who can take care of independent activities of daily life, such as eating, using the toilet, dressing, bathing, grooming, getting out of bed, walking, preparing their own food, handling their own finances.
Today there are dozens of assisted living homes in the US; a concept of giving 24×7 assistance to the frail under a roof that would give an environment of feel at home and allow to live an independent life, such as keeping the favorite furniture, carpet and in some cases, a dog, bird or a cat without compromising safety.
When a person loses his ability to manage the basic chores of his life, it becomes worrisome for the family.
With the intention of providing better care, the children think of nursing homes and institutions that could do a better job in giving care to their parents. But, what really drives them to take such step? They say it’s the autonomy of their own lives and safety for their loved ones. But, safety itself becomes an imprisonment for their loved ones which the children would never want to inflict upon themselves. There is no room and no freedom to make choices.
And that’s the irony. Safety turning into captivity!
Reading this book made me pause several times, to think of at what cost we are pushing the envelope to sustain the life of the old and the dying. There are anecdotes of terminally ill cancer patients who wanted to fight off the disease till the very end but wanted to spend their last moments with their family and not in the hospital bed. Chemotherapy, narcotics and strong drugs, making them weak and feeble yet unable to decide when to stop.
To what extent the patient wants to keep going and when does he want to stop is a delicate matter to discuss, yet important, as the surgeon tells the reader. As a doctor, he too fails at times to bring the matter in front of his patient in a straightforward and sensitive way. He says that today most of the doctors, including him belong to the category of Dr. Information – someone who lays out cold facts and description and letting the patient decide on the information supplied to them.
Nevertheless, this is where the doctors need to break the ice and go a bit further in interpreting the information they are serving to their patients. Patients want to know the real meaning behind that information and take decisions with the doctor’s help.
Citing his own father’s struggle with cancer, who went on to live 4 more years post the diagnosis, his father died the way he wanted, in his bed peacefully with his family around – he didn’t want any suffering, no ventilation or life support system.
Dr. Gawande says it is crucial to have a clear discussion with the patient and his family. To talk about exactly how much the patient is ready to tolerate the suffering and how much he is not willing to.
At the end of the day, those who are nearing their end want to make every moment worthwhile with their loved ones, to devote more energy to the meaningful things in their lives and build a great story to remember. These are the things that go beyond living longer and safer.
Every individual has the right to decide how he wants to spend the end days of his life, whether they want to live on the artificial support system or live the remaining few days in their home. This has come to known as “Death with dignity” – another term for “Assisted suicide.” Today, many countries support speeding of death – countries like the Netherlands, Belgium, Switzerland allow the doctors to prescribe lethal medicines – to alleviate the sufferers from the suffering.
All of us want to live a life that is worth remembering. But, if such a day comes, whether we want to live a life of suffering or want to live a life that is incomplete but happy is something we all must mull over.
This book has stunned me, made me sad at times, most importantly, it made think about death in a different way. When I had finished reading this book, I did ask myself. If I am in a similar condition, what would I like for myself?
I thought for a while and it didn’t take me long to find out the answer. I believe in cherishing good times, living a life with the people I love and making this limited life worthwhile. And, when I want to go, I would definitely want to leave with dignity.