As a young medical student, I saw a person dying. Fluid was filling his lungs as a heart valve had ruptured from a massive heart attack a few days earlier. I did not have the ability to save his life where I was working — no immediate ICU or surgical care was available. It struck me later that I had the choice of disclosure. Should I have told him and his wife that he was dying? Would there have been a few minutes of “I love yous” and goodbyes? Or, would ensuing panic be all that remained etched as the last few memories?
Working in the developing world, non-disclosure to the patient, and their right to not know all about their healthcare is the default. Patients entrust decision making and autonomy to their family members, and many times, they are implicitly aware that they are not fully in the loop. Families also do not want diagnoses of terminal illness disclosed to patients. The enduring belief is that this will shorten their life and remove potential for happiness. In cultures accustomed to death at any age, dying is seldom discussed. It often happens, at home, with family, silently, without much accompanying discussion.
It has always struck a chord with me that the dying are aware that they are passing away. The ebb of the body’s energy is not mistaken at the end of times for something else. Spoken or not, it is implicit in every interaction.
In cultures accustomed to death at any age, dying is seldom discussed.
Yet, friends often describe a loved one’s passing from cancer as “sudden” or “unexpected”. “He was doing fine”- in the house in bed, or in the hospital ward, until he fell sick and passed in a matter of days. Despite a terminal diagnosis of advanced refractory cancer, the story that is told is one of death arriving without a warning.
I believe that there are two distinct states of mind— one of caregiving, and the other of grieving. These cannot coexist easily. The caregiver, even the self, nurtures the past and hopes for the future, since the present is intolerable. The grieved, instead lives solely in the past, and rewrites history to make sense of the powerlessness to change the future.
Physicians struggle with this. As a patient transitions from curative to comfort driven measures, they raise the specter of disclosure, of poor prognosis and impending death, as a way to absolve themselves of any guilt, any way to impact the future. Rarely, this is needed in the developing world. As a gross generalization, bucket lists are the privilege of the healthy and wealthy. Otherwise, many families are already together, at home, with their loved ones, in the non-medicalized ritual of dying that is as ancient as our cultures.
What is forgotten is that no one knows the future. We play with probabilities and pretend that they are certainties. The removal of hope for families and self leaves very little to get through the everyday with. Much has been written about living a pain free day, the taste of something special, or watching a grandchild at play. But there is also the balm of improbable hope, balanced with measured, comfort providing interventions, that allow family and patient to weather the present.
There will always be time for grieving. I am now beginning to see the wisdom of not starting that process while our loved ones are still with us.
-Dr. Naresh Ramarajan
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