“I do not consider it my duty to die at the convenience of society. I do consider it my duty…to do everything in my power to ensure that I will never be the object of medical intervention that cannot restore my life but only prolong a costly living death.” Susan Jacoby concludes her story with these powerful lines.
We, has humans, had no choice in choosing whether we wanted to be born, or grow up into this world. For the longest part of our lives, society would dictate us and box us in its set rules: what we should wear, what we should eat, what we should be studying, what should we be doing for a living, whom we should marry, at what age should we get married, how many children should we have; the list is endless.
Death is a topic, that most people would like to shoo away, and push into oblivion. But dying is inevitable, and death can arrive to anyone at any time. People cannot bargain with death; yet people find it difficult to discuss one thing that they could have in at least under some control – dying.
Unlike his siblings and in-laws who died early without much medical intervention, my paternal grandfather, who is 73, has been through various medical interference in order to sustain his life. At the age of 40, he had his right leg amputated above the knee due to a blood clot. Both his kidneys have failed, and he has been going for dialysis for as long as I can remember. He has had two by-pass surgeries too. Recently he broke his left hipbone, and now has to be wheel-chaired around. When his hipbones were fine, he would wear his prosthetic leg and do various activities without needing help from anyone. Today as he is bound to a wheelchair, my grandfather has voiced his feelings: he severely dislikes and is irritated by having to rely on people for help. This is when my grandfather called a meeting with my father and my father’s younger brother. My grandfather got his advanced directives and wills ready. He requested a DNR form; and has told his children not to try to revive him anymore, or hook him up to medical devices in order to keep him alive.
Though this talk was hard, my grandfather has become the first person in my family who has talked about his wishes in regards to how he wants to die out. His talks, got a larger part of our family discussing their own deaths. Honestly, this has been a big step for my death-denying family. We are coming to terms with one of life’s biggest realities.
As a society, it is needed for death to be talked about more. Our instincts always guide us in dangerous situations to fight for our lives: survival is our basic instinct. But so is the avoidance of pain. Death is inevitable, so why don’t we focus on the avoidance and reduction of pain and suffering when we do arrive at our deathbeds? Why don’t we make that our end of life quest?
It is never too early to discuss our deaths, our advanced directives or our living wills. It is never too early to have an idea on whether we want to die out with or without extreme medical interventions. It is never too early to voice our ‘freedom’ of choices.
Too often, people are reluctant to make these choices as they know too little about choices offered at the end of life stages. My grandfather, has been a pioneer example for my family. At every hospital visit of his, he would engage in conversations with nurses and doctors, questioning them about his situation, questioning them about decisions he could partake in that involved his body. He made it a point to understand each and every medical procedure he went through: what it did, and what side effects it would leave him with.
My grandfather has voiced his feelings to his children about his ‘end of life quest’ and at the same time, entitled my father as his health care proxy: putting full faith in my father to act out his wishes for when my grandfather does arrive at his deathbed. My grandfather has requested to die out at home, surrounded by family.
Where you want to die is another important choice that people should start making as a part of end of life decisions. Would you rather die in a hospital, hooked to medical devices? or would you rather die in your house surrounded by your loved ones?
It is our responsibility to ourselves to decide what should be done to our bodies, for when at end of life or because of an accident. It is our responsibility to ask healthcare providers to explain and help us understand the various forms available for end of life decisions.
It is our responsibility too, as the family of a loved one who is facing an end of life situation, to oblige to their wishes. It is our responsibility to question heath-care provides, it is our right to know and understand the procedures healthcare providers wish to put our loved ones through.
People need to communicate freely with healthcare providers and families about end of life situations: it’s better to have an understanding of a wider array of options and decisions for end of life, rather than bounding ourselves and placing our lives and decisions in someone else’s hands. More knowledge for end of life decisions can protect more people, and save a larger number of people from extended pain and suffering.