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Living Will

Bindu Kulkarni

Author: Bindu Kulkarni

Date: Mon, 2018-03-12 12:43

This morning 10th March 2018, when I opened the newspaper, the headline in TOI “SC legalises passive euthanasia and living will, says right to life includes right to die” brought back a lot of memories.

My mother had written her “Living Will” in the year 2001, with hope that we could use it, if required and let her die a peaceful death. I still possess it as a memory of a person with grit, to whom dignity of life was as important as dignity of death.

I had a very modern mother, a lady born ahead of her time. She was born in Quetta in Pakistan in the year 1933. During partition she travelled to Mumbai with her relatives. As she was a young 14-year-old girl her parents were very concerned about her safety and thought she should leave Pakistan at the earliest. Without a ticket she travelled by ship from Karachi to Mumbai. In Mumbai she stayed at Versova along with her many relatives for a few years. Her stories of how she travelled to Grant Road for schooling along with fisherwomen in the bus seems like story from a history book. She completed her schooling, graduation, and post-graduation to become a teacher. She was the only one in her family of eight children to do a post-graduation. In a family where men were regarded as a privileged lot she fought her way to study and become an earning member of her family.   She had a late marriage as it was difficult to find educated Sindhi men then and she was determined to get married to someone who was as educated as her. Her struggle did not end here, she worked hard to support her husband and bring up my brother and me. There were times when she had a financial crunch or health issues but she never lost hope.

She was a brave lady, one who fought legal battles to get custody of her house, she took care of my father who was unwell for about 10 years. She instilled in us the feeling of self-worth and gratitude. She never lost an opportunity to discuss life issues and challenges with us and how we could fight it. Life was not easy for her, as she had her set of health issues too. She lived with diabetes, arthritis, cardiac problems and survived breast cancer. Yet she was never dependent on any of us as she loved her independence and strived to maintain it. Even the day before she was admitted to the hospital she had gone shopping with her friend to buy vegetables for the house.

She believed in the “Living will” . She had written one 10 years before she expired and handed it over to me with signatures of witnesses so that I could use in the hour of need.  I tried to use it when she was hospitalised and was on the ventilator but in vain as I was told “Living will” is not legal. I was in pain, I wanted fulfil my mother’s desire and not extend her life on life saving devices but get her home so that she could live her last few days with us and not in the cold hospital room. Then existing medical and legal system did not give me the freedom to execute her “Living Will”. Luckily she did not suffer too much and was on the ventilator for just two days. She lived her life with dignity and died with dignity with her children around her hospital bed.

 Today, I am delighted that the Supreme court has passed the verdict.  Justice Bhushan has mentioned in the verdict "An adult human being having mental capacity to take an informed decision has the right to refuse medical treatment including withdrawal from life saving devices”

Thank you for legalising the “Living Will”.  Now we can have many more suffer less and not have a prolonged vegetative living.

Let us have the right to live and die with dignity. It’s my Life.

 

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Comments

Thanks Bindu, for sharing with us about your mother and the pride you have in her. I can see where the grit and determination in you comes from. Indeed the 'living will' was required...let's hope its implementation is not riddled with issues. Proud to know you closely :)

It is very important that passive euthanasia and living will are implemented right. Palliative care may be difficult but just helps dying with dignity.We as a country should move towards it. I have learnt a lot of life lessons from my mother...I hope I can use them courageously when going gets tough... Thanks

Bindu, you have written this article so beautifully. I still remember the many times I have met your Mom and her beautiful smile. Her broad views and always welcoming us to the house, her talks with us...those are true memories to treasure. I too agree about the 'Living Will'. I hope it is implemented properly. It is painful for the person going through it and waiting for death to take over but also more painful for the people who are taking care and seeing the person suffer. I am so happy that I was able to meet your Mom and spend time with her. Take care!

My mother liked youth as she used to think it is easy to communicate and relate to them...She used to encourage us to get friends home ...Those ever fun times Legalising living will is a big move..Hope it is used responsibily

The story is heartwarming and gives me goosebumps. It's always hard to see your loved ones suffer and this is a big step towards being prudent in the matters concerning life. I believe it takes immense courage to take such a step to reduce the suffering of your loved one. Amazing to witness that how things that most people consider trivial in the legal system are of high relevance and importance to many. Thanks for sharing this !

It is very personal and important for individuals to understand,realise and have conversations about life and death with family members... Difficult conversations but I guess it helps in taking decisions during tough times...A living will is positive step towards it

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As a marathoner, I have immense respect for runners, knowing the mental and physical challenges one has to overcome, to experience something truly surreal. To me, marathon is a journey of self-discovery, a realisation of power of self, a test of one’s grit & determination . It is a race in which our boundaries are challenged and our limits are stretched. Running to me is much more than just logging kilometres. It is my meditation which cleans my body and soul of all stress, negativity and malice. It gives me a feeling of self-worth and optimism to face any hurdle in life. It is one journey which is just mine. It is one success which I can enjoy without any burden of comparison, evaluation and any pressure of winning or losing. The Blogger’s analogy of marathon with life is so true. Life is a race full of obstacles and challenges which have to be overcome with optimism and conviction. We can either give up or take each milestone as a step towards the bigger goal. Success in life is not about great job, great partner or a great holiday. It is about enjoying the smaller steps to reach our goals and cherishing the experience of growth & learning . As in marathon, in life too, we should never lose ourselves to the rigmaroles of life, Invest in ourselves, pursue our passion and live our life with a never give up attitude. We are all in the race together. No matter how fast we run, we all reach the same destination. So please take a break, enjoy the journey, and pick up great memories enroute so that we have great stories to tell our next generation.

Thanks a lot Ma’am for sharing the heartwarming story. It really needs immense courage to share such a poignant story at this platform. I feel touched with the “Living Will” written by your mother in the year 2001. She was indeed a great lady who has achieved so much in life despite of several roadblocks. Her journey from Pakistan to Mumbai and later getting post graduation degree (alone in her family) is really inspiring for everyone. Indeed she was a lady born ahead of time. I personally believe that legal sanction to “Living Will” also known as “Passive Euthanasia” is a landmark verdict by our Supreme Court of India. It allows withdrawal of medical treatment with deliberate intention to speed up the death of a terminally ill patient. While reading this blog, I got emotional as I recollected the case of my first cousin. It was year 2012 when it all happened. My cousin was suffering from some stomach ache for which he took some pills which reduced the pain. This stomach ache was happening after regular interval & he completely ignored it thinking of some food poisoning or something. After 1 year when the frequency increased he told my father about it. We called him at our residence in Patna & gone for medical health check up. The report which came was really painful as I still remember when the doctor told us that he has blood cancer & that too at the last stage. He suggested us to admit him at Mumbai & also given us hint that he has only few weeks left. We admitted him at Tata Memorial Hospital in Mumbai & the treatment began. During the course of treatment my cousin told me that the pain is really unbearable & he relates this pain with 100 snakes biting him at a time at different places. He suggested us to stop the treatment & take him to his place so that he can die in peace. We tried for that but hospital management won’t allow us to do so. If this Living Will was at place at that time then we could have fulfilled his last wish. I am also equally delighted that the Supreme Court has finally passed the verdict.

Thanks for sharing your story Ma'am. Your mother was truly a very modern woman. It is always sad to see your loved ones going through the pain. Given a choice, we all will want to die with dignity when our time is up. I have different perspective on the subject though. I believe that life represents hope. Survival instinct is natural. Simply being alive, even with the help of a life support machine, represents a hope in the person to live. The “living will” in my opinion is a choice made in despair due to inability of medical science to cure a person, more than the willingness to end his or her life. It is not over until it is over. Who knows, the medical science may invent a new treatment for the illness considered incurable today. Miracles do happen. A seemingly terminal patient may survive the treatment and start living a normal life. After all death is inevitable. Till it actually happens, we must keep the hope alive. There is also a risk that the law is misused by people who look at the elderly or disabled at home as a burden. We do not have a fool-proof system in place to prevent the misuse. While the law has a good intent, we must make sure that the right to life is not compromised.

Madame, I take this opportunity to appreciate your article, and sharing something so personal. Your mother’s story is inspiring. I can relate to her story even more as my grandparents left Pakistan at the time of partition, and my grandmother went on to become first working woman of our family. Your article takes me back to the night of 18 Feb 2015. I was lying in pain on a hospital bed after my knee surgery. The nurse came and asked me “is there any pain”. I so wished, I could have quantified it. Post-surgery, it took me 15 days to stand on my feet. Those 15 days, every day, the thought of “Living Will and passive euthanasia” crossed my mind. Those days made me believe that though it is important to live, it is more important to be alive. I have always been a stage performer, writer and a sports enthusiast. By my inability to move, above three facets of myself were slowly being consumed. The concept of being alive in a vegetative state made me think - “what is the purpose of life if I cannot contribute? If I am being kept alive but my near ones suffer in vain?” I agree with your opinion on “right to live and die with dignity”. The Supreme Court’s verdict has left many of us delighted but has also left us with 2 open questions. Firstly, how well will it be implemented? Secondly, do people understand how to exercise such right? I once again compliment you to for your grit in touching base with this sensitive topic. I am hopeful of a progressive society where people will understand and respect individual choices.

Ma’am, thank you for sharing a story this personal. I have always advocated Euthanasia since I got to know about the term. It was absurd when I got to know that the penalty against euthanasia was imprisonment. I would like to tell you a personal story here, I could relate to this story because of my Nani. She was fighting her third battle against cancer in the year 2012. Being the youngest grandchild of hers, I was closest to her. I would go visit her daily as I did not want to miss a moment with her. I still remember the feel of her bald head when she lay in my lap. Her health was deteriorating and so was her will to live. She had no strength left in herself. She would just lay down all day. She had lost her colour, looked as pale as a lily. I remember trying to comfort her with talks when I very well knew I could do absolutely nothing to help her out of this pain. I remember multiple instances when she asked us to relieve her from the pain. As her condition worsened, she would be intoxicated all day due to morphine. Last one year of her life was spent suffering in pain, in and out of the state of coma. She was incapable of moving, and we could do nothing to help her out of this state. This built my firm stand pro-euthanasia. It would have been more of a liberation, than death, to have let the doctors euthanize her. She was barely out of a coma in the last month of her life. We bid her farewell in the December of 2013. She passed away at night, with my mom besides her. It is a pity that in a country like India, Passive Euthanasia is just being legalized, despite having cases like Aruna Shanbaug, who had to stay in the vegetative condition for 42 years. Nevertheless, it is a progressive step by the supreme court and I applaud it for passing this decision.

Like mother, like daughter. I could see the resemblance of your mother and you in taking up the most difficult path which is chosen only by a few people or I can say wouldn't choose at all. I could see that it takes immense strength to agree with the decision that was taken by your mother and your mother was a true inspiration for all the struggles she has gone through and faced those with confidence and courage. It shook me to the core after reading the letter written by your mother, I cannot even gauge the strength that would have taken while your mom was putting the words on paper which she knew for sure that one day the letter would be given to her own children. Passive euthanasia which allows the withdrawal of medical treatment with the intention to hasten the death of a terminally-ill patient can be good or bad and certainly depends upon the situation where passive euthanasia is being practiced. Euthanasia can lead to an end of suffering. It is a huge amount of pain to stay bedridden or handicapped for life and a person cannot be forced to suffer from this pain most importantly suffering of an ill person cannot be understood by people who have a normal and healthy life. Hence, if there is no chance of the person getting cured of a really pitiful condition, it can be rather advisable to put the person through the procedure of Euthanasia. But people can take advantage of this many people can fall prey to heinous crimes like getting murdered for wealth or just because no one wants to take responsibility for the care of a terminally ill person. Even doctors can hide their mistakes committed during medical treatments with the help of Euthanasia.

Thanks a lot ma’am for sharing your story. I have always firmly held the belief that an individual has the “right to die” with dignity. I was thoroughly in captivated with your mother’s journey and how she rose above the norms of the society and till the end fought for what she believed in, her endeavors both for her family and herself truly signify what a person should fight for in their life. Passive euthanasia or living will is a landmark verdict by the Supreme court of India. Though euthanasia existed in other countries but India followed suit a little bit late. In a progressive society that exists today the law of the land should not require any individual to not die in peace and be a burden on their family members. There are many childless couples and individuals who do not want to live beyond a certain age if their immune system refuses to do so, they do not want to go through the horror of them loosing their mental state and be dependent on life saving machines. There are countless patients who are suffering from terminal ailments and they want to call it quits when they can under full consciousness. Earlier euthanasia had a severe punishment i.e. imprisonment. Whenever the term euthanasia is mentioned we cannot fail mentioning Aruna Shanbaug. She had to endure vegetative condition for 40 plus years and eventually died of pneumonia. Her case brought into question the very existence of a law criminalizing euthanasia and how could they justify what she had to go through for 37 years. Still the verdict on euthanasia is cornerstone in Indian judicial system and will be remembered as a one which respected all its citizens and took notice of their cognizance. I would once again compliment you on bringing this mesmerizing story to all of us.

With great power comes great responsibility. First of all, thank you for sharing the story and a big salute to your mother for her courage, determination, endurance, patience and achievements. I completely agree that she was ahead of her time and deserves any praise bestowed on her. Euthanasia, active or passive, is a great power and needs to be exercised with quite precision. The landmark verdict by Justice Bhushan is something that we should rejoice and is truly a step towards more open and progressive thinking for a country like India. That said, the law has been passed but needs to have careful implementation. An unchecked power like this not only can endanger the lives of the unfortunate and non-terminally ill patients but also of other relatives. The court has said that family members and relatives of terminally ill patients seeking passive euthanasia could approach the court. A team of doctors would then be appointed by the court to decide its validity. This is a good step and a much-needed control. However, it remains unclear how courts could guarantee that living wills were not drafted by patients under coercion. It’s a much necessary check that the living will has to be signed by the patient in the presence of two witnesses, preferably independent, and countersigned by a jurisdictional judicial magistrate, first class (JMFC) and record their satisfaction that the will has been recorded voluntarily and without coercion. However, it still leaves a lot of scope for having a coerced will behind the scenes. There could be situations where people could leverage brute force and the loopholes in our laws to best suit their evil needs. I know I must have made it sound quite pitiable, but the life of a person, whether well, terminally ill or in a vegetative state needs to be respected. And the court may also need to determine that the relatives do not have ulterior motives for execution of the will. Thinking of Euthanasia, the age-old adage “Decisions made when you are angry or sad are seldom right” comes to mind and such a situation would tend to stir both the emotions in the receiver. Hence there should be a high degree of caution, on the sides of both the patient and the relative, regarding the exercise of such a tremendous right.

Warm Regards, Ma’am. How thoughtful it is of you to share a deep personal experience with us. Who would have expected a simple headline to bring out a lesson so meaningful. Going by the attributes you’ve mentioned and realizing the “Living Will” was written ten years before the happening of the undesired event, I can well imagine the charismatic lady as a person open for the surprises and climaxes of life. It takes a lot of maturity and wisdom to accept this totally, but isn’t it the only obvious thing in our lives? Once a person starts accepting the temporariness of life, and understands the value of the time given, don’t you feel he’ll try his best to make the best out of it? If we could raise the awareness and consciousness of people just a little, so much could have been different. The medical institution here was hands tied because of the law, but now along with the presence of passive euthanasia can’t we have mercy killing legalized too? There are so my patients today with very less hope and agonized with the suffering- possibly more mental than physical. In my own family, my cousin grandpa, was in the last stage of cancer with barely any hopes left, constantly monitored in an ICU, mostly terrified or unconscious. We couldn’t stand to look at him. We prayed either he heals or takes the heavenly walk, either way, we just wanted his suffering to end. But we weren’t allowed to. He had to complete his own journey. Here, I feel even the suffering on the death bed comes because the person missed the life pass by and wasn’t fully satisfied in his journey. If a person can enjoy every moment when he is alive and graciously accepts everything that comes to him as an experience, any moment death comes, he’ll be happy to welcome it. One day, we all have to die, the question would be who lived. Isn’t it interesting how a single thought can channelize a train of thoughts and bring out something so unexpected? Thank you for thresholding the thoughts, Ma’am. It’d be an opportunity to hear you speak and share more of your life experiences.

First of all madam thank you for sharing such an inspiring story about your mother. The fact that in spite of the odds the resilience and progressive mindset of the protagonist in the blog is something that can emulated. It does strike a chord and emphasizes the fact the life or death of any person should be the choice of that particular individual based on situations. For example if you look at pet dogs when they know that their time has come to cross the rainbow bridge they tend to go to a place which they liked in their life time or to someone to whom they were most connected. Probably it gives them a sense of peace that when they pass on to the other world they do it reliving the best moments of their lives. So why can’t the same be applicable to humans. When my grandfather expired he was in his bed surrounded with all his children and grand children. On the contrary when my aunt expired she was all alone wired on to all the tubes of a ventilator unit in an intensive care unit. So personally I feel that up there my grandfather must be feeling more content in his after life than his daughter. So we need to understand that if there is appoint of no return we have to let it go. Why to subject a human to suffering and extend his or her life. It would be much more peaceful for the individual to be with family and friends in the last moments. The current judgment on passive euthanasia and living will has opened up a way for this. And case if it’s the fear of losing the mortal is what we humans suffer from then we should practice organ donation. By doing this we are allowing the person who is leaving us to live on as a physical memory rather than just a mental memory and at the same time giving someone a better life or even a life as a matter of fact.

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