What My Father Left Behind For Us: End of Life Care in 2030
“Are you comfortable here? Would you like to change the experience setting in the room? I could send you a different theme file.” The interviewer was enthusiastic to make me as comfortable as possible.
“The forest setting is quite lovely. It reminds me of our family home.” I replied, while watching some of the eucalyptus leaves find their way to the ground.
“Perfect. Let’s begin then. We are collecting stories as Prarthana (means ‘Prayer’ in Hindi) is celebrating their 10th anniversary in a few months. We understand that your father was one of the first hundred people who used the facility. Could you please walk us through your experience of using their assisted suicide services?”
“Sure. As you must be aware, our country has gone through a couple of decades of debates and policy changes around the issue of assisted suicide, after which it slowly became legal throughout the country. Back in 2030, it was only legal in 4 states in India. While the hospice culture was growing fast in India, legalising assisted suicide was a victory by itself-it mobilised so many citizens, especially ones with terminally ill patients to make decisions in several personal circumstances with an alternate route to die with dignity.
While many of the facilities were fairly generic, there was a unique service being tested in the state of Kerala. As a pioneer in palliative care, they collaborated with European company and created a premium centre known as Prarthana- a breakthrough in the design of end of life experience that used the understanding of the brain to tap into deep set memories which were converted into an experiential interaction for a patient while they took their last breath. The concept excited my dying father. After seeing his life partner pass away in such grim hospital settings, and seeing his body deteriorate due to a rare kind of cancer, he made a decision to actively participate in planning for his death well.
Prarthana is an enchanting facility overlooking the newly restored backwaters and now caters to over 1000 people and has a subsidised wing for armed personnel, women and children. Back then, it was available to a less than 150 people. Dad was the 42nd person to use the facility. He wanted to be his favourite number, 45, but three people dropped out of the test.
The facility was modern with a traditional twist of Kerala woodwork. Every space looked like a piece of home-corridors with beautiful laser cut mosaic tiles that were easy to clean, plants and creepers overflowing from balconies, green house gardens and parks, animal therapy and more. It looked like a piece of paradise really. The halls were filled with screens of beautiful infographics. Most of the people who came here to die well volunteered their information in order to help make the experiences better for those coming behind them. These infographics were filled with metrics of dying well such as pain mapping, ‘emotion capture’ that collects and collates the dominant emotion most people felt when taking their last breath, quotes from families and loved ones, and more. These were the new kinds of donations people made-the ones that focused on sharing information, being vulnerable, and being a pillar of strength and support to the new families or to the ones who came alone. What’s beautiful was that while people looked fragile, nobody was hooked to urine or drip bags. The medical facilities took this aspect of wellness into account and focussed on creating invisible solutions towards illness. But most of all, families had a chance to reunite, as families, take back their roles as daughters, fathers, uncles and aunts as opposed to being patients or caregivers.
The doctors and technicians conducted a body, brain and emotion scan as a final confirmation to show that my Dad was in the right mind and body space for the immersion. He was in his 3rd stage of cancer and had been battling numerous treatment for 7 years. It was essential to have a clear understanding of his pain points in his body and the complex emotions that they evoked. Dad’s body map was classified as complex, where some pain points also gave him numbness through certain period in a 24 hour cycle. A patch was printed with various pockets of medications and monitors and stuck to his thigh and was changed every three hours after getting an update on the pulse and body scan. Throughout this time, he could self-monitor his vitals on his phone. He sat with his grandson, showing him how the medicine would flow into different parts of his body in real time.
The Memory Mediator, George was extremely friendly and kept us informed throughout the process. “We are done with his neurone mapping. This will allow us to monitor his pain and assist his comfort. Just to confirm, he has requested for 3 memories-going to the movies with his parents as a young boy, his wedding, and the time when the family portrait was shot. We have documented the photographs and memorabilia that you sent us into the system so that it will help curate a better virtual experience for him.”
On the second day, we were all taken into a digital and immersive yoga space. This was to ensure that Dad’s vitals were being monitored carefully but more importantly, not done like they would in a regular hospital setting. It was remote and yet, on his phone. We joined him in the session and this became a beautiful family activity. We chose a collective memory and were given an immersive experience in order to understand what Dad was going to see and feel on the actual immersion day. The VR experience was magical. You felt like you were really there, tapping into the memories of how the sand felt in your feet, cola and roasted corn in the afternoon sun, loud waves crashing... I felt like there was salt in my mouth from the ocean. We saw silhouettes and abstractions of ourselves during this process as it was a quick way of showing us the experience. They also didn’t want to overwhelm us. During the lab test, we heard that a lot of people broke down as the memories felt so real and the emotional pain was hard to bear. Due to this, they thought it was better to build us from grainy abstractions to vivid memory concepts. We were allowed to attend as many immersions as we needed in order to feel comfortable.
I am unsure of what they do today, but back then, the softwares would weave some of the missing pieces. For example, if I could see the clear beach but my memory had a vague understanding that there were some boats docked, then the software would generate the image for me. It was intelligent to do this so as to avoid ruining the quality of the actual memory.
As a ritual, the person said their final goodbyes and was then seated on a chair or asked to lie down in a bed. My son and husband left the room and watched from the sunbathed viewing room. I wanted to sit in the room with Dad and he was more than happy to have me there. He
chose to sit, almost like the way he read his morning newspaper. Once he got comfortable, they used a translucent film over his eyes, and a VR software painted a calming image based on his vitals. As he was locked or immersed over 70%, the medication is slowly fed into his system that was constantly monitoring vitals.
The procedure can take from 15 minutes upto an hour, depending on how immersive quality of the video. While he watched his memories, the non-invasive machines mapped his swells of stress and calm. The medication was given in doses and in the state of calm to ensure that he would be in the least amount of pain during his last few breaths. The technique was known as ‘Body Mapping.’ Through this time, I saw Dad’s expressions change from happiness to awe to a few tears of joy. Dad was immersed for 33 minutes and then he left us. The machines immediately stopped beeping. The room fell silent like a late night sky. The technician gently removed the VR film, monitor, and medication pack and left us in the room. As the sadness washed over me, I picked up the deadness of my own weight and proceeded to kiss dad one last time. He looked serene, and pain free after over 7 years.
The doctor and I joined my son and husband in the viewing room. The viewing room glass was opaque as Dad didn’t want his grandson to see him being wheeled away. The doctor pulled out a screen and showed us the monitoring results of Dad’s immersive experience. His pain levels never exceeded 2 and his primary emotion was joy. My son had many questions, and the doctor expanded the screen, explaining all his queries with the use of a software that converted Dad’s experience into a digital story book. This was his gift to his grandfather.
Dad was then taken into a room for his optional skin and organ donation. His wish was to be go back into the soil and have a tree grow in his name in a children’s park. As a child, he used to spend hours climbing the mango tree in his back garden, so he wanted to give others a chance to enjoy the tree, just like he did.
The following day, I sat in the serene and yet morose garden one last time, remembering that my father was very much alive the previous day. I saw the ‘Memory Mediator,’ George walking up to us. He smiled politely and then held my hands in his. We sat there in silence, only hearing the chimes in the background. A tear splashed onto my jeans, darkening a tiny spot on it. George patted my hand and said, “Your father wanted to go back home with you. Since he couldn’t, he asked if you could take a part of him with you.” With that, he placed a dainty box in front of me. As I opened it, I saw my late mother’s locket. Before I could say anything, George said, “Before your father was (locked into) his immersion session, he requested us to install his heartbeat from the time that he saw his favourite memory so that you’d always carry his happiness with you. It gets activated when you experience happiness or a sense of peace.” He carried on by telling me the features and technicalities, but the surprise of this immortal gift overwhelmed me.
This was my sense of gathering my father and what he left behind on 15th December, 2030. A sense of quiet relief and gratitude washed over me. While I felt rudderless, I remembered what the last 7 years looked like-endless visits to doctors, tests and charts all over the house, mum’s passing, dietary restrictions and more. Could I wish he stayed longer? Of course I did. Anyone would. But then I also got the privilege to see him leave the way he wanted, surrounded by family, memories, while leaving this benevolent gift behind.
Three days later during the memorial service, one of his colleagues shared stories of how my father and him started their business idea at a chai stall, how they got punished during the college, and more. At one moment, I found myself in splits, along with the rest of our loved ones and friends. And then something even more beautiful happened. I heard my father’s heartbeat for the first time since he left us. He was tangibly with us in spirit.
So this is how my father’s life, not suffering, came to an end. It was about making his life and experience more wonderful, rather than just less horrible or traumatic. I am glad he used his lips to do what they were meant to do-to smile and walk into the twilight of his memories.”
The silence overpowered the room. We turned into silhouettes as the experience in the room turned into a prussian night sky, laden with infinite stars.