This is the most difficult blog post I’ve ever had to write. Almost 3 months ago, my sister passed away unexpectedly. It’s too painful to talk about the details. We were extremely close and because of that the loss is even harder to cope with.
The story I want to tell you today is about what’s happened since that day and the impact it’s had on how I view the world. In my work, I spend considerable amounts of time with all sorts of technology, trying to understand what all these advances mean for our health. Looking back, from the start of this year, I’d been feeling increasingly concerned by the growing chorus of voices telling us that technology is the answer for every problem, when it comes to our health. Many of us have been conditioned to believe them. The narrative has been so intoxicating for some.
Ever since this tragedy, it’s not an app, or a sensor or data that I turned to. I have been craving authentic human connections. As I have tried to make sense of life and death, I have wanted to be able to relate to family and friends by making eye contact, giving and receiving hugs and simply just being present in the same room as them. The ‘care robot’ that had arrived from China this year as part of my research into whether robots can keep us company, remains switched off in its box. Amazon’s Echo, the smart assistant with a voice interface that I’d also been testing a lot also sits unused in my home. I used it most frequently to turn the lights on and off, but now I prefer walking over to the light switch and the tactile sensation of pressing the switch with my finger. One day last week, I was feeling sad, and didn’t feel like leaving the house, so I decided to try putting on my Virtual Reality (VR) headset, to join a virtual social space. I joined a virtual computer generated room where it was sunny and in someone’s back yard for a BBQ, I could see their avatars, and I chatted to them for about 15 minutes. After I took off the headset, I felt worse.
There have also been times I have craved solitude, and walking in the park at sunrise on a daily basis has been very therapeutic.
Increasingly, some want machines to become human, and humans to become machines. My loss has caused me to question these viewpoints. In particular, the bizarre notion that we are simply hardware and software that can be reconfigured to cure death. Recently, I heard one entrepreneur believe that with digital technology, we’ll be able to get rid of mental illness in a few years. Others I’ve met believe we are holding back the march of progress by wanting to retain the human touch in healthcare. Humans in healthcare are an expensive resource, make mistakes and resist change. So, is the answer just to bypass them? Have we truly taken the time to connect with them and understand their hopes and dreams? The stories, promises and visions being shared in Digital Health are often just fantasy, with some storytellers (also known as rock stars) heavily influenced by Silicon Valley’s view of the future. We have all been influenced on some level. Hope is useful, hype is not.
We are conditioned to hero worship entrepreneurs and to believe that the future the technology titans are creating, is the best possible future for all of us. Grand challenges and moonshots compete for our attention and yet far too often we ignore the ordinary, mundane and boring challenges right here in front of us.
I’ve witnessed the discomfort many have had when offering me their condolences. I had no idea so many of us have grown up trained not to talk about death and healthy ways of coping with grief. When it comes to Digital Health, I’ve only ever come across one conference where death and other seldom discussed topics were on the agenda, Health 2.0 with their “unmentionables” panel. I’ve never really reflected upon that until now.
Some of us turn to the healthcare system when we are bereaved, I chose not to. Health isn’t something that can only be improved within the four walls of a hospital. I don’t see bereavement as a medical problem. I’m not sure what a medical doctor can do in a 10 minute consultation, nor have I paid much attention to the pathways and processes that scientists ascribe to the journey of grief. I simply do my best to respond to the need in front of me and to honour my feelings, no matter how painful those feelings are. I know I don’t want to end up like Prince Harry who recently admitted he had bottled up the grief for 20 years after the death of his mother, Princess Diana, and that suppressing the grief took him to the point of a breakdown. The sheer maelstrom of emotions I’ve experienced these last few months makes me wonder even more, why does society view mental health as a lower priority than physical health? As I’ve been grieving, there are moments when I felt lonely. I heard about an organisation that wants to reframe loneliness as a medical condition. Is this the pinnacle of human progress, that we need medical doctors (who are an expensive resource) to treat loneliness? What does it say about our ability to show compassion for each other in our daily lives?
Being vulnerable, especially in front of others, is wrongly associated with weakness. Many organisations still struggle to foster a culture where people can truly speak from the heart with courage. That makes me sad, especially at this point. Life is so short yet we are frequently afraid to have candid conversations, not just with others but with ourselves. We don’t need to live our lives paralysed by fear. What changes would we see in the health of our nation if we dared to have authentic conversations? Are we equipped to ask the right questions?
As I transition back to the world of work, I’m very much reminded of what’s important and who is important. The fragility of life is unnerving. I’m so conscious of my own mortality, and so petrified of death, it’s prompted me to make choices about how I live, work and play. One of the most supportive things someone has said to me after my loss was “Be kind to yourself.” Compassion for one’s self is hard. Given that technology is inevitably going to play a larger role in our health, how do we have more compassionate care? I’m horrified when doctors & nurses tell me their medical training took all the compassion out of them or when young doctors tell me how they are bullied by more senior doctors. Is this really the best we can do?
I haven’t looked at the news for a few months and immersing myself in Digital Health news again makes me pause. The chatter about Artificial Intelligence (AI), where commentaries are at either end of the spectrum, almost entirely dystopian or almost entirely utopian, with few offering balanced perspectives. These machines will either end up putting us out of work and ruling our lives or they will be our faithful servants, eliminating every problem and leading us to perfect healthcare. For example, I have a new toothbrush that says it uses AI, and it’s now telling me to go to bed earlier because it noticed I brush my teeth late at night. My car, a Toyota Prius, which is primarily designed for fuel efficiency scores my acceleration, braking and cruising constantly as I’m driving. Where should my attention rest as I drive, on the road ahead or on the dashboard, anxious to achieve the highest score possible? Is there where our destiny lies? Is it wise to blindly embark upon a quest for optimum health powered by sensors, data & algorithms nudging us all day and all night until we achieve and maintain the perfect health score?
As more of healthcare moves online, reducing costs and improving efficiency, who wins and who loses? Recently, my father (who is in his 80s) called the council as he needed to pay a bill. Previously, he was able to pay with his debit card over the phone. Now they told him it’s all changed, and he has to do it online. When he asked them what happens if someone isn’t online, he was told to visit the library where someone can do it online with you. He was rather angry at this change. I can now see his perspective, and why this has made him angry. I suspect he’s not the only one. He is online, but there are moments when he wants to interact with human beings, not machines. In stores, I always used to use the self service checkouts when paying for my goods, because it was faster. Ever since my loss, I’ve chosen to use the checkouts with human operators, even if it is slower. Earlier this year, my mother (in her 70s) got a form to apply for online access to her medical records. She still hasn’t filled in it, she personally doesn’t see the point. In Digital Health conversations, statements are sometimes made that are deemed to be universal truths. Every patient wants access to their records, or that every patient wants to analyse their own health data. I believe it’s excellent that patients have the chance of access, but let’s not assume they all want access.
Diversity & Inclusion is still little more than a buzzword for many organisations. When it comes to patients and their advocates, we still have work to do. I admire the amazing work that patients have done to get us this far, but when I go to conferences in Europe and North America, the patients on stage are often drawn from a narrow section of society. That’s assuming the organisers actually invited patients to speak on stage, as most still curate agendas which put the interests of sponsors and partners above the interests of patients and their families. We’re not going to do the right thing if we only listen to the loudest voices. How do we create the space needed so that even the quietest voices can be heard? We probably don’t even remember what those voices sound like, as we’ve been too busy listening to the sound of our own voice, or the voices of those that constantly agree with us.
When it comes to the future, I still believe emerging technologies have a vital role to play in our health, but we have to be mindful in how we design, build and deploy these tools. It’s critical we think for ourselves, to remember what and who are important to us. I remember that when eating meals with my sister, I’d pick up my phone after each new notification of a retweet or a new email. I can’t get those moments back now, but I aim to be present when having conversations with people now, to maintain eye contact and to truly listen, not just with my ears, and my mind, but also with my heart. If life is simply a series of moments, let’s make each moment matter. We jump at the chance of changing the world, but it takes far more courage to change ourselves. The power of human connection, compassion and conversation to help me heal during my grief has been a wake up call for me. Together, let’s do our best to preserve, cherish and honour the unique abilities that we as humans bring to humanity.
Thank You for listening to my story.
Thank you for sharing this with us. It’s kind of interesting that you say all of these things because it isn’t until recently that I’ve realized the very principles in your paragraphs. I typically enjoy being alone because I’m able to get my homework done, go to the gym, read research studies or anything else I may fancy. Though this has been what I’ve convinced my self of over the past 4 years of college… two people died in the past month and I witnessed a absolutely horrendous accident on my vacation to Aspen this past weekend. These three events have compounded upon one another, each teaching me the same lesson over and over again. Life truly is short and consciousness can be taken from you unexpectedly. I may not be able to spend time with the ones that I lost, but I can make time for those I have today.
Thank you for your message. It’s helping me feel out my own emotional journey and provides quite a bit of encouragement.
Regret for your loss, and totally agree you sharing in this post. emerging technologies have a vital role to play in our health, but it will never replace human. We should always remember who we are and what we need!
Beautiful and moving post. I am a psychotherapist and I tell my clients to allow themselves their grief and their sadness for as long as it’s there, to be good to themselves, and to never allow anyone to shame them for missing the one they love. Our compulsive need to “be positive” in the face of pain denies, negates, and dismisses it. We have become intolerant of sadness and vulnerability, the very things that make us human, and just look how angry our country has become.
You are right on so many points here. We seem to be losing the ability to relate to each other in a human and open manner. You will most likely never “get over” the loss of your sister, but you shouldn’t. If you did, you’d forget her. It’s the pain that keeps them with us (along with the joy they brought us). She’ll always be in your heart.
That’s how it should be. I wish you the best.
Thank for sharing. I am sorry for your loss, and your grief is palpable. I see medicine has a mix between curing and caring. It is far too easy to be lulled into the shiny, the tech, the cures. These are intellectually appealing, and often professionally rewarding. Caring has for far too long been relegated to an expectation that has slowly been pushed aside. I largely see this as getting what you pay for. Doing (things to patients) pays. Talking, or as you so eloquently put it-. onnection, compassion & conversation, not so much. We need to change the rules, rules we control, if there is any hope of changing how we care for each other.
Good comment, Alan. I wish we could form some sort of political union with, and for, patients and begin to work as their true agents. We and they need proper power in this enterprise ….which should not be controlled ultimately by anyone except the patients and their agents. [They couldn’t nail us for anti-trust if we only advocated for our principals, the patients]. Examples: Demanding from hospital Boards that charges and bills be easily understandable to patients and simpler prices known ex post ante. Demanding that outpatient departments have ample and reasonable parking and hours of operation. Demanding that providers including hospitals and plans show us that they are doing their best with oligopsonic purchasing to obtain drugs at the most reasonable rates available. We want to see, for example, that they are in purchasing cooperatives. Demanding that patients stop being hounded incessantly about advance directives. Demanding that patients be informed and aware that they have been assigned to an ACO, a club actually designed to scrimp and save money on that patient.
Maneesh, thank you for sharing your journey back from your personal loss. Perhaps, our ability as humans to think in the abstract and to imagine things that are larger than ourselves, is both, a blessing and a curse. Imaginary worlds have always proven to be places for experimentations in thought but not in emotion.
Thanks for reaching out
Stories like yours will help us deal with similar situations
There is nothing more powerful than first person testimony
I am so sorry for your loss. Thank you for this post.