A new beginning for end of life
Entrepreneur Candice Smith is the founder & CEO of Caregiven, an app that empowers family caregivers to support their loved ones through all the practical and poignant tasks that comprise the end of life journey. But, as Hazel Tang discovers, it’s been a tough journey.
Caregiven was born out of a simple, hard-learned truth: there is nothing in life that prepares us for the life-threatening diagnosis of a loved one.
For founder Candice Smith, this came crashing home to her when her father was diagnosed with stage four oesophageal cancer. “When I first received the news, I was living overseas and my dad was here in the States,” says Smith softly. “Since I was faraway, I immediately felt powerless, I started Googling what to do; what questions to ask, and looking for digital solutions that could help guide me. But there were no mobile applications, no websites, just books and support groups. I couldn’t believe that in this era, there were no digital solutions. So, I moved back and embarked on caring for my data, without knowing exactly what to do.”
“It was frustrating; I felt isolated and overwhelmed all the time. I have a full-time job, two young children, and my dad is dying. So, I just thought, ‘Now that I have the experience of going through a life-changing moment with my dad, I’m going to take this personal pain into creating something new.’ And so Caregiven, a digital platform that focuses on demystifying the end-of-life process by delivering knowledge, structure and tools to caregivers, was born.”
Knowing that people rarely have time to read books and are often reluctant to talk to another human being about such an emotionally-charged topic, Smith instantly knew her solution needed to be a digital health platform. “We have our phones and devices with us 24/7, which makes my application a source of constant support.”
Smith was also keen to redefine the term “caregiver”. “Most of the time, when we think of caregivers, we think about medical professionals or someone who is trained,” she explains. “I didn’t identify myself as a caregiver until the hospice nurse said, ‘No, if you care and are giving that care to your loved one, you are a caregiver”. So, I thought our target users are not patients but those surrounding them; those who see themselves as caring for someone”. As such, Caregiven not only gathers relevant resources for caregivers, it is also a spoon-feed solution; walking people through one step at a time on what to prepare, do and expect.
It means users are provided with detailed instructions on how to complete the paperwork for an advance care plan — who should be involved and consulted during the process, and what kind of conversation should take place. Once it is completed, the platform will push the care plan out to everyone give permission to access it. The app takes a similar approach for other end-of-life legal documents, so caregivers will not have to go through a variety of channels for guidance and advice to complete a form.
Apart from the practical tasks, Caregiven also comes with a legacy building function; for users to capture the last moments of their loved ones via a digital diary. “A good end-of-life journey means people who are dying know their lives have meaning; or if required, they know they have been forgiven and that they will be seen and remembered as a person,” says Smith.
“We try to infuse all those aspects. But what comes as a surprise to most people is, the average caregiver journey is four years. Often, people are so afraid they may miss out on the opportunity to be with their dying loved ones or that it’s going to be too late for them to do something. They need to know that even if you are left with just six months or six weeks, one can still create a good chunk of meaningful time. It’s important to remember that we don’t stop living when we learn that we are dying. Let’s ensure that we utilize the same exceptional technology used to make our living full and rewarding, to enable us to make our dying better”.
“Let’s utilize the same exceptional technology used to make our living full and rewarding, to enable us to make our dying better”
To that end, Smith’s future plans include incorporating a chatbot to interact with caregivers in real time, helping to support them mentally and emotionally at any given moment.
“Our society doesn’t talk about death or dying until it’s forced upon us by circumstance,” says Smith. “So, when you are facing the role of giving care to a loved one who has just received a life-threatening diagnosis, it’s a heavy responsibility to take on. It’s common to find oneself adrift in a sea of emotions, trying to make sense of endless medical terms, and questioning ‘what now?’ It can quickly become overwhelming. It’s a journey that comes with very few resources to aid you in skillful navigation of this valuable period of time. And that’s where we come in.”
A graduate of the University of Oregon, Smith’s previous career saw her spend twenty years providing leadership and fundraising expertise to non-profit organizations, predominantly in education. So, without a background in healthcare or technology, her entrepreneurial journey hasn’t exactly been smooth.
“I have been told I am not fundable by a venture capitalist firm because I am too old as a woman to be culturable,” says Smith with a heavy sigh. “I am 46 years old and as a woman, never thought I would receive a comment like that! The truth is it shouldn’t matter what my background is, my connections, or my product. But the minute I walk into certain rooms, it seems I have already been categorized.”
“Even among female entrepreneurs, most people assume I am doing something related to beauty, childcare or fitness, when in fact, I am into death-tech. Nevertheless, it was empowering to know because I truly understand the game now. Just because things turned out well for me in the end, it doesn’t mean there can’t be innovation or change.”
Indeed, nothing appears to hinder Smith’s effort to seek help from like-minded professionals. She’s been working closely with other digital health experts and a user-experience design team, to ensure Caregiven achieves optimum efficiency and effectiveness.
“I have been told I am not fundable by a venture capitalist firm because I am too old as a woman to be culturable”
“I think there is still a ‘hunter and gatherer” mindset in technology,” says Smith. “When there is a problem, men tend to hunt it down and create codes to solve them independently. Whereas for women, we tend to gather our resources and talk through the solutions collaboratively before getting something out. Some may think this is just a methodology for approaching problem-solving, not realizing women may take some of men’s innovations to the next level.”
“I feel strongly that there are many very practical tech solutions out there and perhaps if we add a little feminine attributes, be it working together or listening out for one another, they can be turned into something that’s entirely different, maybe something more human or more digestible for the general population.”
“So, I feel now is the right moment for my product and myself. We are hungry for digital solutions that understand our needs and can curate unique experiences for us. And it’s women who seem to be best equipped to be able to deliver that. I’m here to tell you, being a female innovator has never been so fascinating.”
This article was published in AIM Magazine Vol 3, #1 — Women & AI issue, pages 50 to 52, debut March 2020. A digital copy is available for download here.