For the last two weeks of November, during Thursdays at lunch time, I sprinted up to Toronto General Hospital to visit my grandfather. Four weeks ago, we discovered he had stage four lung cancer. Two weeks ago, he passed away.
I spent considerable time in the hospital with my grandfather and our family during this time. Before this, I never really had much exposure to the worlds of healthcare, illness, palliative services, or the experience of death. But my time with my grandfather, paired with an emerging perspective on human-centred design research, was an eye opener to just how much opportunity for change is out there.
Despite not spending a lot of time in healthcare environments previously, I had read enough literature to know that hospitals leave a lot to be desired. Still, I was amazed at what I observed. In an institution with the very purpose of caring for people, it seemed they had overlooked all the things that might help do just that, short of managing the technology and equipment to keep people alive and let staff do their jobs.
I watched as my grandfather struggled to get comfortable in a cold, sterile hospital room, unable to reach anything he needed and never able to find the nurse call bell on the side of the bed. I watched as he stared at a chipped, dented, and cracked wall opposite his bed. And a buzzing fluorescent light in the once- white ceiling above him.
I watched my grandmother, married to my grandfather for over five decades, negotiate with the room’s furniture and equipment as she tried to make things better for him. I watched her awkwardly reach over and across the hospital serving tray as she tried to feed him, never quite figuring out how to sit, hold a spoon, reach his mouth, and maintain her composure at the same time.
I watched my mom and aunt wrestle with losing their father after a tough fight, while trying to support their mother. They took shifts sitting in the single chair in the corner of my grandfather’s shared hospital room, because standing for hours in the room was better than sitting in the open with no privacy in the corridor.
I watched hospital staff, in and out all day long, working within a set of constraints and parameters which are by no means easy, do an incredible job with what they had to make us all feel better. And I watched a junior nurse remove what appeared to be a plastic wrapping from an I.V. bag, only to have to fetch it from the garbage later when a senior nurse noticed it was missing and critical to the integrity of the pain killer mixture inside.
The Power of Observation
An avid photographer, I already have a tendency to document a lot of what I observe each day. I keep a pretty active log of interesting scenes and objects; buildings, interiors, people, products, and oddities. In the hospital environment, though, I was nearly overwhelmed. I took dozens of photos.
Why was I so observant in the hospital? How was it so clear that there were opportunities for change? For interventions? In answering these questions, I think I owe a lot of credit to my experiences over the last few months studying & practicing human factors and design research.
I recognize that a hospital is of course an incredibly complex operation. Every which way you look, there are examples of conflict between one set of stakeholder’s needs and another’s. I photographed examples each time I encountered one, but my grandmother trying to feed my grandfather was an observation that really hit me. The facility’s need for durable furniture was in direct conflict with my grandmother’s need to simply nurture my grandfather.There are countless more of these observations and I’ve shared a few of them here in photographs:
Photo 1: Grandma trying to care for grandpa amidst the equipment and furniture in his hospital room. Because the serving table and hospital bed are, for the most part, incompatible, there is only a small range of possibilities for how to position it. Neither of these are ideal for the patient, or their family – both who have needs within the hospital environment.
Photo 2: Grandpa trying to eat without spilling. Continuing from the previous photo, you can see how difficult it is for someone to eat from the serving tray, especially with liquids and messy foods. Beyond the personal frustration for the patient in trying to get food into their mouths, there are very real emotional consequences. For one, it becomes necessary to wear a bib, which soon gets covered in bits of food. For my grandfather, who was trying to maintain his composure in an already stressful situation, this meant giving up his dignity. When I walked in that day and found him like this, his eyes watered up. He knew that we could see him struggling. That pain point happened to surface through the inadequate design of furnishings and equipment.
Photo 3: What the patient sees. I stood behind my grandfather’s headboard to try and get an understanding of how things looked from where he lay. This wall is what he stared at for sixteen days in hospital. What could be a source of entertainment, stimulation, or hope is a sad representation which can’t possibly inspire wellbeing from the patient’s perspective.
Photo 4: Grandpa trying to sip some water. Basic tasks such as drinking water become almost impossible for the patient, despite the fact that he had the will and strength to do so. What should a drinking cup look like in a hospital context? Or, is this an indication of a problem somewhere else in the environment, such as the design of bed controls, which deserve greater attention?
Photo 5: Bracelets are a constant reminder of the presence of an ‘institution’, at the expense of feeling cared for. The unintended consequences of well-intended solutions have significant impact on patient and family experience. Seeing my grandfather with numerous bracelets on each day was difficult. I noticed he would fiddle with them while talking with me, a signal that he was perhaps unconsciously feeling the burden of ‘the system’ he found himself in.
Photo 6: Because there are no amenities for patients’ families, everyday objects and spaces are almost unconsciously adapted by family members as they seek small moments & feelings of comfort. There is no comfortable waiting area for family. After he passed away, our family gathered in the open hallway crying and hugging each other, all while other staff and patients passed by. I noticed afterwards that someone had rested a styrofoam cup on the handrail, which to me represented a need to find an adaptive use of an institutional building element for support in a time of need.
Photo 7: The nurse call device hangs on a cord and is plugged into the intercom system in the wall. Keeping it close by so that my grandfather could access it was something we constantly had to do. We tried tying it, sticking it, wedging it, hanging it. Anything to find it a permanent, reliable location so that my grandfather felt safe in an emergency. Several times, he woke up throughout the night and couldn’t find it. The nurses found him because he had to verbally call out for them.
A Quieter, More Curious Version of Myself
It’s not that I wouldn’t have noticed these things before my time practicing design research at OCAD. It’s simply that my understanding and ability to process the meaning behind these observations is forever changed. Was it frustrating to witness my grandfather spending the last days of his life in such an environment? Absolutely. But I also remember sitting back and thinking how privileged I was to feel this frustration the way I was – as an aspiring ‘designer’. To see opportunity, and, more importantly, to feel a sense of responsibility to see challenges not as personal frustration points, but as opportunities for change.
I didn’t always think this way. In the past, I might have ended at frustration. Or pointed out a seemingly obvious solution. But this sense of responsibility is something that I think has emerged from working through the wicked, complex project work of our early childhood learning challenge. It is a result of knowing that there is so much potential in taking the systems view, the human view, and the slow, complex, & hard approach to problem framing and problem solving. Specifically, I have noticed in myself:
Where I would feel frustration, I sense an opportunity to learn something. Where I would suggest a seemingly obvious solution, I wait and I listen. And where I would cut someone off to make my own point, I wait to find out what their points are because I know I can learn something about the situation.
I recognized a lot of these new traits as they were named in discussion during our final class of semester one: increasing tolerance, thriving amidst ambiguity, looking at things holistically, and finding new avenues to creativity. This is exactly what was happening in the hospital as I examined what was going on around me.
The Little Things
I don’t know if I’ll have a chance to work as a designer in a health care environment, although I hope I someday do (another thing I never would have thought a year ago!). What I do know is that the design thinker in me, now equipped with some skills, perspective, and knowledge, carries a sense of responsibility to observe things in a way that surfaces opportunities for change.
In the past, I might have looked at a challenge like that of a massive, complex, healthcare environment as daunting and impossible. Where would I start? Now, I have a better handle on where I might start. The answers are in the people who will experience the things we design. It just takes a little bit of empathy, and some fresh eyes to build the observational powers we need to find our ‘in’ for change.
Furthermore, the solutions we design don’t have to be huge., per se. Nor do they have to be system-level silver bullets. For it is in the details which people experience things. The little things – like being able to sip water, or feed someone you love – are the small touch points, which make or break an experience.The amazing thing is that these ‘little things’, whether designed with intent or not, are far from little in the eyes of the people who experience them. They are just the opposite. They can make the difference between dying with dignity or not. Or, they can make the difference between a wife being able to comfort her husband during their last days together or not.
And yet, the little things are so often overlooked. Insights and observations of the little things are rarely given a chance to surface. Stakeholders who are implementing solutions so often bring their own bias to their perspective of a situation, and only selectively see problem areas – to no fault of their own.
The challenge in design research, then, is getting past surface level observations of an issue in order to let these little things emerge. What signals exist in the problem ecosystem? Which ones do we pay attention to? Which little things are the most important to the people who need the most from them?
My friend Jason Severs, Executive Creative Director at frog, equates design research to ‘inducing a state of culture shock, great for increasing observational powers’. He referred to a design project he was leading for a banking client in Brazil and, upon spending time with customers, pointed out that it was his team’s naivety and fresh set of eyes on the culture which led to their breakthroughs. I distinctly remember him showing a photo he took of a bank employee’s socks; white, athletic socks worn with a suit in a private banking office. Why was this interesting? His white socks were a ‘little thing’ which signalled a lot in their state of culture shock – a sense of identity, unmet needs, and a desire of the banking officer to be seen as professional, but frugal in the eyes of the banking customer. Had it not been for that sense of culture shock, Jason argued, those little things would have never made their way onto the design team’s radar.
If there’s one thing I have taken away from our first term in SFI, it has been an increasing ability to induce a state of culture shock to identify these little things. This is a powerful lever in creative thinking. One that I am sure I will carry with me throughout my career, because my sense is that these observational powers are difficult to turn off.
I first recognized this in myself in the hospital. Perhaps my culture shock came from the emotions of dealing with an ill family member and watching other family members also cope with the situation. But I recognized an ability to make observations and then suspend judgement to first examine the ‘why’ before coming to a conclusion. My grandmother’s struggle to reach my grandfather across the bed, for example, is the direct result of a system which has catered to one party’s needs over the other. These are unintended consequences and are not the direct fault of one party or stakeholder. But they do represent opportunities for large change.
Opportunities where design thinking can negotiate complicated hierarchies to find a better way.
In between my grandfather dying and his funeral, I stumbled across an audio recording I took as my siblings and I interviewed my grandparents several years ago. As I played the recording, I discovered a part where we asked them to tell us the story of how they met. The story, as it goes, is that they were both at a dance in Calcutta, where they grew up, and my grandmother started singing. In the middle of them telling the story, my grandma begins to sing a few verses of that song:
A line a day when you’re far away,
It’s not solving the challenge of the little things that is the hard part. The hard part is getting to a point as an observer and designer where you can identify and prioritize them. But it is these little things which carry with them the opportunity to make huge impacts on the people who interact with the places, things, and experiences we design. Getting to the little things, although slow, complex, & hard is one of the most rewarding and fulfilling aspects of the design research process.
I left the hospital on November 28th knowing that I had lost my grandfather. But I also knew I had gained something that I will have forever – partly because of the very human experience of losing a family member and partly because of my incredible first semester at OCAD – a new ability to observe and appreciate the little things that come through empathy. And that means an infinite ability to see opportunity amidst the mundane, the broken, and the complex systems around us which are in dire need of change.
This post was inspired by Paul Bennett, Jason Severs, Jane Fulton-Suri, Helen Kerr, and many more who have contributed to my early thinking around design research and innovation. And, of course, Herbert Trevor Wilkinson.