MORE free ideas from a human-centered designer for hospitals.
(This is part 2 of a 3 part series of rants about the healthcare system. Read part 1 here. Part 3 is on it’s way.)
Know your fucking audience.
In the surgery waiting area in a BRAND NEW hospital, I could barely get a wheelchair through the door. I blame arrogant architects for this in addition to an arrogant healthcare system. DAMN they spent a lot of money and NO ONE made sure it was wheelchair accessible? That’s fucking idiotic. Every part of your medical facility should be wheelchair accessible (I can’t even believe I have to write that).
When I was about 7 months pregnant and had to attend new parent classes at a hospital (supposedly) known for being the BEST women’s hospital in the city. The foldable chairs were lined up so close together (in the very spacious room) that no pregnant woman could get their belly past the row in front of them. We all ended up sitting in the first row or on the ground. That same women’s hospital that claimed to have SO MUCH SUPPORT for breastfeeding had one lactation consultant on staff and couldn’t see me because she was too busy dealing with “emergency cases” (my nipples were bleeding after my son’s first latch but I guess that wasn’t an emergency). Hospitals need to divert more money from marketing nonsense and more towards ACTUAL patient experience. Prove it to me. Actions speak louder than words. And words get around eventually.
Humanize the medical case.
My husband had had a rough night in the hospital. He had been up all night with with a lot of pain. In the morning when I arrived he had finally fallen asleep and I sat quietly in the corner. Unfortunately, it was 9am and rounds had started. I overheard our case being read outside the door “Male, age 42, presented with diarrhea, large mass on the left lobe of the liver…” I felt a knot form in my stomach and my blood start to boil but couldn’t figure out why I was so angry. They kept talking about him and I finally got up, opened the door and stood outside so they would know I could hear them talking about him. They didn’t stop talking when they saw me emerge from the door. I stood there for a few seconds, hoping someone would realize how rude and disruptive they were being. Eventually I blurted out (possibly not my finest moment) “My husband is resting. We can hear everything you are saying and it makes us feel like he’s a piece of meat. Can’t you talk about his case down the hall so we can’t hear you? Can’t you see in the files that it’s been 3 weeks since this started and it’s still very emotionally raw for us? Maybe skip over this one today. Or ask us first.” To his credit, the doctor was very apologetic while the residents just stared at me like I was a crazy person (you try watching a loved one deal with a painful medical condition without going crazy!).
There were obvious indicators in the data that this was a unique and emotionally charged situation. The doctors also didn’t realize or care. I think that if some personal, and not just medical, details had been highlighted in the case (for example: that he was healthy before all this — he had just had a full physical with no problems 2 weeks prior, he has a 6 year old son, loves to bike, and works as an innovation consultant, and that he still didn’t have a diagnosis) maybe the doctors and residents would have seen us as people, not just a medical oddity to be discussed openly in the hallway.
Teaching hospitals need to consider the impact these VERY different objectives (teaching residents and caring for patients) have on one another. There may be situations where it makes sense to blend activities and others that require a clear separation between them. One way to blend the two activities would be to humanize the medical case. Adding personal details can remind the doctors that these are real people, create a bridge between doctor and patient and encourage the doctors to treat people like people. It would also help patients potentially learn more about the medical side of things if they were a part of the conversation. However other times there should also be a clear separation of activities: when teaching residents, talk about the medical cases (especially sensitive ones) BEFORE you walk to the hospital room. Don’t talk about “the case” in front of them like they aren’t there. Duh.
People without a diagnosis need more help.
There was a marked difference in our relationship with the hospital before and after my husband’s cancer diagnosis. We joked and called it “playing the C card”. All of a sudden people were making appointments for us, calling US instead of us calling THEM, being more flexible with scheduling, actually reading the medical records BEFORE seeing us…etc.
When we were without a diagnosis and didn’t know what was going on, we were shuffled back and forth between doctors. We never knew who to call when there was a medical or scheduling issue. It was a very scary time, since we knew it was bad, but not how bad. We didn’t know what it was, or what to expect next, including any future tests or procedures that would be needed. When you don’t have a diagnosis, you don’t know what to Google, what to say to friends/family, or how to prepare. We were floating and needed to be grounded somehow.
Instead, the collection of medical specalists made things worse. At one point we had seen 10 different doctors (not including those who were doing rounds in the hospital and just dropped in when they wanted to unannouced and without an introduction). Yes, the nice hospital app consolidated all the test results and appointments for us in one place, but we needed leadership and emotional support that the app couldn’t provide. Without a diagnosis, there should still be a primary doctor or other point person clearly designated to help people until reaching a diagnosis. Help them navigate multiple specalists, tests, appointments, etc by providing consistency instead of putting the burden on them to find their way through the healthcare system.
Layout the treatment plan with clear milestones
After my husband got his cancer diagnosis, he was planning on having surgery to remove his tumor that same week. He had been in so much pain from the fist-sized tumor on his liver that crowded and pushed on all his organs. The situation was unbearable for him and for me, having to watch him in so much pain without any way to help. His medley of pain medication was barely working. Naturally we were looking forward to the surgery to take much of that pain away. The evening before the surgery as we were getting ready for bed, we got a call from the surgeon. He had reviewed the biopsy results that had just come in from the previous day’s procedure, reccomended that we cancel the surgery and proceed with chemotherapy instead. He argued that chemotherapy would address all the sites where the cancer had settled (vs. just the liver tumor location). It made sense intellectually but I burst into tears and felt devestated.
The next day we met with the shitty oncologist (more on this d-bag when I write part3 of this series) who didn’t give much information other than what chemo drugs would be used and how many rounds of chemo there would be.
It took me a few days to realize that I didn’t know what to look forward to anymore. There were no clear milestones. Yes, there was the end of his chemo treatments but that would be in 6 months or so. I knew that there would be blood tests taken before and after each round of chemo. These tests would be looked at for indicators of progress. As he started chemo and we watched the lab numbers, I realized that there was no definitive sense of if the cancer was growing, shrinking, or staying the same. Yes, they would look for indicators of cell death, but those could be other cells, not necessarily the cancer cells. Now, I’m certainly no oncologist, and I barely passed biology in high school, but I’m no dummy. I understand what it means to take a sample (not all samples are representative) and that these blood labs are relative indicators. The only definitive way to get a current status of the cancer is imaging and tracking tumor measurements. I also happen to be a more visual person, so the imaging results are more understandable to me. Unfortunately, I didn’t realize that my husband and I needed these images to understand his cancer until his second round of chemo, where I asked his nurses to schedule his next PET scan at regular intervals so we could assess progress. Now, this wasn’t entirely up to me. The insurance company had to approve each scan and wouldn’t allow us to have them frequently (their definition, based on making money, not someone’s actual need) but knowing when the next one was, helped us feel more grounded.
I can’t help but compare my experience working in the design field to that of healthcare. Design is about creating the future, and to create the future you don’t know where you are going to end up. Yet if you can’t figure out a way to create a project plan for your design project, there would be no design industry. No client is going to pay a bunch of designers to hole up in a room for a few months until the final reveal. Designers are forced to estimate the unknown. I can’t imagine walking into a client pitch without a clear proposal of what we are going to do, how we are going to do it, and what the crtieria for success is.
So how do designers do this? Design projects have milestones out of activities or project deliverables. You can’t move to the next milestone until this one is complete. The next milestones can change based on the previous one, but they always need to be there. Milestones make the ambigiuous tangible and nudge the project forward, encourages decision making, and helps focus effort and attention. Without milestones, designers are lost and clients get angry.
Healthcare is really no different. Medical treatment is also concerned with the future, an ideally disease-free future. Like design, there are no guarantees and the situation is constantly changing. Just like designers and clients, patients need milestones both clinically and emotionally. As I’ve learned, blood tests and chemo treatments might be clinical milestones, but they don’t work as emotional milestones. Imaging helped emotionally because we could really understand and see the status of the cancer. When laying out a treatment plan, emotional and clinical milestones should be planned out and clearly communicated (I personally like a visual timeline or a checklist). Losing hope makes any clinical treatment less effective so it’s to your benefit to understand and include emotional milestones.
Service blueprints and catchy acroynms aren’t solutions.
A number of my service designer friends & collegues reached out to me after my last post and said things like “Well, I am working for a hospital now and we have a service blueprint that says that doctors needs to introduce themselves to patients.” or “My healthcare facility has an acroynm I.C.E. Introduce, Care, Extend” or whatever. Guess what? Service blueprints and acronyms don’t solve problems. Ask yourself: why aren’t the doctors introducing themselves? It’s not because they haven’t memorized the right acronym or read the latest service blueprint. Are they jerks? Are they overworked and see to many patients in one day? Have they lost their ability to see patients as people? Are they more focused on teaching than caring? Something else? Those are the questions to answer to identify the real problem to solve. Be curious, be critical and spend time identifying the actual problem in order to solve the problem well.