HCD in Action: Hospice Care Volunteer

My Journey into Hospice Care
for Empathy Building 

Chelsea Brigg | Reading time: about 4 min

WE MUST FIRST BUILD EMPATHY

The term Human-Centered Design perhaps misses the mark. While design is an element of what we do, it is not the focus. When peeling back the HCD processes and methods, our core duty is problem solving through the lens of an impacted group. The problems we work to resolve just happen to have a design element (usually). For example, here are a few problems I have worked to address:

• The public needs to receive health guidelines from the world’s leading medical researchers.
• US citizens need highly informed legislation that leverages up-to-date policy research.
• Caregivers of sick children need to quickly find and schedule with specialty care physicians.

While it might seem like a matter of semantics, the focus on problem solving over design does have merit. Approaching work from the perspective of acting to solve problems on someone’s behalf implies a very specific call to action: we must first deeply understand that group of people and how they are impacted by the problem. Or in simple terms, we must first build empathy.

Sometimes as Human-Centered *Problem Solvers*, we walk into a project with empathy in hand because we too have had the same problems as our audience. For me, this has rarely been the case. I have almost always worked to resolve problems for people living entirely different lives than myself. For this reason, it has always been paramount to begin new work by immersing myself in the realities of the problems at hand and understanding the people who are impacted. Sometimes this process takes me to unexpected places. The most memorable of which led me to spend my Sundays at a local hospice supporting terminally ill patients and their families.

I was hired as the Lead Strategist for the development of a new VITAS Healthcare website, one of the largest hospice organizations in the country. My excitement for the opportunity was somewhat overshadowed by the fact that I had personally never set foot in a hospice and did not understand the scope of the problem space. I typically would start a project like this by interviewing people who were experiencing an existing process. But in the case of hospice care, it felt inappropriate to reach out to patients and family members with such a request. I realized early on that if I wanted to truly understand the problems of these groups in a real way, I needed to immerse myself in a hospice.

A CALM PRESENCE

As I started interviewing dozens of internal VITAS stakeholders during the day to understand their perspective on the problem space, I also worked to become a certified hospice patient companion at night. I picked up a volunteer shift at a local hospice and spent a few hours each week going from room to room supporting patients and their families.

When patients did not have visitors, I would keep them company, read nature poems, watch old movies, or even act as a bridge in communicating their needs to the care staff. I spent most of my time in rooms without visitors that had dressers without flowers or cards. I would help patients’ families and visitors however I could, as they said their goodbyes. Even simple things like a calm presence or grabbing a soda for someone during such a time could be meaningful. Family members sometimes needed someone to talk to about the weight of the experience. I listened much more than I spoke, and here are three themes I heard most often:

• Patients’ families are often unaware of hospice benefits provided by American taxpayers through CMS. This leads them to wait too long before getting the support they need. I often heard people say, “we wish we knew about hospice sooner.”
• Families also wait to initiate care because of misconceptions about hospice and palliative care. A key misconception is that hospice happens at a hospice. Many hospice patients simply receive care in the privacy and comfort of their home.
• Families often need just as much support as patients during and after their loved one’s hospice experience. For this reason, many hospice organizations offer free services to family members to support their spiritual and mental health.

As I sat with patients and families each week, it became clear how I could use the VITAS project to not just “design” a new website, but to alleviate problems with the hospice experience. I understood how we could use the site navigation and homepage to address some of these themes. And how integrated marketing capabilities could help with awareness and misconceptions. I had built a level of empathy that made me a better problem solver and advocate for hospice patients and their families.

Ultimately there are some problems that we cannot solve but understanding the scope of what we can control through our work allows us to serve others in a more meaningful way.