Elaine Fong is the Design Director for Blue Bottle Coffee in Oakland, California. Read our Q&A with Elaine about her design work.
I am not a healthcare professional. I am a brand designer who creates experiences by connecting with human emotion. But my mother’s death—and, more importantly, the choices she made about how to design her death—helped me discover how we as a society can reframe or even rebrand death from something scary and bleak to something honest, noble, and brave.
My mother, Christine, was first diagnosed with cancer in 2004. She endured a battery of radiation treatments that left her drained. Fortunately, her cancer went into remission, but she never forgot how the mental and physical side effects made her feel.
Overcoming the cancer was a source of pride for her. It was in keeping with her persistent and fearless nature. Born in China, she immigrated to the United States as an adult and brought with her a fierce work ethic and a drive to succeed. I believe that this, along with medical treatment and good fortune, allowed her to emerge from her first experience with cancer stronger in spirit.
A Preview of Death
My mother had gotten a preview into her death. She spent the next 12 years in remission thinking deeply about the type of death she wanted to have. My sisters and I would later learn that she spoke freely about her preferences with my father, and she told him that she didn’t want to do chemotherapy again.
Occasionally she would bring up the topic with the rest of us, but we weren’t ready to talk about it, mostly because she would bring it up at the strangest times. “We’re having a family barbecue on the 4th of July, Mom,” we’d say. “Do we have to talk about this now?”
One morning in January 2016, my mother found herself unable to sit up on her own. An emergency vehicle came to my parents’ home, put my mother on a gurney, and brought her to a nearby hospital in Seattle.
The doctors decided to open up her back and see what the problem was. Part of her vertebrae was so soft that they weren’t even bone anymore. She was diagnosed with Stage 4 bone cancer. We were devastated. None of us knew what to say. None of us, that is, except my mother.
Once we had collected ourselves, my mother made an announcement: she did not want any treatments, nor did she want surgery. She did not want to live life trapped to a bed; she wanted to exit the world knowing exactly who she was.
Choosing Death with Dignity
In Washington, where my mother and father lived, the state’s death with dignity law had been in effect since 2009. Like assisted-dying laws in six other jurisdictions, it empowers individuals to decide for themselves to move on when faced with a terminal illness—when science has confirmed the end is near.
My mother supported and voted for the Washington Death with Dignity Act in 2008. When she learned that death with dignity was an option for her, she declared her intent to use the law to hasten her death. It would allow her to die at home, in peace and comfort.
She would have the opportunity to celebrate life while she still had the physical strength and presence of mind to enjoy the dinner party with Southern-style food and music she was already planning.
Newly empowered by her decision, my mother asked her oncologist to be one of the two doctors from whom she needed a signature to obtain the medication she needed to hasten her death.
“This is my time,” I recall her saying. “This is what I want.”
Fighting for the Right to Die
But her oncologist said no. He was new to the state of Washington, and had never had a patient make a request under the state’s Death with Dignity Act. He also was trained to problem-solve diseases, not to understand and honor a patient’s wish to end her suffering not because she wanted to die but because she knew that she had a disease that would kill her slowly and painfully.
After 12 years of preparing for her end, my mother found herself fighting again for her right to die. True to form, she persisted. She never took no for an answer; she wasn’t about to start now.
At every appointment with her oncologist, she would make another request for him to fulfill her Death with Dignity request. Each time, he would say no, and she would go home disappointed, but not deterred. She was able to obtain a signature from another doctor; now, she just needed to use her sheer force of will to convince her oncologist.
Watching my mom deteriorate wasn’t easy; neither was caring for her. Many parts of the experience were far from beautiful, filled with the requisite tubes and fluorescent lights that accompany trips to the hospital. Eventually, we were able to secure hospice care for my mother.
Hospice at Home
Being able to care for her at home was such a blessing. At first, we had to get creative about making a comfortable space for her and encouraging her to do her required exercises.
When she was still strong enough to use a walker, we would create fun challenges for her. How many Beatles songs would it take for her to walk around the kitchen island 10 times? We wore ourselves out singing along to “Love Me Do” and “Let It Be.”
Eventually she was confined to a chest brace and a wheelchair because her bones could no longer support her. I remember sitting next to her and holding her hand. The texture of her skin was dry, its color ashen.
I asked her, “What does your cancer feel like?”
She said, “It feels like my bones are on fire. Everywhere under my skin is burning. Every time I move it gets worse.”
Her next visit to her oncologist was her last. When it became very clear that the cancer was growing, pushing through her spine into her sternum and rib cage, my mother implored her oncologist once again to prescribe her the death-hastening medication.
This time, there was no begging. He agreed to sign for the prescription. Now my mother had what she needed to have the death she wanted. At last, she could design her own death.
Death as a Design Challenge
It’s easy to think of design as being purely about aesthetics. But design can also be a tool for communication. Human-centered design is a combination of creativity and empathy.
My mother’s end-of-life planning was at its heart a design challenge. It required her to articulate her plans for her final days, and it required us to talk about it to make the decisions that would help her fulfill her wishes. Having that conversation allowed us to develop a shared language.
I told my mother, “I’m really proud of you. I think you’re brave. I also think you’re a designer like me. You’re creating the experience you want to have. You’re designing how you want to say goodbye.”
The night before her death, we hosted a dinner party. The event was true to her wishes and to her spirit. We had a beautiful feast, we played a mix of her favorite songs. She gave a toast. She was so happy.
The Final Day
On the morning of her final day, assisted care came to the house to help with the process of preparing the medication. From time to time, I stole glances at her to see how she was doing. Every time I looked her way, her eyes were bright, smiling even. She kept giving us a thumbs up because she wanted us to be brave.
By law, none of us could help her hold the cup that contained the medication; she had to self-administer it. The hospice care workers warned her that it could burn her throat and that she should take her time. That wasn’t my mother’s style. She pounded it back like a shot of whiskey. Then she looked at my dad, smiled, and closed her eyes. In 45 minutes, she was gone.
The experience we had was not common. Many people don’t get the chance to say goodbye the way we did. For many people, death can be a waiting game.
I can’t imagine what my mom’s experience would have been if she’d lived in a state where death with dignity wasn’t legal. How long and how painful might it have been?
Sharing My Mother’s Story
I had the opportunity to do a TEDx talk in San Francisco, and I decided to connect my work as a designer to my mother’s work to design her own death. My talk received a standing ovation. I say this not to boast, but to illustrate that death is a topic that touches all of us, and that people are eager to talk more about.
People came up to the lobby afterwards: cancer survivors, loved ones of people who had succumbed to terminal illness. A woman in her 60s told me, “I have the exact same cancer as your mother. My time is near. I’m going to go home and plan my death now.”
If you could design your own death, what would your experience be like? How would you want it to feel?
My mother wanted us to share her story with the world. She wanted to start a conversation about choice and control at the end of life.
A Choice and a Conversation
To me, death with dignity is both a choice and a conversation. It is a choice to be made by an individual for their own personal life’s needs and wishes. And it’s a conversation in which anyone can engage, to understand what it means to empower someone to make their own decisions at the end.
My hope is that both choice and conversation come from a place of respect, and not fear. People tend to be fearful of things they don’t understand, so I say let’s talk about it.
Let’s talk about death before it’s too late.