I'm a Social Worker and Former Family Caregiver, and I Want to Destigmatize Death Talk

I have a unique relationship with death.

As a young child, spending time playing in a cemetery made me realize that I wanted to work in end-of-life care. At 17, I shadowed at a funeral home. Shortly afterward, I went to college planning to become a mortician.

Then I took a class on grief and loss and fell in love with the subject. At that moment, I decided to pursue a master’s degree in social work with the goal of working in hospice.

While earning my degrees, I always felt compelled to do more.

While I was in school, my aunt died from complications of lung cancer. Four months later, my uncle was diagnosed with a rare kidney cancer that runs in my family.

Because he received so little support from his oncologist and medical team, I had to step in and help my uncle and our family navigate his treatment and death. I was the one who had to explain that, with stage 4 cancer, his condition was terminal.

I also served as my dad’s primary caregiver for three years.

My dad had lung disease, heart disease, anemia and hyponatremia. During those three years, I was his strongest advocate.

I had to stand up to physicians who were not looking out for his best interests and to pharmacies that wanted to charge him $400 for a single medication.

I was fortunate to have extensive training before becoming a caregiver. But the experience made me wonder: How do other caregivers know what to do for the people they love?

My life became consumed with caring for my father. I tried to balance his needs with raising my daughter and working a full-time job.

It was extraordinarily difficult. My personal life was nonexistent, and I lost about 40 pounds.

In November 2017, my dad was diagnosed with small cell carcinoma. He died on January 9 from a severe infection caused by the one chemotherapy treatment he received.

That treatment never should have been recommended. He was severely underweight, weak and living with several other serious medical conditions.

He was told he would receive a “less toxic chemo.” I had never heard of such a thing, but my dad had hope and wanted to proceed with the treatment.

I disagreed with his decision, but it was his to make.

He entered the hospital on Christmas Eve, 11 days after receiving chemotherapy, and remained there for five days.

Every day, I asked his care team whether he was dying. Every day, I was told, “No, he is getting better.”

My gut told me that wasn’t true.

He was experiencing terminal fevers and, at one point, became unresponsive. I called a friend who is a palliative care physician, and he confirmed my fear: my dad was dying.

I later learned that he had a septic infection, even though I had repeatedly been told that he did not.

After receiving his terminal diagnosis, I arranged hospice care, and my dad returned home the following day.

He lived for 11 more days and had a good death surrounded by family.

In the eight months since his death, I have grieved in a way I had never known. I have also returned to this work more inspired than ever to help others by drawing on both my professional and personal experiences.

After losing my uncle, I felt driven to do something in my community that would help people understand end-of-life care, talk about it and empower one another to have difficult conversations.

I learned about Death Café, a movement that was relatively new to the United States at the time. Its mission is to increase awareness of death while helping people make the most of their finite lives.

I decided to start one in my town.

I hosted my first Death Café in February 2013. Since then, I have held more than 30, including helping to establish the first Death Café in China.

I want to open the conversation about death and reduce the taboo surrounding it.

I believe that educating people about end-of-life decisions can improve quality of life for both individuals and their caregivers.

As a social worker, I also believe it is important to create social change. The Death Café movement supports those principles.

Caring for my dad, particularly during his time in the hospital, taught me a great deal about the family experience within healthcare.

Everyone should educate and empower themselves about end-of-life decisions.

Stand up for yourself and the people you love, especially when dealing with medical teams. You should always share in the decision-making process.

Talking about the care and treatment we want near the end of life is a gift we can give our families and ourselves.

We spend nine months preparing for the birth of a child, yet our society treats death as taboo.

Why?

There is a misconception that talking about death invites it closer. That is nonsense. Were it true, I would have died a long time ago.

We do not know when or where death awaits us, so we must be ready.

That does not make us morbid or superstitious. It makes us smart and thoughtful.

I appreciate that my dad did this for me.

In turn, I have done it for my daughter.