How to Talk About Death and Dying During a Pandemic

Dr. Jessica Zitter specializes in critical and palliative care medicine and practices at Highland Hospital in Oakland, where she helps people with serious illness talk about how they want to live, all the way to the end.

Zitter says those are conversations we all should be having with our loved ones — even if we’re healthy and young. She is the author of Extreme Measures: Finding a Better Path to the End of Life, and her work has been featured in the documentary "Extremis" on Netflix, as well as the forthcoming film  "Caregiver: A Love Story."

Here are three stories about her patients, followed by some concrete tools you can use for planning and talking about the end of your life with loved ones.

Michael Thomas: 'Enjoying Every Moment'

Michael Thomas is 64 and has COPD, a lung disease that makes it hard to breathe. He has already been in and out of the hospital several times this year and is particularly vulnerable if he were to get sick with COVID-19.

When Zitter talked with him over Zoom this spring, she asked him what he wanted most. His answer? To be with his children and grandchildren in Ohio. But he also said he didn't feel a sense of urgency to visit them, because he believed he had plenty of time left.

“You are a more confident person than I am about myself!” Zitter told him. “I want to be totally frank with you, because I think you deserve that. I’m concerned you may not have as much time to live as you think you do. If someone told me, 'Michael is going to die within the next six months,' I would  not be surprised.”

Zitter said she has to steel herself to deliver this kind of news. But she believes her patients deserve to know the truth.

“I know you have some serious goals, and they include being with family," she told Thomas. "I would hate for you to miss that opportunity.”

Thomas has since moved to Ohio to be close to his family — a decision sparked by his conversation with Zitter and Highland Hospital's chaplain, Pastor Betty Clark.

"I didn't want to come home. I didn't want my family to see me in the condition that I'm in," Thomas told Zitter over zoom after his move to Ohio. "That's why I was hesitant to come. But then I know they love me so much. And here I am today, enjoying every moment."

"It just shows that if we can just bring ourselves to just face our mortality and plan for it, we can get what Michael got," Zitter said. "We can get this precious time with the people that he loved the most or whatever it is that's most important to you."

Evelyn Jarillo: 'It Makes You Think About Others'

Evelyn Jarillo is a grocery store worker in Los Angeles who got sick with COVID-19 in March. She recovered, but her husband, who has diabetes, also tested positive and is still suffering from health complications. She's also worried about her 22-year-old son.

"When you're sick and you're feeling the way you feel, it makes you think about others," Jarillo told Zitter when they spoke by Zoom recently. "It made you think about what happens if my son gets sick, what happens if he doesn't make it? No mother will be able to deal with [talking to] their kids about, ‘Son, if you die tomorrow, what do you want me to do?’ "

"Wait, let me make sure I understand," Zitter said. "Are you saying you can't ask your son, 'What you want me to do if you got COVID and you were in the hospital on a ventilator?'  You don't feel like you could talk to him about that?"

"I can't," Jarillo told her.

"Evelyn saw something that most of us don't get a chance to see," said Zitter. "She saw the potential for death."

Like many of us, when Jarillo thought about members of her family dying, she faced a mental block, Zitter said. It seemed easier for Jarillo to share her thoughts about flower arrangements for her own funeral than to think about tough topics like a do-not-resuscitate order or discussing it with her children.

Zitter had a similar conversation with her own son on his 18th birthday by playing a game called Go Wish. The game helps families talk about their preferences around death and the important things they want to hold on to throughout the course of their life.

"Like Evelyn, the last thing I want to do is think about my children dying," said Zitter. "It's just grim. It's horrifying. It feels in some ways like not what a mother does, right? A mother is supposed to focus on the positives, the weddings. We're not supposed to focus on the deathbed moments of a child. But asking open-ended questions is something you can and should do with your family. Just leaving space for more."

Zitter has conducted workshops on death and dying with teenagers. Just like sex education, she says, there should be a place for death education in high schools.

Andrew Rich: 'This Is Where I Want to Die'

Andrew Rich traveled to Sonoma early in the pandemic to celebrate his dad's 92nd birthday. During the visit, his father got sick. They didn’t realize it was COVID-19, and when his father had great difficulty breathing, the family decided to bring him to an emergency room. He spent two weeks on a ventilator and then died alone in the hospital, because COVID-19 rules meant no one could visit him.

Rich said that was not what his dad had planned when he imagined his death.

"If we could rewind the clock two weeks to that Sunday morning when he collapsed, if we could have put him back in bed and said, 'Dad, there’s the high likelihood that you have COVID and you're 92, what do you want to do?' He absolutely would have said, 'Leave me here. This is where I want to be. I want to be in this bedroom looking out in the valley. And if I die, this is where I want to die,' " Rich said.

"The best-laid plans can get completely upended in the face of fear and illness and symptoms and your family not being there with you," said Zitter, who recommends that families talk proactively about their wishes. "These conversations have to happen early and frequently. We have to get over the fear of talking about it and make it part of our family's conversations around the dinner table."

Zitter said that she is "very much committed" to critical care medicine and said that it is "in some ways miraculous." But Zitter says the medicine that keeps us alive should not distract us from the truth of our mortality.

"We've watched the rise of the hospital and the intensive care unit to the point that we've become enamored of the many interventions and treatments that we consider to be the offerings of our modern medical system," she said. "We've really lost the discriminating power and allowed ourselves to get completely distracted from making the preparations we need to face death, from thinking about our deaths and how we want to live, right to the end."

"This is really what palliative care is all about. It's about how people want to live their lives," Zitter said. "That informs how people want to die. But it really starts with how they want to live."

Resources

Here are things you can do to prepare, no matter your age or health.

• Play “Go Wish” with your loved ones. The game helps people start talking about what is most important to them in terms of health and life.
• Have a conversation about death at the dinner table. The interactive website Death Over Dinner can help you plan your conversation.
• Write up an Advance Directive and give it to your doctors and your loved ones. This document should be reviewed whenever your medical condition changes or you learn new information about an illness or condition.
• People with advanced illness who are considered to be at risk for a life-threatening clinical event should talk to their doctor about completing a POLST form. A POLST form is a medical order that documents a person’s preferences for receiving or not receiving certain types of medical interventions (for example, chest compressions, a feeding tube or a breathing tube).
• If needed, execute a Durable Financial Power of Attorney, a simple way to arrange for someone to handle your finances, such a bills or insurance matters, if you are unable to do so yourself.
• Write your last will and testament and/or a revocable trust to clarify and determine how your assets are distributed after death.
• Consider what your preferences are for a memorial ceremony, and discuss it with your loved ones.