Nobody Should Be Alone When They Die

Matt Richtel: Hi, I’m Matt Richtel, and today I have the great privilege of interviewing Dr. Sonali Wilborn.

We’re going to talk about her remarkable effort in New Orleans to make sure patients with COVID-19 didn’t, and don’t, die alone.

Sonali, before we dive into what you and your team accomplished, why don’t you set the stage for us by telling us about one particular patient and his family, and how their lives were touched by your program?

Sonali Wilborn: One story I would love to share is that of Willie, a gentleman in his mid-60s who was diagnosed with COVID-19.

He lived with his sister and also had two sons. One son, along with Willie’s sister, was his primary caregiver. Unfortunately, he had been estranged from his other son for 15 years.

When Willie was diagnosed with COVID-19, he was hospitalized and had a very rocky course. After several days, it became clear that he wasn’t likely to improve.

His sons received the news that their father was likely to die. But at that time, nobody was being allowed into the hospital to visit patients.

It just so happened that we were getting ready to open our COVID-19 inpatient hospice unit. We were able to bring Willie there, and because we had approval to allow family members to come to the bedside in full PPE, we were able to bring in both of his sons, including the son he had been estranged from for 15 years.

Matt: That’s a beautiful and timely story. I think it points to why hospice and palliative care are so important for patients and their families. They speak to the need for intimacy, connection, and closure.

But it’s also a particularly incredible story because of when it happened. Can you tell us a little about New Orleans at the beginning of the pandemic?

Sonali: I think the best place to start is March 30, when we were beginning to see a rising number of cases in New Orleans. It was sort of following in the footsteps of New York City.

At that time, the governor was concerned that we would run out of acute care beds during the first week of April.

New Orleans happens to be a big market for us at Heart of Hospice. As a leadership team, we were discussing the impact of the pandemic and how we were going to keep our patients and families safe.

One of the ideas that came out of that conversation was something I wondered aloud: Would it be possible to open a dedicated COVID-19 inpatient hospice unit?

It would care for COVID-positive patients who otherwise would have died in a hospital without their loved ones at the bedside and without the benefit of true hospice care.

At the time, it was a wild idea.

Matt: What made it such a wild idea?

Sonali: We had the idea on March 30. Around April 2 or 3, we decided we were going to pursue it aggressively.

Within eight days, we identified the space, secured the license, completed the site visits, which happened virtually, and were ready to accept our first patient.

That first patient was Willie, who came to us on April 15.

Matt: It was just an incredible effort. I can see this means a lot to you.

You said you were there to meet the first patients in New Orleans. Can you elaborate on that?

Sonali: Interestingly enough, I was the first physician to see and admit Willie to the inpatient unit.

He passed away seven days after I saw him. He was comfortable and surrounded by family when he died.

That was a big difference from what would have happened if we hadn’t been able to open the unit.

The most important thing was that the son he had been estranged from for 15 years had the opportunity to spend time with him and say goodbye while Willie was with us.

Matt: You’ve come back several times to the moment when Willie and his son reconciled.

Why is that so significant to the larger story of what was, or wasn’t, happening during COVID when it came to patients and the ends of their lives?

Sonali: Toward the end of March, nursing homes began closing their doors to people coming in from the outside.

What we have now begun to realize is that many patients living in nursing homes and assisted living facilities spent their days waiting for their loved ones to walk through the door and spend even a few minutes with them. That was the highlight of their day.

And suddenly, it was no longer happening.

They were confined to their rooms. They were getting weaker because they couldn’t get out and walk around their facilities.

It was deeply affecting their psychological well-being.

Matt: Based on how quickly all of this came together, your ability to secure enough PPE, and the other logistics involved, it sounds like you learned a lot. Can you tell us more about that?

Sonali: We cared for 89 COVID-positive patients in the inpatient unit. Many are no longer with us, but a few did have the opportunity to return home to their loved ones.

Across the state of Louisiana, we cared for 387 COVID-positive patients. As an organization, we touched about seven percent of all COVID-19 deaths in the state.

I’m incredibly proud of our team.

During COVID-19, we learned the importance of identifying what was needed to keep our patients and families safe.

We were aggressive about pursuing PPE. At a time when other healthcare organizations were really struggling to find it, we were well stocked. We felt confident that we could protect our staff, our patients, and their families.

For patients who were COVID-positive, we were also able to provide PPE to their loved ones.

We did an incredible job of sourcing PPE. We were also nimble enough to pivot and recognize the value of telehealth.

As soon as we realized that, in many cases, we wouldn’t be able to see patients in person because family members were concerned about allowing healthcare providers into their homes, we immediately deployed telehealth.

We began reaching out to patients and families that way.

Matt: Dr. Wilborn, you’re a palliative care physician. I believe that means you’re trained to consider a person’s quality of life, as they define it, as the gold standard for how you design their care.

I guess my question is: How do you know their wishes?

Sonali: Matt, that’s a great question.

If there’s one thing I would ask every family member, and really everyone, to do, it’s to create an advance care plan.

I think it’s really important to begin these discussions even when we feel like we’re still quite far from the end of life.

We need to have open conversations with our families. Putting together an advance care plan helps define what we want the end of our life to look like.

What’s also important is having really honest discussions.

Ask your physicians what options are available. Ask them to talk with you about choices beyond simply treating, retreating, and continuing treatment.

Look for ways to preserve quality of life.

Many times, focusing on quality gives you meaningful, important time. It can even increase the quantity of time you have, simply because you’re not going back and forth to the hospital.

Matt: One more question. When you think about that incredible period of taking this idea and turning it into a reality, how would you describe your emotions?

Sonali: There are several.

One is that I’m deeply grateful to work with a team that didn’t say, “This is Dr. Wilborn’s crazy idea,” and shut it down. I’m just so grateful for that.

I’m incredibly proud of the team I work with. I’m grateful that we were able to care for these patients.

And it brings me a great sense of personal and professional satisfaction to know that we were able to give patients and families some closure.

There are just a ton of emotions, Matt. I wish I could find the right words to describe them.

Matt: Thank you, Dr. Wilborn. It’s been a privilege to speak with you.

Sonali: Thank you, Matt.