new ways of doing business

Today marks the beginning of week #5 (in Lawrence, Kansas) of mandated social distancing and non-essential businesses being closed. I had to look back to see when we actually started this because the days are running into one another, and each individual one is a blur.

What we are doing at work continues to evolve as we figure out how we, as palliative care providers, fit into this pandemic. Infectious disease specialists direct antibiotic and antiviral therapies, ICU physicians manage the care of critically ill patients, and surgeons operate. Palliative care providers' niche is in communicating. Putting together the big picture for patients and their families about how they are doing. That is really hard with a virus that is so unpredictable. Deadly for some and milder for others.

What has been clear from the start is the need to have conversations with people before they get sick, or at the outset of their illness. When they are able to tell us how aggressive they want to be in terms of treatment, how much are they willing to go through, and when is it time to stop putting their bodies through things that are unlikely to be helpful? But it's hard to get across to patients and families that what we are seeing is an illness unlike those we have encountered before. Just when we think the corner has been turned, we have seen the bottom fall out. Most of our sickest patients are on dialysis in addition to being intubated, and requiring very high levels of oxygen on the ventilator. I have never seen so many patients require paralytics so they could be flipped over on their abdomens to see if that will help their lungs.

Not being able to visit is incredibly hard for families. Can you even imagine dropping your loved one off at the hospital and then having to rely on doctors and nurses for regular reports about how they are doing? Having to talk by phone and then not at all when the patient is unable because they are too critically ill.

What we are doing is trying very hard to be a connection between patients and families in this time of isolation. Making sure they are hearing the latest updates, reassuring them that those caring for their loved ones are being respectful, careful, tender, in the care they provide. Letting them know we hear and see how impossibly hard this is. Using virtual technology has been helpful in being able to show families what their loved one is looking like. It is only when we are not able to see a loved one, do we realize how much we rely on what we take in with our eyes to help us understand a situation. I never thought that being a ZOOM "operator" would be such an important part of my job, but it's a good example of how circumstances dictate new ways of doing business.

Finally today, in the event that you missed the One World at Home show on Saturday night - this was a highlight.