Communication During COVID-19

A few weeks ago, while COVID-19 was ramping up here in Florida, I had to go to the hospital. We literally did everything we could to avoid going to be the hospital, but that was literally the best place for me to be. I just needed more support than we could do at home or that urgent care could provide. And so, in a mask and gloves and with a significant amount of trepidation, my dad took me to the hospital. He had to drop me off at the entrance and just watch me walk into the building. I can't imagine how hard that was for him and I've read quite a few stories that begin with that scene, watching a loved one walk into a hospital by themselves.

Communicating my needs required a little more effort

It was a strangely surreal experience to be in a rather familiar place (I was just hospitalized in January 2020 for the same thing) and yet it felt completely different. Each person I spoke with also had a mask on, so that made communication difficult. I haven't lived in Miami that long, although Florida has been my home since high school, and many of the accents are still hard for me to decipher at times. I was, though, able to make my wishes and my needs known with a little more effort.

As I sat in a room in the emergency room waiting to be taken upstairs, I started to hear the medical professionals struggling to communicate with others. I asked my nurse about it when she returned and she shared with me that since no patient is allowed to bring a family member, that is putting a significant burden on the medical professionals. Not just for the purpose of communicating what hurt or what was needed, but also for decision making.

There were several patients near me who could no longer communicate clearly and/or were incapacitated and unable to make decisions. In that situation, things get missed. Medical professionals need to be able to focus on what they do best, but when patients are without their family and without instructions, what happens? The medical professionals then have a larger burden placed on them to decipher what the patient wants or would have wanted, without the usual checks and balances.

Communicating wishes at the end of life

As a lawyer, I hope that everyone had sat down to think about what they want to happen at the end of life. For those of us who are terminal, it becomes even more important. If we don't think about what we want and communicate those desires to the people who care about us, the likelihood of anyone following what we want drops to virtually nil. And in a situation where there is no time to look for instructions, the likelihood is even less.

I do have advanced directives and my hospital system has them on file. In this crazy time, I've heard that often decisions have to be made quickly, and sometimes that happens without the time to look into a patient's full file. So, I've invested in a Road iD. I purchased the one that clips onto my Apple Watch, which I wear most of the time. The Road iD has your information, contact information for your emergency contact, and then has a place to store some documents. It's also priced affordably. This could also be a place to put allergy info, advanced directives, and anything else that would communicate what is important to you.

Navigating MBC

Our medical system is far from perfect. I encounter the ways it is broken every single day and I often lose my mind a little when I have to navigate things that a patient shouldn't have to deal with. The stressors put on our medical system and everyone who accesses it will be felt for many many years to come. In my opinion, anything we patients can do to make things easier for a stressed system to take care of us, the better.

Do you have advanced directives?

How are you making sure that your wishes are followed?

Have you changed anything in light of the pandemic?

Editor’s note: This article was published on May 4, 2020. Further developments in what we know about COVID-19 are continuously emerging. For more information about COVID-19 and strategies for coping, visit Advanced Breast Cancer and COVID-19.