The breath of hope is not soft or silent / It is a gale force wind / A hurricane

It was a clear case of medical language not being interpreted correctly. In the midst of the COVID pandemic, with no visitors at the bedside, communication is further challenged. Rather than speaking to families in a patient’s room, we are having complicated conversations over the phone, by FaceTime, or by Zoom. The patient’s family had no access to Zoom or FaceTime, so the meeting took place over the phone, which meant, without any physical cues or body language to go by, the chance for misunderstanding was even greater.

The Case

The patient, Emily, matriarch of her large family, had contracted COVID after her fourth cycle of chemo. Her aggressive cancer and aggressive chemo regimen, already devastating to her, were overwhelmed by a severe case of COVID. She was on the precipice of requiring intubation as her O2 requirements had steadily increased. She was not doing well. The call was to explain to the family what was going on with Emily as they faced a decision about continuing treatment or changing her to DNR.

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“Right now she is requiring 100% support,” the doctor said. A reference to Emily’s inability to get enough oxygen and her fragile condition.

But the family, innocently, sweetly, said, “Oh, thank you doctor for supporting her 100%.” A breath of hope for Emily.

100% O2 support is not like getting 100% on an exam. It is the opposite. But to Emily’s family, 100% sounded awesome. Take an already complex conversation, add to it medical language, and the stress of separation from their loved one, their anxiety over an unfamiliar and frightening diagnosis of COVID, and it is easy to end up with a misinterpretation of information.

The Discussion

The word support is an interesting one; it can be a noun or a verb. Noun: The trellis in my back yard has a metal support. Verb: I support a small independent coffee shop in my neighborhood by buying my latte there. As a verb, it refers to an active endeavor. One person provides the support, the active participant. The other is being supported, the recipient. This is a difference we need to understand and put into practice as we interact with patients and families and, in the time of COVID, with ourselves and our co-workers.

Another word/meaning distinction that can be made is between the descriptions of supportive and support group. We’ve all been there. The new and frightening place of feeling isolated when doing something for the first time. Yet that sense of separation can be shattered instantly if we find just one person who has been through the same thing. Immediate familiarity provides relief even if it does not provide answers. For example, when I was a new mom, I met another new mom walking her baby through the neighborhood, and we talked about how to get our babies to sleep through the night. Finally, someone who knew exactly what I was going through.

And of course, there is one we are familiar with, the cancer patient who connects to their fellow patient going through chemo treatment when they sit in adjacent infusion chairs. The bonds formed are based on a shared experience. People are most likely to connect with someone they believe understands from experience what they are going through. This is why support groups are effective and why people gravitate towards those who have shared a similar experience as having the best understanding of their struggles.

How do we make an authentic connection when we are not a member of the “cancer support group”? It is a tightrope walk, a fine line that we try not to cross. It is easy to say the wrong thing, such as, “I know how you feel.” Really? I had a patient look me in the eye once and say, “I don’t think you do.” I was left speechless. I was trying to connect but instead caused a disconnect.

There are times when in an effort to be supportive we may end up crossing the line. Our support should promote independence within the limitations the patient may be experiencing. If we over support — do so much that we take that away from patients — then our support (verb) can turn into the support (noun) that is a structure of dependence.

100% support. Supportive. Support group. Support. The more I type the word the less familiar it looks.

As we communicate with patients and families, and as we interact with each other, the words we choose can help delineate the kind of support we can extend. There are times, such as in the case of Emily, when 100% support is required. We contextualize her situation to her hopeful family with what that means. Other times we are supportive and the way we communicate that support is through education. We want patients to understand what we will do and what we want them to do. A collaboration. We can steer our patients toward support groups, explaining how their participation can help them be self-supporting. And there are times when we act as the noun support, where we hold them or their family up.

We can expand the way we look at supporting our patients and families by examining the way we support each other during the pandemic. Regardless of where we practice during the pandemic, nurses are impacted by COVID. Some have worked directly with infected patients, and it may feel that they have earned more support than those who have not. But nurses not involved in direct COVID care are also impacted.

The level of stress in caring for all patients whether in a hospital setting or a doctor’s office has been affected. Walking through the hospital there are changes: no visitors, no volunteers, and frequent codes called overhead. The presence of COVID cannot be ignored. How do we communicate support to each other? This is a time of challenge to all of us. How do we protect our practice when we are in the midst of a pandemic?

As we consider the communication challenges of how we support our patients, this is also a time where we must be mindful of the kind of support we need. The fatigue of doing our job during a pandemic has dulled our response to it, yet it lingers under the surface. Support may come in many guises. Debriefing, which can be as a group of co-workers or might be with a debrief team. Seeking out individual therapy. This is a time to stop and assess what kind of support do I need? If we find we are requiring 100% support because of the pandemic what does that mean to our practice? How do we communicate that information to our supervisors or co-workers? Can we ask ourselves to be a support to others? Will that help us? Can we create a support group?

I have encountered nurses who wave me away when I ask how they are managing in the time of COVID, not willing or able to talk. Others respond to the same question by storytelling, some with tears, some with anger. This is a time for nurses to support each other, actively as a supporter and/or as a recipient of support. This is a time for hope.

In the eye of a hurricane / The wind of hope / Breathes in