Vulnerable Voices: People with Illness and their Caregivers in a COVID-19 World

All across the country people are self-quarantining as part of a collective effort to slow down the spread of Coronavirus, in order to protect the most vulnerable individuals — people who are ill, elderly, immuno-compromised or managing a health condition.

Serving vulnerable individuals with supportive telephone/video based care is our work. In fact, for our clinical specialists, providing telephone-based advance care planning and support is a calling and a purpose.

We’d like to amplify  the voices of those we care for by sharing what we’re hearing across hundreds of outreach calls every day, since the COVID-19 crisis began.

The words and emotions expressed are important for us to keep front-of-mind and are also a powerful reminder of our collective vulnerability and experience of this pandemic. And yet, the resiliency of individuals and their caregivers shines through.

What are We Hearing From Those We Serve?

1. Pragmatic Worry

• People with serious illness are having trouble accessing doctors; some appointments are cancelled.
• There are concerns that home based resources may stop.
• There is concern that medications will go unfilled or there may be widespread shortages.
• There is worry that groceries will become difficult to access; and costs and wait times for delivery service are high.
• There is a palpable and rising fear of getting sick. People are both afraid of getting sick and infecting others. Coronavirus is a new worry on top of their underlying conditions.

2. The Isolating Impact of Social Distancing

• People with serious illness are missing their loves ones; this creates more worry.
• Concern for loved ones safety trumps concern for themselves at times.
• Uncertainty at how long restrictions on visitors will continue (for people in facilities).
• Even for those at home, most are self-restricting visitors.

3. Acceptance and Strength

• People with serious illness are also sharing incredible stories of resilience.
• People realize this pandemic is outside of everyone’s control.
• There is comfort in faith and many express that spiritual practices are connecting and supportive.
• There is almost no skepticism, denial, or uncertainty about how serious coronavirus is. Instead, people want to be prepared.
• There is a collective acknowledgement “We are all in this together.”

4. Caregivers are also suffering greatly

• Caregivers are expressing a great deal of suffering. The emotional toll of caregiving at this time is intense. Being responsible for someone who is ill, frail, or living in long term care is very hard.
• Caregivers are universally worried.
• Caregivers are worried about not being able to be with their loved ones; especially if they become positive with coronavirus and need hospitalization.
• Caregivers are very worried about infecting those they care for.
• Caregivers are exhausted, need respite, and do not see hope for that in the near future.
• Some caregivers are worried about policies of facilities that their loved ones are in; some have concerns about how care is being managed.
• Caregivers too are resilient and are finding new ways to connect when separated; using phone, FaceTime, videochat.
• Caregivers are worried their loved ones will not survive this pandemic and may die alone without family at their side. This is traumatizing.

This is our work. Alongside providing supportive advance care planning conversations, we are listening, providing emotional support, and connecting the most vulnerable individuals and those caring for them to appropriate telehealth resources and supports.

We will keep listening and sharing the voices and needs. Every conversation matters and may be the difference to transform fear and isolation into care, connection, and a greater sense of control.