The essential work of caring for hospice patients didn’t stop during the height of the COVID-19 pandemic. Now, two years later, “pandemic fatigue” still lingers for hospice workers, patients, and family caregivers.

Even at the height of the pandemic in 2020, employees at Heart to Heart Hospice continued to provide medical support, as well as emotional and spiritual care. They created ways to offer comfort and hope even when the world was reeling from uncertainty. Hospice staff adapted to the needed protocols and continued to offer extra levels of care. 

While nurse visits continued in the home and at facilities for most hospice patients, other support moved online in many cases with virtual social work, therapy, grief counseling, and spiritual care. The extra health care precautions (like masking and PPE gear), coupled with the emotional and mental strain, often resulted in fear of the unknown, inhibited communication, anxiety, loneliness, lack of resources, grief, guilt, and uncertainty. 

Pandemic Impacts on Hospice Care

Physical distancing took a toll on families and patients needing hospice support. Many family members weren’t able to say good-bye in person. Caregivers felt the extra stress of possible COVID-19 exposure and limited in-home support. And patients in residential facilities were completely cut off from outside visitors during periods of lockdowns, often with hospice workers the only outside visitors allowed. The compounding grief added up.

Hospice experts note these areas where patients and caregivers were impacted the most:

  • Masking, face shields, and other protocols greatly affect communication with dementia patients and those with hearing loss. 
  • The shortage of nursing home workers impacted the continuity and level of care in residential facilities. Many times, temporary employees were brought in for short contracts.
  • Isolation and loneliness for patients in facilities increased greatly. Complete lockdowns and visitor restrictions separated patients from their families for extended periods of time. Video or phone calls were not the same as connecting in person.
  • Caregivers felt even more fear about COVID-19 infections in addition to their loved one’s other health issues. 
  • The stress compounded for frontline health care and hospice workers, who help families process their grief, then rely on each other for support. They were distanced from each other during much of the pandemic.

One of the greatest burdens during the pandemic were patients who were unable to see family during lockdowns or those who died without loved ones by their side. Nursing homes and residential facilities got creative by allowing families to visit though windows or even allow family members inside near the end of life.

Jodylynn Wood, a Heart to Heart chaplain in Michigan, mostly supports patients in facilities. At times, she said she felt helpless, but could offer bedside prayers, songs, and a hand to hold for patients when families weren’t allowed in. “We could connect families to their loved ones, and they could rely on that,” said Wood.

“The toll of isolation was visible,” added Wood, noting patients declined faster after weeks of separation from families. “We’ve learned [through the pandemic] how important human interaction and touch is.”

5 Ways to Combat Caregiver Burnout

Heart to Heart Hospice workers offer these words of advice for families dealing with burnout and the lasting impacts of COVID-19.

  • Make healthy self-care routines a priority.

This is the number one piece of advice from hospice workers. Find ways to take breaks from caregiving, exercise (even if it’s short walks), eat well, and get plenty of rest. Remember to do something you enjoy each week and seek help from others.

  1. Share your feelings to spread out the burden. 

“Find someone to be honest with about your feelings, like a chaplain or social worker,” advises Chris White, a Heart to Heart chaplain in Michigan. Caregiving takes a toll on the body and spirit; make sure to manage the burden by seeking emotional support.

  • Limit outside influences like negative media or family members that add stress.
    Protect yourself from unnecessary anxiety, like constant news or difficult family when possible.
  • Release the burden of unrealistically high expectations of yourself.
    In addition to the unknowns of caregiving for a family member at the end of life, doing so in unprecedented times can add extra stress. Rely on the hospice resources available to you, do what you can, and release yourself from the rest.
  1. Decide what a “good death” looks like.
    Hospice care means providing a compassionate, dignified death for your terminally ill family member. Discuss what that looks like, if possible, even though it’s a difficult conversation. For example, ask your loved one if they want to be on a ventilator in a hospital or stay at home if they contract COVID. Heart to Heart Hospice helps guide you in these conversations so they can help provide the comfort care you desire.

Chaplain Wood said caregivers often need two things — a reminder that they’re doing the best they can and a spiritual/emotional check-up. “Simply asking ‘How’s your spirit?’ and saying ‘You’re doing a good job’ is critical in a person’s life,” she concluded.

If you need hospice services, inquire about Heart to Heart Hospice, serving areas of Michigan, Texas, and Indiana. Get the support you need, whether it’s in-home hospice or a residential facility. Starting hospice care sooner helps families navigate the uncertainty with needed support and care.