While most of us look forward to resetting our lives after lockdown, for those in hospice care, life after the pandemic is not guaranteed.
Lora Wooster, volunteer coordinator and social worker at Hospice of the South Shore in Rockland, Massachusetts, explains that due to COVID-19, people receiving hospice care are living out their final days away from family, friends and the comfort of their own homes.
Wooster recalls a patient enrolled in Hospice of the South Shore — a dying woman who lived alone in her home in Massachusetts. She lived near her sons, none of whom could visit during the global pandemic for her health and their own.
Recently, she became symptomatic for COVID-19 and went to the hospital. Although her tests came back negative, she was still relocated to a hospice house for further care during the lockdown.
Caregiving in isolation
Wooster notes that for most patients “as they get sicker, a family member will move in with them or if the family can afford it, they’ll bring in private paid caregivers.” But now, amid the pandemic, finding caregivers becomes difficult.
Hospice of the South Shore has experienced almost no volunteering, a high number of deaths, and an increased need for bereavement support.
Hospice care is meant to support those in the final stages of a terminal illness; the Hospice Foundation of America specifies that to qualify for hospice care a patient must receive a physician’s prognosis that they have six months or less to live.
Between 2009 to 2017, more than one million patients were enrolled in hospice care annually, according to Statista. Hospice providers like Hospice of the South Shore can provide care to patients at their own homes, in a nursing home, or in hospice houses.
Wooster says Hospice of the South Shore usually loses “500 to 700 people a year.” But during the pandemic, she says, “we have a lot of patients who are dying quite quickly because of COVID.”
Beyond the death rates, Wooster said that up to one third of patients with the care agency have unenrolled from their programme and chosen to no longer receive at-home care, in order to decrease foot traffic in their household.
After retiring, Marcia Bober and her husband both began volunteering in hospice care; the couple often bring their dog with them when visiting patients. Bober was volunteering with Hospice of the South Shore, but during the pandemic she has suspended her volunteer efforts, along with many of the other volunteers.
She said that before the pandemic, “when we have a volunteer meeting, everybody goes around the table and says something about their patient and you can see the love that they have for these people.”
Essential services during the pandemic
The U.S. government classifies hospice care as essential during this pandemic. According to the Hospice Foundation of America, one of the essential hospice workers is a chaplain. Chaplain support is a service offered to all patients, regardless of their religion.
Due to fears of the virus, Woosters says people are hesitant to receive visits from chaplains. Before the pandemic, she says, “maybe two-thirds to three-quarters of our patients would accept chaplain services. Now it’s much less.”
Drew Hanson is a pastor at the First Presbyterian Church Quincy in Massachusetts. While not a hospice chaplain himself, he says, “I think that Christian spirituality, and our faith, can provide a framing to make that time [of death] special, beautiful, and meaningful, but I’m sure that would be so much harder without someone being able to walk with you in that.”
Hanson recalled a woman from his congregation who passed away just before the pandemic. He organised a lunch with her husband, who had not only lost his wife, but, as Hanson notes, “his best friend.” Due to COVID-19, that lunch has had to be rescheduled until after the lockdown.
With a higher number of deaths, there is an increased strain on grief support. Wooster explains the aid families need following the death of their loved one is more often categorised now as “moderate rather than low,” and that this is “directly related to COVID.”
The hospice community extends beyond the patients to include their loved ones. While settling into life after lockdown, there is sure to be a lot of grief, mourning and postponed celebrations of life for those lost during the pandemic.