En español | The first two patients to die of COVID in Chatham County, Georgia, on March 24 and 29, were Arnold and Lorlee Tenenbaum, married for 60 years. They had visited their adult daughters in New York and attended a family reunion, then showed symptoms of the infection on their return to the Savannah area. Arnold subsequently died in the hospital, but Lorlee, 84, was referred to hospice and able to die in her apartment, with two of her daughters present.
"My mother stopped eating and drinking and started having breathing issues. We had a health care proxy directive signed, and we knew we weren't going to intubate her,” her daughter Margot Tenenbaum says. “We called Hospice Savannah and their director was an angel. She said, ‘No one will be turned away, but give me a little time to find some protective gear and send out a nurse,’ “ she says.
"Our hospice nurse came with disposable gear and really added to the humanity of our experience. She was available, relaxed. They were all warm and informative, even when we called with questions in the middle of the night."
New procedures, protocols to deal with COVID-19
After dealing with challenges earlier in the pandemic, many hospices across the country say they are now ready and waiting to help with more COVID-19 patients. They needed to find PPE for their staff, carefully institute infection-prevention guidelines, and find ways to screen staff and patients for infection or elevated temperatures. Hospice Savannah, for instance, recently opened a dedicated wing for patients who are COVID positive, or suspected to be, and who need inpatient hospice care outside of their homes. It has its own entrance and separate staff, taking up half of the 17-bed facility.
"The first few weeks around here were just bedlam — to suddenly have clinicians needing to take care of COVID patients,” says Lynne Sexten, president and CEO of Agrace Hospice and Palliative Care, based in Madison, Wisconsin.
"PPE was a big issue at first, but now things have settled in. We opened a hospice incident command center immediately and made a point of having our best and brightest involved,” Sexton says. “We also created a surge plan, but haven't had to use it."
Some hospices wonder: Where are the patients?
Some hospices, which provide specialized care at the end of patients’ lives, report that they are not being asked to play major roles in COVID response in their communities, even though they have experience in managing the symptoms of advanced lung ailments such as COPD (chronic obstructive pulmonary disease).
Samira Beckwith, president and CEO of Hope Healthcare, a large nonprofit hospice program in Fort Myers, Florida, says hospice has been sidelined during the pandemic. Beckwith's agency has cared for a handful of patients who were already enrolled in hospice care for a more typical diagnosis such as cancer, heart disease or Alzheimer's disease and came down with a COVID infection. Referral of patients whose terminal diagnosis is COVID has been rare, she says; hospice referrals overall are also down.
Part of the reason for that, Beckwith says, likely has to do with patients staying away from hospitals out of fear of COVID-19. Fewer patients in the hospital mean fewer referrals to hospice. What's more, nursing homes and assisted living facilities are reluctant to take new admissions, and patients aren't making as many visits to their doctors.
Another key factor is that patients and physicians don't think to ask for hospice as an alternative to hospitalization for COVID-19 patients. And some patients and their families — or the long-term care facilities where they reside — are reluctant to open their doors to the hospice team because of exposure fears.
"I just wonder, where are the people who should be coming to hospice with all the usual diagnoses, such as cancer?” Beckwith says.
A message about options for older patients
By contrast, J. Cameron Muir, a physician with Capitol Caring Health, a hospice and palliative care agency serving greater Washington, D.C., says his agency has cared for at least 60 COVID-positive hospice and palliative care patients at home, in the hospice's inpatient units or in the hospital.
Muir is also chief innovation officer for the National Partnership for Hospice Innovation, a coalition of 70 nonprofit, community-based hospice members. He says most NPHI member hospices are gearing up to respond to COVID needs in their communities. They are also committed to policies that allow family members to visit their loved ones in hospice-run facilities.
Muir says hospice doctors have also found ways to use telemedicine, while volunteers have “doubled down on making virtual visits.” But there are limits, he notes, to hospice services that aren't provided in person. “You can't do virtual bed baths or wound treatments or management of patient-controlled analgesia pumps,” he says.
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In addition to providing comfort and palliative care during the pandemic, Muir says hospice can play a role in delivering an important message about older patients’ unique end-of-life care — and their options — during a pandemic that hits older adults especially hard, and one with no cure or vaccine yet in sight. For instance, he says, questions need to be asked about elderly patients being put on ventilators without seriously considering whether that course of action is actually the best for them.
As he describes it, a trip to the hospital with serious COVID symptoms may well lead to the ICU and, as a patient's condition rapidly worsens, a swift decision to intubate. There isn't always time to ask the question: “'Do you want to be on the vent or not?'” he says. An alternative to that scenario, of course, can be staying at home with the symptom management support of a hospice team. “Our message, from a public health standpoint, is that the safest place for many frail elders to be at this time is in their own homes, whether they are COVID positive or negative,” he says. “The number one message we are still getting from our families: If only we'd known about your services sooner."
Hospice care developed as an alternative to dying in the hospital. While a majority of Americans say they would rather die at home, if possible, many still do not get that option. Particularly in the COVID-19 pandemic, experts say that choosing not to end up in a hospital, on a ventilator and barred from seeing loved ones, may require speaking up before the patient reaches a crisis, using tools such as advance directives or Physician Orders for Life-Sustaining Treatment — POLST — and sharing that preference with family members and doctors.
Beckwith says this has been her hospice's challenge since it was founded 41 years ago: “How do you get people to listen to the message that there is an alternative to dying in the hospital?"