Shilpee Sinha, MD, was at a patient’s bedside at IU Health Methodist Hospital. The patient was very ill, and because of his underlying health problems, his prognosis wasn’t good. It was time for Dr. Sinha to initiate a difficult conversation about his goals of care and, possibly, help him come to terms with dying.
For a palliative care specialist like Dr. Sinha, this scenario is very familiar. But because her patient was ill with COVID-19, the pandemic disease caused by the virus SARS-CoV-2, several aspects of this encounter were visibly and starkly different from the norm. She was rushed, and she spoke with him through a face shield and mask. He was also painfully alone, with no family at his side.
“It was terrible to see the fear in his eyes when I told him that if he became sick enough to require a ventilator, he wasn’t likely to survive,” says Dr. Sinha, who is service line leader for Palliative Care Services at IU Health and an assistant professor of clinical medicine at Indiana University School of Medicine.
Palliative care, which Dr. Sinha defines simply as “care for people with serious illnesses,” relies on complex communication between providers, patients and their families. It normally involves quite a bit of time, and quite a bit of talking. But with this patient, both Dr. Sinha’s time and her ability to communicate were compromised.
The patient, who eventually stabilized and recovered, was the first of many COVID patients Dr. Sinha has cared for since the pandemic began surging in Central Indiana in late March. The disease—highly contagious, and often severe—has dramatically impacted the way palliative care specialists interact with patients and their families. But despite the difficulties, Dr. Sinha and her colleagues are finding ways to ensure that gravely ill COVID patients are well-cared for, heard, and understood.
Disrupted connections and atypical conversations
“It has been very unsettling to consider the impact of COVID on the physician-patient relationship,” says Lyle Fettig, MD.
During the pandemic, Dr. Fettig has been focused on providing palliative care consultation for COVID patients in the ICU at Eskenazi Hospital, and as an assistant professor of clinical medicine, he also directs the hospice and palliative medicine fellowship at IU School of Medicine.
He strictly adheres to the protective measures that lower his risk of exposure to the virus, such as wearing PPE, frequent handwashing, and minimizing contact with patients. However, those same vital measures can impede communication and connection.
“It is harder to have conversations under all that PPE. It’s a little less personal,” he says. “And it’s very difficult to talk through an N95 mask. It feels like I’ve got a muzzle on.”
It’s also strange to think twice about things like shaking a patient’s hand, sitting down next to them, or using therapeutic touch to soothe them, he says.
“Grasping their hand for comfort, or applying a cool washcloth to their face—those simple things can be very meaningful for patients.”
At times, COVID has impacted not just the way these difficult and complex conversations with patients are conducted, but the content and quality of the conversations themselves, says Dr. Sinha.
Normally, she says, it’s important to introduce palliative care correctly, to avoid unduly upsetting or alarming the patient. This helps the physician build the rapport necessary for the next part of the process, which involves exploring the patient’s value system, identifying their goals of care, and making sure their treatment aligns with those goals.
“The point of advance care planning is to initiate these conversations well before things progress to terminal, end-stage illness,” Dr. Sinha says. “It’s not meant to be just a one-time discussion at the end.”
But COVID patients can deteriorate rapidly, and Dr. Sinha sometimes feels an uncomfortable pressure to see them as quickly as possible before they lose the capacity to talk. Once placed on ventilators, they are unable to speak.
“We’re trained not to go to patients with an agenda. For example, we shouldn’t approach them with the goal of completing an advance care directive in the first conversation,” she says. Advance care directives are legal documents that codify the patient’s wishes for their end-of-life care.
But when her first patient wanted to talk with her about his family, something she usually would have enjoyed, she was anxious and rushed because she had other patients to see. The surge of patients who were hospitalized and severely ill with COVID had begun.
“I had to make my exit from the conversation quickly, and I felt very guilty about it—like I had gone in with my agenda, got what I wanted, and left.”
Fortunately, she says, the once-overwhelming number of new COVID patients at Methodist and other area hospitals has recently stabilized, and as the weeks have gone on, hospital staff have found a new balance in facilitating these complicated discussions with patients and their families—through technology.
Bridging the distance with technology
Dr. Fettig echoed Dr. Sinha’s relief that hospital staff and families have access to sophisticated telecommunication tools.
“I appreciate that this pandemic is happening in 2020, and not, say, 2007, when we didn’t have Zoom, Webex, or Google Duo.”
Palliative care teams at IU Health and Eskenazi are relying on these and other platforms to conserve PPE and protect team members from exposure.
Emily Dock, ACNP, a nurse practitioner who usually works in palliative care at University Hospital, was redeployed to support the palliative care team at IU Health West when COVID cases began surging. But Ms. Dock, who is pregnant, can’t risk exposure to the virus, so she’s seeing patients and families virtually.
“I do the same thing I normally do, but I do it from my desk at home,” she says.
Ms. Dock says that part of her role is to provide updates to patient families or just check in with them if there’s been no change in the patient’s condition.
“Building rapport with families by phone or video call can be uncomfortable,” Ms. Dock says. “I’ve never laid eyes on their loved one, and I’m not even in the same building. I don’t want to be dishonest with them.”
For the most part, she says, families are receptive to communicating this way. But sometimes a distraught family member will express frustration or anger.
“One person asked, ‘why am I listening to someone who’s not even there at the hospital?’” she says.
Across facilities, the difficult moments, isolation, and fear are softened by the occasional poignant technological reunion.
Dr. Fettig says that he recently had one COVID patient who was very ill in the ICU. His wife, who also had COVID, was in the ER.
“We were able to take one iPad to his room, and another iPad to her in the ER, and then get all their kids on the call, who lived in different cities,” he says. “It was really heartwarming to help make that connection.”
He hopes the inclusion of distant family members this way persists after the pandemic is over, he says.
“It’s not perfect, but we’ve worked pretty well to overcome the limitations that COVID has demanded,” says Dr. Fettig. “It still hurts; it still stings; it’s hard to see. But we’ve been adapting the best we can.”
