Palliative care amid COVID-19: ‘Be seen, heard and flexible’
Most discussions about the impact of COVID-19 on cancer care have focused on survival outcomes and whether it is possible to maintain active treatment.
However, the pandemic has created additional challenges for palliative care specialists and raised important questions about their evolving subspecialty.
“In typical circumstances, we care for patients with chronic, life-limiting illnesses and address the way these illnesses affect mind, body and spirit,” Ambereen K. Mehta, MD, MPH, assistant clinical professor of palliative medicine at University of California, Los Angeles, told Healio. “We continue to do that but now are also trying to address the additional layer of coronavirus and everything it brings with it.”
Mehta wrote an editorial, published in JAMA Oncology, about palliative care for patients with cancer during COVID-19. She spoke with Healio about the ways in which palliative care teams have adapted to the COVID-19 pandemic.
Question: What new challenges are palliative care providers facing during the pandemic?
Answer: We have a new group of patients. They may not have had chronic life-limiting illnesses before, but now they might be infected with coronavirus and face the possibility of not recovering from that.
In the inpatient setting, it is more challenging now to be able to function as a full interdisciplinary team. Previously, a physician and social worker might see a patient together, or a social worker and chaplain would do so. Now we are trying to separate our practitioners so we protect our teammates and patients from getting sick. The physician may go in person but the social worker will make a phone call. We may have one clinician who sees patients who tested positive for coronavirus and another who sees patients who do not have the virus. You need to have a sufficient number of clinicians to do that.
Q: How has the pandemic affected patients who receive palliative care but do not have COVID-19?
A: Patients who do not have the virus still experience the consequences because their loved ones can’t visit them. We had to find ways to provide interaction and care to these patients without it necessarily being face-to-face. We also try to maintain the unification of the palliative team. Our team will do a video chat or phone call with patients and their family members. The content we’re talking to families about is a little bit different, but it’s still within the realm of patient support, family support and care planning.
Q: How do you help family members who aren’t able to visit their loved ones?
A: This is very important, especially at the end of life. I previously served as medical director for an inpatient hospice unit, and some patients’ family members lived far away. The possibility of patients dying alone was real. We have been trained to counsel families who struggle with the guilt of not being at the bedside when their loved one took their last breath. However, this pandemic is different because it is being imposed from an outside source. It’s not part of the natural progression we would expect. Helping the patient and their family members prepare is really the last gift we can give, but patients who get coronavirus may die within a short time. We don’t necessarily have time to prepare families because changes happen so quickly.
Q: Your editorial mentioned creative ways palliative care can be provided. Can you provide some examples?
A: I’ve had a number of family members tell me they appreciate the additional phone calls they received about their loved ones. Of course, they get calls from the primary team, which provides updated medical information. We call to offer extra support. We’ve started to call to assess the schedule with families at the beginning of each week. We’ll use this as an opportunity to check in and ask them what is important to them.
We have enough team members that we can call at least once a day, if not a few times.
We also have iPads in patients’ rooms. If a patient is dying and cannot participate in video calls, we can set it up so the video is accessible with a password 24 hours a day. We can use it to check symptoms, so it has minimized the number of in-person nursing visits. It also allows family members to see the patient, which provides them with a great deal of reassurance.
Q: Your editorial highlights “hidden benefits” of telehealth. What are they?
A: For those receiving care in the outpatient setting, we can see patients in their own homes. One patient showed me photos of their grandchildren and great-grandchildren.
Telehealth allows patients to see caregivers who normally might not be able to get to a clinic visit.
Another huge advantage is providing access to care for patients who live in a “healthcare desert,” such as an isolated rural environment. It helps provide specialty care to patients who otherwise may not be able to receive it.
Q: What changes brought about by the pandemic may remain in place?
A: Telehealth is the most obvious. That will stay in some form and — because of the policies enacted soon after the pandemic started — many practitioners will be able to provide these services more regularly.
In addition, we restructured our team and are finding strength within that new structure in the hospital. For example, I’m finding that a phone call somehow removes some of the barriers a social worker or a chaplain might perceive when they are with a physician and a patient. The eye contact or body language might be physician-dominant when the multidisciplinary team is there. When we are on the phone, that’s gone. Many of my team members are speaking up much more. It is nice to see that balance shifting and I hope it continues.
Q: How are you and the members of your palliative care team coping with your emotions during the pandemic?
A: As palliative care clinicians, we regularly have a lot of intense conversations, and we have many emotions that we share with patients. An integral part of our field is self-care and providing support systems to ensure our mental health and that of our colleagues. During the pandemic, the emotional weight has been multiplied several times.
We have utilized our social workers and have had access to therapy sessions. In addition to our usual daily faculty meeting, we have dedicated time for anyone who wants to talk about cases or anything else on their mind.
Q: What can palliative care providers do to ensure their colleagues and the leadership at their institutions continue to recognize that palliative care is a necessity, not a luxury, during the pandemic and beyond?
A: The biggest thing we can do is be present. Even if it’s not in person, we need to talk to the administration about what the hospital needs, because there is always a way we can provide additional assistance. We need to be flexible, not only by opening that dialogue, but by finding advocates for palliative care within — or even outside — our departments. In New York, the initial response among palliative care physicians was to go to the ED and say, “We’re here to help; just let us know.” Being seen, being heard and being flexible are all important, as is finding those advocates within your institution. We want to remind them that we’ve always served a role and we will continue to serve that role by helping patients, their families and our community.
For more information:
Ambereen K. Mehta, MD, MPH, can be reached at University of California, Los Angeles, Palliative Care Program, 1328 16th St. Room 207, Santa Monica, CA 90404; email: firstname.lastname@example.org.