In some cases, frontline providers are scrambling to ascertain a critically ill patient’s wishes while donned with face masks and goggles that make communications difficult. Tight visitation policies also have proven problematic, necessitating the use of smartphones or other devices to connect patients with loved ones while they try to make critical care decisions.
In short, the pandemic has made what are always difficult conversations even more fraught, placing added stress on medical providers, patients, family members, and palliative care specialists.
This remains a thorny issue to navigate, particularly for providers who are not as accustomed to dealing with the end-of-life decision-making process. However, some hospitals have employed innovative approaches designed to ease the burdens on medical providers confronted with these end-of-life challenges while also accelerating palliative care expertise to where it is most needed.
While no perfect solutions have emerged, the pandemic has laid bare the importance of putting plans in place to surge critical palliative care resources.
The palliative care team at University Hospital in Newark, NJ, is comprised of three advanced practice nurses who typically handle palliative care consults. But when COVID-19 began to hit the state hard in early March, it was clear a surge in demand for these services was at hand.
That is when Jenna Marcus, MD, an assistant professor at Rutgers New Jersey Medical School, started formulating a plan. “I was initially deployed to the ICU [intensive care unit], but [with] my background as a gynecologic oncologist ... I quickly realized there was a need for these types of delicate conversations by people who have experience and training in talking about [end-of-life and critical care] issues,” explains Marcus, a gynecologic oncologist at Rutgers Cancer Institute of New Jersey.
Further, she saw the need for palliative care was coming from throughout the hospital, including from frontline providers in the emergency department (ED) trying to manage quickly deteriorating patients with COVID-19.
To meet this demand, Marcus proposed creating a palliative care mobile unit, essentially a team of clinicians with experience in conducting palliative care consults that could quickly travel to the bedside of any patient in need of such services.
“We wouldn’t have one static location that houses all the patients, but rather we would be available as a team to service the regular medical floors, the ICUs, and the ED patients who needed urgent conversations about goals of care and, in some patients, end-of-life decision-making,” Marcus shares. “Sometimes, [this would involve] documenting a healthcare proxy in advance directives ... but any of those services we would be able to provide so the medical team could focus on the medical care and also the extreme volume of patients coming in.”
Hospital administrators approved the plan, and the mobile unit was put into practice by the second week of April. For the next month, Marcus and three other team members, all with backgrounds in palliative care from their cancer training, were almost completely dedicated to providing palliative care services to help alleviate the large volume of patients requiring these services. The team operated 24 hours a day, six days a week.
Marcus notes the hospital is fortunate palliative care-trained clinicians are on staff. “They were a huge asset to help support our team,” she says, noting these physicians pitched in when they were not on their usual ED shifts. However, high demand is not the only challenge that has emerged. Time also has been an issue — and it is not a resource emergency providers usually have in ample supply. For instance, under normal circumstances, palliative care discussions will occur early in the disease process and in a setting where patients and providers have some relationship, Marcus notes.
“There is some early addressing of the prognosis with the patient, followed by talking about goals of care,” she explains. “Having to make some of these really complicated decisions quickly is a challenge, especially in a setting like the ED, where [clinicians] are looking to stabilize patients and either [admit] them to the hospital or send them home. Paying attention to all these types of [palliative care] details can be a little tricky when that is not necessarily the purpose of the ED.”
In any care setting, such discussions can feel rushed and callous when not handled appropriately. Consequently, the services provided through the mobile unit were made widely available throughout the hospital.
“We were able to receive immediate, HIPAA [Health Insurance Portability and Accountability Act]-compliant text messages from providers,” Marcus says. “We made a schedule that was published so providers could simply look at who was on the schedule, send us a message, and we would be there.” Further, Marcus notes the mobile team members have existing relationships with many hospital providers, some of whom would simply call them to request they come see a patient.
Over the course of April and early May, there were opportunities for learning regarding when clinicians should be thinking about bringing in palliative care.
“Initially, when we started to really surge and were very clinically busy, a lot of the time the calls [for a palliative care consult] happened in cases where patients were critically ill. They either came in already intubated or were so sick they couldn’t make decisions for themselves,” Marcus observes.
In those cases, the mobile team members would need to track down a healthcare proxy, if the patient had one, or the next of kin to help make those sorts of decisions.
“As we continued to work together and go along ... [clinicians] would see someone come in who looked as if there was going to be a potentially severe, prolonged course of disease,” Marcus shares. “They would recognize to call us early so that we could start to establish some of these conversations with patients and families.”
Frequently, for cases in which a patient with COVID-19 was awake, alert, and could make his or her own decisions, a mobile team member would visit with the patient in person, wearing all the appropriate personal protective equipment (PPE), Marcus explains. However, if a patient could not make his or her own decisions, the palliative care consultation generally would commence over the phone with a healthcare proxy.
“Usually, this would begin with some of the basics of me introducing myself to the family as someone who is going to be a palliative support person to them,” Marcus reports. “Then, I would also look into helping the family schedule a video visit.”
In fact, the meaning behind “mobile” is twofold. It refers to the mobile team members who would physically travel to wherever they were needed. Also, it refers to the video chat services the team members would use to facilitate communications between patients and family members. This has been a critical element, considering hospital visitation restrictions.
“We [enabled] family from across the country or even across the world to ... talk to their family member or to see their family member if he or she was too sick or had a breathing tube and couldn’t talk,” Marcus explains. “They wanted to have that time with [the patient] where they could say what they wanted to say, sometimes in the last moments.”
For instance, in some cases, family members would say prayers or sing songs during these sessions. “Whatever the family and patient felt would be helpful, we were there to support them with those technology services,” Marcus notes. While such technology has been helpful, there is no denying the limits that COVID-19 has placed on palliative care providers.
“With patients who are severely ill, we don’t have the luxury of time to have these conversations,” Marcus laments, noting that sometimes important critical decisions need to be made quickly. “We usually have [developed] relationships with these patients and families so that [these decisions] don’t feel ... so rushed.”
Nonetheless, Marcus believes the palliative care mobile unit concept will endure as an option beyond the current crisis, although not necessarily in the same format.
As demand for palliative care services has eased in recent weeks, most mobile team members, including Marcus, have returned to their regular jobs. While the usual palliative care providers can handle the current volume, the mobile unit concept could be activated easily if a need arises. “We have developed those relationships, and we are all willing to pitch in and help out,” Marcus observes.
Still, putting plans in place ahead of public health emergencies is vital. Developing the skill to provide these services well cannot happen on the fly, Marcus advises.
“In medicine, as with a lot of things, it takes time and experience to finesse these conversations in ways so that you are really able to both deliver and extract information from the patient and family [in ways] that will benefit everybody,” she explains.
Duke University Hospital has not yet experienced the same kind of surge in demand for palliative care services as hospitals in New Jersey. Nevertheless, there are significant obstacles associated with providing these services during COVID-19.
“The greatest challenges have [involved] the isolation of patients from their families, especially at the end of life,” explains Jennifer Gentry, MSN, ACHPN, ANP-BC, FPCN, GNP, RN, a nurse practitioner with the Duke University Palliative Care Consult Service. “[The epidemic] has made having discussions around treatment and goals of care more [difficult] as they are often done from a distance rather than face to face.”
The challenges presented by strict visitation rules extend to patients who are nearing the end of life for non-COVID-19-related causes, Gentry explains. “These patients may not be dying from COVID-19, but sadly they may still be very isolated from their families,” she says. In some cases, it is possible to receive exemptions to the visitation rules for patients who are nearing death, but this usually extends only to one or two family members, Gentry says. Otherwise, the only option available is communication via video.
However, Gentry has found that seeing a loved one in person carries significant advantages over video visitation or phone communications when it comes to care planning. For example, seeing a loved one in distress with many symptoms often will help families make important decisions about care. Now, that element usually is not part of the equation. “Sometimes, I have to paint the picture for them and help family members see what I see,” Gentry notes.
All the PPE palliative care providers must wear when visiting patients affects communications, too. For instance, eye shields can fog and face masks make it impossible for a patient to read lips. “In the best of times, these conversations are difficult. [All of these barriers] just make them even more difficult,” Gentry observes.
One added difficulty Gentry wishes she had anticipated concerns a North Carolina statute that requires an advance directive to have two witnesses and to be notarized. “Because of [this epidemic], we don’t have visitors walking around that we can grab to witness the signature on the document,” she explains. “Sometimes, when patients come in very ill and they need an emergency decision-maker, that is very problematic.” Gentry hopes to work with colleagues to amend the statute, but such action may be too late to affect any patients or families struggling with the virus in the near future.
While there have been numerous obstacles associated with the pandemic, Gentry says the experience has elevated the importance of advance care planning. People have been so bombarded with information about the disease and its end-of-life implications that they seem more attuned to the issues involved and more open to discussing such matters with their care providers, she explains.
Further, Gentry is hopeful policymakers and hospital administrators understand the importance of procuring sufficient palliative care resources. “Most hospitals in this state have some sort of palliative care program, but usually these programs are pretty lean,” she says. “There might be one or two providers on the [palliative care] team, but sometimes not a full interdisciplinary group.”
The COVID-19 experience has demonstrated palliative care is not a luxury, it is essential, according to Gentry. She stresses the need for training in this area extends well beyond a core group of providers.
“People need to be able to provide primary palliative care if they are not a palliative care provider,” she explains. “Palliative care specialists need to have the funding and the time to be able to teach other people about the basic things they can do to facilitate goals-of-care discussions.”
Such training should include guidance on communications, symptom management, and how to involve an interdisciplinary-professional team. “Does it need to be the provider who begins a conversation, or can someone else on the team begin to have the conversation about advance care planning?” Gentry asks.One of the challenges that has emerged over the course of the COVID-19 pandemic is the surge in demand for palliative care services under circumstances that impede the optimal delivery of this care.