One of the primary goals of palliative care (PC), an under resourced area of care at the best of times, is to “relieve suffering” of patients living with serious and incurable illness. With a pandemic on our hands, required isolation and the added need to protect those who are immunocompromised, our healthcare system is already strained under COVID-19. Because of this, providing safe and effective PC, including end-of-life care (hospice), becomes especially crucial and particularly difficult.
Here at Eirene our mission is to unpack difficult conversations around end-of-life planning and help families navigate the complexities of death care. One such area is PC (for an overview on PC visit our previous blog post here), which has many different considerations during a pandemic, especially as a powerful amplifier of suffering.
“Time is short when patients deteriorate quickly, health professionals are overworked, isolation is mandated, and families are advised not to touch or even be in the same room as loved ones. This scenario [is then] compounded most in low-income and middle-income countries where shortages of both critical care and palliative care services are greatest.”
“Available data on cases of COVID-19 suggest that older patients and those with chronic medical conditions may be at higher risk for severe and fatal illness. As a result, as the virus continues to spread, the demand for palliative care will continue to grow.”
Despite these challenges and the continued spread of the virus, PC remains an integral component of patient care. Practitioners are working harder than ever to ensure patients are well cared for and are attempting to be as creative as possible with limited resources in the midst of a pandemic that changes quickly. It’s an especially difficult time to provide the kind of care every human deserves as they live with a serious incurable illness or as they approach end-of-life.
Some facilities, like the team at Cleveland Clinic, are finding creative ways to meet this challenge. For example, they’ve “designed an enterprise-wide response plan organized around [four] domains”
“To mitigate isolation during end-of-life care, [this particular clinic] offers ‘compassionate exceptions’ to strict visitation policies, provides personal protective equipment to visitors of these patients, and facilitates virtual visitation via electronic devices.”
During the pandemic healthcare workers have been forced to provide care differently, far beyond donning personal protective equipment (PPE). There are increased “restrictions on family visitation and in-person team meetings, [and] clinicians are further challenged to manage their patients’ symptoms and complex communication issues.”
As we’ve seen, things progress and change quickly and our healthcare workers are having to respond to experiences we’ve never been through before, and at a large scale. They continue to put their lives at risk every day to ensure patients have the care they need and to continue to deliver high-quality care to all patients.
Prioritizing palliative care delivery in the time of a pandemic is complex.
During a pandemic delivery of PC needs to be understood in the context of two populations:
And then within those two populations, further prioritization might become necessary:
Over the course of the pandemic there is also the “possibility of constraints on the supply chain for medications and equipment. These may be most notable in community or hospice settings.”
“Palliative care is a field especially invested in the power of a hug, a steadying hand, and a smile. In other words, palliative care is made especially difficult by a virus that spreads through human contact.”
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Because this pandemic is unlike anything we’ve seen before, given the “ubiquity of international travel, the ease of transmission of the virus, and symptom variability have resulted in an unprecedented rate of spread.” The need for physical distancing has also led to the rapid adoption of telehealth solutions globally [provision and management of health care in which individuals (often working with family members) manage aspects of their care with remote support from health-care professionals.]”
It has “direct and indirect roles in reducing the spread of infections by enabling physical distancing, tracking symptoms and outbreaks, and supporting policy makers in anticipating needs and deciding appropriate and timely interventions.”
Changes in the way healthcare has traditionally been delivered (in-person) has required a shift during the pandemic to reduce exposure, preserve personal protective equipment (PPE), and minimize the impact of patient surges on facilities. “Healthcare systems have had to adjust the way they triage, evaluate, and care for patients using methods that do not rely on in-person services. Telehealth services help provide necessary care to patients while minimizing the transmission risk.”
“While telehealth technology and its use are not new, widespread adoption among HCP and patients beyond simple telephone correspondence has been relatively slow.”
Many healthcare providers are leveraging technology, both during patient care and at end-of-life, given the restrictions the pandemic induces. And these same healthcare workers have gone to “great lengths to balance the need for public safety with the concern about suffering related to isolation during end-of-life care in patients with COVID-19.”
End-of-life care (hospice) is already an extremely difficult and overwhelming time, both for the dying patient and their loved ones, and the pandemic adds another layer altogether, putting extra strain on everyone to provide the best type of care possible under the circumstances. We’ve all heard and read of countless stories, like this one, of healthcare workers bringing any level of comfort they can, especially in someone’s final moments.
As the virus continues to spread and PC is subsequently on the rise, in “light of these changes and challenges, the role of the PC specialist is [now] two-fold: (1) help mitigate the burden of the crisis by providing direct clinical care, including symptom management, serious illness discussions, advance care planning, and psychosocial support to patients and families and (2) help prepare healthcare systems and non-PC colleagues to handle the expanded demand for high-quality PC during crises.”
Another dimension that becomes increasingly difficult to navigate, with the quick progression of the virus for many and the limited breathing it induces, is that it’s hard for healthcare practitioners to talk with patients about what they want in their palliative care and especially what might be important to them at end-of-life. Hospice care sometimes isn’t even possible and the principles of the field have to be left to the wayside, instead making the patient as comfortable as possible (with the right dose of morphine) for their final moments.
As one healthcare practitioner in Austin said:
So, now I think palliative care for most is a three-step process. In the first days of hospitalization, we are helping with complex advance care planning conversations. Who is able to represent you if you cannot speak for yourself? In the next few days, we are primarily an added layer of support to the family as the ICU course may go for a few weeks, and we add communication and emotional support. Finally, in that subset of people who are not improving in the third and fourth week, we can support difficult conversations about next steps and matching care to patient and family goals. What is unique to palliative care is that we are doing the majority of this work with patients who are intubated and unable to communicate to us directly except in those brief encounters before intubation. For a field based on communication, this is a different time.
And with the added challenges the pandemic brings sometimes mitigating distress and aligning treatment plans with patient goals and preferences becomes increasingly difficult. Learn more about Advanced Care Plans in our previous blog here, and if you haven’t spoken to your loved ones about your wishes and care preferences, while difficult, it’s an important (and now more than ever, a vital) conversation to have.
Grief and suffering related to incurable illness and death is a challenging experience on it’s own and one that is compounded by the suffering isolation induces. It can be “anticipated that the need for psychosocial support for patients, their families and caregivers will increase during the pandemic” and must remain a top priority for PC and especially with end-of-life (hospice) care. With “[s]trict physical distancing regulations to slow disease transmission [it will] mean that patients who die [during the pandemic] from COVID-19 [or otherwise] will usually be without loved ones by their side, who in turn will be unable to say goodbye or undertake traditional grieving rituals.” People around the world are grappling with what it means to die and mourn in the midst of a pandemic. As “David Kessler, co-author of On Grief and Grieving, told CNN, ‘we’ve always been able to be with [our loved ones] bodies, to gather for a funeral. All that is gone. so we’re not only robbed of our loved one, but we’re also robbed of our ability to gather to hono[u]r them. On a national level, this is really unprecedented.’”
It has long since been a recommendation of the field to make PC training mandatory for all medical and nursing students and “had it been heeded, the health-care workforce would be more prepared for this pandemic.” Integration of palliative care into pandemic planning becomes crucial.
As social creatures, we remain deeply in need of one another and the notion of good PC, and especially of a good death, is still anchored primarily in the “image of being encircled by loved ones. Yet, the diabolical nature of the pandemic is that it has made these mortal gatherings unsafe.”
And so, in what ways will we continue to re-imagine PC, especially during a pandemic, when resources are already strapped and case numbers surging, PC services are often accessed far too late in patient care, and our healthcare system is struggling immensely? Perhaps we will see an expansion of PC across the healthcare system and a further improvement and refinement to patient outcomes. Now more than ever we can understand why PC is an integral part of living well and maintaining control and dignity at all stages of illness.
We’re here to help. To learn more visit us at www.eirene.ca, and to access additional COVID-19 resources to help navigate medical visits, expected or unexpected deaths and manage grief, visit us here.