Many countries have entered the Covid-19 pandemic without fully-fledged plans for addressing end-of-life suffering during a surge.

The palliative care community has been urging for better pandemic planning for over a decade. Many pandemic plans promise palliative care when resources are triaged, but few have developed sustainable strategies to meet that guarantee.

“Suffering is only intolerable when nobody cares”

Modern hospice philosophy was developed in the 1950s and 1960s by Dame Cicely Saunders, founder of St. Christopher’s Hospice in London. She saw the need to address a person’s “total pain”, comprised of physical, psychological, spiritual, and social suffering.

“Suffering is only intolerable when nobody cares,” she wrote in the journal Cancer in 1960. Writing three years earlier, she was still at university when she articulated the core of her work to come. A palliative care team should “work together to relieve where they cannot heal, to keep the patient’s own struggle within his compass and to bring him hope and consolation to the end.”

In a pandemic, palliative care teams must continue caring for those dying from causes unrelated to the pandemic virus while also handling the rapid progression of suffering for those dying from the virus. In the absence of system-wide plans for palliative care at the regional and national levels, some palliative care physicians have been publishing guidance for reference within the community and for those caring for terminal stage loved-ones at home.

Dr James Downar is the Head of the Division of Palliative Care at the University of Ottawa and an attending physician in critical and palliative care at The Ottawa Hospital. He co-authored an analysis of pandemic palliative care that was published in the Canadian Medical Association Journal (CMAJ) in April. The study builds on the pandemic’s early lessons and expands on a 2010 study he authored.

In addition to preparing for strains on “stuff, staff, space and systems,” provisions must be made for increased use of “sedation” to manage pain that defies the medications usually used for palliation. Mitigating additional suffering that arises from “separation” must also be a point of focus. Rapid symptom onset, resource scarcity, and the surge in cases make communication between health professionals and patients all the more crucial. In our interview, Dr. Downar emphasises the need to address “systemic inequities” that affect access to palliative care, which have been exacerbated by Covid-19.

It has been a particular challenge to palliate pandemic-related end-of-life suffering in long-term care facilities, where a significant number of deaths from the virus occur. Palliative care in nursing homes “has historically not been as strong as it could be,” says Dr Downar. Although such long-term care facilities have palliative protocols and caregivers with relevant experience, they are not hospices. Many residents do not have terminal illnesses and are expected to live in relative health for many years. If palliative care is needed, a referral process is in place to send patients to hospices and in-hospital palliative care units.

But the “disruption of transportation and normal referral systems” has been a problem in this and other areas of palliative care provision, notes Dr Downar.

When the pandemic hit, many caregivers fell ill, thereby worsening the staffing shortage that is already an issue due to funding, he says. “As we went in to try to help, it was clear that there were patients who were experiencing physical symptoms that would probably not have been that hard to control. But these facilities were completely overwhelmed.” He hopes that the pandemic will inspire more intensive cooperation between palliative care and long-term care going forward.

The need to limit exposure within facilities has resulted in a rise in home hospice care. But hospice personnel are sometimes turned away because residents and caregivers fear infection, says Dr Daniel Hinshaw, Professor Emeritus of Surgery and Consultant in Palliative Medicine at the University of Michigan.

“When the pandemic hit, many caregivers fell ill, thereby worsening the staffing shortage that is already an issue due to funding”

Dr Anna Spathis, University Lecturer in Palliative Medicine at the University of Cambridge observes that patients are also “mindful of the pressures on services” and are “generally less likely to seek support.”

Some patients are reluctant to seek palliative or acute care if this means suffering and possibly dying in isolation, says Dr Downar. For those who do seek care, pandemic policies that allow only one or two visitors at a time cause additional distress. Dr Downar suggests that giving families greater opportunities to visit with patients if appropriate precautions are taken could mitigate these issues.

“Psychological distress and being in isolation can make physical pain a lot worse.”

Palliative care is normally a team effort, involving subspecialists, chaplains, hospice carers, family and friends. The team approach is disrupted as cases surge and isolation sets in. Dr Spathis says that a palliative care team can be split between a hospice’s Covid and non-Covid areas.

In a hospital’s intensive care unit, attending physicians and nurses end up being the primary comforting presence. The Prime Minister, Boris Johnson, paid tribute to his nurses at St. Thomas’ Hospital, where he was admitted in April. In a BBC interview, one of his nurses said that they “chatted away” while she attended him in the ICU. She also spoke to the importance of “holding [a patient’s] hand” when they are isolated from their family and friends.

Communication with health professionals leaves a profound impact on patients and is particularly challenging when a surge is coupled with the need to isolate.

Physical presence, eye contact, a hand on the arm, choice of words, and voice intonation can do a lot to ease psychological, spiritual, and social suffering, which in turn affect physical pain. Dr Hinshaw points to the fact that “psychological distress and being in isolation can make physical pain a lot worse.” Each dimension of suffering affects the others and communication plays a central role in managing that interface.

It is important for a range of health care professionals to feel comfortable communicating with patients in end-of-life situations. Restricted access to the ICU and the need to ration personal protective equipment means that intensive care physicians and nurses are frequently the ones caring for a patient at their death, explains Dr Downar.

“Masks hide comforting smiles, and physical touch must be restricted to what is needed to care for the patient’s physical symptoms”

Many patients go on a ventilator when “their brains are still working quite well; and often, they are terrified,” says Dr Hinshaw. Being a comforting presence is also difficult when a patient is “coming out of sedation to be on the ventilator.” They are disoriented, and “the only person who can be the comforter will be a nurse who is gowned up and is also trying desperately to not take the virus back to their family.” Masks hide comforting smiles, and physical touch must be restricted to what is needed to care for the patient’s physical symptoms.

There have been concerted efforts over the past couple of decades to make compassionate communication with patients more central to US medical education, says Dr Hinshaw. But he adds that there is still much to be done.

Video calls add a silver lining to a pandemic in the age of technology, “but it is not the panacea that perhaps some people thought it was,” Dr Downar observes. In person, a physician can better notice symptoms and silent suffering.

Effective virtual care also depends on someone being on hand to assess the situation and to make the call to specialists, says Dr Downar. This is difficult when personnel are stretched thin.

There are other difficulties to virtual care. “You can have compassion in your voice” and “you can interact visually, but it is not the same,” says Dr Jane Carnahan, a psychiatrist who has worked with military veterans and patients with terminal illnesses.

“Palliative care is everybody’s job,” says Dr Downar. Those working in acute care and long-term care facilities “need to have some level of knowledge and comfort providing symptom management.”

“On a practical level, specialist palliative care teams do not have sufficient resources to care for every person with palliative care needs,” Dr Spathis explains.

Dr Downar notes that specialist palliative care teams may be called if more complicated end-of-life symptom management is necessary. But for rapid onset conditions like Covid-19, there is often a tight timeline. By the time palliative care specialists may become involved, their principal task is to comfort grieving families, says Dr Hinshaw.

Dr Spathis also points out that “sudden transfer to a new and unfamiliar team (specialist palliative care) near the end-of-life is not ideal for some patients, who sense their home team ‘giving up’ on them. Instead they may value ongoing care from their usual team, providing palliation and a focus on quality of life, in parallel (potentially) with ongoing management of the underlying disease.”

Primary care physicians attain some palliative skills through existing training, but a stronger grounding in palliative care is important. A 2015 study of US medical graduates reports that as few as 41.7% “felt very well or mostly prepared” for end-of-life care, complemented by 46.3% for “dealing with a patient death.”

Dr Carnahan emphasises that palliative care is “a philosophy of treatment” that can be used in any area of medicine. She says that the concept of total pain has informed her psychiatric work. It results in “a more holistic kind of care even when the primary effort is directed at active treatment of disease rather than palliation.”

“Wherever you detect there is human suffering, some kind of palliative care approach is appropriate,” adds Dr Hinshaw. It is therefore relevant for every medical student to gain exposure to palliative care principles.

In the UK, “medical student training in palliative care is relatively advanced, with some teaching occurring in every medical school (albeit with a wide range of student contact time),” says Dr Spathis. “Importantly, education is a central principle of palliative care. As well as caring for those with the more complex palliative care needs, palliative care specialists consider it a key responsibility to educate and empower non-specialists to provide palliation for their own patients.”

All US and 90% of Canadian medical schools likewise offer palliative care teaching. But there, as in the UK, palliative care educators and professionals see room for improvement.

Requiring clinical experience in palliative care is something that medical educators have been discussing for a long time, says Dr. Downar. But in the US and Canada, the prospect is affected by the turn to competency-based education, he explains. This approach allows more concerted development of specific skills than a system based on hours satisfied. But focus on each competence takes time, and it is logistically difficult to make clinical experience in palliative care a required element even for relevant specialisations.

“Barely half of trainees are graduating with a clinical exposure to palliative care”

He notes the particular importance of palliative care training for those specialising in cancer, cardiology, geriatrics, internal medicine, nephrology, neurology, and respirology. But even in these specialisations “barely half of trainees are graduating with a clinical exposure to palliative care.”

There is also a persisting misconception among some in acute care medicine “that palliative care means you are giving up on people,” says Dr Hinshaw.

But when a patient is unlikely to recover, timely transition to palliative care can do a lot to alleviate end-of-life distress. Dr Hinshaw explains that once seriously ill Covid-19 patients require intubation (placement of a tube in their upper airway in order to breathe) and respiratory support from a ventilator, there is roughly a 50-50 chance of survival. If a patient declines much further, he says, there comes a point when the palliation of suffering should become the primary focus of care.

Dr Hinshaw observes that the core of the modern pandemic response in the stages before a vaccine is developed (e.g., social distancing and the use of quarantine measures) remains much the same as measures described in Daniel Defoe’s account of the 1665 bubonic plague in London. We have significantly improved hygiene, knowledge, skill, and supplies in many regions of the world since then; but until there is a vaccine or other effective treatment, we must acknowledge that “there will be people who will die.”

Dr Downar’s co-authored studies highlight ways in which each country can prepare accordingly and with an eye to equity.

“Recognising the universal nature of the pandemic,” says Dr Hinshaw, equity in palliative care should be pursued at home and abroad. “Compassion dictates a response to the crisis from the resource rich countries of the world that extends beyond their own needs and distress to embrace the suffering of those poor in resources.”