Those who depend on palliative care and those who provide it are some of the most vulnerable to Covid-19 infection, but they may be able to offer the most insight into how to practically deal with end-of-life care during the current pandemic.
This was the sentiment of an international webinar on Covid-19 and palliative care, which drew over 500 participants, on 20 March 2020.
A panel of specialists included representatives from palliative care and hospice non-governmental organisations from around the world, people with life-limiting conditions and the World Health Organisation (WHO).
Hospice and palliative care aim to limit suffering and improve quality of life for those who have life-limiting or life-threatening conditions. It focuses on caring for physical, psychological, social, practical, legal and spiritual needs. Pain management is an essential tenet and special attention is also given to families and carers.
At least 40 million people around the world need this care annually; however, 18 million die in avoidable pain and suffering.
All panellists at the webinar agreed that palliative care patients are particularly vulnerable to infection during this time because their health is already compromised, and many rely on a team of outside carers to help them daily.
Lucy Watts, the founder of Palliative Care Voices and a person with palliative care needs, spoke of her experiences of the pandemic.
She said contingency planning is essential and that patients and their families need to plan who will take over the caring if the primary caregiver becomes ill. They need to decide which caring agencies to hospices will need to be called in to help if need be. If they get sick, they need to know which hospital will be able to treat them for Covid-19 and their existing health conditions.
“We need to make sure that people like me are not written off – our lives are of value. We do matter. There’s a thing going around that says: your only is my everything. Everyone keeps saying: it’s only the vulnerable and only the elderly that are affected. But for people like me, we are that only and it matters to us that we survive and have good lives. I am 10 years beyond my prognosis and I fought so hard to be here. I don’t want to go now after all this hard work. My life does matter,” she said.
The speakers all voiced their concern that palliative care patients might be sidelined during the pandemic.
Watts asked whether people like her with very complex needs will receive the same level of care as patients who do not have existing life-limiting conditions.
“It’s a big concern amongst families and the community that our lives are seen as less in the current pandemic,” she said.
Another concern is how palliative care units will be treated during the pandemic by healthcare authorities. Christoph Ostgathe, the president of the European Association of Palliative Care, pointed out that a hospital close to the one where he works has shut down the palliative care unit to make way for intensive care.
This is despite the fact that the pandemic is known to be particularly dangerous for the elderly and already ill – in other words, a large section of the palliative care population.
While organisations are working on their own strategies to cope, the WHO is developing technical guidelines to address these issues, reassured Marie-Charlotte Bousseau who is with the Department for Service Delivery at the WHO.
“The guidelines would include some recommendation regarding clinical management and the protection of the health of care providers, including family members, and some key ethical issues which are particularly difficult to solve in this context,” she said.
“It will also address the psychological implications of this crisis, and in particular isolation. It’s very good to have the opportunity to hear from you and we definitely want to stay in close contact with all the important stakeholders in this field around the world.”
It was agreed that despite these threats to palliative care, it can provide leadership and insight into how to self-isolate and quarantine as most patients and healthcare workers have done this regularly.
This can be an opportunity for palliative care specialists to affirm the importance of the principle that people matter by training other healthcare workers, said Mark Watson of Hospice UK.
“We have key skills. Initially in the United Kingdom, people thought people would be pulled away from palliative care to do the ‘real stuff’, but actually we have been able to ring-fence palliative because we’ve talked about the number of deaths,” he said.
“People will need our skills, but we cannot provide all the palliative care needed so we’ve got to be prepared to train others such as emergency and ward staff. They needed clear information of how to manage the symptoms… we are good at managing those symptoms.”
This is especially true in the case of South Africa, said Joan Marston, who has been a leader in children’s hospice in South Africa and Palliative Care in Humanitarian Aid Settings.
She predicts a massive escalation in the number of infections in South Africa and is concerned, given the vulnerability of most South Africans.
“South Africa’s economy is in freefall and has been for quite a while. The majority of our population lives in poverty and a lot of it is urban, but many live in the settlements around the cities.
“We have almost eight million people infected with HIV, and only 60% are on antiretrovirals and compliance is not great. We have a high mortality from tuberculosis. We have a lot of malnutrition, especially in children. We have quite a fragile health system with only 4,000 intensive care beds,” she said.
Given this context, much is still unknown as to how palliative care will be affected by Covid-19 in South Africa she said. However, they are preparing as best they can.
She went on to point out that palliative care in South Africa is wholly supported by hospices and other non-governmental organisations at the community level.
“Basically, it’s done with charity money and because of what we experienced with HIV and AIDS, which really was a humanitarian situation, we developed a system of community care workers who actually do the bulk of the care. They are supervised by professional nurses who are linked to a clinic or to a hospice to provide the palliative care,” she explained.
She said the top priorities right now are providing the care and protecting those who do the caring. She hopes government guidance is imminent.
In the meantime, they have been hard at work to develop their own protocols and training. Community healthcare workers are being trained to adapt to the pandemic, as well as how to train others in the community to do the same.
They are making their own masks and sending water tanks with taps to those who do not have access to running water. They are reaching out to traditional healers to share information.
“There are many beliefs coming out now that this is a white man’s disease and the wealthy who can go overseas and travel are bringing it to the poor, so we are actually unsure of the feelings and emotions we are going to experience when this really becomes a huge challenge in the communities,” she said.
She concluded that while hospices and palliative care units in South Africa are looking abroad for insight and guidance, they remain aware of their own challenges – and their own strengths. MC
"Thou almost make me waver in my faith to hold opinion with Pythagoras" ~ Shakespeare, Merchant of Venice