Providing palliative care during the COVID-19 pandemic. Experiences from Spain

The severity of the COVID-19 pandemic in Spain has resulted in limited provision of palliative care. Palliative care
physicians and nurses have often been deployed to deliver emergency care for people with COVID-19. In a context of resource constraints, priority has been given to interventions aimed at saving people’s lives over palliating discomfort among seriously ill people and their families. The Clínica, a non-profit hospital with two venues, one in northern Spain and a second one in Madrid, is specializing in providing cancer care. In northern Spain, the hospital has a unit for palliative care consisting of three physicians, two nurses and one psychologist. They work in inpatient and outpatient settings, following up patients proactively from diagnosis of advanced disease until the end of life.

Under state of emergency legislation enacted in Spain on 15 March, all private hospitals in the country came under direct control of the government. The Clínica was no exception, and as of 20 May it had seen more than 800 people with COVID-19 in northern Spain and 750 in Madrid. The hospital had to adapt health care service delivery to address the COVID-19 emergency, often at the expense of providing palliative care. Care pathways were rearranged and personnel were reassigned either to attend COVID-19 patients or to work remotely. In the palliative care service, the head physician was sent to the hospital in Madrid, which was coping with a much higher volume of COVID-19 patients compared with northern Spain. One of the nurses was deployed to a nursing home. The psychologist, who commuted from a nearby city with a high prevalence of COVID-19 infection, was asked to work remotely. One physician living with a chronic respiratory condition was allowed to attend patients remotely. During the COVID-19 crisis, the hospital observed a reduction of about 50% in inpatient visits for palliative care. Some patients postponed appointments given the risk of potential infection. Instead of in-person visits, weekly phone calls and remote follow-up were given priority. The palliative care team provided both advice on medication and reassurance to those troubled by the uncertainties of the COVID-19 emergency.

However, some patients did not receive adequate care, as illustrated by the case of a woman newly diagnosed with
pancreatic cancer who travelled almost 400 km to the Clínica in northern Spain after failing to receive pain relief treatment in Madrid in other centres. Another example is a woman in her thirties diagnosed with advanced pancreatic cancer who died unexpectedly given her relatively good physical state. Psychosocial factors played a role and were probably worsened by the fact that the palliative care team could not provide the close attention and physical presence she needed because of the COVID-19 pandemic.

Palliative care is also needed for COVID-19 patients. Palliative care teams are specialists in alleviating dyspnoea, cough, fever, shortness of breath and other symptoms that affect COVID-19 patients. They are trained to manage complications that affect COVID-19 patients at the end of life. They also play a role in detecting and treating delirium via pharmaceutical as well as non-pharmaceutical interventions. Palliative sedation can be prescribed to patients not eligible for intensive care who present refractory symptoms. And for all COVID-19 patients, palliative care is of utmost importance for humanizing care so that care is effective and aligned with the expectations of patients. Patients facing severe COVID-19 infection and their families undergo emotions that require kindness and empathy, which may be challenging to provide in a context of limited resources and increased workload. In general, COVID-19 patients in the hospital setting are not allowed to receive visits. Palliative care providers are trained to communicate compassionately with families, to provide emotional support and, when needed, to facilitate time and space to say goodbye.

The following story exemplifies the broad scope of palliative care during the COVID-19 pandemic. A man in his nineties hospitalized with COVID-19 was dying. His wife was allowed to stay in the same room despite restrictions for visitors; she had been admitted at the same time as her husband for a non-COVID-19-related condition and refused to leave the hospital after discharge. A palliative care physician was asked to verify that the man was not suffering as he reached the end of life. The physician confirmed that the pain was under control but detected that the man’s wife was suffering, being nervous and worried. He turned to her, provided reassurance and offered to answer questions. He spoke, slowly and gently, with compassion. She understood and was gradually relieved, with a visible transformation, and remained with her husband in peace and very grateful. The entire exchange lasted less than 5 minutes, but the woman’s positive response testifies to why palliative care should not be undermined during the COVID-19 pandemic.

Providing palliative care for COVID-19 patients has been  challenging in Spain. Because of the nature of the services they deliver, palliative care professionals are more susceptible to experience anxiety, stress and burnout. In many instances, adapting the health care services delivery to cope with the COVID-19 pandemic weakened and overburdened the rest of the team still providing palliative care. In other cases, they were not allowed to see patients to reduce the risk of infection among health personnel.

The importance of palliative care during the COVID-19 pandemic may not be evident, as health systems grapple with providing curative care while coping with an ever-increasing influx of patients. Efforts to prevent infection within the hospital and to ensure adequate supplies of personal protective equipment may relegate palliative care to a second instance. Nevertheless, palliative care is of utmost importance for delivering humane, effective care that is aligned with patients’ expectations, including COVID-19 patients.