Can patients still die a good death during a pandemic?

CONTINUING OUR NEW SERIES: COVID-19 AND THE PALLIATIVE CARE RESPONSE…

Our Guest Writers today are Kathleen Leemans, Postdoctoral Researcher, Department of Radiotherapy and Palliative Care, UZ Brussel, Vrije Universiteit Brussel, Brussels, Belgium, and Lieve Van den Block, Professor in Aging and Palliative Care, VUB-UGent End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium.

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Kathleen Leemans PhD (left) and Professor Lieve Van den Block.

It was the beginning of April when my family and I (Kathleen) were confronted with a hospitalisation amidst the COVID-19 pandemic. My father-in-law got a serious infection and as I write this he has been in the hospital for three weeks without us being allowed to visit him, or barely speak to him by telephone. This situation affects us very deeply, and I cannot stop thinking about all those patients and all those families who have been in this situation over the past year knowing there is not much time left for them to be together.

Most hospitals, as well as care homes, have had very limiting visiting protocols since the beginning of the pandemic in Europe, as well as a shortage of staff and beds to cope with pandemic care needs. In the hospital where I work, many caregivers were providing care in COVID departments on a voluntary basis during the multiple Corona-waves. They were exposed to excess mortality without any special training.

As researchers, Lieve and I were expecting these circumstances and limiting measures to have a great influence on the quality of end-of-life care and dying for patients, families and caregivers. Therefore, we decided to take part in the CO-LIVE consortium (part of iLIVE: Live well, die well) with participating countries from across Europe, to map the experiences of caregivers on end-of-life care during a pandemic. Between the 15th of March 2020 and 31st of August 2020, we surveyed 260 professional caregivers in Flanders, Belgium via an online questionnaire concerning the care they provided to dying patients. Forty-three per cent of the reported deaths occurred in hospital; 38 per cent in nursing home and 19 per cent at home. Fifty-three per cent of patients were infected with COVID-19.

One part of the survey asked about the symptom-related care provided to patients. The participants in the study reported pain in the last two days of life in half of the patients, and shortness of breath in 60 per cent patients. When asked whether, in their opinion, everything was done to relieve these symptoms, caregivers said ‘yes’ in 90 per cent of cases. These were reassuring figures as they indicated that in most cases professionals perceived they had the time and means for adequate symptom control at the end of life during the pandemic in our country.

On the other hand, caregivers reported that they could provide sufficient emotional and spiritual care in respectively 38 per cent and 26 per cent of the deceased COVID patients and in 59 per cent and 50 per cent of the deceased non-COVID patients. The circumstances of the pandemic did not always allow professionals sufficient time for providing emotional support. We also asked about other circumstances surrounding death. In 77 per cent of COVID cases and 63 per cent of non-COVID cases, the patient had the opportunity to have online contact with family and friends in the last two days of life. For 75 per cent of COVID cases and 90 per cent of non-COVID cases, visitors were allowed. For 20 per cent of dying patients, visitors were not allowed in the last two days of life.

As palliative care researchers and practitioners, we were struck by these numbers. Although most care facilities allowed limited visitors for palliative patients, too many patients have died without the presence of close loved ones, without proper emotional support, or possibly without being able to say goodbye appropriately to their families and friends. As other studies and reports have highlighted, palliative care was in many cases not seen as essential during the pandemic.^1,2 These figures further substantiate these findings.

For professional caregivers, especially the ones not trained in providing good end-of-life or palliative care, it might be hard to know when a patient is dying, or to communicate well about this with patients, families, or each other.

Therefore, we hope the results of our study, and those of the other CO-LIVE countries, will convince managers and policy makers in health care that palliative care is as essential as all other treatment and care, which has been prioritised during the pandemic. Moreover, we hope this will lead to the development of detailed guidelines and support services for patients, relatives and caregivers confronted with end-of-life situations.

This can help patients to die a good death, families in their bereavement process, and caregivers to emotionally cope with mortality, even under pandemic circumstances.

References

1. Bregje D Onwuteaka-Philipsen, H Roeline W Pasman, Ida J Korfage, Erica Witkamp, Masha Zee, Liza GG van Lent, Anne Goossensen, Agnes van der Heide. Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care for patients dying with and without COVID-19 (the CO-LIVE study). Palliat Med. 2021 Apr 7; Online ahead of print. https://doi.org/10.1177/02692163211003778
2. Harrop E., Farnell D., Longo M., Goss S., Sutton E., Seddon K., Nelson A., Byrne A., Selman L.E. Supporting people bereaved during COVID-19: Study Report 1, 27 November 2020. Cardiff University and the University of Bristol.

Links and resources

• Follow Kathleen Leemans on Twitter @leemanskathleen
• Follow Lieve Van den Block on Twitter @lvdblock
• End-of-Life Care Research Group.
• iLIVE: Live well, die well project.
• Coronavirus and the palliative care response: EAPC web page with links to publications and resources.

Read more posts in the COVID-19 and the Palliative Care Response on the EAPC blog.

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