Barely a quarter have recommendations for end-of-life care, which are often too brief
Half of all people who have died with the coronavirus in Belgium died in a residential care centre. As a result, issues such as end-of-life care or saying goodbye are in the spotlight. However, palliative care has received little or no policy attention in recent months: in an international study of worldwide guidelines for residential care centres carried out by VUB and the Global Brain Health Institute in San Francisco, scientists found few or no recommendations about good palliative care for residents affected by Covid-19. “People in residential care homes are among the most vulnerable population and are disproportionately more likely to die from Covid-19. However, it appears that guidelines are often lacking and, when they do exist, they are limited to prevention and monitoring of infections and transfers to hospital. There is little or no attention paid to maintaining quality of life and death,” says Dr Joni Gilissen.
For this study, the researchers requested guidelines for residential care centres from international organisations such as the World Health Organization and 62 experts from various high-, middle- and low-income countries. The request yielded a total of 81 documents.
Analysis now shows that only 21 of these documents contain specific guidelines for residential care centres, with reference to end-of-life care. These are recommendations drawn up in the United Kingdom, Switzerland, Ireland, the United States, New Zealand, Belgium and the Netherlands. When end-of-life care is mentioned, it mainly concerns visits in end-of-life situations and saying goodbye. Other crucial aspects of palliative care such as bereavement counselling for the next of kin or psychosocial support for the caregivers are missing. In addition, the researchers found remarkably few specific recommendations for palliative care in Covid-19 patients with dementia. However, the prevalence of people with mild to severe dementia is very high in care institutions, sometimes up to 60% of the total number of residents.
“Staff in residential care centres are faced with complex end-of-life situations that are now more difficult than before and require a great deal of specific knowledge. In general, the guidelines drawn up so far are too short and lack specific recommendations that healthcare providers can really use. In the future, more attention should be paid to palliative care both in our country and abroad. Additional financial resources are also absolutely necessary and new instruments can be a tool for better palliative care in residential care centres”, says Dr Lara Pivodic (VUB).
“Palliative care in corona times is aimed at dying with dignity, mainly by preventing and alleviating suffering. It involves attention to aspects of a physical, psychological, social and spiritual nature: monitoring fever, respiratory symptoms, anxiety, pain, cough or confusion, or burial advice, as well as end-of-life communication with the resident and/or family with an emphasis on preparing for what may come, and determining what the person would or would not want. Maintaining autonomy, access to information and choices are paramount. But comfort care and the importance of involving specialists and palliative care teams are also extremely important,” says Prof Dr Lieve Van den Block (VUB).
The results of this research have been published in the renowned Journal of Pain and Symptom Management (https://www.jpsmjournal.com/article/S0885-3924(20)30372-9/abstract ).