CONTINUING OUR NEW SERIES: CELEBRATING THE IMPORTANT ROLE OF VOLUNTEERS IN PALLIATIVE CARE…
Today, our guest writer is Sabine van der Hoorn, a volunteer with the Omega palliative home care, Brussels, Belgium, who describes the impact of the pandemic on her work as a volunteer, and some personal views.
Over the past three years I have been volunteering for the not-for-profit association, Omega, a palliative home care team in Brussels. Omega consists of nurses, doctors, a psychologist, a coordinator, administrative staff and approximately 25 volunteers, and strives to preserve the best quality of life for incurably ill patients and their friends and family. When a patient nearing the end of life asks for palliative care, the nurse puts in a request to our coordinator, who then contacts a volunteer. The most important role of the volunteer is to just ‘be there’ for patients, and possibly their loved ones. A volunteer would never take over from the professional caregivers, for example nursing care, and is requested mostly to keep the patient company to give the family a break or to leave the house. In reality, however, this often quickly evolves into strong emotional, social and/or practical support. The volunteer actually has the time to listen to the patient, perhaps rather more time than the professional caregivers. People who are terminally ill often have a strong desire to talk to others and share their life story. Other activities such as reading the paper to a patient or taking them for a walk can also be a part of the volunteer’s job. But on 13 March 2020, following Belgium’s significant public health restrictions due to the Covid-19 pandemic, all support provided by Omega’s volunteers was put on hold.
During this time, I was supporting a man in his 50s with cancer. His condition had worsened only a few days before the measures were announced by the Belgian government, and so I had a chance to visit him one last time at a palliative care unit. Fortunately, up until the day he died, visits were still allowed, albeit only by one family member.
At the same time, I was privately looking after a 90-year-old friend at a hospital in Paris. (I have dual Dutch/French nationality and therefore have close ties with France). Here, the situation was more distressing as his partner was no longer allowed to visit him. She told me that the sudden lockdown of the hospital had led to war-like scenes: visitors glued to the entrance doors, begging staff and nurses to bring their loved ones parcels, without knowing for sure they would actually reach their destination. Also, in Belgium one of the Omega volunteers reported about elderly people coming to the hospital (some even with a ladder!) hoping to catch a glimpse of their partner, one last time, often in vain. In Paris, my friend died after two weeks, entirely alone.
It is heart-breaking that this worldwide public health crisis has led to even more incurably ill people being left to die isolated and alone. Why did the threat of this disease seem to overrule the importance of supporting people at the end of their lives? How was this crisis able to undermine the very essence of palliative care volunteering, an approach that is humane, humble and real, where the focus is on the holistic care of people and their families facing the end of life?
It seemed to me that in Belgium and in France, just like the rest of the world, measures were indiscriminately imposed to preserve the majority of the population. The only medicine that seemed to matter was the medicine of numbers – the number of tests, masks, infections, occupied beds and deaths.
Omega volunteers are often the patients’ last human contact. Our job is to build a strong relationship with our patient, to make the most of their last days in this life and to really listen to them; we create a bond that lasts as long as they still live. It is sad to see that the restrictive measures in March 2020 prevented us from bonding with our patients in need. However, Omega responded very quickly to the situation and initiated remote palliative care projects. Requests came in at a slow pace, both from patients and volunteers, which only emphasised the need for physical contact and presence. On the other hand, our six weekly volunteer meetings, also replaced by online alternatives, were very successful. It goes without saying we were, more than ever, in dire need of mutual support and understanding of how Covid-19 had not only changed care at the end of life but also the way we mourn at a distance. Fortunately, lately we have been able to pick up where we left off in March with new care projects taking off.
As the new wave of the pandemic breaks, governments have now announced more lenient measures for home visits of terminally ill patients. Could this be our long-awaited ‘palliative response’ to the public health crisis? Let’s hope it is.
Read more posts in the ‘Volunteering and Palliative Care’ series here. The series concludes in mid-March when Ros Scott and Leena Pelttari, Co-chairs of the EAPC Task Force on Volunteering, will discuss the impact of COVID-19 on the future of hospice and palliative care volunteering.
Links and resources
- Contact Sabine van der Hoorn by email.
- Omega website.
- EAPC Task Force on Volunteering web page.
- Please help us advocate for the support, recognition, promotion and development of volunteering in hospice and palliative care by signing The EAPC Madrid Charter on Volunteering in Hospice and Palliative Care.
- You can read more posts about Coronavirus and Palliative Care on the EAPC blog.
More about the author…
Sabine is of Dutch/French nationality and lives in Brussels where she is working in the cultural sector. She has been a volunteer with Omega palliative home care for the past three years.
EXPLORE NEW DIMENSIONS AT 17thEAPC World Congress Online – interactive live sessions 6 to 8 October 2021. #EAPC2021