By Julia Downing, PhD
IAHPC Advisor to the Board and Executive Director of the International Children’s Palliative Care Network
The year 2020 is certainly one that none of us will forget. It has been a year when we have seen how fragile and vulnerable we are, how quickly a virus can spread around the world. It has been a year when every one of us has experienced challenges: of lockdown, of being on our own for long periods of time and not going out; of changes in our work, whether we have been redeployed to a different clinical area, or are working at home, alone; of illness; of grief; of fear. Each one of us has been impacted in our own way, wherever we are in the world—something that unites us all.
As I reflect back on 2020 it feels like life has come full circle. Usually travelling between Uganda and the UK, I have stayed in the UK since the March 1. This is the longest time I have remained in one place for over 20 years; it felt like my life had shrunk from “the world” to “my study” and yet with modern technology I have had “the world in my study,” zooming in to meetings around the world, sharing and supporting colleagues around the world. Working together, ICPCN, IAHPC, WHPCA, and PallCHASE created a series of briefing notes and webinars to address the needs of palliative care patients during this pandemic was important and brought us together as a global palliative care community.
In April I started working as a nurse in our local hospice to help out during the pandemic. Numbers needing care were high, and staffing was reduced due to shielding, self-isolation, and illness. Whilst nervous, I enjoyed it, and it reminded me why we work in palliative care, the difference that we can make at such challenging times: times when family members could not visit, and if they could they had to wear PPE; times when individuals were dying of COVID, and we were learning how to care for them; time when staff members needed support; and a time when we all came together to provide the best service that we could despite limitations. During that time I valued being part of the team, and when I stopped working there in August I missed the team and the camaraderie that we had.
Little did I know then, that the week before Christmas, my father would be transferred to that local hospice for end-of-life care. He had been in hospital where we had been unable to visit due to the pandemic, and the relief for all of us was immense when a bed became available at the hospice. For me, it was like he was being cared for by friends and family as I had been part of the team, and the way they cared not only for my father, but for myself and our family was amazing. It was hard for me as a palliative care nurse, firstly when my father was in hospital and I was not able to visit—it went against everything I believe in with regards to end-of-life care, such as being with family members etc. It helped being able to visit in the hospice, but, as he had developed COVID whilst in hospital, visits were limited. To dad I probably looked like an alien in my PPE, with goggles that often steamed up due to the mask, and wearing glasses too (not a good combination, especially when crying as well!). I was able to hold his hand, but not to give him a hug, or to kiss him goodbye. But I was there, and he knew that, and we were able to “zoom” my mum and the rest of the family in so that we could all “be together” with dad.
So, life had come full circle, as I started the year off helping out at the hospice and ended the year at the hospice with my dad. Both experiences are ones that I will not forget, where I learned a lot about myself, where I was reminded of the value of palliative care, where I experienced—as an individual and as an onlooker—the pain and grief that this pandemic has brought to so many. Yet also, as I have worked with you all throughout this year, we have learned together, and we have grown together. And in the midst of all of the challenges, we have a stronger sense of camaraderie as a palliative care community; we have learned to “think outside the box” as to how we provide palliative care, we have learned to walk alongside people through their suffering and grief in new and different ways.
While this has certainly been an unforgettable year, I also hope it is one where we have grown and matured, and that we will take the lessons learned with us to continue to develop, advocate for, and provide palliative care for people of all ages around the world.
Learn more about the International Children’s Palliative Care Network (ICPCN), the Worldwide Hospice and Palliative Care Alliance (WHPCA) in the IAHPC Global Directory of Palliative Care Institutions and Organizations.