2020 has been an extraordinarily challenging year for hospices. Here Dr Sam Edward, Medical Director at North London Hospice, gives an insight into the challenges faced by the charity’s doctors, nurses and health care professionals during the pandemic, and the enormous pride she has in the team, who despite the odds have kept key services running.
The week prior to lockdown I was acting CEO of North London Hospice, and I was aware of what was ahead of us. It was like an earthquake had erupted and we were waiting for the inevitable tidal wave to hit. We knew it was coming, and we tried to plan as best we could.
The challenge for families and loved ones
The situation kept changing and at times it was overwhelming. I was managing our planning while trying to deliver frontline care too. The biggest challenges we faced were around visiting and the safety of our patients, volunteers and staff.
We are constantly trying to strike the right balance between following guidance to limit contact and keep everyone safe, while enabling people to be together and see their loved ones.
Central to end of life care is supporting people to have their loved ones around them in their final days. For the last six months we have not always been able to do this, and it’s been heartbreaking.
Staying connected to our patients
In the community, many of our patients were shielding and it was a priority to find ways to maintain support. There were rapid changes to our services as we introduced consultations by video. We continued to visit people at home and also supported carers, patients and professionals with 24/7 telephone advice.
Highs and lows
There were many highs and lows during the lockdown. Some of these experiences will forever stick in my mind.
On our inpatient unit we provided terminal care for a patient whose wife had dementia and didn’t understand why she couldn’t be with him in hospital. He was referred to us for his last two days. We supported his wife and daughter and allowed them to stay with him. Constantly reviewing the visiting guidance helped us to do this.
At the other end of the spectrum, at the beginning of lockdown an elderly couple that had been shielding came to our hospice. He was dying and they really couldn’t manage at home anymore. They hadn’t been separated in 50 years, and I had to tell her that for her own safety she couldn’t stay with her husband, but we would take good care of him. Moments like these make us very sad, but I’m proud that we kept the hospice open and community support running, even when other services closed.
The issues over PPE were on the news every day, and we faced the same challenges with obtaining stocks as other healthcare providers – it wasn’t coming through and we were rapidly running out.
I remember the relief when we got our first national drop of PPE. It was long awaited, but many of our orders arrived without masks or aprons. It was really hard to see how we could keep going without this essential equipment. During that period we had no choice but to ask our community for help, and it was the generosity of their donations in those first weeks that enabled us to continue supporting patients.
Lack of physical contact
PPE has made communication with patients difficult, as we realised how much we read through facial expressions. Doctors and nurses on our inpatient unit have a photo on our name badges to help share our faces more clearly. I tell patients “this is what I look like underneath the PPE”.
I’m used to greeting people with a handshake or holding the hand of someone at the end of their life. For many it is the image so often shared in relation to compassionate hospice care. Sometimes people just need a hug, but of course we can’t do that now. The lack of physical contact creates a distance that we’ve spent our whole careers breaking down, and we just have to do it in other ways now. It’s taken me a long time to get used to this new way of caring.
Support at home
At the beginning of the pandemic I had a conversation with my husband as he was worried about me, but there was no question that I wouldn’t work. I had a duty of care to my patients, our staff and volunteers, and I needed to do all I could.
During the darkest times I revised my will. There were times I feared for my family’s safety as I knew I might bring Covid-19 home. Ultimately I did get sick, as many of my colleagues did.
This kept me awake at night, and I worked from home as soon as the fever passed. However, there were moments when I had to dig deep to find the energy.
I checked out of everything except work for months, and my husband took over all the remote learning and caring for our girls while working full time. I worked hard for the hospice and for our Palliative and End of Life Care network for London, but
I know I couldn’t have done it without them.
Support for frontline workers
Our Frontline is a partnership between Shout, Samaritans, Mind, Hospice UK and The Royal Foundation of the Duke and Duchess of Cambridge. It offers round-the-clock one-to-one support, by call or text from trained volunteers, plus resources, tips and ideas to look after your mental health.
Hospice UK’s Just ‘B’ Counselling & Trauma helpline. The service is a free confidential national helpline available 7 days a week from 8am to 8pm on 0300 030 4434, providing bereavement, trauma and emotional support for all NHS, care sector staff and emergency service workers.
- Call the ‘Just B’ Counselling & Trauma helpline on 0300 030 4434
- Visit the Our Frontline site