How Covid-19 hit Oxfordshire's palliative care services

What has been spoken about less often, however, is how palliative care doctors and nurses, have had to change their way of working to enable high-quality end-of-life-care, despite the constraints of the pandemic.

Doctor Mary Miller, a palliative medicine consultant at Sobell House, told the Oxford Mail: "The pandemic was a disaster and people have thought about cures, managing the disease, reducing mortality - but it is equally as important we think of what good end-of-life care is for those 706 people who died of coronavirus across the county and good bereavement care."

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Over the last year, those providing palliative care and bereavement support have had to completely change their way of practice, navigating how to provide support and comfort at a time where there are limits on physical and social contact.

Andrea Lambert, clinical director of Helen and Douglas House, a children's hospice that provides palliative care, reflected upon the last year and how the pandemic has affected life within the hospice.

Ms Lambert, who has been a trained nurse for 35 years, explained that the scarcity of personal protective equipment [PPE] last spring and the novel concept of social distancing was at first hard to navigate in an environment where physical contact is often vital in providing care.

She said: "Like everywhere, obtaining PPE took many hours.

"During the first weeks, we were down to counting the number of masks we had and working out from that how many children we could admit.

"Social distancing also had a huge impact on people here - what did this mean for moving children around the building to deliver care?"

The hospice also had to rethink who could visit the children – which Ms Lambert said was extremely difficult.

She said: “Visiting was the one thing we put so much thought into because we had to get the balance between being compassionate, but also keeping the footfall in the building as limited as possible.”

For routine respite stays, the hospice asked parents to not visit and to keep other siblings at home.

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Yet for children who were extremely poorly and using the end-of-life-care facilities, the hospice had to focus on who was most important to the child and who would best support the parents.

The hospice had to reduce the number of children it could house during the pandemic.

This meant the hospice had to rethink how it could keep in daily contact with the families it supports who could not stay at the hospice.

Therefore the hospice worked to deliver more care within the community, with clinical nurse specialists and doctors doing more home visits.

Throughout the pandemic, Ms Lambert said that a lot of families who have children with complex health needs, disabilities, or who are terminally ill 'feel that they have been hidden or forgotten'.

She said: "We are proud that our hospice has had a active programme, so families feel at least one service has been in contact."

"We have done food and essential hampers, which are delivered by staff and volunteers to ensure every family gets a doorstep contact."

To deliver the best end-of-life care in all settings, Helen and Douglas house teamed up with several other palliative care hospices across the county to ensure that resources were shared, and the best quality of care was provided.

One hospice the house partnered with was Sobell House, based on the Churchill Hospital in Headington.

Sobell House provides palliative care for adults with life-threatening illnesses: over the last year, this has included providing care for those dying of coronavirus.

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Dr Miller said: "Roughly this time last year we were expecting the crash of the wave that we thought was coming.

“We didn't know the virus, so we were gathering all the little information we had out of China, and some out of Italy, and we watched how people were dying and we learned what to expect when they were dying."

The main question the team of healthcare workers at the hospice was faced with was where people are going to die but also how could they maintain contact with loved ones, at a time where regular visits from many friends and family were prohibited.

Dr Miller continued: "Sobell house was one of the five hospices in the whole country that did a review of the care of the dying and what we learnt is that is important to think about what is a good end-of-life-care even in a disaster.”

Dr Victoria Bradley, another consultant of palliative medicine at the hospice, reflected on what she believed is the most unsettling thing about working in end-of-life care during the pandemic.

She said: "One of the great sadness’s of something like Covid is that people have to choose who is their most important person.

"We never usually ask people to prioritise who they love the most.

"People make this network of connections that build up their life, and all those people had to drop away because they had to protect themselves which is a real sadness."

The hospice, however, quickly adapted to finding ways to provide the best quality of care despite the constraints the pandemic had created.

Lead specialist nurse for palliative care at Sobell House, Mary Walding, explained that an end-of-life core group, of nurses, doctors, and specialists, began to meet every week to decide how best to provide the care during the pandemic.

Several patients decided to stay at home, which meant more doctors and specialists nurses were going into the houses of patients to provide check-ups and treatments.

The hospice also set up a specialised video-calling service, called ‘Attend Anywhere’ which allows for confidential medical conversations over the phone.

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Nurse Walding said: “A lot of our patients are elderly and we have a lot of technophobic staff so there were a lot of apprehensions, but it became a good way to deal with the palliative care needs.

“People reacted positively because instead of greeting someone covered in a mask, goggles, gloves, you could see a whole face and for many patients, this had a more personal touch.”

Dr Bradley added: “I echo this because one thing we have heard back from consultations is that for those hard of hearing, being able to see someone on a screen and control the volume, is much more useful than being confronted by someone wearing a mask and a visor when you cannot even lip read.

"I can't tell you how much feedback we got from people so pleased that they didn't have to find parking in one of the Oxford hospital sites.

"People weren't getting stressed about driving here, they were in their own sitting rooms, and they were relaxed."

She continued: “I think we found ourselves now at a place where we realise there has been deep suffering for our patients across the county, but we are hopeful that we have learned so much about how to support people better and we are hoping there can be some positive things about how we work.”

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