TOO NEAR BUT SO FAR

By Anna Perry
Anna Perry was previously a GP partner and is now a speciality doctor on the inpatient unit at the Marie Curie West Midlands hospice. She writes about her thoughts on the discomfort of being distanced from patients and families by Covid whilst being a bridge to their private moments.

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During lockdown the hospice where I work as a doctor made the very difficult decision to close to all visitors. This included visits even to those patients who were right at the end of their lives.

It was devastating for all. The patients, their loved ones, the staff, our community.

The once vibrant building that held so much of what is good about life; laughter, friendships, love, compassion, strength and teamwork had been stripped in the preceding weeks of volunteers, staff, visitors and friends.

It felt different. We wore masks, scrubs and visors. The doors were closed to all but ambulances. The café was empty. The building seemed hollow and colder.

We fought against our own emotions of fear and anxiety and worked hard to do what we do best. Centre the patients and their families and provide support at what is often the most challenging period of their lives together.

We brain stormed how we could lighten this strange situation by playing music and wearing our grinning faces as photos to humanise our otherwise monotone gowns. We read articles about using our voices to convey emotions that our masks now hid and ensuring our covered smiles reached our eyes.

We knew we were distanced by this new way of working. The isolation was palpable and inevitable. Human touch was forbidden without a layer of latex and patients were now confined to their rooms without the presence of families who had previously often mounted day or week long vigils to ensure their loved one was never alone.

It was easier to respond to the needs of patients than families in many ways. We were there with them. We sat with them and ensured they weren’t alone, soothed them and talked to them when they wanted noise, held silent when peace was best and reassured them how much those in their lives loved them. We heard their stories and learnt what had shaped their journeys. But the barrier that covid formed was still there. Ugly in blue material and plastic aprons and we cried at the end of each day against these new limitations on our care.

For families we became voices on the phone. We took time to make sure we rang at least once every day, describing in detail what was happening and asking for the information that would be used to make their loved one as comfortable as they could be. Favourite radio stations, songs, passages of prose. How many sugars in tea, names of all the grandchildren, places they had travelled. But there were no reassuring hugs. No held hands as we broke bad news. No searching faces during silence to respond to the unspoken questions.

Investment was rapidly made in technology to allow families to connect. It was a revelation in how it added a whole new layer of meaning to voice calls. To be able to see longed for faces, the view from a window, the way the sun fell across the bed and the layout of a room. We carried these electronic eyes around, providing a stream of information that connected humans and let them reach into the life of the person they missed. It was very welcome. A snippet of relief in the darker times.

When patients became so sick that they couldn’t make calls themselves or hold the phones and ipads, we stood and did this for them and enabled families to be present, sometimes even as they died. We read out last declarations of love and intimate statements of forgiveness, thanks and honesty.

At those times the previous distance and isolation closed in and suddenly it was hard not to feel we were intruding on that most exclusive and sacred of moments between people who share life and love. We were placed in a position of bridging the gap covid had opened.

We lurched from sensing a space and void we couldn’t reconcile with being foisted into private moments that were not ours in which to intrude. Knowing we were needed but unsure if we were welcome.

It has been the hardest of times but our discomfort falls far short of the sacrifice our patients and their loved ones have made.

With the lifting of restrictions and the arrival again of relatives and friends, the hospice is awash with a new sense of peace and normality even as the strangest war rages all around us.

We are still draped in layers and hidden behind goggles but the isolation is reducing. As is the need for us to be surrogates in intimacy.

We are finding the middle ground again and it’s never been more welcome.

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