“I want to stay at home”

“I want to stay at home” has been the frequent request heard by the community specialist palliative nurses during the Covid-19 pandemic…. and “we will do all we can to enable this” has been our reply.

As a team of 7 community specialist palliative care nurses based at Forest Holme Hospice (Poole Hospital NHS Foundation Trust), working across an area of East Dorset spanning from Bere Regis to Swanage to Cranborne in the North, we have continued to support the many differing and complex needs of our patients during this pandemic in ways we could not have imagined. Their already complex journey is now one of exacerbated and increased isolation, where family and friends cannot meet with them, hug them or support them in ways previously enabled. Their goals can no longer be met in the way they had hoped for. Their families face constant conflicts such as needing to safely collect medication or shop for the food that their loved one suddenly fancies whilst navigating escalating anxiety and distress caused by long queues, fear of bringing home ‘the virus’ and increased time away from the patient.

Fear surrounds every conversation and there is so much of it – fear of admission to hospital or the hospice, fear of catching the virus, fear of not seeing family again, fear of things worsening, fear of the unknown and all this fear is alongside much isolation.

Now wearing uniform and PPE at each home visit, our communication is muffled through surgical masks. Management of difficult and distressing symptoms and provision of psychological support is negotiated along a more complex path of accessing medications and support amidst reduced and changing resources.

Visits now have to be carefully planned ensuring infection control precautions and social distancing rules are adhered to. Conversations undertaken are carefully and sensitively negotiated as children previously at school are now at home in earshot.

Disparate family members now require more of our support with long telephone conversations to help ease their worries and we’ve had to adapt to enable further support via virtual technology. For everyone, there is the increasing awareness of how often a small touch or brief physical human contact would make such a difference and never more so than in a time of such uncertainty in all aspects of life. And yet we can’t.

And so whilst our smiles can no longer be seen beneath our masks, our focus is on what we can STILL do; our eyes and voices can still express empathy and compassion; we can still use our expertise to manage and negotiate the complex path of pain, nausea and other symptoms. We can still liaise extensively with our colleagues, GP’s, district nurses and other health and social care professionals to ensure patients’ needs are met as best as possible despite demands and limitations on all our services. We can still spend time each day on the phone with relatives needing to know that someone is supporting their loved one through this turbulent time.

We can still remain the professionals we are despite appearances being changed by our outgrown haircuts, stiff new uniforms, gloves and aprons and our own human fears and anxieties about Covid-19. Above all, we can still strive to maintain dignity for our patients. Laughter can still be heard, we are all hearing birdsong more acutely, we are all learning what matters most and we are all getting through this together and doing what we do best – enabling patients to stay at home.

Community Specialist Palliative Care Nurse Team

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