Emma-Jane Beer has been a Clinical Nurse Specialist in Palliative Care at Trinity for nearly 15 years.

"If one’s life is a jigsaw, and the process of dying is the final piece, then my role is helping and supporting patients to find and place down that piece.

I assess and offer specialist advice on controlling physical symptoms and help patients address their social, emotional and spiritual care needs.

How we help people in the last months, weeks, days or even hours of their lives really matters. For a lot of our patients, the focus needs to be about dying. We need to address death and dying so that patients can then get on with living every moment.

Often people need to make important plans and decisions or have difficult conversations with their loved ones as they approach the end of their life. Part of my role is to provide careful, sensitive support using a completely holistic approach to both the patients and the people who matter to them.

Responding to the pandemic

We have spent more time working in the office due to the extreme visiting restrictions in recent months. We have been putting this time to good use by building relationships over the phone. One can build trust and connect this way, but I do prefer being with the patients. When you are talking to someone face to face about sensitive topics, the non-verbal cues, the eye contact or just ‘feeling’ the atmosphere in the room gives you a sense of the unsaid. Our patients and their families have been very understanding about why we can’t visit as much as usual but if a patient’s needs become complex then we will go to them.

Trinity introduced the national guidelines for COVID management and restricted visiting on the inpatient unit back in March. You can imagine the restrictions resulted in an overwhelmingly distressing and emotional time for patients and their families. 

As a result, in the Community team we have seen more unwell patients with complex symptoms. Some have been living with intense and difficult psychosocial situations. Before the pandemic, these patients may have decided that the inpatient unit was better suited to the care they needed but visiting restrictions have meant that some have decided to stay at home. Where this is the case, the Community team has been central to their care. This has been challenging at times but we have been working closely with our colleagues in the Patient and Family Support team, who have also seen the impact that this has had on our patients and families.

"Reflecting back to the height of lockdown and the pandemic, one brave woman on my caseload will have a lasting impact on me. A hard decision was made for her to come to the hospice for end of life care. The paramedics who brought her in were amazingly compassionate and allowed the family to say their goodbyes for several hours before they left her house to be admitted to the hospice.

One of our counsellors and I found ways to keep her connected with her family despite them not being able to visit. They described us as their eyes and ears. We took photos of her with the flowers they had sent and recorded videos with her to send to her siblings which I think kept them connected to her. This was in addition to the incredible care the team on the inpatient unit gave her.

The nurses on the inpatient unit were able to anticipate her dying and her sisters spent the night before she died with her at the hospice."

The pandemic has led to changes to how the Community team works at Trinity. We have had to work really hard. It has forced us to make smarter decisions and we have developed new processes and policies which will be a positive legacy. Our relationships with primary care teams have also been enhanced because we have had to work even more closely as a wider team through these extraordinary times.

I think we have adapted well and have shown resilience. Our team represents the diverse community of London, we all bring something unique and we unite over our passion for palliative care and have risen to the challenges. We have strong leadership and this is the recipe for us being able to work together so well.

The events and the atmosphere at the time of a person’s death, during this pandemic or not, can greatly influence the grieving process of those who matter to them and are left behind. These memories live on with the bereaved, so we try to make the experience as positive as possible for them. We meet amazing patients and families who show such strength and grace. It is inspiring to see."

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