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Social work in a hospice during Covid

Stella Murray's powerful and moving account of working as a palliative care social worker...

Professional Social Work magazine, 3 November, 2020 Share your Covid-19 experiences here.

As a social worker of 30 years, working in a hospice during Covid-19 has been the most challenging experience in my social work career.

The hospice covers two boroughs in London and is five minutes away from a hospital recording the highest death rates during this pandemic.

At the end of February, I met a gentleman with cancer who was referred to the hospice for physiotherapy and emotional support. A few days later I was informed that he had died in hospital after testing positive for Covid. Because I had been in contact with him, I had to go into isolation for a week.

On my return to work, for the first time in my career I was wearing scrubs, full-face shields, gloves, apron or gown and eye protection in the inpatient unit.

The hospice had to make an appeal for personal protective equipment (PPE), as supplies had run low.

Death in a time of Covid-19 is lonely and silent

Dealing with the death of a loved one is one of the most difficult things we have to go through. Covid-19 has made it even harder for people to say goodbye.

Mourning in coronavirus means something unimaginable for the relatives and for the dying - they are not allowed to be together or say their final farewell.

The wife of the gentleman who died of cancer told me she had been unable to visit him in hospital and instead had a daily call from the doctor. She said that her husband was a practicing Hindu and religious rituals would have been very important for him.

The pandemic impacted on people practicing their religion with worship and services cancelled. Our local faith leaders continued to come into the hospice to meet the spiritual needs of our patients and families. Social distancing rules applied and they were issued gloves, masks and aprons.

The man’s wife was grateful that the hospital chaplain said prayers for her husband and found this comforting. She said not being able to say goodbye was a harrowing experience when he died. She was also not allowed to see her husband in the funeral parlour due to restrictions.

At his funeral, four weeks later, only five visitors were allowed. In the early days of the pandemic, no family members were allowed to attend.

Some of our patients have no next of kin or families who can afford a funeral. During the pandemic I have had two cases I had to refer to the local authority due to no money for a funeral.

In another case, I was dealing with a patient who came to us from hospital for end of life care who had two cats that needed looking after. Her property had been burgled while she was in the hospice.

At the height of the pandemic the local hospital mortuary became full and extra space had to be provided in another borough. Funeral parlours also became full due to the delay in cremations and burials. A family member informed me that the parlour their deceased relative was in was charging £200 a week for storage.

I remember travelling to work in March and April past the local ambulance station and seeing the ambulances lined up on both sides of the street ready to be called. At work and at home I could hear their sirens in the background going to the local hospital day and night.

People cannot grieve together properly as a family

Hospitals and nursing homes have either not allowed visitors or where visitors have been allowed it has been limited to one visitor if they wear PPE.

Touch is so important for everyone’s wellbeing. How we feel about others and how we use verbal communication is so important.

During the pandemic it’s been so sad that families have not being allowed to see a loved one, touch a loved one, or give someone a much-needed hug. This has been so missed both with our patients and families, work colleagues and in our own personal lives.

A simple touch or touching an arm or shoulder, giving somebody a hug, shows that we really care.

The emotional impact of social touch triggers the release of oxytocin, a hormone that decreases responses to stress. It could be a nurse holding a hand to reassure a patient before surgery, a carer supporting somebody with eating or a nurse supporting someone who is distressed.

Non-verbal communication - body language and tone - is important in exchanging information and building trust.

But during Covid, the use of the mobile phone, FaceTime, Zoom, Teams, Google Translate and video calls have taken over our daily lives and in our workplaces.

We had a young male patient from Europe who had cancer and was admitted to the hospice for symptom control/terminal care. His wife and young child were living overseas.

His family were unaware of his disease progression. He suddenly died and his phone was ringing on his bed table with a picture of his wife and son. His wife and son were on Facetime and the unit sister, a nurse and I were present when the news was told to his wife and child that he had died.

His wife wanted to see her husband and she was shown on Facetime that he died. It was very daunting and very emotional because it was a sudden death.

English was not the family’s first language and the discussion was difficult. The grief was unbearable. I was involved in supporting family and friends to repatriate the body back overseas by land.

Facilitating family visits is a challenge

Some of our patients in the hospice had been transferred from hospital. Some family members were unable to see their loved ones during the pandemic for several weeks. I have had to facilitate family visits, farewell visits and final visits. We had discussions with the multi-disciplinary team on how to coordinate these visits through the hospice gate, patient’s room window and the garden.

All visits have to be planned in advance. Children under 16 were allowed to visit at the discretion of the clinical services manager or the inpatient manager. No pets have been allowed.

If a patient is expected to die imminently two family members will be called and this may be extended to other key family members. PPE and social distancing rules apply.

It has been so heartfelt and humbling to watch families being reunited with their loved ones.

I supported a lady who was in the end stages of life and we were able to celebrate Mother’s Day. The patient’s daughter asked if her own daughter was allowed to see her grandmother in the garden and she would take responsibility for social distancing and the visit.

Access was given through the garden gate and watching the grandmother and granddaughter meet was truly moving. The laughter, smiles and emotions were so powerful and it was obvious how important this was for all of them. There was peace, tranquillity and watching the expressions of love and calmness within the family was so touching. The sun was shining and the garden was peaceful and looking beautiful.

 A few days later we were able to celebrate the patient’s 49th wedding anniversary. We decorated her room and the patio area with balloons, cards and banners. Her room was full of family photos that were done in a collage. Her daughter had arranged for hand statues to be done by an artist and when the moulds were finished the artist brought these to the hospice.

The daughter and her mum were clasping hands and the granddaughter and the patient had clasping hands. The artist was allowed to come to the hospice and took some photos.  

The cook made 25 cup cakes and the celebrations touched the patient, her husband and her family. It made her feel very special.

In the last week of the patient’s life her husband was allowed to come in to see his wife, wearing full PPE with masks and gloves. Only one visitor was allowed in the room.

On her final day, the patient’s husband and daughter were able to be with her as she took her last breath and died in their arms surrounded by love. 

The patient’s son travelled from outer London and was allowed to say goodbye to his mum in a special room at the hospice. It was so important for him to do this.

One of our volunteers knitted pairs of hearts for the patient with the other being for their family. This has been used a lot and families love the connection they bring to their loved ones.

An extreme time for families and practice

This pandemic this is an unparalleled and extra ordinary public health emergency. The changes made in the last few months have been to protect our vulnerable patients, as well as our nurses, doctors, domestic staff and the wider health care team.

To those of us working in the hospice the outpouring of love from individuals and businesses in our community has blown us away.

The hospice’s online resources have helped carers supporting people at home. It has produced information resources including moving and handling techniques and administrating medication through a line and needle.

As social workers we have the knowledge and skills to support patients and families by reassuring, informing and supporting communities who are frightened, worried and wanting to stay well and have dignity in their end of life care.

It is clear that this pandemic will not affect everyone in the same way. The message from the government has been to stay home and stay safe within that home, in the assumption that everyone has a home that is safe and with which they have some autonomy.

With this pandemic there is a fear of the unknown and concern for what lies ahead, for us as social workers, our patients, clients and their families, our colleagues and their own families and friends. There are uncertain times ahead.

The mental health and wellbeing of families and professionals

Bereavement which is a difficult experience under any situation is taking place under very challenging circumstances during the coronavirus pandemic. How will we know who the bereaved families are? How they cope and are supported is a challenge.

Several UK bereavement charities and organisations offer guidance, advice and support to deal with bereavement during the pandemic; both the practical and psychological aspects. The hospice has made applications for bereavement grants.

Concerns have been raised about our responses to the increased anxiety and mental health needs of the population.

The mental wellbeing of all the staff working directly in the pandemic will have a huge impact on us and affect us physically and emotionally. The mental health of the nation is another concern.

The way this crisis has unfolded has meant that we have all sorts of new challenges in seeking to meet the health needs of our populations.

The new challenges that will be faced in the NHS and social care, care homes, prisons and the impact on the voluntary and charity sector will now change forever.

There is so much uncertainty about the virus and how long it might take before life begins to return to normal and how the provision of health and social care can come out the other side of this pandemic stronger and better prepared to face future challenges. It will need an urgent review.

When lockdown happened on the 23 March the government guidelines said that everyone must stay at home except to obtain food or medical supplies, take daily exercise or travel to and from essential work.

Emotions around the country have been expressed in different ways from scenes of panic buying to selfless acts of kindness where more than 600,000 people volunteered to help the NHS or vulnerable and older people in their communities.

During this pandemic I have felt stress, anxiety, grief and worry. Recording these experiences has helped me to keep track of my own feelings and views of what has happened and it has helped me reflect on my experiences the last few months.

When I look back on working during this pandemic there is a reasonable chance that I will have forgotten quite a lot of what has happened. I want to be able to read it and feel good about the things I have achieved.

Some lessons learned

Staff need to be given time/support to be able to reflect on what has happened during this pandemic.

I am so proud of everyone in the hospice for the way they have accepted the situation and just got on with it.

It has been important to take care of my family and myself and to try to eat healthy, exercise regularly and get plenty of sleep.

It is important to build a strong peer/support system using technology.

It is important to unwind and be kind to yourself. It is still hard to keep social distancing and not to have a hug.

Try to take deep breaths and do activities you usually enjoy if you can.

Stay informed of what is going on, but be aware there may be rumours during a crisis, especially on social media.

Seek help when needed if distress impacts activities of your daily life.

Do you have experiences, thoughts or feelings of social work during the COVID-19 pandemic you would like to share with Professional Social Work magazine? Click here to find out how

This article is published by Professional Social work magazine which provides a platform for a range of perspectives across the social work sector. It does not necessarily reflect the views of the British Association of Social Workers.