Dying Matters: end of life care and education during lockdown

This week marks Dying Matters Awareness Week – focusing on the importance of being #InAGoodPlace to die. Jane Ashworth and Pauline Howard from Springhill Hospice, one of our endorsed learning providers, discuss why dying matters to them and how they have supported the adult social care force through the challenges of the past year.

Very dear to our hearts are the words of Dame Cicely Saunders – “How people die remains in the memory of those who live on”. Bereavement in itself is hard, and we want those memories to be of a ‘good death’.

As palliative care educators, our role is to coach, nurture and instruct staff to build a workforce that is confident, knowledgeable, caring, compassionate and who deliver excellent care at end of life.

At Springhill Hospice we were already delivering an endorsed programme of education centred around training nurses and carers in the key aspects of palliative care, planning for future care, compassionate communication, dealing with distress, skilled symptom control, patient and family focussed care and supporting the bereaved. We were already there as a resource to provide both practical and emotional support to care organisations across our patch.

Education is something that we are passionate about and know that it has a direct impact on the quality-of-care provision at end of life, so when the Coronavirus invaded our communities and lockdown began it hit us hard. Never have we, as a palliative care team been so acutely aware that Dying Matters, and that by helping patients and families to be in a ‘good place’ - geographically, physically, emotionally, and spiritually - is paramount to good end of life care. We found ourselves not only locked down, but locked out too; locked out of care homes, medical practices, hospitals, and our hospice to reduce footfall and to protect vulnerable patients/residents and families and to protect each other. We went home to work armed with a laptop and a mobile phone and we began the business of changing training to webinar-based learning which would keep the interaction and discussion that is so vital to learning.

Our training focuses on encouraging conversations around end-of-life care and particularly on advance care planning. This has never been so important than in the last year when staff have had to have sensitive and difficult conversations with those that they care for, their families and loved ones.

We began care calls to care homes to provide emotional and psychological support to teams overwhelmed by the volume of dying patients and residents, and to avert crisis situations. We trained staff who had changed roles or re-entered the nursing profession after retirement. We attended weekly online education network meetings to keep abreast of all that was happening across our region and nationally. We learned new IT skills and updated all the training modules to reflect the changes in the community.

When needed, we provided some face-to-face education around the safe use of syringe drivers, and verification of death so that people could continue to live and die in the place of their choice.

An example of working together is shown by a gentleman with a profound learning disability who was diagnosed with a late-stage cancer. He had lived in his assisted living house for over 20 years with two other gentlemen and had a group of care staff who had been caring for them all for many years, it was his home. However, he had started to have seizures and was generally deteriorating. The staff were frightened and unsure of how to care for him; the hospice specialist nurse was involved and managed his symptoms along with the district nurses. We went out regularly to support the staff, advise on his care and answer any questions and concerns. They then felt confident in speaking with his family and had a best interest meeting to discuss where his care in the final weeks should be, which was in his home with his family, friends and staff that he knew around him. In his last days, our hospice at home team also went in to care and keep him comfortable until the end. The alternative for this gentleman would have been a hospital admission or transferring to another nursing home who would not have had the knowledge about his very individual needs.

The pandemic has meant a reduction of hospice in-patients, as they were only allowed one visitor and so many people chose to stay in their own home where family could be with them. This meant our hospice at home team was doubled and in the early months the nurse educator joined this team. It has been a challenging year, we have learnt a great deal and will continue with online training alongside face to face. We have all learnt to be more aware of the emotional impact the pandemic has had and to give each other a little time and support, staff have adapted and changed the rules with one thing at the forefront of care – to enable people to be in their own individual ‘best place to die’, which can only be achieved if you have these conversations with the person and their families.

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