A person is ‘approaching the end of life’ when they are likely to die within the next 12 months. During this time people often require ongoing care which may include end of life care. It helps them to live as well as possible until they die, and to die with dignity. It also includes support for their family or carers.

Here are some fundamentals of end of life care that apply to all care settings in England, Northern Ireland, Scotland and Wales.

• People should be seen as individuals, asked what is important to them and involved in all discussions and decisions about their wishes and care.
• Everyone should get fair access to care no matter where they live or what their circumstances.
• People should be supported to be as comfortable as possible and all care and treatment should be reviewed regularly to ensure that this happens.
• The care the individual receives should be coordinated so that everyone involved is aware of the plans; changes should be shared and transitions managed in a way that ensures the person and the
• people who are important to them are part of this. The individual should be able to access support from informed staff day or night.
• The individual should be assured that all staff involved in their care are competent, confident and compassionate.
• The community and the public also have a role to play. They should be able to have conversations about death and dying, including what can be done outside the health and social care systems.

Inadequate verbal and written communication is recognised as being the most common causes of errors and poor resident experience, this being particularly true during periods of transition. Communication is more effective in teams and between teams where there are standard communication structures in place.

"SBAR" is a way of standardising handovers. SBAR stands for Situation, Background, Assessment and Recommendation. It is used frequently in care homes, particularly when speaking with external health professionals. SBAR is particularly useful if staff are trying to get complex needs across such as care at end of life. SBAR is easy to remember and encourages staff to think and prepare before communicating.

An example of how SBAR might be used is:

Situation

This is Sue Smith a registered nurse at Red Cedars care home. The reason I'm calling is that John Clark has become confused, his oxygen saturation has dropped to 78 per cent on room air, his respiration rate is 30 per minute, his heart rate is 110 and his blood pressure is 85/50.

Background

Mr Clark is a 86-year-old gentleman who has lived here for a year. He has chronic pulmonary disease and his oxygen saturations are usually 89 per cent. He has been on oral antibiotics for three days. He has cardiovascular disease and moderate dementia. John does not wish to be admitted to hospital and has an advance direction in place.

Assessment

Mr Clark's vital signs have been stable since he has been on antibiotics but deteriorated suddenly this evening. He is not complaining of pain and he does not have an increased cough. He has been eating and drinking. He has not been this confused before and I think he is experiencing delirium.

Recommendation

I would like an urgent review to enable us to treat him within our care home with appropriate support.

Further resources

• NHS Institute for Innovation and Improvement. Safer Care - SBAR - Implementation and Training Guide (PDF)

Nurses are pivotal in ensuring that people who are approaching the end of their lives are supported to die in the place of their choice, as far is practically possible, in the way that they wish with the people they love. Nurses are, of course, part of a team and should not be expected to work in isolation in providing end of life care. However, they are often the people who are seen most by dying people and their families and are also perceived as being approachable and knowledgeable.

The key skills include:

• Communication skills - the ability to initiate or take part in conversations about death and dying
• Assessment - the ability to assess people's needs, in partnership with the individual and those who are part of their lives, discuss them with everyone involved and make sure this is written down and shared
• Co-ordination - all the care and treatment needs and wishes of the person who is dying are shared with everyone who might have contact with them. If possible one person takes responsibility for this and that individual ensures that they or a nominated deputy are available for both the dying person, their family and other care professionals to ensure that the plan of care is followed and unnecessary confusion, stress and distress are avoided
• Competence - all nurses should be competent to provide compassionate and sensitive end of life care with the support of the wider multi-disciplinary team. This is a fundamental nursing skill and not one that should be avoided. 

The RCN recognises that nurses and health care support workers (HCSWs) may find themselves in situations where a patient approaches them about their "desire to die". In these cases, the RCN seeks to provide guidance and support for nursing staff for what we recognise can be very difficult scenarios. Conversations can often begin with a patient asking about, or requesting, assistance to die, but can lead to a nurse being able to help and support that person better through to the end of their life. Through addressing a patient's concerns regarding end of life, around pain, anxiety, financial considerations or family matters, the patient feels more supported. For this reason, it is of the utmost importance that the RCN's position on assisted dying does not potentially undermine the relationship between nurse and patient and obstruct those conversations.

The RCN's guidance, When someone asks for your assistance to die, provides nursing staff with information and signposting, should a patient, relative or carer, ask about assisted dying or actively hastening death. This guidance strongly states that assisting a person to die is illegal in all parts of the UK. The guidance sets out the legal, ethical and clinical frameworks around assisted dying in respect of current legislation. The RCN is aware that should the law be amended, it will be necessary to amend this guidance and we will work with the relevant bodies to ensure that our members are fully informed.

All of us are touched by death and for staff working in care a care there will be times when death is hard to come to terms with. We also need to acknowledge that non family members and professional can experience grief when someone they are caring for dies.

In care home settings other residents are also bereaved and need support. Grief affects everyone differently and we need to understand the normal grieving process, how it can manifest itself and recognise when it is more complex and signpost people to specialist help.

The nurse has a role in leading the support to the team, allowing time for staff to grieve and to discuss the events surrounding a death, which might be of a resident or of a family member. Making time to debrief from difficult situations and learning from event is important. The nurse might use structured reflection or compassionate words and actions to support colleagues.

As leaders it is important to recognise when staff need further support and intervention and the RCN membership service provide counselling service free to members.

Further resources

• RCN Counselling Service

Below you will find some further links to resources.

• NICE. End of life care for adults
• RCN. Confirmation or verification of death by registered nurses

Sue and the team felt very strongly about the high quality care they were able to offer at Red Cedars and felt there was an opportunity for the home to continue if they delivered additional services. Sue's husband had just taken early retirement and worked with Sue and financial partners to propose a new model of care which included delivering contracted intermediate care, providing domiciliary care and meals to the local community, and running a day nursery within the home.

The accommodation in the grounds will be used as rental accommodation for student nurses and the home now offers high quality placements and bank work to ensure there is succession planning for the registered nurses.

The residents

John continues to live at Red Cedars with Dave and Graham visiting regularly; he is a member of the residents' forum and had just arranged for a broken vintage car to be delivered so that he can work on it with some of the other residents.

Following Jane's death, Eileen decided to move into the home and she arranges visits from the local operatic group to help with fundraising evenings for the home's chosen charity. The team are supporting her in her grief.

Seema now visits for respite care every other month and her great grandchildren attend the day nursery which is on site. Seema's granddaughter is doing work experience at Red Cedars prior to her application to university.

The staff

Rachel is undertaking her nursing degree and still works with the team doing occasional bank work. Danilo has undertaken further study including independent prescribing and is working at an advanced level as the clinical lead in the intermediate care unit. His wife and children are now able to join him. Sue is the registered home manager and is developing colleagues so that the home can continue long into the future.