Roles and responsibilities

Staff have many responsibilities in end of life care which will range from having a sensitive conversation with an individual about their care and preferences, recognising any changes in condition and offering compassion and support to the patient and those important to them. This will require a broad variety of skills and an awareness of the values which underpin this behaviour. Compassionate care has to be at the forefront of all nursing care but is even more fundamental in the provision of caring for dying people and those close to them.

Source: NHS England – Our Culture of Compassionate Care.

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” — Dame Cicely Saunders, nurse, physician, writer, and founder of hospice movement (1918 – 2005).

You will have many responsibilities in end of life care, which will range from speaking with and listening to individuals and those close to them about their care and preferences, observing, discussing and recording any changes in conditions and offering compassion and support. This will require a broad range of skills and an awareness of the values which underpin this behaviour.

When providing end of life care, ensure you:

  • treat people compassionately
  • listen to people
  • communicate clearly and sensitively
  • identify and meet the communication needs of each individual
  • acknowledge pain and distress and take action
  • recognise when someone may be entering the last few days and hours of life
  • involve people in decisions about their care and respect their wishes
  • keep the person who is reaching the end of their life and those important to them up to date with any changes in condition
  • document a summary of conversations and decisions
  • seek further advice if needed
  • look after yourself and your colleagues and seek support if you need it

Nursing care

“Palliative Care is about putting life into a patient’s days not days into their lives” – Nairobi Hospice

Although challenging and emotionally demanding, when you are supported to have the right skills, knowledge and attitude, end of life care can be very rewarding.

End of life care is provided in a range of settings which include care in the community, a hospital, care home, hospice etc. Regardless of care setting, the quality of care should be of the highest standard.

When it is recognised by nurses and doctors that a person may be dying, this needs to be communicated in a sensitive and compassionate way to the dying person (as appropriate) and those close to them.

How we communicate with the person who is dying will depend on each individual case. This is an extremely sensitive area and should be patient led, with gentle, honest answers using language the person understands. At no time should the conversation continue, if there is any indication that the patient doesn’t want to continue. Staff should always be mindful that some patients will not want this conversation and therefore it should not take place. However, it is crucial that conversations should take place with families to prepare them for impending death.

Care of the person

When you provide good nursing care for those at the end of their life, you will be providing holistic care including providing physical, emotional, psychological and spiritual support. The individual may be a patient, but remember they are also another human being that may be feeling lost, confused and have questions about their nutritional and hydration needs. Equally, the person may not come to you with questions, preferring to keep them to him or herself, or discuss with another person of their choosing. It’s important to let the person remain in control of who they wish to share these issues with. Don’t forget that those close to the individual may also be looking for support and information.

It is important to be sensitive to people’s needs in relation to nutrition and hydration. If someone has a question, try your best to answer it if you are able, or make sure you seek advice from a more senior member of staff if you aren’t sure.

Understanding the dying process

Caring for a person during the last few weeks and days of life can be stressful and demanding. Many different feelings and emotions may surface from all those involved.

Recognition of dying is actually quite complex. This is acknowledged in the literature and in reports regarding end of life care, such as More care, less pathway (Neuberger 2013) and Dying without dignity (Parliamentary and Health Service Ombudsman, 2015).

It is useful for staff to use prognostic indicator tools in the last year of life. For example, the Gold Standards Framework (GSF) and the Palliative Performance Scale 2 (PPS).

When it is recognised by nurses and doctors that a person may be dying, you then need to communicate this in a sensitive and compassionate way to the person and those close to them. It is also important to communicate why it is only necessary to provide minimal hydration.

A key part of the nurse’s role is being able to come alongside the person who is dying and those close to them and to support them throughout what is a natural process.

The time before death is generally peaceful for patients, and there is a gentle winding down that may take several days. Many people are concerned that death will be a painful experience for the person, but the body just starts to ‘let go’ of life. At times a person can become restless, but this can be treated.

There are physical signs of the natural process of the person’s body gradually slowing down. Sometimes these signs appear a few hours before death, and sometimes it can be a few days. We look further into the signs of dying in another section of this module.

Learning from complaints

Staff often feel defensive when a complaint is received, however this is not helpful behaviour and an apology should not be viewed as an admission that they have got it wrong. Saying sorry is one of the most helpful things you can do, when a complaint is received. There is a helpful document called ‘Saying Sorry’ around how to say sorry.

Although receiving a complaint is challenging and upsetting for staff, it is important that when it is upheld there is evidence of learning from it. This is highlighted in the Parliamentary and Health Service Ombudsman report Dying without Dignity (2015).

The new ‘Duty of Candour’ guidelines recommend to take a more open and honest approach with patients and families when mistakes in clinical care have been made.

The clip below shows an example of where the team did learn from the complaint in end of life care.

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