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This area covers what care workers do at the end of life, including palliative care, bereavement and loss and what you need to do when someone in your service dies.

Advance care planning

An Advance Care Plan or advance statement is a written statement that sets out someone’s decisions about their future care. It provides a guide to help social care and healthcare professionals, and/or their representative such as an advocate or someone who has a lasting power of attorney, who might have to make decisions about an individual’s care if they become too unwell to make decisions or can’t communicate them.

An Advance Care Plan can cover any aspect of a person’s future health or social care but is especially significant during the COVID-19 pandemic. It could include which people need to be consulted and who can make decisions about treatment, particularly where someone’s mental capacity might affect their understanding. It’s important to remember that the person has rights and that decisions can’t be made by others about their treatment. This includes ‘do not attempt resuscitation’ forms. It is also important to be sensitive, as people and their families are under great stress due to COVID-19 and this might add to their stress.

ReSPECT is a process that creates personalised recommendations for a person’s clinical care in a future emergency in which they are unable to make or express choices. The ReSPECT form includes personalised preferences for a person’s care and health support. The ReSPECT plan is created through conversations between a person or, if the person doesn’t have capacity, their nominated person. This is recorded to help to achieve the outcome that they would want.

 

Bereavement and loss

How people die remains in the memory of those who live on

Dame Cicely Saunders (1918-2005) Founder of the modern hospice movement

 

Bereavement, grief and loss linked to the death of a person, describes the responses we have in acknowledging the significance of the person who has died and how we manage the process of dealing with this.

During the COVID-19 pandemic, you may have experienced the death of a colleague, a family member or friend and people who you provide care for.

 

Take time to care for yourself with this ‘supporting yourself and others’ guidance.

 

The British Psychological Society’s COVID-19 bereavement task force has released an online leaflet ‘Continuing Bonds’, which suggests alternative ways to help us remember friends and family who die due to the pandemic and being at the funeral isn’t possible.

​For people with learning disability and/or autism communicating and experiencing illness and death will cause additional anxiety. It is possible that the person you care for may experience the death of someone they know during this period. The links below provide accessible resources to support communicating death:​

 

Dementia

For people with dementia and their families, bereavement and loss may occur before a person has died as well as after a person has died. Helping someone to understand loss when they have dementia can be achieved with compassion.

COVID-19 has meant that people may not have been able to be with their loved one at the time of death. It has also meant that more deaths in a shorter time period have occurred which would be overwhelming for anyone working as a care worker.

It is important to be able:

  • To ask for support

  • To listen and to offer support

  • To provide an opportunity to talk

  • To keep in touch, even though this might be at a distance

  • To mourn the person in a way that is meaningful and dignified and respects their religious and spiritual beliefs.

 

Watch our 30-minute Managing Bereavement webinar

Duration 30 mins

 

 

Useful links

Confidential Adult Social Care bereavement and trauma support line operated by Hospice UK. Call 0300 303 4434 (8am-8pm, seven days a week) - Calls are free to make.