Palliative and end of life care
On this page
- Challenges of end of life care and coronavirus (COVID-19)
- The key principles of palliative and end of life care
- Palliative care
- End of life care
- Pain and symptom management
- Cardiopulmonary resuscitation
- Care at the time of death
- Visiting restrictions related to coronavirus
- Care and communication
- Verification or Confirmation of Death
- Certification of death
- Additional resources and support
- How we can help
Applying palliative and end of life care principles as we move from the acute phase of the coronavirus (COVID-19) crisis to recovery, remains challenging. There are many factors that impact the care that health and social care professionals can give to their patients. These can include:
- social distancing guidelines
- the use of Personal Protective Equipment (PPE)
- visiting restrictions in hospitals, hospices and homes
- the additional pressure of dealing with coronavirus-related deaths.
We want to provide you with support and resources to help you to manage the care of:
- people who have an incurable illness and are in the last year of their life
- those who become symptomatic and deteriorate as a result of coronavirus.
The key messages for delivering palliative and end of life care during the coronavirus crisis are:
- Take a person-centred and holistic approach to care.
- Follow national, regional and local guidelines for caring for people at the end of life who are also being treated for coronavirus symptoms.
- Communicate sensitively, in a clear way with the dying person and those close to them.
- Involve the dying person and those close to them in decisions about their care, preferences and wishes.
- Adhere to infection control policies and guidance.
- Support the family and those close to the dying person.
- Look after your own well-being.
Applying the WHO principles of palliative care ensures support for both the person and their family. The principles are just as relevant for people dying from coronavius. Palliative care:
- provides relief from pain and other distressing symptoms
- affirms life and regards dying as a normal process
- intends neither to hasten or postpone death
- integrates the psychological and spiritual aspects of patient care
- offers a support system to help patients live as actively as possible until death
- offers a support system to help the family cope during the patient's illness and in their own bereavement
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
- will enhance quality of life, and may also positively influence the course of illness
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Coronavirus has meant that health and social care professionals need to provide end of life care on a much wider scale. In more acute circumstances, it requires rapid decision making and difficult conversations. Delivering personalised care requires kindness, compassion, respect, and dignity from everyone.
The key principles for care at end of life
Here is a summary of the key principles for care at end of life.
Sensitive communication ensures that the person and family understand what is happening and to discuss previous care plans that have been made. Cultural and religious needs will continue to be respected. If discussions around DNACPR (Do Not Resuscitate) or place of death have not taken place, they must be prioritised. Significant changes in the person's condition should be reported to the family. This is essential with someone who has coronavirus as deterioration may occur rapidly.
Ensure comfort and dignity
While there may be signs that the person is dying, the diagnosis must be made by the team caring for the person, and attempts to reverse any reversible causes of decline must have been considered or attempted. Non-essential medication should be discontinued, and the goals of care should focus on ensuring comfort and dignity in the dying phase.
A holistic approach to care
A continuous review of the person’s symptoms and needs, using a holistic approach to care, is required. This will help you to consider a person's physical, spiritual, emotional and social needs. ‘Just in case’ medicines should be prescribed. Family should be offered the chance to understand what to expect when their loved one is dying.
Support for family and loved ones
Family and loved ones must be supported during this stage and after the person has died. If relatives are not supported or the person is perceived not have a ‘good death’, the consequences of this can be far reaching.
National and regional guidance for end of life care
The UK's four nations have specific guidance for the last days and hours of life. This guidance aims to improve end of life care for people by communicating respectfully, and in a way that involves the person and the people important to them in key decisions.
England and Wales
The National Institute for Health and Care Excellence (NICE) have created Care of dying adults in the last days of life guidelines. Visit the NICE website for more information about these guidelines. For people in England, the Leadership Alliance for the Care of Dying People have also created guidance about improving people's experience of care in the last few days and hours of life.
The Scottish Government have produced Caring for people in the last days and hours of life guidance.
- Northern Ireland
The Department of Health in Northern Ireland have a guidance doc called Palliative and End of Life Care Strategy for Adults in Northern Ireland. The National Institute for Health and Care Excellence (NICE) guidelines are also used in Northern Ireland. Visit the NICE website for more information about the guidelines.
Ongoing assessment and management of pain and symptoms is important for all patients who are approaching the end of their life. This includes those with cancer or another life-limiting illness who develop coronavirus. People who develop coronavirus may decline rapidly over a number of hours, with symptoms including breathlessness, distress, delirium and fever.
A holistic approach to managing pain
Pain is subjective and there is enormous variation in how people feel, report and react to their pain. Pain is more than just a physical phenomenon. There are several factors that contribute towards the experience of pain, which is often referred to as 'total pain' (Saunders 1966):
A disturbance or disruption in the relationship between the person and their body.
A disturbance or disruption in the relationship between the person and their world including their family, work and society.
A disturbance or disruption in the relationship between the person and their emotions, or how they see themselves.
A disturbance or disruption in the relationship between the person and their beliefs and values.
National and regional guidance for managing pain
National and regional guidance on managing pain and symptoms has been developed in each of the four nations, some of which is coronavirus specific. You may have your own local guidance, which you should follow.
The National Institute for Health and Care Excellence (NICE) have created coronavirus specific guidance called Managing symptoms (including at the end of life) in the community. The Royal College of General Practitioners also has coronavirus specific guidance.
- Northern Ireland
The Northern Ireland Palliative Care Tools includes Guidance for the management of symptoms in adults in the last days of life.
Turas Learn, NHS Education for Scotland's platform for learning and support resources, includes palliative and end of life care resources. The Scottish Palliative Care Guidelines includes information for when a person is imminently dying from coronavirus.
Wales NHS have created coronavirus guidelines called Care decisions for the last days of life.
Having open and honest conversations about resuscitation (if appropriate) should be prioritised especially if a person is approaching the end of their life, whatever the cause. Here are some guidance documents:
- Discussing “Do not attempt CPR” decisions (NHS Health Education England)
- Resuscitation Council UK, Statement on COVID-19, CPR and Resuscitation (2020). Resuscitation Council UK is continuously monitoring new information as it becomes available, and will update their advice as developments unfold.
- General Medical Council (GMC), Treatment and care towards the end of life: good practice in decision making.
- Royal College of Nurses (RCN), COVID-19 Guidance on DNACPR and verification of death
- NHS Education Scotland (NES), Support Around Death, Cardiopulmonary Resuscitation of Adults. This resource also includes a Do Not Attempt Cardiopulmonary Resuscitation NHS Scotland Policy and Clinical Practice - video.
- Resuscitation and COVID 19 Resources: Decision Making. A useful collection of resources from Resusitation Council UK.
Support for friends, relatives and carers
When a person is in the last days of life, if possible, the family should be involved to make decisions about care. They should be prepared for the inevitability of death and what to expect as their family member deteriorates over their final days and hours of life. Family members and those closest to the dying person may express a wide range of emotions.
When a person is in the last days of life, if possible, those closest to the person should be involved in making decisions about care. Knowing what to expect as the person deteriorates over their final days and hours of life will hopefully help them prepare for the death. Those closest to the dying person may express a wide range of emotions. We have information to help people who care for someone who is dying.
Supporting someone with learning difficulties
Books Beyond Words is a UK charity that publishes picture stories for people with learning disabilities, their supporters, family and professionals. They have produced a guide to support people with learning disabilities when someone they love dies at this time of social isolation.
Visiting restrictions, as a result of coronavirus, often mean it's not possible for family and friends to be with the person at the end of their life. There are things health and social care professionals can do to help. You may consider:
- playing music that means something to the person
- relaying messages from the person's family and friends
- talking to the person about what matters most to them.
You may need to support family and friends by helping them to communicate using technology. This will help them to be involved in decision making, talk to the person and say goodbye. If difficult decisions need to be made, it is important to show compassion and understanding, while communicating honestly and sensitively.
Here are some resources that might help you support people who are dying and their loved ones.
- We have information for patients and loved ones about end of life and coronavirus.
- We have more information for healthcare professionals about coronavirus and difficult conversations.
- The National Bereavement Alliance also has a helpful guide called Keeping in touch when you can't be with someone who may die.
- The Centre for the Art of Dying Well at St Mary's University has advice about deathbed etiquette and coronavirus.
- NHS Scotland have created Caring for people who are dying and those close to them admist COVID-19 visiting restrictions.
Public Health England and the Scottish Government have produced guidance for professionals on how to care for the body of someone who has died and how to communicate with relatives and family at the time of and after death.
When someone dies, a Healthcare Professional is responsible for verifying or confirming that the person has died and must complete a formal checklist. There will be local or regional policies in place for verification / confirmation of death, which you will need to follow.
The following resources offer guidance:
- Care after death: Registered Nurse Verification of Expected Adult death (RNoVEAD) guidance (3rd Edition, 23rd April, 2020).
- Royal College of Nursing. Confirmation of verification of death by registered nurses (2016)
- Verification of death by a registered healthcare professional: Chief Nursing Officer Guidance (Scotland, 2017)
- Confirmation of Death Scotland: Guidance and supporting resources for practitioners undertaking the confirmation of death procedure in Scotland.
A doctor involved in the care of the person who has died will need to complete a medical certificate of the cause of death (MCCD), which the family take to the registration office to register the death. Below are some guidance documents for professionals.
- New process for certification of death (2020) as result of the UK emergency Coronavirus Act 2020.
- Death Certification arrangements in Scotland (2020)
- Guidelines for Death Certification in Northern Ireland (2019)
- Guidance to Medical Practitioners for Death Certification during the COVID-19 Pandemic. Letter from the Chief Medical Officer, Registrar General for Scotland and Keeper of the Records of Scotland, Crown Agent and Chief Executive of Crown Office and Procurator Fiscal Service and Police Scotland.
Guidance for managing a funeral during the coronavirus has been developed by NHS England to ensure that bereaved people are treated with sensitivity, dignity and respect and mourners and workers who manage funerals are protected from infection.
The National Association of Funeral Directors website has information on current legislation for funerals taking place during coronavirus restrictions.
The process for registering a death has changed under the Coronavirus Act. The funeral director is now able to assist with this and documentation can be submitted digitally. Burial and cremation are both still options and remain a matter of individual choice.
A funeral can be arranged over the phone or online. For people struggling with funeral costs, Down to Earth has helpful information, including a UK helpline for the public and information for professionals on how to refer a client.
We are aware you will have regional and local guidance in place for providing palliative and end of life care. Please continue to follow this, specifically in the context of coronavirus. We have listed some other helpful resources below.
- Six Steps to Success has a collection of coronavirus resources to help care home staff care for individuals approaching the end of life.
- This helpful video by Dr Paul Baughan provides guidance for health and care professionals to support people in Scottish care homes. Many of the principles apply to care homes across the UK. Note anticipatory care planning in Scotland is known as advance care planning in England, Wales and Northern Ireland.
End of Life Care Practitioners' Network
The End of Life Care Practitioners' Network has over 380 members. It provides a huge amount of support and resources and it is free to become a member.
If you would like to join, please email Sherree.firstname.lastname@example.org.
Resources for Scotland
- NHS Education Scotland provides an e-learning module for Palliative and End of Life Care and further resources for COVID19. Registration is not needed for the TURAS e-learning platform. Included is supporting material for staff to provide high quality end of life care to older people with complex healthcare needs, frailty and dementia across all care settings.
- Health Improvement Scotland IHUB provides information for those supporting people nearing the end of their lives.