This section reflects the issues likely to be of most concern to patients and their carers. These points are provided for use by health professionals when discussing management of deterioration with patients and carers and in guiding the development of locally produced information materials.

Publications from SIGN

SIGN plain language summaries of guidelines are documents that ‘translate’ guideline recommendations and their rationales, originally developed for healthcare professionals, into a form that is more easily understood and used by patients and the public. They are intended to:

  • help patients and carers understand what the latest evidence supports around diagnosis, treatment and self care
  • empower patients to participate fully in decisions about management of their condition in discussion with healthcare professionals
  • highlight for patients where there are areas of uncertainty.

The plain language summary of this guideline is available from the patient publications page of the SIGN website.

Sources of further information



Kemp House, 152–160 City Road, London EC1V 2NX

Tel: 0300 302 0121



ICUsteps is a charity run by former intensive care patients and their relatives. They aim to improve the care and support available to people recovering from critical illness during their recovery.

NHS 24

Tel: Freephone 111


NHS 24 is an online and out-of-hours phone service providing the Scottish people with access to health advice and information 24 hours a day, 365 days a year.

Breathing Space

Tel: 0800 838 587


Breathing Space is a free confidential phone and webchat service for anyone in Scotland over the age of 16 experiencing low mood, depression or anxiety.

Health in Mind

40 Shandwick Place, Edinburgh EH2 4RT

Tel: 0131 225 8508



Health in Mind is a mental health charity that offers a pathway of services to support people with a range of mental health problems. They offer support over the phone, online or in person either individually or in a group setting.

Mental Health Foundation

McLellan Works, 1st Floor, Suites 1–4, 274 Sauchiehall Street, Glasgow G2 3EH

Tel: 020 7803 1100 (London Head Office)



The Mental Health Foundation is a UK-wide charity, focusing on a public mental health approach to prevention and finding solutions to mental health issues to provide a mentally healthy society for all.


Brunswick House, 51 Wilson Street, Glasgow G1 1UZ

Tel: 0344 800 0550



Scottish Association for Mental Health is a mental health charity, operating over 70 services in communities across Scotland. They provide mental health social care support, amongst other services.

Useful resources for healthcare professionals

Effective Communication for Healthcare (EC4H)

Home — EC4H

Scotland’s leading NHS communication programme provides a range of resources on effective clinical communication.

Supportive and Palliative Care Indicators Tool (SPICT)

SPICT – Supportive and Palliative Care Indicators Tool

SPICT helps identify people with deteriorating health due to advanced conditions or a serious illness, and prompts holistic assessment and future planning.

Useful resources for healthcare professionals, patients and families


ReSPECT Resources | Resuscitation Council UK

The ReSPECT process creates personalised recommendations for a person’s clinical care and treatment in a future emergency in which they are unable to make or express choices. These recommendations are created through conversations between a person, their families and their healthcare professionals to understand what matters to them and what is realistic in terms of their care and treatment. ReSPECT provides a range of resources to support patient decision making.

Checklist for provision of information

This section gives examples of the information patients and carers may find helpful at the key stages of the patient journey. The checklist was designed by members of the guideline development group based on their experience and their understanding of the evidence base. The checklist is neither exhaustive nor exclusive.

Planning and decision making

• Healthcare professionals should give information that patients and families can understand to help them participate in decision making.

• Options for treatment and care, including a focus on symptom management, should be discussed with patients and families.

• Explain to patients and families the escalation of care procedure in their particular healthcare setting (acute hospital, community care facility and general practice) if monitoring highlights that their health is worsening.

• Any information given to patients and their families should take into account any religious, ethnic or cultural needs they have. Any additional factors, such as physical or learning disabilities, sight or hearing difficulties or difficulties reading or speaking English, should be taken into account.

• Manage family expectations surrounding the patient’s care and timelines and allow time to answer questions they may have.

• Where a patient or family refuses treatment, alternative approaches should be explained.

• If relevant, explain why the patient might be moved to a different centre or hospital.

• Where the patient is dying explain to them and their family that intervention has the potential to be of low benefit or harmful.

• Information should be consistent and full at all times.

Recognition of clinical deterioration

• Explain to patients and families how the patient will be monitored and cared for should their health become worse.

• Ask for the opinions of patients and their families when assessing clinical deterioration. These conversations should not happen in the admission units.

• Discuss treatments with patients and their families and make sure they are provided with details of benefits and risks of different treatments.

• Discuss written monitoring plans with patients and their families, explaining which physiological observations should be taken and how often.

• Ask patients and families about mental health issues or deterioration and offer advice on where they can access support.

• Explain how a treatment escalation plan and anticipatory care plan can help guide decisions about treatment and care, including when a patient is deteriorating and dying.

• The above information should be repeated as necessary.

Suspicion of sepsis

• Offer a calm and clear explanation of sepsis and emphasise that it is not necessarily fatal if the patient has it.

• In patients who are prescribed antimicrobials, explain the timelines for administration.

Response to deterioration

• Explain that there will be a structured response and what this involves.

• Where the patient is at the end of life, explain to them and their family that intervention has the potential to be non-beneficial or even harmful.


Editorial Information

Last reviewed: 22/06/2023

Next review date: 22/06/2026

Author email(s): catriona.vernal@nhs.scot.