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.