Recording and sharing advance care plans

Learning objectives

At the end of Unit 4, you will:

  • Understand how advance care plans are recorded
  • Understand how advance care plans are shared
  • Understand the importance of keeping advance care plans up to date

NB: Whilst not all health care providers will be directly involved in recording, sharing and updating advance care plans, it is valuable for all to be aware of the processes involved.

  • Reflective activity: Take a few minutes to think about how, and where, advance care plans are currently recorded and shared in your work setting. How easy is it to locate advance care plans? If you are unsure, who could you ask?

Recording Advance Care Plans

Following an advance care planning conversation, you will need to record the decisions and plans that have been made for the individual’s care.

You can download these items as a PDF to use as a check list if required.

What to record?

It is important to record any decisions, wishes or preferences that individuals and family / carers have made regarding future care. This includes information about any of the items covered in Unit 2, for example Statement of wishes and preferences for future care; Do Not Attempt Cardiopulmonary Resuscitation (DNACPR). These preferences may have been expressed during informal day-to-day conversations with the individual or family / carers or during a planned advance care planning meeting.

It is also important to record any worries or concerns that individuals or family / carers have, or any areas where decisions are not final, for whatever reason, and will need to be considered or discussed further at some point in the future.

How to record?

Advance care plan decisions, preferences and wishes should always be recorded within professional guidance and standards and local policies and procedures.

Detail: When recording the advance care plan, give as much detail and information as possible but be clear and unambiguous. Some decisions may need to be legally recorded through an Advance Decision to Refuse Treatment (ADRT) and/or Power of Attorney

Document the dates of conversations, who they were with and by what means face to face, digitally phone or email. There will be policies and procedures in your work setting about how to record this information. It is important you are aware of these and work within them.

Where to record?

The recording and storing of an advance care plan will be different in different settings dependent on an organisation’s care record system. This may be a paper patient record, often referred to as the patient notes or record, an Electronic Patient Record (EPR) or a combination of both. It is important that you are familiar with your workplace patient record system.

The information recorded in an advance care plan should be easily accessible to a range of multi-disciplinary health and care professionals but sharing information can be challenging and difficult for a number of reasons. Work is progressing towards the implementation of Electronic Palliative Care Coordination Systems (EPaCCS) in England. This work continues and you can make yourself familiar with progress in your area.

Want to learn more?
For further information on documents used for recording advance care planning decisions you might like to watch the video here. This video was designed for use in Care Homes but is applicable to other settings

  • Takeaway activity
    Discuss with a relevant member of staff where advance care plans are kept for individuals in your work setting. Which health and care professionals can access different electronic systems? How can you ensure paper and electronic advance care plan records are maintained and updated?

Sharing Advance Care Plans

An advance care plan should follow an individual throughout their care journey.

Sharing advance care plans with all of the necessary health and care professionals, will increase the likelihood of the individual’s preferences and wishes being realised as far as possible.

Consent is needed from the individual before sharing an advance care plan. Sometimes it may be necessary to share advance care plans without documented consent, if this is in the best interests of the individual. You need to be familiar with the policy for this within your own work setting or seek advice from a more senior member of your team.

The advance care plan should be shared with all involved with the individual’s care including:

The individual

Family / Carers

Community provider

Out of hours healthcare provider

Emergency care providers

GP practice

Other attendees present during the advance care planning discussion

  • Reflective activity:
    Which local services and organisations would you need to contact for each of these categories? Are there other partners you work with who should also be included?

Updating Advance Care Plans

  • Activity: Can you think of circumstances that would require an individual’s advance care plan to be updated?

As we know, life can be very unpredictable. Because of this, it might be necessary to refresh or update the advance care plan if circumstances change. Here are some occasions when it may be necessary to consider amending an individual’s advance care plan:

  • if the wishes or preferences of the individual or family / carers change, for example what treatment they might like to receive
  • if the circumstances in the family change, for example a different key contact becomes more appropriate
  • if the health of the individual changes or deteriorates suddenly
  • if the cognitive capacity of the individual changes or fluctuates
  • if local policies, procedures or guidance changes
  • if an individual is clearly entering the end of life stage, it is always appropriate to review their advance care plan with the dying individual and/or family / carers
  • Key point
    If changes are made to advance care plans, they need to be updated across electronic care records and paper systems. This means the updated version should be shared with the health and care professionals outlined previously. Outdated copies of the advance care plan should be archived or destroyed and replaced with up-to-date versions which are clearly numbered and dated. However, as mentioned above, different organisations will have different systems and processes to allow sharing of information. You should familiarise yourself with your own organisations' systems and processes.