GP Palliative Care Registers QP Pathway

This document is a guide to support practices implementing a pathway change for GP Palliative Care Registers.

End of Life is a priority for the CCG and poor co-ordination of care is a cause of emergency admissions. Carers frequently tell us about poor coordination of care for people at the end of their life and within the new NHS outcomes framework one of the outcomes to be measured is carers’ satisfaction with their loved ones’ end of life care. It is also referenced in the Clear & Credible plan and Joint Strategic Needs Assessment.

The palliative care registers were introduced as a quality and outcome framework (QOF) measure to try to improve the care of people at the end of their life. General practices should have a register of all patients with supportive or palliative care needs. This identifies both cancer and non-cancer patients who may be in their last year of life.

Research and local experience tells us that the registers are used in very different ways within and between general practices. See information below.

The North East Strategic Health Authority (SHA) end of life clinical innovation team (CIT) has been working with a number of dedicated clinicians and IT experts to develop this ‘How to’ guide to try and make it easier for you to manage your register effectively.

This pathway change aims to go beyond standard QOF indicators to improve and standardise End of Life Care.

The next few sections lay out steps from the ‘How to’ guide’. Please see appendix 1 for relevant sections from the guide. Full guide is available on request.

Step 1managingyour palliative care register effectively

To ensure more chronic diseases are included on the register you may like to think about using the

“Would you be surprised if this patient died in the next 6-12 months?” question. Please refer to the surprise question briefing paper in section 6 of the ‘How to’ for more information.

One per cent of the English population dies each year, only 25 per cent die from cancer. Do you know who is most likely to die from your list in the next 12 months? It will be about one per cent of your patients; most of them will be elderly. Are they on your register? Have you created the opportunity to discuss their wishes with them? It will be a small investment of time now which could save you many frustrating conversations later this year as their unplanned admissions, falls and infections mount (Dying Matters Coalition).

The average life expectancy for people in a nursing home bed is less than a year so you might like to think about having a register that includes them. Many will already have had some kind of care planning done within their care home.

The gold standards framework (GSF) prognostic tool containing data about predicting mortality is given in Section 10 of the ‘How to’ guide..

The following table indicates the cause of death by percentage for some major diseases in the north east. To ensure fair access to palliative care services we suggest that you should be aiming for as close to these percentages as possible on your end of life register. This may require a step wise approach as most registers are currently dominated by cancer patients.

Step 2 Meetings

Monthly meetings are essential to discuss the palliative care needs of patients whose condition may

deteriorate rapidly with a corresponding impact on timely care planning. Suggested standard operating procedures for Meetings are in the ‘How to’ guide’.

Obviously, adding those people with chronic diseases to the register will make the register larger so you may like to think about a system to prevent your register becoming unmanageable.

You may like to introduce a traffic light system:

Red patients in the last few days of life

Amber patients in the last few weeks of life or who are deteriorating rapidly or very complex, should be discussed at monthly meetings

Green patients in the last year of life who are on the register and flagged in the notes.

Some practices just split the register into two and have an active and dormant part.

Step 3

It is essential that the patients who are on the register actually gain benefit from being on the register and that their management is discussed at the meetings.

It would be reasonable to expect that every patient on the register would have the opportunity to access the following:

  1. An opportunity to discuss what they want to happen when they deteriorate.

Deciding right is a document that encompasses an advance decision to refuse treatment, an emergency health careplan and a do not attempt cardio pulmonary resuscitation document. You may find these useful in your careplanning discussion – included in Section 5 of the ‘how to’ guide.

  1. Notification to out of hours (OOH) provider – we enclose a standard template which is available electronically and ispopulated by the discussions at the palliative health care team meeting.
  2. Consideration of a DS1500.
  3. Discussion at the practice meeting so that all members of the palliative care team are informed.
  4. If appropriate access to the Liverpool Care Pathway (LCP) at the end of their life.
  5. All this information can be recorded electronically in your records using the appropriate codes.

This will help with audit and in future with data extraction to transfer electronically between providers.

Step 4Sharing information

To maximise the potential of the register, information will clearly need to be shared between different providers of healthcare. The following suggested text has been approved by the information governance team to be incorporated into your practice leaflet and website to allow you to share patient information:

“Your confidentiality is very important to us. If you would like to know more about how we protect your information and how we share this information to support your healthcare, please look out for leaflets in the practice or ask at reception.”

An example of a standard ‘Keeping your confidence’ practice leaflet is given in section 8 of the ‘How to’ guide.

QP Suggested Evidence

Your practice may already have a template which you use for your Palliative care register and there are examples available in the full ‘how to’ guide, but implementation is not part of this scheme. These are some suggestions for gathering evidence of a change.

Number of patients currently on palliative care register (DN - could ask for %)
Proportion of non-cancers
Number of GSF / MDT palliative care meetings
Who attends the GSF / MDT palliative care meetings
How do you co-ordinate / share information?
Description of approach to GP palliative care registers and changes to practice