THIS PAGE IS INTENDED FOR PEOPLE WHO HAVE ATTENDED STUDY DAYS RUN BY PAUL SARTORI HOSPICE AT HOME.

If you would like any further information about study days, or the content of this page, please contact acp@paulsartori.org

General Guidance on ACP

• Legal
  • Mental Capacity Act – Code of Conduct.
  • Essex Chambers – an excellent website with updates on case law relating to the MCA
  • The Tracey Judgment – this is the actual legal judgment document for landmark DNACPR case.  Don’t be put off –  it’s quite readable once it gets going!
•  Professional 
  • Royal College of Physicians
  • Royal College of General Practitioners 
  • General Medical Council
  • Nursing and Midwifery Council.  There is no specific guidance, but many parts of the code (2.3, 2.4, 2.5, 4.1, 4.2 etc) relate to clinical decision making.  Point 4.3 specifically mentions mental capacity law.

 Local resources

•  Hywel  Dda University Health Board. 
  • This is a pack containing information, a Statement of Wishes and Care Preferences (SWACP) template and an Advance Decision to Refuse Treatment (ADRT) template.  We use this SWACP template for people who do not want to make an ADRT.  We do not use this ADRT template.
  • We use an alternative HDUHB template for people who want to make an ADRT.  It also has space to include wishes and preferences.  We find this format much easier to use.  We recommend amending the form itself to include name and DOB on each page.  This is an amended version of just the form, including a header.
•  Wales
  • Talk ACP website (featuring videos of Joy and Chris who have completed an ACP with the help of Paul Sartori Hospice at Home!)
  • Talk CPR website
  • The Palliative Care Matters website contains an enormous amount of very useful information about end of life care.  This includes an ACP section where you can look at and download documents in use across Wales and elsewhere
  • End of Life Delivery Plan. The Welsh Government’s aspirations for End of Life Care.  ACP features prominently.
  • The End of Life Care Implementation Board National Priorities 2017-2018 
• Paul Sartori Hospice at Home – PowerPoint Presentations
  •  Burdensome treatments.  This is a presentation  designed for lay people, to provide information and prompt discussion about the specific pros and cons of ‘burdensome’ treatments.
  • Decision Making Law relating to ACP 
  • What is ACP?
• Paul Sartori Hospice at Home – Documents
  • For SWACP and ADRTs we use HDUHB documents as detailed above.
  • Record of Best Interest DISCUSSIONS.  This is a template of our own design.  It aims to provide future clinical decision makers with background information that might be relevant to future treatment decisions.‘My future care and medical treatment’ Easy read PDF
  • Referral to the ACP service (PENDING  – being redrafted)
  • Fax to inform GP of a non-GP referral to the service
  • Fax to Inform GP of a discharge from the service
  • Fax to inform Out of Hours GP service of the existence of an ACP (in some cases we also inform WAST, using a similar template)
  • Sample completed documents – these can be found on our ACP page
  • Prompt sheet.  This is a document based on the HDUHB SWACP template, which suggests issues for consideration.   
  • Easy read booklet:  My future Care and Medical Treatment

 

Sources of specific information

• Clinically Assisted Nutrition and Hydration
  • The 2014 Cochrane Review –  a review of the evidence
  • This is a good UK discussion paper on clinically assisted nutrition in dementia
  • General Medical Council guidance
  • British Medical Association/General Medical Council/RCP – Joint  Guidance
  • An article from the Guardian about voluntary refusal of food and fluids (VROFF)
  • A discussion piece on VROFF from the University of Glasgow website

 

• DNACPR decisions    
  • ‘The 2014  ‘Joint Guidance’ document from the BMA, Rcn and Resuscitation Council
  • Joint NMC/Rcn statement 2017
  • The Resuscitation Council patient booklet on DNACPR
  • A WAST memo about the validity of different formats for, and copies of, DNACPR forms
• Office of National Statistics
  • The mortality figures are here.  The previous calendar year’s figures are published around November.  I have found the ONS really helpful and suggest calling them if you need any help.