Day 1

 Housekeeping  Introductions  Ground rules

 Factors which influence and impact on us

 Hearing what THEY hear  Seeing what THEY see  Feeling what THEY feel Would you do it differently?

Baroness Neuberger (July 2013) There is no doubt that, in the right hands, the Liverpool Care Pathway supports people to experience high quality and compassionate care in the last hours and days of their life

But evidence given to the review has revealed too many serious cases of unacceptable care where the LCP has been incorrectly implemented. Examples include leaving patients without adequate nutrition, hydration and inappropriately sedated This is not only awful for the patients, but it is deeply distressing to their relatives and carers.

What we have also exposed in this Review is a range of far wider, fundamental problems with care for the dying –  a lack of care and compassion,  unavailability of suitably trained staff,  no access to proper palliative care advice outside of 9-5 Monday to Friday.

 Set up to lead and provide a focus for improving the care for this group of people and their families and carers  Followed the publication of the “More Care Less Pathway” report

Care Quality Commission (CQC)NICE (National Institute for Health and Care Excellence) College of Health Care Chaplains (CHCC)NHS England Department of Health (DH)NHS Trust Development Authority (NTDA) General Medical Council (GMC)NHS Improving Quality (NHS IQ) General Pharmaceutical CouncilNursing and Midwifery Council (NMC) Health and Care Professions Council (HCPC) Public Health England (PHE) Health Education England (HEE)Royal College of GPs Macmillan Cancer SupportRoyal College of Nursing (RCN) Marie Curie Cancer CareRoyal College of Physicians (RCP) National Institute for Health Research (NIHR) Sue Ryder Care

 Develop advice for professionals on individual care plans and other arrangements in place of the Liverpool Care Pathway;

 Looking at existing guidance, training and development,  then consider how these impact on the care of dying people and the circumstances that might affect the adoption of good practice

 5 priorities of care … RecogniseCommunicateInvolveSupportPlan and do

The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly.

Sensitive communication takes place between staff and the dying person, and those identified as important to them.

The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.

The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co- ordinated and delivered with compassion.

Discussions as the end of life approaches Assessment, care planning and review Coordination of care Delivery of high quality services in different settings Care in the last days of life Care after death Open, honest communication Identifying triggers for discussion Open, honest communication Identifying triggers for discussion Agreed care plan and regular review of needs and preferences Assessing needs of carers Agreed care plan and regular review of needs and preferences Assessing needs of carers Strategic coordination Co-ordination of individual patient care Rapid response services Strategic coordination Co-ordination of individual patient care Rapid response services High quality care provisions in all settings Acute hospitals, community, care homes, extra care housing hospices, community hospitals, prisons, secure hospitals and hostels Ambulance services. High quality care provisions in all settings Acute hospitals, community, care homes, extra care housing hospices, community hospitals, prisons, secure hospitals and hostels Ambulance services. Identification of the dying phase Review of needs and preferences for place of death Support for both patient and carer Recognition of wishes regarding resuscitation and organ donation. Identification of the dying phase Review of needs and preferences for place of death Support for both patient and carer Recognition of wishes regarding resuscitation and organ donation. Recognition that end of life care does not stop at the point of death Timely verification and certification of death or referral to coroner Care and support of carer and family, including emotional and practical bereavement support Recognition that end of life care does not stop at the point of death Timely verification and certification of death or referral to coroner Care and support of carer and family, including emotional and practical bereavement support

 Advance statement  Advance decision  Lasting power of attorney  Funeral arrangements

Advance care planning Advance statement What they do want Advance decision What they do not want

A requesting statement reflecting an individuals preferences and aspirations Formalise what the patients and their family do wish to happen, allowing them to fill clearer in their own mind Can be useful to clinicians in planning of patients individual care knowing how a person would like to be treated Not legally binding but can/should be used within best interest decisions May also need advanced decision and DNACPR

Preferred Priorities of Care (PPC) Say it once: my advance care plan “Thinking ahead” My Voice This is me…….. Advanced decision from specific groups such as MND Eliciting preferences form

 An advance decision must relate to a specific treatment and specific circumstances  Formalises what patients do not wish to happen giving them control  It will only come into affect when capacity lost  Legally binding document  Related to capacity of decision making, mental capacity act

Check.  Lasting power of attorney?  In health and welfare?  Can make decisions in life sustaining treatment?  Is it registered with the office of the Public guardian?  They maybe a deputy under the court of protection if they do not have capacity to appoint a lasting power of attorney.  They may have been appointed an agent by the department of work and pensions for bills etc.

 A lasting power of attorney (LPA) is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or make decisions on your behalf.  This gives you more control over what happens to you if, for example, you have an accident or an illness and can’t make decisions at the time they need to be made (you ‘lack mental capacity’).

 Be careful not to offer CPR as a treatment if not considered successful.  You are only getting preferences  If does not want CPR = ADRT or support process of uDNACPR with GP.

Purple Form - Who completes it? - Who owns it? - Where it is stored? - Document in patient’s notes Ensure it is communicated to all that needs to know

1.A CPR is unlikely to be successful  Clinician may fill would not benefit at all and could look at Elsie’s prognosis and situation as a 1A decision 1.BCPR may be successful………  Elsie has made it clear that she does not want CPR through ACP discussion so could be a 1b decision. 1.CDNACPR is in accord ………  Elsie could have a 1c decision if he completes his ADRT.

 When could you consider starting an advance care planning conversation?  What does an ADRT stand for?  Is an advance statement legally binding?  Do we have to prove we have capacity?  Is advanced care planning voluntary?  Who can complete a uDNACPR?

 Surprises you?  Frustrates you?  Worries you?  Comforts/ reassures you?  In groups consider… what can we learn from this? Can we change practice or even policy to support diversity or even individuality?

Support Involve

 Thoughts of the paperwork  Considerations…..