End of Life Care - The Importance of Advance Care Planning

1. End of Life Care - The Importance of Advance Care Planning • Lucy Sutton • Associate Director, End of Life Care Programme – NHS South Central

2. What does end of life care mean to you? What is your experience of end of life care?

3. Helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support. The definition of the beginning of end of life care is variable according to individual person and professional perspectives. For some the start may be at the time of diagnosis of a condition which usually carries a poor prognosis, for example motor neurone disease or advanced liver disease. For others it will be at a point when there is a deterioration in a chronic illness and it becomes apparent that the likely prognosis is measured in months or possibly a year or two. Alternatively, it could be an elderly person who is becoming increasingly frail and recognises that they need increased help to continue living at home, or makes the decision to become a resident of a care home or of sheltered or extra care accommodation.

4. 32,751 deaths per year • 20,943 (64%) hospital deaths • 2-3 admissions in year before death, 18 (6-40) days • 3886 (19%) had CPR • 54% complaints • £52.5m - hosp FCE ending in death • estimated £98m/yr on EOLC

5. END OF LIFE CARE PROGRAMME GOVERNANCE STRUCTURE SHA EXEC TEAM Katherine Fenton Programme Board Chair Katherine Fenton (SRO) Care Homes Project (housing and domiciliary care) DNACPR implementation subgroup Standards and Metrics work programme inc VOICEs Organ Donation subgroup and work programme inc public awareness Training and education subgroup inc elearning Commissioners/ QIPP subgroup Dementia and EoLC Clinical Leaders Network programme • Transition/ QIPP Subgroup Priorities: • Identification/locality registers • Assessment/Care planning/ACP • Enhanced community care model • Sustainability PCT EoLC Steering Groups Local Implementation Groups Palliative Care Network Groups

6. Timely end of life care which is planned, where possible and delivered by the appropriate person to meet the needs of the patient and family 24 hours a day. This care will respond flexibly and rapidly to changing need.

7. Training and communication Service Organisation, training and communication Registration Key Worker Establish Preferences ACP - Anticipate/ react to escalating needs Planning 24 hour care available LCP Regular review Effective 24/7 contact point Recognition Communication MDT Unified Assessment/ care planning Care After Death

8. Advance Care Plans • Advance care planning (ACP) is a key element of the End of Life Care (EoLC) Pathway and a key element of EoLC QIPP. • Early identification of potential patients and communication of this across settings and sectors • EoLC assessment and care planning • advance care planning for all high risk patients. • Enhanced community settings to support disinvestment in acute care. • Transition into new NHS Structures

9. "It is only by knowing people's wishes that we can put in place the services to ensure they are met."

10. Advance Care Plans-Costs to the System • On average a quarter of health care costs are consumed in the last year of life (Wanless) • If inappropriate admissions were reduced by 10%, and av LoS by 3 days, £104 million would be available to enhance community services • 40% of people dying in acute hospitals didn’t have medical need - £4.5 m over a year • £1m a year spent on resolving complaints • 59% of admissions from care homes could have been avoided • Futile and inappropriate treatments - *40% of resus inappropriate – cost to SCAS per person £642 (£334.610) with uDNACPR £256 (£133,376). Cost to acute £392 (£505,789) with uDNACPR £142 (£53,392) • Steep rise in the death rate • People dying at older ages with multiple co-morbidities including dementia, living alone • NAO estimated that 92% of deaths are predictable –evidence shows that only 27% of expected deaths on a EoLC register, and only 57% offered a discussion about their preferences.

11. What do you currently do as regards ACP?

13. It’s not easy to talk about end of life issues but it’s important to do. Now that we’ve put our affairs in order and talked about what we want, we can “put that in a box” as it were, and get on with living one day at a time, cherishing each day together, as I know it’s going to end one day”(Carer of patient with COPD).“If you talk about dying, you can say everything you want/need to. There are no regrets”. (Wife of man who died of cancer)“If you talk about it, you can make the most of life”.(COPD patient)“It’s normal – it’s going to happen to us all at some point!”(COPD patient)

14. How comfortable do you feel starting the conversation?

15. “ Would I be surprised if this person died within the next year?” • The need to have open body language. • Maintaining eye contact. • Asking open questions to explore worries. “Can you tell me how you are feeling?” “Is there anything you would like to discuss about the future?” These are very open questions and you may be surprised how willing people are to talk once the conversation is initiated. You should always give the resident the choice of whether they have the conversation in private just with yourself or with family/carer present. Often, once staff have built up the confidence to start the conversation they are surprised to find that the resident has been desperate for this conversation to happen for some time.

16. However there may be points at which the resident’s feelings, wishes and needs may require more probing. Some questions can help with this, such as: “What happened next?” “What else was happening?” If it does not feel right to use probing questions a good way to help people open up is to reflect back to them what they have said to then explore this further, such as: “So you mentioned the shock at hearing the news, what happened next?” “So you felt upset by the symptoms he was describing?”

17. If you are not sure you have correctly interpreted what they are saying then residents can find it reassuring if you check as this shows them you think they are important and worth listening to. “Am I right to think that you were confused by what the doctor told you?” There are certain times when you need a direct reply so it is best to ask a closed question, such as: “Do you want to be called if s/he deteriorates further?” Maintaining eye contact is important, sitting within a comfortable distance and having open body language i.e. hands by your side or on your lap. To show the resident, family/carer that what they are saying is important to you don’t change the subject, but instead, ask open exploratory questions, don’t give advice early but help them to explore their feelings and therefore formulate their own answers.

18. Advance Care Planning-Dementia • Both the End of Life Care Strategy and the Dementia Strategy emphasise care planning • The Dementia Strategy emphasises the need for early care planning for dementia patients • This will allow dementia patients to make choices in advance, if they wish • Advance Care Plans will help ensure that people receive the care they want, where they want it • The Dementia Strategy works on early diagnosis to lay the foundations for this to happen

20. How confident do you feel helping a resident with dementia advance care plan?How confident do you feel with the Mental Capacity Act?

22. A thought “If you don’t know where you are going, you’ll probably end up somewhere else” (Laurence J Peter, 1919-90, Canadian academic and expert on organised hierarchies, from his 1969 book The Peter Principle.)

23. NHS South Central Adult Advance Care Planning Toolkit This toolkit contains: 1. Details of the training available to support people in ACP. 2. Information for the public and for patients residents in the form of Planning for your Future Care which can be provided in GP reception areas, libraries, Citizens Advice Bureaus etc and more detailed information for patients for use during consultation with health and social care professionals will be available soon. 3. Information for health and social care professionals which includes a factsheet of the key points and process to follow and more detailed information on ACP and how to have the conversation. 4. Examples of different forms that can be used for ACP. 5. Signposting to further information around each of the aspects covered above. For more information on all eolc work in SC visit http://www.southcentral.nhs.uk/what-we-are-doing/end-of-life-care/

24. Who in your area do you think delivers end of life care? How do you think you might work with them/form links to help them improve their care and support them? • What are your three key learning points from the session? • What are you going to do to use these learning points to improve care?