End of Life Care: Advance Care Planning Facilitator Notes Welcome and Introductions - Facilitators introduce themselves to the group. Housekeeping Health and Safety Overview of programme for the morning Assessment ACP Recognising the dying phase LCP 1

Ground Rules Confidentiality Shared learning One at a time Respect one another’s opinions Positive critique Sensitivity Time-out Mobile phones/pagers off please Any more?........ 2

Learning Outcomes By the end of the programme the practitioner will be able to: Develop their knowledge and understanding of the concepts of Advance Care Planning and the Liverpool Care Pathway and their application to practice

Advance Care Planning 4

Advance Care Planning (ACP) What do you understand by the term advance care planning? What is the difference between advance care planning and care planning? How many of you have been involved in Advance Care Planning? Facilitator Notes On a Whiteboard write the feedback from the group Useful to know how many staff are involved in ACP as this may influence the level that the presentation is pitched at.

End of Life Strategy (2008) “All people approaching the end of life need to have their needs assessed and their wishes and preferences discussed.” Facilitator Notes Ask Participants Does this happen in practice? Facilitator emphasises that each person is an individual and as such may have differing needs

Advance Care Planning A process of discussion between the individual and their care providers, irrespective of discipline. Family/carers may be included if the individual wishes. It is a voluntary process. It is recommended that with the individual’s agreement this discussion is documented, regularly reviewed, and communicated to key persons involved in their care. County-wide ACP Document – ‘Planning for Your Future Care’ The document is held by the individual Facilitator Notes ACP may be instigated by the client or care provider and may be triggered by an event Remember to point out that some people will just not want to have a conversation about dying, ever. That is their choice and we should respect it. For them, it may be too closely linked with giving up hope. Also, we may not have all the answers but this should not make us afraid to ask. Facilitator shows a copy of the Local ACP Document ‘Planning for Your Future Care’   7

The discussion may include the individual’s Concern’s and wishes Values and goals of care Understanding of their illness and prognosis Preferences for care or treatment that may be beneficial in the future and the availability of these And usually takes place in anticipation of a deterioration in a person’s condition in the future where they are not able to make decisions and/or communicate their wishes

Why is ACP different to other planning ACP is undertaken in the context of an anticipated deterioration in the individual’s condition with the attendant loss of capacity to make or communicate decisions Killick et al.(2010)

Relevant Documents http://www.endoflifecareforadults.nhs.uk/eolc/acp.htm

Activity Split into 4 groups and take 15 minutes to discuss the following: In what situations in your practice may an individual wish to consider ACP? What considerations need to be taken into account when initiating a ACP discussion? What are the benefits and challenges that ACP presents If possible divide groups into their areas of work e.g.. Domiciliary care, care homes, D/N’s and hospital staff. Ask the participants to also think about there own practice and how ACP relates to the client group they have. Ask each group to feedback in turn on one of the questions (with question 2 invite responses from 2 groups) to the main group. Once feedback has been received then ask the rest of the group if they have anything further to contribute to the question being referred to. Highlight appropriate slide to summarise response 1. Life changing event – death of spouse Following a life threatening diagnosis Deterioration or significant shift in treatment focus During assessment of individuals needs Following multiple hospital admissions In case the unexpected happens Future planning 11 11

Situations in which an individual may want to consider ACP Life changing event – death of spouse Following a life threatening diagnosis Deterioration or significant shift in treatment focus During assessment of individuals needs Following multiple hospital admissions In case the unexpected happens Future planning

Considerations that need to be taken into account when initiating an ACP discussion Voluntary Respect that the client may not wish to confront future issues Client Centred Dialogue ? Family/ carer involvement in discussion. Who is the most appropriate to carry out this discussion?

P- prepare for the discussion Be prepared P- prepare for the discussion R- relate to the person E- elicit pt and carer preferences P- provide information A- acknowledge emotions and concerns R- realistic hope E- encourage questions D- document Know our own limitations and who to go to for advice or refer on

Appropriate communication skills Knowledge of support, services and choices available in the particular circumstances. The professional must have adequate knowledge of the benefits, harms and risks associated with treatment for client to make informed choice.

Choice of place of care and how that may influence treatment options Client has the Capacity to understand, discuss options available and agree to what is then planned

What are the benefits and challenges? Client centred approach Choices Empowerment Communication Confidence Documentation Hope Facilitator Notes Client centred approach – client may not be ready or want to talk about dying. Choices – may be available or limited. Place of care and death. Family and professionals will know what the client wants Communication – when to initiate the discussion. May be difficult for some clients, their family or professionals. Being sensitive Increase Confidence of clients that their wishes are known and being listened to. Giving them more control. Documentation is current and valid. Hope – ACP can enhance hope 17

National End of Life Programme Facilitator explains how this diagram demonstrates how Advance Care Planning incorporates Statement of wishes and preferences and Advance Decisions National End of Life Programme

Terms used within ACP What do you understand by the following terms? Advance Statement Advance Decision Lasting Power of Attorney Facilitator Notes If a participant refers to Living Will it is now a Advance Decision – formal, legally binding document which allows a individual to refuse certain treatments

Advance Statement Not legally binding A written record Reflects individual’s aspirations and preferences or general beliefs and aspects of life they value Helps staff in identifying how clients wish to be cared Can help if there is a need to act in the ‘best interest’ of the client Facilitator Notes An individual’s wishes and preferences will be very personal to them: They may reflect religious and spiritual beliefs They may reflect names of people they wish to represent them They may also reflect a chosen place of care, thoughts on treatment options, or basic concerns on practical issues Where they would want to live, how they would want to be cared for. The welfare of their family and children. Views about treatments How you might want spiritual /religious beliefs you hold reflected in your care The name of a person/persons you wish to act on your behalf at a later time Practical issues i.e. caring for your dog 20 20

Advance Decision Used to be called Advance Directive / Living Will An advance decision must relate to a specific treatment and specific circumstances Legally binding if valid and applicable to the circumstances It only comes into effect when the individual has lost the capacity to give or refuse consent.

Advance Decisions to Refuse Treatment ‘a decision you can make to refuse a specific medical treatment in whatever circumstances you specify’ Over age 18yr, has mental capacity Written or verbal Must be written/signed and witnessed if it includes a refusal of life sustaining treatment Should be guided by a professional with appropriate knowledge Only becomes active when patient loses capacity Applies only to a refusal of a treatment

It is not valid ….. If it is withdrawn by the individual who made it A Lasting Power of Attorney has been created subsequent to the advance decision The individual has done anything that is inconsistent with the advance decision. Does not apply to the specifically stated circumstances (Consideration may be given to long lapses of time during which medical treatment advances have been made.)

Relevant Documentation http://www.endoflifecareforadults.nhs.uk/eolc/acpadrt.htmlevant

Advance Care Planning and the Mental Capacity Act (2005) Advance Care Plans must meet the requirements of the Mental Capacity Act (MCA). Assumed to have capacity Supported to make own decisions, even if it is unwise Best interests Least restrictive of their rights and freedom Facilitator Notes Everyone must be assumed to have capacity to make their own decisions about care and treatment Individuals must retain the right to make what might be seen as eccentric or unwise decisions Individuals to be supported to make their own decisions – given all appropriate help before anyone concludes that they cannot make decisions for themselves Best interests – anything done on or behalf of people without capacity must be in their best interests Least restrictive of their basic rights and freedoms 25

Lasting Power of Attorney (LPA) LPA’s can Cover health and welfare decisions Be registered at any time and MUST be registered before they are used Attorney’s acting under LPA act in accordance with the principles of Mental Capacity Code of Practice. The Law Society (2010) Facilitator Notes The Mental Capacity Act covers the development of the LPA LPA is a legal document which states in writing who can make decisions for a person on their behalf if they lack capacity. Needs to be registered with the Office of Public Guardians before it can be used Personal Welfare LPA covers welfare, property, money. Can be extended to cover health It must be stated if the LPA has the authority to make decisions on life sustaining treatment. Decisions made in the ‘best interests’ of the individual Give handout on ACP flow chart 26

References Department of Health (2008) End of Life Care Strategy. London: DH Department of Health (2010) End of Life Care for All (e-ELCA), accessed on 01/12/2010 http://www.e-lfh.org.uk/projects/e-elca/index.html Henry, C. & Seymour (2008) Advance Care Planning: A guide for health and social care staff, Department of Health, accessed on 31/08/2010 http://www.ncpc.org.uk/download/publications/AdvanceCarePlanning.pdf Killick, S., Pharaoh, A. & Randall, F. (2010) Advance care planning in care homes, Palliative Medicine, Vol 24, No 4, pp. 445-446. The Law Society (2010) Assessment of Mental Capacity, Capacity to consent to and refuse medical treatment and procedures., Chapter 13, 3rd edition pp. 130-131. NHS Gloucestershire (2010) Planning for Your Future Care, Advance Care Planning.

Resources Advanced Care Planning- www.endoflifecare.nhs.uk Advance Decisions to Refuse Treatment- A guide for Health and Social Care Professionals- www.endoflifecareforadults.nhs.uk Good Decision Making-The Mental Capacity Act and End of Life Care- www.ncpc.org.uk National End of Life Care Strategy-www.dh.gov.uk/publications Planning for your Future-A Guide- www.ncpc.org.uk Preferred Priorities for Care-www.endoflifecare.nhs.uk

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