Ground Rules

1. 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 LCPFacilitator 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

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

3. Learning Outcomes By the end of the programme the practitioner will be able to: Identify and describe the principles of good assessment in end of life care Develop their knowledge and understanding of the concepts of Advance Care Planning and the Liverpool Care Pathway and their application to practice Identify and recognise when a client is dying

4. Other End of Life Training Raising Awareness of EOLC Communicating with Confidence Symptom Control Supporting the Bereaved www.nhsglos.nhs.uk/content/services/eolc/documents/Calender.doc Facilitator Notes Refer to other training that is part of the End of Life Training and the training calendar where participants can access information and learning resources. Facilitator Notes Refer to other training that is part of the End of Life Training and the training calendar where participants can access information and learning resources.

5. Facilitator Notes Talk participants through the End of Life Pathway emphasising where assessment impacts on end of life care Key points Identification of the end of life phase – GSF The point at which dying is diagnosed Any other time the individual requests or the professional carer may judge as necessaryFacilitator Notes Talk participants through the End of Life Pathway emphasising where assessment impacts on end of life care Key points Identification of the end of life phase – GSF The point at which dying is diagnosed Any other time the individual requests or the professional carer may judge as necessary

6. Assessment Assessment is the gathering or exchange of information to make a decision or plan Assessment of needs and preferences is essential to end of life care Ensures the client receives the services, treatment and care they require Facilitator Notes Emphasise the skills required in completing an assessment – questioning, active listening, giving information, giving choice that assessment is required to assess people for their individual, family or carer and support requirements. Facilitator Notes Emphasise the skills required in completing an assessment – questioning, active listening, giving information, giving choice that assessment is required to assess people for their individual, family or carer and support requirements.

7. Assessment needs to be Holistic A continual process Client centred Accurate And involve Family/carers A Multidisciplinary Approach Facilitator Notes Facilitator explains why assessment needs to be holistic, a continuous process, client centred and accurate using the list below. Holism is a philosophy that involves the physical, social, spiritual and psychological domains which are interconnected to form a unified whole. One or more of these domains may be affected in clients who are requiring end of life care. Assessment is the basis of care planning, implementing and evaluating care and as such needs to be a Continual Process. An integral part of the care provided throughout the end of life care pathway. It can be undertaken both formally and informally Client centred is where the client is central to the assessment and the assessment is led by what is important to the client It needs to be accurate to ensure the client gets the appropriate care, management and treatment Facilitator Notes Facilitator explains why assessment needs to be holistic, a continuous process, client centred and accurate using the list below. Holism is a philosophy that involves the physical, social, spiritual and psychological domains which are interconnected to form a unified whole. One or more of these domains may be affected in clients who are requiring end of life care. Assessment is the basis of care planning, implementing and evaluating care and as such needs to be a Continual Process. An integral part of the care provided throughout the end of life care pathway. It can be undertaken both formally and informally Client centred is where the client is central to the assessment and the assessment is led by what is important to the client It needs to be accurate to ensure the client gets the appropriate care, management and treatment

8. Assessment Background information from documentation Assessment information and preferences Why is holistic assessment important? Incorporates 4 parts Encourages open dialogue Appropriate interventions Gain an understanding of issues/symptoms Reduce or alleviate issues/symptoms Improve Quality of Life Facilitator Notes In preparation for the first assessment the participant should record background information i.e. name, date of birth, telephone number, relevant clinical history, GP. Assessment information – Copies of previous assessments, reason for assessment, location of this assessment, communication requirements (language and/or impairments), any sensitivities (cultural/health), willingness for assessment, consent and would they prefer a family member or carer present. It incorporates the 4 parts that make a whole Encourages an open dialogue with the patient Provides appropriate interventions (i.e. medicines, therapies, support) To gain an understanding of the issues/symptoms that the illness is having on the patient and carer. To reduce or alleviate the issues/symptoms To improve quality of Life (Symptoms can become central to a clients life and as such can lead to negative coping strategies and poor quality of life)Facilitator Notes In preparation for the first assessment the participant should record background information i.e. name, date of birth, telephone number, relevant clinical history, GP. Assessment information – Copies of previous assessments, reason for assessment, location of this assessment, communication requirements (language and/or impairments), any sensitivities (cultural/health), willingness for assessment, consent and would they prefer a family member or carer present. It incorporates the 4 parts that make a whole Encourages an open dialogue with the patient Provides appropriate interventions (i.e. medicines, therapies, support) To gain an understanding of the issues/symptoms that the illness is having on the patient and carer. To reduce or alleviate the issues/symptoms To improve quality of Life (Symptoms can become central to a clients life and as such can lead to negative coping strategies and poor quality of life)

9. Holistic Assessment Groupwork Divide into 4 groups and take 15 minutes to answer the following questions related to 1 of the 4 parts of holistic assessment What is involved within this part of holistic assessment? What do you use to assess this part of holistic assessment within your area of work? Present the findings on a flipchart/sheet to feedback to the group Facilitator Notes Allocate each of the 4 groups one of the sections - physical, psychological, spiritual and social to focus on for their groupwork. Get each of the groups to present their feedback in the following order, Physical , Psychological, Social, Spiritual. After each presentation show the slide relating to that part and add anything further they may have missedFacilitator Notes Allocate each of the 4 groups one of the sections - physical, psychological, spiritual and social to focus on for their groupwork. Get each of the groups to present their feedback in the following order, Physical , Psychological, Social, Spiritual. After each presentation show the slide relating to that part and add anything further they may have missed

10. Physical This part of holistic assessment focuses on The patient’s physical symptoms How they function physically The affect these physical symptoms may have on the individual Facilitator Notes Emphasise how this part impacts on the Psychological, Social and Spiritual domains Assessment Communication - Interviewing Skills - Open and closed questioning, listening, language and words used, clarifying, probing, challenging, reflecting, establishing a rapport with the client Observation Examination Tools – Documentation – LCP, Nursing notes Pain assessment tools (Visual Analogue Scales, Body Diagrams, Faces. etc..) Emphasise how assessment incorporates other domains. Symptom Assessment tools (Edmonton Symptom Scale) Knowledge of Diagnosis and Past Medical HistoryFacilitator Notes Emphasise how this part impacts on the Psychological, Social and Spiritual domains Assessment Communication - Interviewing Skills - Open and closed questioning, listening, language and words used, clarifying, probing, challenging, reflecting, establishing a rapport with the client Observation Examination Tools – Documentation – LCP, Nursing notes Pain assessment tools (Visual Analogue Scales, Body Diagrams, Faces. etc..) Emphasise how assessment incorporates other domains. Symptom Assessment tools (Edmonton Symptom Scale) Knowledge of Diagnosis and Past Medical History

11. Psychological This part of holistic assessment focuses on Their mood and interest Symptoms of depression, anxiety, hopelessness How they are adjusting to/ coping with their illness, deterioration Facilitator Notes Emphasise how this part impacts on the Physical, Social and Spiritual domains Assessment Communication Skills - Open and closed questioning, listening, language and words used, clarifying, probing, challenging, reflecting, establishing a rapport with the client. Opening question - Is anything worrying you? Do you have any concerns, emotional concerns, distressing issues? Mood and interest During the last month, have you often been bothered by feeling down, depressed, hopeless? During the last month, have you often been bothered by having little interest or pleasure in doing things? Active enquiry re: Anxiety - – anxious, worried, fearful, panicky, restlessness Adjustment to illness Explore individuals knowledge and understanding of disease Identify unresolved concerns Can individual look and plan ahead Observation – how do they appear? Tools for formal screening of psychological distress– Distress Thermometer more holistic but does pick up on psychological, HAD Scale, Edinburgh Depression ScaleFacilitator Notes Emphasise how this part impacts on the Physical, Social and Spiritual domains Assessment Communication Skills - Open and closed questioning, listening, language and words used, clarifying, probing, challenging, reflecting, establishing a rapport with the client. Opening question - Is anything worrying you? Do you have any concerns, emotional concerns, distressing issues? Mood and interest During the last month, have you often been bothered by feeling down, depressed, hopeless? During the last month, have you often been bothered by having little interest or pleasure in doing things? Active enquiry re: Anxiety - – anxious, worried, fearful, panicky, restlessness Adjustment to illness Explore individuals knowledge and understanding of disease Identify unresolved concerns Can individual look and plan ahead Observation – how do they appear? Tools for formal screening of psychological distress– Distress Thermometer more holistic but does pick up on psychological, HAD Scale, Edinburgh Depression Scale

12. Social This part of the holistic assessment focuses on How they are managing at home Housing or home needs Work and finance Family and social relationships Social and leisure needs Future needs Facilitator Notes Emphasise how this part impacts on the Physical, Psychological and Spiritual domains Assessment Communication - Interviewing Skills - Open and closed questioning, listening, language and words used, clarifying, probing, challenging, reflecting, establishing a rapport with the client Tools – Genogram. Documentation – Nursing, Social (Faces, SACN), ACP and LCPFacilitator Notes Emphasise how this part impacts on the Physical, Psychological and Spiritual domains Assessment Communication - Interviewing Skills - Open and closed questioning, listening, language and words used, clarifying, probing, challenging, reflecting, establishing a rapport with the client Tools – Genogram. Documentation – Nursing, Social (Faces, SACN), ACP and LCP

13. Spiritual This part of holistic assessment focuses on Their faith Religious or non religious beliefs and values Life, personal or future goals The worries and challenges relating to their illness or deterioration and its impact on their faith or beliefs Facilitator Notes Emphasise how this part impacts on the Physical, Psychological and Social domains Assessment Communication - Interviewing Skills - Open and closed questioning, listening, language and words used, clarifying, probing, challenging, reflecting, establishing a rapport with the client. Allowing time Documentation – LCP, preferences and wishes ACP Questions you may ask when undertaking a spiritual assessment Do you have a particular religion? What is it called? Name of your faith leader and contact details? What do you personally believe? How has your illness affected your beliefs? (trying to pick up on distress indicated by a change in faith/beliefs) Are there religious items or requirements that you need to practice? Are there any requirements or restrictions related to your cultural or ethnic background or belief system? Is there anything that could help support you? Facilitator Notes Emphasise how this part impacts on the Physical, Psychological and Social domains Assessment Communication - Interviewing Skills - Open and closed questioning, listening, language and words used, clarifying, probing, challenging, reflecting, establishing a rapport with the client. Allowing time Documentation – LCP, preferences and wishes ACP Questions you may ask when undertaking a spiritual assessment Do you have a particular religion? What is it called? Name of your faith leader and contact details? What do you personally believe? How has your illness affected your beliefs? (trying to pick up on distress indicated by a change in faith/beliefs) Are there religious items or requirements that you need to practice? Are there any requirements or restrictions related to your cultural or ethnic background or belief system? Is there anything that could help support you?

14. What helps us in undertaking an assessment? Holistic, flexible approach Patient centred approach Being aware that the client may have limitations Client/Professional relationship Communication Skills Background information Documentation – assessment tools Time and privacy Consent Confidentiality Knowledge Facilitator Notes Explain to participants that some of these aspects have already been discussed – Holistic, client centred, communication skills, assessment tools However, it is important to emphasise that the client may be exhausted, weak and therefore not have the energy to participate and therefore assessments need to be completed efficiently and not be burdensome for the client. The assessment tool and the length of time it takes to complete needs to be considered. May not be practical to complete or in the clients best interests to complete a full holistic assessment all at once. Communication skills that would be useful – open and closed questioning, listening skills, reflecting, clarifying. Establishing a rapport with the client. What tools they use in practice in undertaking assessments – nursing documentation, pain assessment tools, symptom assessment tools, genograms etc… What background information would be useful to know – Diagnosis, prognosis, family set up and history, social circumstances. Lack of time and privacy may affect the assessment – influence of the setting. The assessment needs to be timely. Knowledge of the illness, prognosis, resources, tools availableFacilitator Notes Explain to participants that some of these aspects have already been discussed – Holistic, client centred, communication skills, assessment tools However, it is important to emphasise that the client may be exhausted, weak and therefore not have the energy to participate and therefore assessments need to be completed efficiently and not be burdensome for the client. The assessment tool and the length of time it takes to complete needs to be considered. May not be practical to complete or in the clients best interests to complete a full holistic assessment all at once. Communication skills that would be useful – open and closed questioning, listening skills, reflecting, clarifying. Establishing a rapport with the client. What tools they use in practice in undertaking assessments – nursing documentation, pain assessment tools, symptom assessment tools, genograms etc… What background information would be useful to know – Diagnosis, prognosis, family set up and history, social circumstances. Lack of time and privacy may affect the assessment – influence of the setting. The assessment needs to be timely. Knowledge of the illness, prognosis, resources, tools available

15. Common questions asked to assess symptoms How would you rate the intensity of the symptom? (use of visual analogue scale) How often does the symptom occur? (when it started, how it has progressed) What factors make it worse? What factors reduce or relieve the symptom? What medication has helped or not? What other interventions have helped or not? What words would you use to describe the symptom? Are there any other symptoms present and the extent of these? What do you feel is the cause of your symptom and why? What affect does this symptom have on your quality of life? How are you coping with the symptom? Facilitator Notes Briefly introduce slide in relation to symptom control for them to refer to to guide their assessment of symptomsFacilitator Notes Briefly introduce slide in relation to symptom control for them to refer to to guide their assessment of symptoms

16. End of Life Tools and Assessment Gold Standards Framework Advance Care Planning Liverpool Care Pathway How many of you have heard of or used these tools in your practice? Facilitator Notes By asking this question the facilitator is trying to ascertain the participants prior knowledge of GSF, ACP and LCPFacilitator Notes By asking this question the facilitator is trying to ascertain the participants prior knowledge of GSF, ACP and LCP

17. Gold Standards Framework – Prognostic Indicators Guidance to enable better identification of patients who may need supportive/ palliative care 3 Triggers for supportive/palliative care The Surprise Question ‘Would you be surprised if this patient were to die in the next 6-12 months’ Choice/Need Clinical Indicators Facilitator Notes Need to emphasise that the focus is more on improving prediction of need for support, rather than Pure prognostication of time remaining. 3 triggers – any combination of the following methods can be used to identify these patients 1. Surprise question – an intuitive question 2. The pt with advanced disease makes a choice for comfort care only not curative treatment, or is in special need of supportive/palliative care i.e. refusing renal transplant. 3. Clinical indicators - Co-morbidities or other General Predictors of End Stage illness. Facilitator Notes Need to emphasise that the focus is more on improving prediction of need for support, rather than Pure prognostication of time remaining. 3 triggers – any combination of the following methods can be used to identify these patients 1. Surprise question – an intuitive question 2. The pt with advanced disease makes a choice for comfort care only not curative treatment, or is in special need of supportive/palliative care i.e. refusing renal transplant. 3. Clinical indicators - Co-morbidities or other General Predictors of End Stage illness.

18. Advance Care Planning

19. 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.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.

20. 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 needsFacilitator Notes Ask Participants Does this happen in practice? Facilitator emphasises that each person is an individual and as such may have differing needs

21. 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’  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’  

22. 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

23. 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)

24. Relevant Documents

25. 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 planningIf 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

26. Voluntary and not the result of pressure from family/organisation Patient Centred Dialogue over a period of time. Care provider may pick up cues which indicate a desire to make wishes known. May want family/ carer involved in discussion. Needs to be handled sensitively on the part of the health and social care staff Who is the most appropriate to carry out this discussion? Being 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 Respect that the client may not wish to confront future issues Know our own limitations and who to go to for advice or refer on Appropriate communication skills by health and social care staff Knowledge of support, services and choices available in the particular circumstances. May need to refer on 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 3. Benefits and Challenges Benefits – Client centred, plan ahead, greater communication – open dialogue. Able to link/support people in earlier. These are also challenges Voluntary and not the result of pressure from family/organisation Patient Centred Dialogue over a period of time. Care provider may pick up cues which indicate a desire to make wishes known. May want family/ carer involved in discussion. Needs to be handled sensitively on the part of the health and social care staff Who is the most appropriate to carry out this discussion? Being 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 Respect that the client may not wish to confront future issues Know our own limitations and who to go to for advice or refer on Appropriate communication skills by health and social care staff Knowledge of support, services and choices available in the particular circumstances. May need to refer on 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 3. Benefits and Challenges Benefits – Client centred, plan ahead, greater communication – open dialogue. Able to link/support people in earlier. These are also challenges

27. 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

28. 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?

29. 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

30. 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.

31. 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

32. 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 hopeFacilitator 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

33. Facilitator explains how this diagram demonstrates how Advance Care Planning incorporates Statement of wishes and preferences and Advance DecisionsFacilitator explains how this diagram demonstrates how Advance Care Planning incorporates Statement of wishes and preferences and Advance Decisions

34. 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 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

35. 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 dogFacilitator 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

36. 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.

37. 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

38. 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.)

39. Relevant Documentation

40. 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 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

41. 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 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

42. Recognising the dying phase In pairs take 5 minutes to think about a client that you have cared for who was dying How did you know they were dying? What did you observe to indicate they were dying? Facilitator Notes Ask each pair to feedback one answer/observation to the main group. Participants may say the doctor told them. However it is important to tease out from them the signs and symptoms they may have observed with the client related to the dying phase. They may refer to the signs and symptoms in the weeks leading up to a clients death – weakness, disinterest, confusion, reduced appetite …………. Also may refer to criteria for commencing the LCP or signs and symptoms and signs and symptoms in last 24-48hours of death (Slides 43 and 44) Feedback responses to whole group – facilitator writes responses on whiteboard/flipchart Facilitator Notes Ask each pair to feedback one answer/observation to the main group. Participants may say the doctor told them. However it is important to tease out from them the signs and symptoms they may have observed with the client related to the dying phase. They may refer to the signs and symptoms in the weeks leading up to a clients death – weakness, disinterest, confusion, reduced appetite …………. Also may refer to criteria for commencing the LCP or signs and symptoms and signs and symptoms in last 24-48hours of death (Slides 43 and 44) Feedback responses to whole group – facilitator writes responses on whiteboard/flipchart

43. Recognising the dying phase Criteria for use of the LCP All possible reversible causes have been considered Multiprofessional team agreement 2 of the following may apply Bedbound Only taking sips of fluids Semi-comatose Unable to take oral tablets Facilitator Notes Some participants may add the following signs and symptoms which may indicate the client is entering the dying phase Deteriorating functional ability Increasing fatigue Loss of interest in food and fluids Increased symptomsFacilitator Notes Some participants may add the following signs and symptoms which may indicate the client is entering the dying phase Deteriorating functional ability Increasing fatigue Loss of interest in food and fluids Increased symptoms

44. Recognising the dying phase Skin Colour Changes Breathing Changes Cold extremities Restless Non responsive Facilitator Notes Skin colour changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish. Change in overall colour - paler Breathing changes - often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough. Cheyne stoking As circulation decreases extremities become colder May be restless or disorientated There are other factors that may indicate the dying phase e.g. low albumin, deteriorating liver/renal function which we would not normally test for in the dying phase however may be indicated in tests that have been done leading up to the dying phase. Facilitator Notes Skin colour changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish. Change in overall colour - paler Breathing changes - often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough. Cheyne stoking As circulation decreases extremities become colder May be restless or disorientated There are other factors that may indicate the dying phase e.g. low albumin, deteriorating liver/renal function which we would not normally test for in the dying phase however may be indicated in tests that have been done leading up to the dying phase.

45. Liverpool Care Pathway (LCP) What has been your experience of using the LCP in assessing the dying? Facilitator Notes By asking this question the facilitator is trying to gain an understanding of the knowledge base of the participants and focus the participants on the assessment aspect of the tool.Facilitator Notes By asking this question the facilitator is trying to gain an understanding of the knowledge base of the participants and focus the participants on the assessment aspect of the tool.

46. Case Study Alan is a 55 year old man. He has been married to Jane for 20 years and they have 3 children the youngest of whom is thirteen. Alan was diagnosed in August 2008 with carcinoma of the lung (non-small cell) with metastases in the right Adrenal gland and scalp. He has been gradually deteriorating over the last 6 months and the MDT now identify Alan as dying. He is commenced on the Liverpool Care Pathway.

47. What is the Liverpool Care Pathway (LCP)? The Liverpool Care Pathway is an assessment and care plan for patients who are dying A tool that transfers best practice from a hospice setting to other care settings It contains information to guide staff on the goals for high quality palliative care It helps staff to record clearly and simply the care that has been given and the observed condition of the patient

48. Who can use the LCP Any health and social care staff can use the LCP, including Doctors Community Nurses Social Care staff and other related agencies AHP’s Health Support Workers Marie Curie or Hospice At Home Nurses Ambulance Staff Hospital Staff Care Home staff It is a shared document Facilitator Notes The facilitator may wish to ask the participants Who completes the LCP in your area of practice? This will also demonstrate its use in different practice settings for example, acute, community, nursing home. Facilitator Notes The facilitator may wish to ask the participants Who completes the LCP in your area of practice? This will also demonstrate its use in different practice settings for example, acute, community, nursing home.

49. When is the LCP used? The LCP is used in the last few days/hours of life and for care after death The decision to start using the LCP will usually be made by the GP or Consultant, Qualified Nurse and other members of the care team (MDT decision) The patient and or the family should also be included in this decision

50. Overview of LCP Initial Assessment Front page Section 1 Ongoing Assessment Variance recording & reporting Multi-professional progress notes Care after Death Section

51. How to use the Liverpool Care Pathway Facilitator Notes Ask participants to refer to Alan’s LCP document as we go through the slides Facilitator Notes Ask participants to refer to Alan’s LCP document as we go through the slides

52. Page 1 Designed for 7 days Preferred Place of Death References Criteria for use

53. Page 2 Fill in black ink All personnel must complete Full name and signature

54. Section 1: Initial Assessment - Comfort measures Diagnosis and demographics For G.P to complete: Goal 1, 2, 3: DNAR policy - ‘Yellow Sticker’ Doctor’s signature and date Goal 3a: Nursing observations Goal 3b: Syringe Driver – Nurses or doctors signature and date Facilitator Notes It is important to emphasise to the participants the need to be aware of local policies for example, the DNAR policy may be different in another county Examples of Local Policies are: Gloucestershire care services - Allow a Natural Death (DNAR) Gloucestershire care services - Confirmation of Expected Death Policy Great Western Ambulance Services Procedure to Recognise Life Extinct Facilitator Notes It is important to emphasise to the participants the need to be aware of local policies for example, the DNAR policy may be different in another county Examples of Local Policies are: Gloucestershire care services - Allow a Natural Death (DNAR) Gloucestershire care services - Confirmation of Expected Death Policy Great Western Ambulance Services Procedure to Recognise Life Extinct

55. Section 1: Initial assessment (continued on Page 4) Goal 4: Communicate in English? Goal 5: Insight? Goal 6: Religious or spiritual needs? Goal 7: Communication of impending death? Goal 8: Family given information?

56. Section 1: Initial assessment (continued on Page 4) Goal 9: Is the G.P Practice aware of patient’s condition? Goal 10: Has the plan of care been explained and discussed? Goal 11: Understanding of planned care? If “No” to a GOAL then it is a VARIANCE Health Professional signature, title and date

57. Section 2: Ongoing assessment Pages 5 & 6 Patient problem/focus e.g. Pain, Agitation etc Goals highlighted with guidance points Other symptoms Record an “A” or a “V” on each visit Use of additional documentation e.g. Waterlow score Signature at bottom, date at top

58. Is the Goal a Variance or Achieved? Variance means a change in the patients goal. Variance is not a FAILURE! Record your reason for Variance, Action Taken and Outcome on “Variance Analysis Sheet” What is an “Achieved”? Not a signature! “A” or “V” please

59. Multidisciplinary Progress NotesPage 19 DNAR “yellow sticker” on Community LCP Not for recording a “Variance” or “Achieved” Records communication between the MDT to report care not identified in LCP Keep it brief! Facilitator Notes Facilitator needs to explain that the yellow sticker is usually within the medical notes in the hospital settingFacilitator Notes Facilitator needs to explain that the yellow sticker is usually within the medical notes in the hospital setting

60. Section 3:Care after Death Verification of Death Care after Death Health Professional Signature and date Facilitator Notes Explain to participants that verification of death needs to be completed by a Dr or by a qualified nurse who has an extended role in verification of expected death Ensure that all those who need to know about the death are quickly informed Person completing LCP Care after Death must notify MDT Identify key worker with MDT (LCP) Notification card of who will be in contact Refer to the Bereavement Guidance Tool ICS Code continues Provide Essential Information to the Bereaved Booklet - “What to do after a Death leaflet in England and Wales” (to support Goal 17) B.I.G.G Bereavement leaflet “After a Death -Grieving of the loss of someone” (to support the LCP Goal 18) If the bereaved individual prefers, this information can be supplied prior to the death GP should ensure prompt completion of all paperwork Show participants the ‘What to do after death’ and the GHNHSFT booklet What do you give out information wise to support the bereaved.Facilitator Notes Explain to participants that verification of death needs to be completed by a Dr or by a qualified nurse who has an extended role in verification of expected death Ensure that all those who need to know about the death are quickly informed Person completing LCP Care after Death must notify MDT Identify key worker with MDT (LCP) Notification card of who will be in contact Refer to the Bereavement Guidance Tool ICS Code continues Provide Essential Information to the Bereaved Booklet - “What to do after a Death leaflet in England and Wales” (to support Goal 17) B.I.G.G Bereavement leaflet “After a Death -Grieving of the loss of someone” (to support the LCP Goal 18) If the bereaved individual prefers, this information can be supplied prior to the death GP should ensure prompt completion of all paperwork Show participants the ‘What to do after death’ and the GHNHSFT booklet What do you give out information wise to support the bereaved.

61. Group work Scenario: you have just visited Alan for the first time and the only information you have is the LCP. Spend 10 minutes answering the questions on your sheet by using the LCP. Facilitator Notes Ask participants to word individually on this – 10mins to answer questions and feedback 5mins. Ask participants to read the LCP and complete the question sheets you have given out. Ask participants to call out the answers ensuring a different person answers each time. Facilitator Notes Ask participants to word individually on this – 10mins to answer questions and feedback 5mins. Ask participants to read the LCP and complete the question sheets you have given out. Ask participants to call out the answers ensuring a different person answers each time.

62. Can you answer the following questions? Who was involved in Alan’s care? What were Alan’s “physical condition” problems identified on the Initial assessment? Was Alan for resuscitation? Was Alan aware he was dying?

63. Did Alan have any spiritual or religious needs? Was Alan's family aware of the planned care? On the 8th January what problems were identified? When did Alan die and was it in his preferred place of care?

64. Care after Death Jane calls your office and asks if you are able to visit. She is very upset and says she thinks that her husband has died. You inform the GP who asks if you can visit to assess. On arriving at the house what do you do? What documentation/EoL tools can you use? What trust policies should you follow? Facilitator Notes Ask participants to identify on the LCP the section they/others need to complete (Section 3 Verification of death and Care after Death) to check out their knowledge of the LCP. Ask participants to identify the appropriate policy and procedures for their area of work Some participants may mention other documentation they may complete within their area of practice.Facilitator Notes Ask participants to identify on the LCP the section they/others need to complete (Section 3 Verification of death and Care after Death) to check out their knowledge of the LCP. Ask participants to identify the appropriate policy and procedures for their area of work Some participants may mention other documentation they may complete within their area of practice.

65. Care after Death Alan Dies-Your Response Reassure and support Jane and her family answering any questions they may have. Refer to Section 3 of the LCP Verification of Death and Care after Death. Confirm Alan’s death as set out in the trusts confirmation of expected death policy. Inform services involved in Alan’s care of his death. Other goals Facilitator Notes Facilitator refers to each of the goals within Section 3 highlighting the appropriate documentation (show a copy of the leaflet when you refer to it so that participant's can visualise the leaflets) Other information that may be relevant for participants LCP Care after Death Section Bereavement support may vary depending on the location of death Bereavement follow-up in the community Identify the bereaved Provide written information (LCP) Agree within MDT – key worker Telephone contact within 72 hours to acknowledge the bereavement Offer a visit at a mutually convenient date and time within one month of the death if appropriate (not classed as an equipment visit unless requested by NoK) Assess the need for Ongoing Support for those “at risk” Use tools to support the process Sign-posting (refer back to G.P/leaflet) All contact must be complete within six weeks of the deceased’s death Letter for those residing outside the area LCP resource pack Liverpool Care Pathway (LCP) LCP Guidance sheet LCP Leaflet – “coping with Dying – understanding the changes which occur before death” Booklet - “What to do after a Death leaflet in England and Wales” (to support Goal 17) B.I.G.G Bereavement leaflet “After a Death -Grieving of the loss of someone” (to support the LCP Goal 18) Notification card explaining standardised follow-up Letter of unresponsive contact/outside area Bereavement Record Tool Prompt sheetFacilitator Notes Facilitator refers to each of the goals within Section 3 highlighting the appropriate documentation (show a copy of the leaflet when you refer to it so that participant's can visualise the leaflets) Other information that may be relevant for participants LCP Care after Death Section Bereavement support may vary depending on the location of death Bereavement follow-up in the community Identify the bereaved Provide written information (LCP) Agree within MDT – key worker Telephone contact within 72 hours to acknowledge the bereavement Offer a visit at a mutually convenient date and time within one month of the death if appropriate (not classed as an equipment visit unless requested by NoK) Assess the need for Ongoing Support for those “at risk” Use tools to support the process Sign-posting (refer back to G.P/leaflet) All contact must be complete within six weeks of the deceased’s death Letter for those residing outside the area LCP resource pack Liverpool Care Pathway (LCP) LCP Guidance sheet LCP Leaflet – “coping with Dying – understanding the changes which occur before death” Booklet - “What to do after a Death leaflet in England and Wales” (to support Goal 17) B.I.G.G Bereavement leaflet “After a Death -Grieving of the loss of someone” (to support the LCP Goal 18) Notification card explaining standardised follow-up Letter of unresponsive contact/outside area Bereavement Record Tool Prompt sheet

66. Key points to remember The need for ongoing communication and ACP along the End of Life Care Pathway Ongoing assessment, care planning and review of the patient and family is essential Facilitator Notes Useful to point participants to the Communicating with Confidence Workshop to develop their communication skills Emphasise the importance of the continual need for assessment, care planning and review in the care of the dying patient.Facilitator Notes Useful to point participants to the Communicating with Confidence Workshop to develop their communication skills Emphasise the importance of the continual need for assessment, care planning and review in the care of the dying patient.

67. The Objectives of the End of Life Strategy (2008) are .... To increase public awareness To ensure that pain and suffering are kept to an absolute minimum To ensure access to physical, psychological, social and spiritual care To ensure that people’s individual needs are identified, documented, reviewed, respected and acted upon wherever possible To ensure that high quality care is provided in all care settings To ensure that carers are appropriately supported Facilitator Notes Highlight to the participants the objectives from the end of life strategy that are pertinent to assessment and promoting high quality care for all adults at the end of life. Facilitator Notes Highlight to the participants the objectives from the end of life strategy that are pertinent to assessment and promoting high quality care for all adults at the end of life.

68. 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 Ellershaw, J.E. and Ward, C. (2003) Care of the Dying patient: Last hours or Days of Life, BMJ, Vol 326, No 30, pp. 30-34. Ellershaw, J.E. and Wilkinson, S. (2003) Care of the Dying: A Pathway to Excellence. Oxford: Oxford University Press 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. Maher, D. and Hemming, L. (2005) Understanding patient and family: holistic assessment in palliative care, British Journal of Community Nursing, Vol 10, No 7, pp. 318-322.

69. References National End of Life Programme (2010) Holistic Common Assessment of Supportive and Palliative Care Needs for Adults requiring End of Life Care, accessed 22/11/2010 http://www.endoflifecareforadults.nhs.uk/assets/downloads/HCA_guide.pdf NHS Gloucestershire (2010) Planning for Your Future Care, Advance Care Planning. Roberts, D, Taylor, S., Bodell, W., et al. (2005) Development of a holistic admission assessment: an integrated care pathway for the hospice setting, International Journal of Palliative Nursing, Vol 11, No 7, pp. 322-332. Royal College of Physicians (2009) Concise guidance to good practice – a series of evidence based guidelines for clinical management- Advance care planning. National Guidelines. Wilson, E, Seymour, J. & Perkins, P. (2010) Working with the Mental Capacity Act: findings from specialist palliative care and neurological settings, Palliative Medicine, Vol 24, No 4, pp396-402.

70. 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 Guidance on Cancer Services-Improving Supportive and Palliative Care for Adults with Cancer- www.nice.org.uk Holistic Common Assessment of Supportive and Palliative Care Needs for Adults requiring End of Life Care- www.endoflifecareforadults.nhs.uk/publications/holisticcommonassessment 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 Liverpool Care Pathway- www.liv.ac.uk/mcpcil/liverpool-carepathway/