1. Guidance notes. Social care (Adults, England) Knowledge set for end of life care. (revised edition, 2010) What are knowledge sets?

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1 Social care (Adults, England) Knowledge set for end of life care (revised edition, 2010) Part of the sector skills council Skills for Care and Development 1. Guidance notes What are knowledge sets? Knowledge sets are sets of key learning outcomes for specific areas of work within adult social care. They are designed to improve consistency in the underpinning knowledge learnt by the adult social care workforce in England. It is intended that the key learning outcomes within each knowledge set will be used by employers to develop in-house learning and by training providers, publishers and awarding bodies to produce learning programmes, resources (CD-ROMs, videos, workbooks) and, potentially, awards. The key learning outcomes are intended to provide minimum standardised outcomes that employers may use either to produce their own in-house learning or learning packages, or as a benchmark when buying in learning provision or learning packages. Knowledge sets are written in a particular way to ensure that each learning outcome can be identified. However, learning programme writers may choose to produce learning programmes or learning sessions where the outcomes are in a different order to that presented here, or in a more integrated way. The learning outcomes are intended as a minimum. Further outcomes should be added to meet needs specific to workplaces and to people who use services. Why were knowledge sets commissioned? The amount and complexity of underpinning knowledge required by adult social care workers has long been unclear. The concept of knowledge sets came from a need to help employers understand the amount and complexity of underpinning knowledge required to deliver a gold star service to people who use services and to their carers, e.g. families and friends. In addition to the Skills for Care Common Induction Standards, and the Health and Social Care national occupational standards (NOS the standards that underpin the NVQs), the knowledge sets provide a consistent guide to the underpinning knowledge required to assist employers to ensure that workers in a range of work settings have sufficient knowledge and understanding to meet the needs of people who use services and of carers. The development of knowledge sets is designed to empower employers to produce appropriate in-house learning sessions for their workers or to buy in learning with some degree of confidence about what will be included in the learning packages. The knowledge sets facilitate consistency in learning packages produced throughout England so that employers can have greater confidence about the learning that employees transferring from other organisations and other regions may have received. How and when might knowledge sets be used? Knowledge sets are designed to be used separately or alongside the Common Induction Standards and as part of a worker s continuing professional development. Their aim is to Knowledge set for end of life care (REVISED 2010), p.1

2 provide specific standardised knowledge and understanding to help social care workers undertake their role. The knowledge sets have been mapped to the: Common Induction Standards Health and Social Care NOS at levels 2, 3 and 4 General Social Care Council (GSCC) Code of Practice for social care workers. In addition, this knowledge set is a revision of an earlier one specifically in order to be consistent with the Common Core Principles and Competences for End of Life Care. It is important to note that this mapping is not absolute. As a result, this End of Life knowledge set may also provide underpinning knowledge to other Health and Social Care NVQ units. This set also took into consideration the Common Core Principles for Self Care. These were developed to: empower people to make informed choices to manage their condition and care needs more effectively communicate effectively to enable people to develop and gain confidence in their self-care skills enable and support people to use technology as part of self-care enable and support people to develop skills in self-care enable and support people to participate in service planning and to access support networks. Where and how will knowledge sets be undertaken? The employer and employee will decide the most suitable method of undertaking this learning in line with the needs of the service and the people who use it. Employers may choose to offer knowledge sets delivered in-house by their own trainers or on the premises of external learning providers. They may use specialists in the field in the delivery of some learning. Who will use knowledge sets? Employers will use knowledge sets to provide knowledge and understanding in particular subjects for their workers so that the service benefits from: essential learning for specific tasks enhanced worker practice staff being supported to complete their NVQs by a systematic approach to underpinning knowledge. Social care workers will use knowledge sets to: assist their development of new skills to open up career options and as part of their continuing professional development improve self confidence support transition between different service settings in the social care sector ensure that they are working in accordance with current good practice. Professional language or correct terminology has been used. Knowledge sets have been written primarily for employers rather than for individual learners. Knowledge set for end of life care (REVISED 2010), p.2

3 Learning providers, publishers and awarding bodies will also use knowledge sets in the design of training programmes, materials and awards. Service setting and role The knowledge sets contribute to the continuing professional development of workers in a wide variety of settings, and they are therefore not service specific. Learning programme writers and learning providers can use the knowledge sets as a framework of minimum underpinning knowledge when they are developing customised learning provision appropriate to a particular learner or type of learner and to a particular service provision. The term learner here includes both paid and unpaid staff, carers or family members, friends and others interested in learning about a specific subject area. Lists used within the key learning outcomes The learning outcomes have been expanded from single statements to include specific guidance to the learning programme writers or learning providers. The lists are not exhaustive and are included as examples. They may be expanded upon to suit specific service areas and learners. In addition, the meanings of key words and concepts included within the learning outcomes have been listed at the end of each knowledge set. Using current legislation and guidance Legislation and guidance is constantly being amended or added to and it is very important that learning providers refer to the most recent legislation and guidance applicable to any given knowledge set when developing programmes or materials. Values statement The key purpose identified for those working in health and social care settings is to provide an integrated, ethical and inclusive service, which meets agreed needs and outcomes of people requiring health and/or social care. Topics covered by knowledge sets Infection prevention and control Dementia Medication Workers not involved in direct care Nutrition and well-being Safeguarding vulnerable adults Supporting people who have a learning disability or an autistic spectrum condition. The future of knowledge sets At the time of the revision of this knowledge set, in late 2009 and early 2010, Skills for Care was also working on the units for the Qualifications and Credit Framework (QCF) in social care, which will replace the NVQs and other learning units. In due course, the QCF units will also Knowledge set for end of life care (REVISED 2010), p.3

4 replace the knowledge sets, at which time the knowledge sets will be withdrawn from our website. Knowledge set progress logs In addition to the knowledge set documents themselves (such as the present document), older knowledge sets each had also a progress log edition. Both types of document are freely downloadable at (see Developing skills/knowledge Sets). In view of the impending replacement of knowledge sets by QCF units, more recent knowledge sets do not have progress logs. Published by Skills for Care, part of Skills for Care and Development, the sector skills council for social care, children and young people. Albion Court, 5 Albion Place, Leeds LS1 6JL Skills for Care, 2010 This material may be copied, with due acknowledgement of its source, for the promotion of social care workforce development. Knowledge set for end of life care (REVISED 2010), p.4

5 2. Learning outcomes 1. Overarching values, principles & knowledge EOL Common Core competences (Key themes) Learning outcomes 1.1 Awareness of self Be aware of how your own work and personal experiences can impact on your performance. 1.2 Developing yourself as a worker 1.3 Understanding legislation and policy 1.4 Practising dignity and respect Understand your own limits with regard to working in the end of life care field Be aware of, know how to access, and use appropriately the staff support systems in your workplace, including supervision and staff care teams if available Be aware of different values and spiritual beliefs and ensure that you are working within those of the individual, not your own Understand the importance of support for the individual to make the choice about where they want to die and the role that your feelings should play in this decision Be aware of the need to develop your own skills in end of life care Be aware of some of the tools, frameworks and care pathways which can be used to provide good end of life care Understand the local processes to identify your learning needs and ways of meeting these Be aware of legislation and local policies in respect of equality, diversity, discrimination, rights, confidentiality and sharing of information when supporting an individual through end of life care Understand the organisation s policies and procedures or ways of working and how to apply them with regard to people who are at the end of life Understand the importance of respecting an individual s dignity Understand how to reduce feelings of isolation for individuals and family members by encouraging them to communicate with each other, so the person at the end of life does not feel a burden Know the importance of individuals privacy being respected during intimate care; for example, they may not wish to use a commode but would rather be assisted to the bathroom Know how each individual prefers to be addressed and referred to by staff Know how to ensure that individuals do not feel rushed in any aspect of the care you are providing, e.g. moving, eating, drinking, intimate care Understand the importance of the individual retaining their sense of hope for the future within the context of end of life care, whatever that means for them or their families (hope in terms of being realistic about what will happen and how it will happen). Knowledge set for end of life care (REVISED 2010), p.5

6 1.5 Advocacy Understand the benefits of advocacy for those who do not have family or friends to support them Understand the importance of additional time being given to those who do not receive visitors Understand the importance of treating people as individuals Know how to discuss with the individual the possibility of arranging for a befriending service to visit them Understand the extent to which your role allows you to advocate for an individual Understand the roles of court-appointed advocates in respect of Mental Capacity Act (or legislation specific to your country) where applicable Understand the role of lasting powers of attorney for health and welfare decisions for individuals who can no longer give consent. 1.6 Equality and diversity Understand the importance of ensuring that all individuals have equal access to the assessment process, taking into consideration language (especially where English is not the first language) and language difficulties, learning disabilities, hearing loss. 1.7 Safeguarding Please see the knowledge set on safeguarding vulnerable adults for more in-depth information 1.8 Vulnerable adults at risk Understand the value base of care (identity, dignity, respect, choice, independence, privacy, rights and culture) Understand the importance of the individual s personal beliefs including spiritual beliefs, emotional needs and preferences Understand how to be responsive and flexible, taking account of the individual s changing needs as their illness progresses Know how individuals can access specialist services or organisations specific to their illness Understand the need to protect individuals from injury Understand the need for staff awareness and training Understand the importance of involving family and friends Be aware of the appropriate and safe use of assistive technologies (pressure mats, door alarms, etc.) Be aware of factors that may contribute to an increased risk of falls Be aware of indicators to look for should an individual die, in case an investigation is required Understand the need to safeguard individuals from abuse and harm Be aware of your organisation s policies and procedures with regard to safeguarding vulnerable adults and how to apply them in practice Be aware of the different forms of abuse, e.g. physical abuse, sexual abuse, emotional abuse Understand the signs and symptoms of abuse Understand what you should do if you suspect abuse know who is the appropriate person to speak to Understand that your first responsibility is to the individual in this situation. Knowledge set for end of life care (REVISED 2010), p.6

7 2. Communication EOL Common Core competences (Key themes) 2.1 Communication principles 2.2 The professional relationship roles and responsibilities 2.3 Providing accurate and relevant information Learning outcomes Understand the importance of communicating, reporting and recording effectively in the care environment Understand the need for positive and effective communication with the individual who is considering the end of their life Understand the importance of listening to what an individual is saying to you, to ensure individuals feel valued and fully involved in the decision-making process about their care Recognise that the individual s feelings and behaviour will often be linked directly to their illness and their need to communicate about it Understand that the individual s body language is often a key indicator in what they are communicating Understand principles and practices relating to confidentiality Understand that significant news should normally only be communicated by a senior member of staff however, this should not limit your communication with individuals Be aware of the boundaries of your role, know how to communicate this to others Know what is an appropriate professional relationship with an individual that is based on trust and honesty within the constraints of your job role Know how to develop a professional working relationship with friends and family members in order to support them Be aware of alternative choices of people for the individual to talk to; e.g. when considering spiritual or pastoral needs this could include offering to contact a minister of the individual s faith, if any Understand your level of responsibility and when to refer to a more appropriate person for information Recognise that more informed individuals are more empowered people Understand that individuals need access to good quality and comprehensive information they can understand, as and when they want it Have knowledge of local services appropriate for the individual Be aware of how to provide information about services and support networks that are available to individuals, their families and friends Know how to offer written (or alternatively formatted) information and ensure it is in a language and format appropriate to the person receiving it. Knowledge set for end of life care (REVISED 2010), p.7

8 2.4 Recording practices Know the importance of recording and communicating any significant conversations with an appropriate level of detail. 2.5 Supporting the individual and their family and friends Distinguish between subjective and objective language, fact and opinion Know what constitutes clear, objective statements in care plans, reports, daily logs, handover reports, etc Understand the importance of using appropriate language and avoid the use of negative statements and language when describing a person approaching the end of life Have an understanding of a person-centred approach to support and care for individuals who are at the end of life Understand the need to support and work with family and friends of the individual Know how to ensure family members are supported from diagnosis to the end of the individual s life and beyond Understand the importance of involving family members in the decision making process (within agreed limits or if the care plan names them). 3. Assessment and care planning EOL Common Core competences (Key themes) 3.1 Roles and responsibilities Learning outcomes Understand the roles, responsibilities and boundaries of individuals and how team-work and support can lead to better support of individuals approaching the end of life Understand the roles and responsibilities of services and organisations in relation to end of life care Undertake/contribute to multi-disciplinary assessment and information sharing. 3.2 Assessment methods Understand the range of assessment tools, their advantages and disadvantages Understand the nature of a holistic assessment which includes: Background information Current physical health and prognosis Physical well-being and likely changes Social/occupational well-being Psychological well-being Spiritual well-being Aspirations, goals and priorities Culture and lifestyle Risk and risk management The needs of families and friends, including Carer s Assessments Assess pain and other symptoms using assessment tools, pain history, appropriate physical examination and relevant investigation. Knowledge set for end of life care (REVISED 2010), p.8

9 3.2.4 Understand the need for individuals to be at the centre of their end of life care package, and to contribute as much as possible to their own needs assessment and care planning, taking account of their needs, wishes and goals and priorities. 3.3 Risk assessments Recognise the key elements of an effective balanced risk assessment Understand your role in contributing to protecting people at risk Understand the role of others in developing a shared understanding and common approach to risk taking, recognising the right of the individual to make their own choices Recognise that some risks cannot be completely removed or managed, however much support the individual may have Recognise that risk should not be seen as a reason not to do something; risks can be broken down into manageable pieces Understand the procedures for safeguarding and how they can be implemented if there is a need for protection Understand the impact on others of decisions made to manage identified risks. 3.4 Reviewing plans Understand the need to regularly review assessments to take account of changing needs Know how care plans can be reviewed and how activity can be amended to take account of changing circumstances Understand the need to ensure information about changes is properly communicated. 4. Symptom management, maintaining comfort and wellbeing EOL Common Core competences (Key themes) 4.1 Person-centred approach Learning outcomes Understand the need for a person-centred approach to the support and well-being of individuals who are at the end of life Understand the importance of seeing the person first and their illness second Know how to communicate in an appropriate way to allow the person to make informed decisions about their care Know the normal physiological changes as end of life approaches and how to minimise the distress they cause Understand how, when an individual can not make a decision about their own care, welfare workers should act in their best interests and in the least restrictive manner, taking into consideration any advance care plans, decisions or statements in line with the Mental Capacity Act (MCA) (or legislation specific to your country) Understand the importance of taking account of history (personal, family, medical, etc.) and work towards meeting the needs of the whole person. Knowledge set for end of life care (REVISED 2010), p.9

10 4.2 Assessment Understand your own role in relation to assessment and monitoring individuals. 4.3 Roles and responsibilities 4.4 Range of interventions Know that individual symptoms may vary according to the time of day Be aware of factors that may cause distress, such as procedures or position change Know that individuals may express distress or discomfort in different ways, such as behaviour change or altered body language or facial expression Know about the use of symptom assessment tools to record severity of symptoms or presence of factors which may indicate distress if the individual is unable to communicate Know about your role in formulating and reviewing symptom management plans and the need to share information with other professionals Be aware of the need to record and report if any treatment or interventions do not appear to be effective for the individual Be aware that some individuals may have personal beliefs, values or concerns that may affect their compliance with some treatments Understand your own professional role as it relates to symptom management, maintaining comfort and well-being Understand that symptoms may have many causes, including the disease itself, treatment, a concurrent disorder including depression or anxiety, or other psychological or practical issues Know that there are a range of side effects from many medications and the need to record and report any adverse reactions or effects Have an awareness of policies and procedures relating to medication Know about your specific role in relation to medicines management and administration according to local policies Understand the need to communicate with other professionals involved regarding the condition of the individual and to work in partnership with other professionals Know that as the individual approaches the end of life they may be unable to take medications and that you need to notify the nurse or doctor if this happens Know about health and safety issues in relation to use of oxygen therapy Have an awareness of a range of (non medical) interventions and environmental factors that help to maintain well-being Know that many individuals respond to comfort and touch and someone being with them and that this often helps reduce anxiety and distress Be aware of relevant policies in relation to the use of alternative therapies such as massage. Knowledge set for end of life care (REVISED 2010), p.10

11 4.5 Involving carers, family, friends and relatives Know about the importance of positioning to promote comfort and assist in helping manage symptoms such as breathlessness Know about equipment that can help promote comfort and wellbeing, such as pressure relief equipment and support aids Demonstrate awareness of the positive effect of an environment that is well ventilated and free of unwanted noise or strong odours Understand the need to consult with family, friends and carers at this time Be aware of the anxiety that can be experienced by family and friends if their loved one appears to have distressing symptoms Be aware of the need for sensitive discussions and explanations with carers, friends, family and relatives, and who can assist you in this, e.g. manager, nurse or doctor Know about the benefits of consulting with families in relation to the planning and assessment process outlined above. 5. Advance care planning EOL Common Core competences (Key themes) 5.1 Understanding and process 5.2 Recording wishes and preferences Learning outcomes Understand that advance care planning is a voluntary process of discussion between an individual and their care provider(s) which may lead to a record of their wishes and preferences in relation to their future care in the event they may lose capacity to make decisions Know that there are common points which may trigger an individual to begin making advance care plans, such as moving into a care home, diagnosis of illness or death of a loved one Understand the need for discussions to take place while the individual still has capacity Be aware of the issues of assessing mental capacity in advance care planning process according to applicable legislation, e.g. Mental Capacity Act 2005 (or legislation specific to your country) Understand the difference between terminologies such as care planning, advance care planning, and advance decisions to refuse treatment Be aware of the legality of an advance decision to refuse treatment and that such decisions must be acted upon if they are considered to be valid and applicable Know that any wishes and preferences recorded should be those of the individual with no external pressure from families, professionals or organisations Know that in many cases it may be beneficial to encourage individuals to discuss their advance care plans with family Knowledge set for end of life care (REVISED 2010), p.11

12 members Be aware of your role in being open to any discussion initiated by an individual about wishes and preferences Understand your own role in relation to recording decisions about advance care planning Understand the need to provide a suitable format if the individual indicates they would like to record wishes and preferences Know how to support an individual who has expressed wishes and preferences and how to ensure this is shared, with the consent of the individual, with those who need to be informed of decisions Know that any wishes and preferences should be taken into account as part of any future decision making process should the individual then lack capacity to make decisions for themselves. 5.3 Care after death Know how to prepare for and deliver care after death Be aware of your organisation s policies and procedures regarding deaths: who should be contacted, what to do if you find someone has died, how and where do you record this Know how to ensure that individuals wishes and organisational policy are respected and followed after death Understand the importance of family and friends being informed in a timely manner and by an appropriate person about their loved one s death, if they are not present at the time Be aware before death of the wishes of the individual in the case of there being no family or friends, and ensure that appropriate people are contacted Have up to date knowledge of local funeral directors, faith-based or secular bodies offering funeral services, coroner s office, the registrar responsible for the place of death, and support the family or friends to make contact with such services Be aware of the culture and relevant beliefs of the bereaved, particularly if these are different from those of the deceased person Know that there may be a need to refer to bereavement support from a tradition different to that that may have been supporting the individual up to their death Understand the importance of offering contact details for bereavement care organisations who can offer support to the family and friends. Knowledge set for end of life care (REVISED 2010), p.12

13 3. Key words and concepts additional information Abuse Violation of an individual s human or civil rights by any other person or persons. Any or all types of abuse may be perpetrated as the result of deliberate intent, negligence or ignorance. Advance care planning The process of identifying future individual wishes and care preferences. This may result in the recording of these discussions in the form of an advanced care plan. Advance decision to refuse treatment Advocacy Care plan / care pathway / management plan / care package / end of life pathway / support plan Care planning End of life care Harm Individual(s) People have the legal right to consent to or refuse treatment. The courts have recognised that, for adults, decisions can be taken in advance. This decision must then be upheld if at a later stage the person loses the ability to make such a decision. Decisions can be revoked by the person at any time. Giving active support to the individual(s). An advocate is a person who intercedes on behalf of an individual. A document that sets out in detail the way care and support must be provided to and individual. It can include the goals of the plan and the ways in which it will be monitored, reviewed and evaluated. Unlike the advance care plan, it is about the current time rather than the future. The process of producing a care plan using a team approach and including the individual, their family and friends. Includes all elements of support for people approaching the end of their lives: communication assessment and care planning symptom management, maintaining comfort and well-being advance care planning overarching principles and values. As well as care provided by palliative care specialists, all of the other significant support that is given needs to take on a different focus and perspective to accommodate this stage of life. It encompasses the management of all symptoms including pain and provides psychological, social, spiritual and practical support. Includes not only ill treatment but also the impairment of, or an avoidable deterioration in physical or mental health and the impairment of physical, intellectual, emotional, social or behavioural development. The person or persons receiving care and support. Knowledge set for end of life care (REVISED 2010), p.13

14 Legislation (5.3) NB. This list of legislation and guidance is given as examples. Legislation and guidance is subject to change and may be country-specific. The most up to date legislation and guidance should be considered. Person-centred approach Organisation s policies and procedures Roles and responsibilities Services and organisations (2.1.2) Significant others Tools, frameworks and care pathways Human Rights Act 1998 Mental Capacity Act 2005 Mental Health Act 1983 Care Standards Act 2000 Community Care Act 1990 Disability Discrimination Act 1995 Health Act 1995 Equality Act 2006 Health & Safety at Work Act 1974 No Secrets DH Guidance Data Protection Act End of Life care strategy 2008 Dementia Strategy Dignity Challenge Carers strategy An approach to care planning and support that empowers individuals to make decisions about what they want to happen in their lives. These decisions then provide the basis of any plans that are developed and implemented. Also phrased as ways of working in recognition that in individual homes there may not be formal policies and procedures. Examples may be; visitor policy, no secrets policy, health and safety, safeguarding, vulnerable adults policy. Roles and responsibilities of: The individual Family and friends of individual Independent advocate Care worker Manager Social worker General Practitioner Specialist personnel (end of life care nurse, GP, Consultant, physiotherapist). Care homes with personal care or nursing care. Specialist palliative care services including hospices. Domiciliary, respite and day services. Extra care housing providers. The family, friends and advocates of the individual receiving care and support. There are a number of examples of tools that have been developed both locally and nationally, for example: Liverpool Care pathway Regional SHA Care pathways for End of Life Care Gold Standard Framework. Knowledge set for end of life care (REVISED 2010), p.14

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