End of Life care refers specifically to the last few days or hours of life, when maintenance of comfort and dignity, and avoidance of pain and distress take priority. Identification of End of Life in frailty is important because although frailty is the leading cause of death, it is often not recognised nor considered at End of Life. Older people with frailty will have end of life needs that are often progressive in nature. Severe frailty is an end-of-life state and should trigger a healthcare professional to identify and sensitively discuss end of life needs and preferences. The Comprehensive Geriatric Assessment (CGA) can be a useful tool to identify needs and to direct a focused care plan.
Relevant Legislation
Mental Capacity Act
Health and Social Care Act 2022
Human Rights Act
Resources
Links to resources
https://www.bgs.org.uk/resources/end-of-life-care-in-frailty-identification-and-prognostication
Comprehensive Geriatric Assessment Toolkit
Pre and Post Knowledge Assessment
HCPA have developed word documents which can be used as a guide for pre and post knowledge assessments of the different levels outlines in this framework. The questions in this document can be copied into other formats such as Microsoft Forms or Excel and are a guide to the type of information you need your staff to know.
End of Life Awareness Pre & Post Assessment Click here
End of Life Intermediate Pre & Post Assessment Click here
End of Life Advanced Pre & Post Assessment Click here
Learning Objectives
End of Life Assessment and Care Planning
End of life is an emotive subject and one that must be handled sensitively. The purpose of these learning outcomes is to guide staff on how to provide the best support when managing frailty and end of life support.
Awareness
For staff providing day to day care of people at or nearing the end of their life.
- Staff understand the range of assessment tools, and ways of gathering information including conversation, and know their advantages and disadvantages (GSF, Rockwood, Surprise Question)
- Staff can assess pain and other symptoms in ways appropriate to your role, including using assessment tools, pain history, appropriate physical examination and relevant investigation. Know when to refer concerns to specialist colleagues.
- Staff can undertake/contribute to multi-disciplinary assessment and information sharing, including speaking to colleagues as part of the assessment process, and ensuring that, where information is already available, the person is not asked to provide the same information repeatedly
- Staff ensure that all assessments are holistic, including:
- Background information about the person’s life
- Personal strengths, aspirations and priorities
- Religious or other belief, cultural and lifestyle factors
- Current physical health and prognosis, including underlying health or other conditions
- Social, occupational, psychological and emotional and spiritual well-being
- Religion and/or spiritual well-being, where appropriate. vii. Risk and risk management.
- In partnership with others, staff review assessments to take account of changing needs, priorities and wishes, and ensure information about changes is properly shared.
- Staff communicate with a range of people on a range of matters in a form that is appropriate to them and the situation.
- Staff understand the DNACPR guidance and how this needs to be used in decision making and recording
Intermediate
For staff involved in planning care of people nearing or at the end of their life.
- Staff ensure that the needs of carers, including children and young people, are taken into account and that carer support and, where appropriate, assessments are offered.
- Staff are able to explain the scientific basis and clinical manifestations of disease processes that are life limiting and integrate this knowledge in the assessment, diagnosis and management of patients with life limiting, progressive disease commonly encountered within own practice
- Staff can analyse presentation of illnesses in people with dementia and other common psychiatric and psychological conditions including clinical depression
- Staff are able to demonstrate knowledge and recognition of psychological responses to illness and skills to assess and manage these in practice including psychological impact of pain and other symptoms, responses to uncertainty and loss, presentation of illness in people with dementia or pre-existing psychological/psychiatric problems, distinction between sadness and clinical depression.
- Staff can elicit a relevant focused history and holistic assessment from patients with complex end of life care needs/issues and in increasingly challenging situations, including prioritizing the patient’s agenda encompassing their beliefs, concerns, expectations and needs
- Staff can document and report the history/assessment accurately and synthesize this with relevant clinical examination, establishing a problem list/differential diagnosis (relevant to own professional group) and formulate a management plan that takes account of likely clinical evolution
- Staff communicate effectively, including managing any disagreement, a management plan to the multi-professional team, other services/agencies and the patient applying the principles, guidance and laws regarding ethics and confidentiality.
- Staff understand the range of therapeutic options available, including drugs, hormone therapy, physical therapies, counselling or other therapies, surgery, community or practical support
- In partnership with others, staff implement, monitor and review the EoLC plan to address the five priorities of care identified by The Leadership Alliance for Care of Dying People (2014).
- Staff can demonstrate knowledge, skills and understanding to manage symptoms and other clinical problems secondary to life-limiting progressive disease including pain, gastro-intestinal symptoms, respiratory symptoms, genitourinary symptoms, musculoskeletal and skin problems, neurological and psychiatric problems, paraneoplastic syndromes, palliative care emergencies, treatment induced symptoms
- Staff can review and monitor interventions and management plans, including medications and non-medication-based interventions, identifying indications, contraindications, side effects, drug interactions and dosage of commonly used drugs communicating appropriately to multi-professional team, patients (and carers).
- Staff can demonstrate knowledge of treatment methods and use of drugs to treat patients with life limiting progressive disease – including relevant national guidelines and protocols, drug formularies in palliative care, legal and ethical issues relating to prescription of controlled drugs, problems of polypharmacy
Advanced
For staff responsible for clinical practice relating to end of life care.
- Staff can analyse theories and evidence relating to the psychological impact and responses to illness and loss and integrate this knowledge in the assessment and management strategies within clinical practice.
Symptom management, maintaining comfort and well being
Deciding on the best treatment interventions and outcomes for the person is key to ensuring the person experiences wellbeing and comfort as much as possible, in the final days and weeks of their life. Staff need to understand the options that are available and provide person centred care and ensure the right people are involved in the care and treatment and right times.
Awareness
For staff providing day to day care of people at or nearing the end of their life.
- Staff are aware that symptoms have many causes, including the disease itself, its treatment, a concurrent disorder, including depression or anxiety, or other psychological or practical issues
- Staff understand the significance of the individual’s own perception of their symptoms to any intervention
- Staff understand that the underlying causes of a symptom will have an impact upon how care should be delivered.
- In partnership with others, including the individual, their family and friends, staff can develop an EoLC plan which balances disease-specific treatment with other interventions and support that meet the needs of the individual and addresses the five priorities of care identified by The Leadership Alliance for Care of Dying People (2014).
- Staff are aware of cultural issues that may impact on symptom management.
Intermediate
For staff involved in planning care of people nearing or at the end of their life.
- Staff understand the range of therapeutic options available, including drugs, hormone therapy, physical therapies, counselling or other therapies, surgery, community or practical support
- In partnership with others, staff implement, monitor and review the EoLC plan to address the five priorities of care identified by The Leadership Alliance for Care of Dying People (2014).
- Staff can demonstrate knowledge, skills and understanding to manage symptoms and other clinical problems secondary to life-limiting progressive disease including: pain, gastro-intestinal symptoms, respiratory symptoms, genitourinary symptoms, musculoskeletal and skin problems, neurological and psychiatric problems, paraneoplastic syndromes, palliative care emergencies, treatment induced symptoms
- Staff can review and monitor interventions and management plans, including medications and non-medication-based interventions, identifying indications, contraindications, side effects, drug interactions and dosage of commonly used drugs communicating appropriately to multi-professional team, patients (and carers).
- Staff can demonstrate knowledge of treatment methods and use of drugs to treat patients with life limiting progressive disease – including relevant national guidelines and protocols, drug formularies in palliative care, legal and ethical issues relating to prescription of controlled drugs, problems of polypharmacy
- Staff apply general principles of pharmacodynamics and pharmacokinetics and, for drugs commonly used in palliative and end of life care, explain: Routes of administration, absorption, metabolism, excretion, half-life, frequency of administration, adverse effects and their management, opioid switching, use of syringe drivers, interactions with other drugs, issues of tolerance addiction, dependence and discontinuation reactions dose adjustment in altered metabolism, organ failure, disease progression and in dying patients.
Advanced
For staff responsible for clinical practice relating to end-of-life care.
- Staff apply general principles of pharmacodynamics and pharmacokinetics and, for drugs commonly used in palliative and end of life care, explain: Routes of administration, absorption, metabolism, excretion, half-life, frequency of administration, adverse effects and their management, opioid switching, use of syringe drivers, interactions with other drugs, issues of tolerance addiction, dependence and discontinuation reactions dose adjustment in altered metabolism, organ failure, disease progression and in dying patients.
Advance Care Planning
Advanced care planning is crucial to providing a person-centred experience. Staff require the knowledge of the phases of dying and the assessments needed to plan for care and support, including bereavement and grief support for families.
Awareness
For staff providing day to day care for people at or nearing the end of their life.
- Staff can demonstrate awareness and understanding of Advance Care Planning, and the times at which it would be appropriate.
- Staff can demonstrate awareness and understanding of the legal status and implications of the Advance Care Planning process in accordance with the provisions of the Mental Capacity Act 2005
- Staff show understanding of Informed Consent, and demonstrate the ability to give sufficient information in an appropriate manner
- Staff use effective, sensitive communication skills when having Advance Care Planning discussions as part of on-going assessment and intervention.
- Staff can work sensitively with families and friends to support them as the person decides upon their preferences and wishes during the Advance Care Planning process
- Where appropriate, staff ensure that the wishes of the individual, as described in an Advance Care Planning statement, are shared (with permission) with other workers
- When appropriate, staff know what the Advance Care Planning statement contains, and how this will impact upon a person’s care and support
- Staff can provide appropriate supportive, palliative and end of life care in long term conditions in conjunction with patients and other members of the multi-professional team
- Staff demonstrate knowledge and skills to provide optimal care for the dying patient and their family including:
- Recognition of the dying phase,
- assessment of the dying patient,
- assessment of required care and medications,
- management of symptoms in the dying phase,
- psychological care of the family,
- recognition and engagement with ethical dilemmas in the dying phase,
- and appropriate use of relevant/required end of life care documentation
- Staff demonstrate knowledge of major cultural and religious customs which relate to delivery of palliative and end of life care, dying and bereavement.
- Staff can analyse seminal and contemporary theories about bereavement including the process of grieving and adjustment to loss
Intermediate
For staff responsible for planning end-of-life care.
- Staff can integrate knowledge and understanding of bereavement theories and services to prepare individuals for bereavement, to anticipate/recognize risk in bereavement and to support the acutely grieving person/family
Advanced
For staff responsible for clinical practice relating to end-of-life care.
- Staff demonstrate knowledge of the principles of rehabilitation in progressive illness and the skills to appropriately initiate rehabilitation for patients with palliative/end of life care needs.
Knowledge
It is expected that in order to manage all aspects of clinical reasoning and ethical decision making, the knowledge level will need to be of a higher standard, and therefore training at intermediate and advanced levels only, will be provided.
Intermediate
For staff responsible for planning end-of-life care.
- Staff can use an understanding of the theoretical basis for applied ethics in clinical practice, demonstrate application of these in ethical reasoning and decision-making in palliative and end of life care, with ability to justify own ethical position in relation to palliative care practice
- Staff can demonstrate understanding of professional and legal frameworks with regard to patient consent, confidentiality, autonomy, advance directives, mental health legislation, organ donation, communicable disease notification, legal aspects related to patients’ death
Advanced
For staff responsible for clinical practice relating to end-of-life care.
- Staff can analyse the overall approach of person-centred, value-based practice and how this relates to ethics, law and decision-making in palliative and end of life care
Education Resources and Case Studies
The hospice education team developed training in line with findings from local research. If organisations choose to use this training, they are responsible for ensuring all learning objectives are met to relevant standards.
Supporting Case Studies – Coming Soon