Acceptance – allowing things to be just as they are with clients, rather than wanting things to be different.
Active listening – means fully concentrating on what is being said rather than just passively ‘hearing’ the message of the speaker.
Anticipatory grief occurs while someone is still alive but clearly dying. It is a common grief reaction for people who are facing the imminent death of someone they love or care for. It is also experienced by the person who is dying as they consider letting go of those they love, or are concerned about how loved ones will cope after their death.
Attitude refers to a set of emotions, beliefs, and behaviours toward a particular object, person, thing, or event that can have a powerful influence over behaviour
Bereavement is the term used to describe the situation we find ourselves in when we have lost someone.
Best interest principle – If a person has been assessed under the Mental Capacity Act 2005 as lacking capacity then any action taken, or any decision made for, or on behalf of that person, must be made in his or her best interest.
Burnout – a state of emotional, mental, and physical exhaustion caused by excessive and prolonged stress. It occurs when you feel overwhelmed, emotionally drained, and unable to meet constant demands.
Capacity/mental capacity – being able to make your own decisions. Decisions deemed unwise by others do not necessarily mean that someone lacks the capacity to make them, and such decisions should be respected. Mental capacity is both decision and time specific. A person may have capacity for some decisions and not others, and may vary during the day if they become intoxicated. Making unwise decisions does not necessarily mean someone lacks capacity.
Cirrhosis – a chronic disease of the liver marked by degeneration of cells, inflammation, and fibrous thickening of tissue. It is typically a result of alcohol dependency or hepatitis.
Compassion – is by definition relational (i.e. it is about how we connect as human beings). It literally means ‘to suffer with’, so compassionate end of life care for clients not only considers their individual holistic needs, but also connects to our shared humanity – caregiver and client alongside each other on the journey.
Complicated grief – when the usual responses to the death do not fade over time and impair or prevent us leading our normal lives.
Diagnosis – refers to a particular illness or disorder that has been identified, e.g. a cancer diagnosis.
Disease trajectory – the way in which a disease develops over time. It is often referred to as a person’s journey from diagnosis to death.
End of life care – “an important part of palliative care for people who are considered to be in the last year of life, but this timeframe can be difficult to predict. It aims to help people live as well as possible and to die with dignity. It also refers to treatment during this time and can include additional support, such as help with legal matters. End of life care continues for as long as you need it.” Marie Curie Website
Grief – the physical, emotional, social, spiritual and cognitive reaction to bereavement that often involves strong painful feelings and emotions. The sense of loss can be a personal and highly individual experience, and can influence the type and level of support we might need.
Hospice at home – the provision of hospice care at home. This includes the principles and philosophy of care commonly experienced in a hospice setting.
Independent mental capacity advocate (IMCA) – The Mental Capacity Act 2005 introduced the role of the independent mental capacity advocate (IMCA). IMCAs are a legal safeguard for people who lack the capacity to make specific important decisions: including making decisions about where they live and about serious medical treatment options. IMCAs are mainly instructed to represent people where there is no one independent of services, such as a family member or friend, who is able to represent the person.
Korsakoffs syndrome – a form of alcohol related dementia
Mourning – the culturally patterned expression of grief or the rituals surrounding a death or significant loss.
Non-striving – not always needing to strive for particular outcomes, or to make things right.
Palliative care – “the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms, and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.” National Council for Palliative Care, 2017
Parallel planning – an approach which considers various options for care, taking into account different things that might happen. Talking about these options means that people have the chance to discuss what is important to them and what they would like to happen if they became very unwell. Hoping for the best (‘planning for life’) while also planning for the worst (deterioration or death) may enable a good quality of life to be achieved, and plans to be put in place in case the person should become ill.
Personal care plans – are an important part of palliative care that helps to preserve a person’s autonomy and choice by documenting their personal needs and wishes should their condition deteriorate
Prognosis – the likely outcome of a disease and, in the case of terminal illnesses, will include an estimated length of time a person has left to live. Some people do not wish to be told this, and medical teams may underestimate or overestimate it. However it is a useful guide when planning the person’s care.
Self-care – any activity we engage in on a regular basis to minimise stress, and maintain physical, mental and emotional wellbeing. Its aim is to help us to take care of our physical and psychological health, and achieve equilibrium across our personal and work lives.
The recovery model of care – focusing on helping people move out of homelessness and into independent living
The two-stage test (to assess capacity)- Under the Mental Capacity Act (2005), in order to decide whether an individual has the capacity to make a particular decision 2 questions must be answered. It is referred to as the two-stage functional test.
Trajectory – see disease trajectory.
Traumatic grief – when someone we care about dies in a sudden, and/or traumatic situation the common grief reactions we are likely to experience can become more intense. In this situation there is often no opportunity to prepare for the bereavement by saying goodbye, or completing unfinished business. This can mean additional difficulties may occur and the grief reactions may be more intense.
Wernicke encephalopathy – is a result of vitamin B deficiency and usually develops suddenly, often after abrupt and untreated withdrawal from alcohol. It can present with symptoms including confusion, disorientation, memory loss, poor balance or, changes to the eyes or vision, hallucinations or unsteadiness.
ADRT – Advanced Decision to Refuse Treatment
ACP – advance care planning
CHC – continuing healthcare (funding)/NHS continuing healthcare (funding)
CPR – cardiopulmonary resuscitation
DNACPR – do not attempt resuscitation (order)
IMCA – independent mental capacity advocate
IVDU – intravenous drug user
LPA – lasting power of attorney
MCA – Mental Capacity Act 2005
MDT – multidisciplinary team
MND – motor neurone disease
NLM – node link mapping
PHB – personal health budget