This section is to help families, carers and those who would like to understand more about palliative care to have a common understanding of the definitions currently in use:
Advanced care planning is a process of reflection, discussion and communication that enables a person (adult, child, young adult and/or those with parental responsibility or legal capacity) to plan and record their wishes regarding future clinical and nonclinical preferences.
Carers/caregivers are the persons who are responsible for attending to the needs of the patient. They may be family members, friends and volunteers (informal) or professionals trained to assist nurses and other health professionals to carry out a variety of tasks for patients.
Burnout is a state of emotional, physical, and mental exhaustion caused by excessive and prolonged stress. It occurs when a person feels overwhelmed, emotionally drained, and unable to meet constant demands.
Care Coordinator/Key-worker is a professional figure, from the palliative care team, identified to help the family to build and maintain an appropriate support system of professionals, ensuring access to social services, practical support, spiritual support and respite care. The care coordinator/key worker acts as the main link, providing continuity, ensuring that the care provided is consistent with the needs of the child and family.
Care Pathway is a patient-centred approach to working with people who have a life-limiting or life-threatening conditions, setting out the patient’s and families needs in a structured way so that everything can be put in place to enable the families to access appropriate support at the appropriate time.
Care Plan is a written personalised plan, which, under a single assessment process, details a patient’s, integrated health and social care needs.
Child is every human being below the age of 18 years, unless, under the laws applicable to the child, majority is attained earlier. This term refers to an extensive range of individuals in every phase of life.
Complex care sometimes known as continuing care is an individualised package of care beyond what is available through standard healthcare services. It is provided to patients with highly complex healthcare needs or intense nursing care needs.
Deteriorating describes a patient’s situation when symptoms are gradually or steadily worsening over weeks or developments of new but expected problems over days/weeks, with need for adaption of care plan and regular review with worsening family distress and/or social/practical burden.
Diagnosis is the process of determining the nature of a medical condition.
Dying describes the terminal phase of life when death is anticipated in a matter of days and frequent reviews are necessary.
Paediatric Palliative Care is the active total care of the body, mind, and spirit of the child and family. It requires a broad multi-disciplinary approach that alleviates the child’s physical, psychological, and social distress and includes family members, as well as available community resources. The continuing physical, emotional, and cognitive development in children sets them apart from adults. It influences all aspects of their care, including pharmacological treatment, their understanding of their disease, their communication skills, and their level of dependence. The palliative phase in children is often much longer than in adults. Children with cancer account for nearly one in three of patients with palliative care needs. Whilst cancer in children, as in adults, usually ends in a recognisable palliative phase lasting weeks or months, most other conditions are more unpredictable in their prognosis and can persist for years or even decades. All children with palliative care needs require an individual package of care including variable components of both generic and specialist palliative care provided in a planned, coordinated, timely and flexible manner as directed by needs.
End-of-life is the period before death during which the clinical condition is severely compromised and changes in vital signs indicate that death is imminent.
End of Life Care is care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It focuses on preparing for an anticipated death and managing the end stage of a terminal medical condition, this includes care during and around the time of death and immediately afterwards. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support for the family. This is not confined to specialist services but includes those services provided as an integral part of the practice of any health or social care professional in any setting.
Family is understood as parents, siblings, other family members and any person who shares the responsibility of care and/or of the physical, psycho-social and spiritual development of the patient or is close in care and affection. This term also includes legal guardians.
Healthcare team members are all the healthcare professionals providing care for the patient at home, in hospital or in hospice.
Hospice this term is often used interchangeably to describe a philosophy, a program of care or a site of care. The term is commonly used to refer to an organisation or programme of care that provides, arranges, coordinates and advises on a wide range of clinical and supportive services for dying patients and those close to them through a range of services including palliative care, specialist respite care, terminal and emergency care, 24-hour telephone support, practical help, advice and information and bereavement support for all family members.
Hospice care/Home care is an integral component of palliative care. Hospice/Home care is a term commonly used to describe a service that brings skilled, practical palliative care into the home environment.
Hospice/Home care works in partnership with parents and families and provides hands-on expert nursing care, on up to a 24-hour basis, along with other elements of palliative care including:
• Emotional, psychological and social support, counselling, and spiritual care.
• Access to specialist colleagues in other disciplines, such as physiotherapy, as required.
• Provision of information, support, education and training where needed to all carers both lay and professional.
• Close collaboration and communication with the primary care team, the patient’s acute hospital specialist if appropriate, and other agencies.
• Specialist respite care.
• 24 hour end of life care.
• Bereavement support
High Dependency Unit is a hospital ward for patients who require more intensive observation, treatment and nursing care than usually provided on a general ward but do not require full intensive care.
Legal capacity is the possibility of every human being to exercise rights and responsibilities. By existing, every individual possesses this capacity regardless of the duration of his or her life.
Life-limiting/life shortening conditions are those for which there is no reasonable hope of cure and from which children or adults will die. Some of these conditions cause progressive deterioration rendering the patient increasingly dependent on parents and carers.
Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as cancer. Patients in long-term remission or following successful curative treatment are not included.
Needs-led is the term used to describe services provided on the basis of need of the patients and family, rather than as a result of assessing available resources.
Pain is a sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage. Therefore, the term expresses, not only, physical pain but also the suffering that accompanies it and that is generated, maintained and persists even in the absence of tissue damage.
Palliative/terminal sedation is a carefully targeted therapy aimed at controlling, reducing or eliminating the suffering due to intractable symptoms: it involves the pharmacological reduction of awareness, even to unconsciousness.
Parents is a term used to mean any carer for a child whether is a married or unmarried couple, a single parent, guardian or foster parent.
Outpatient is a patient who is not hospitalised overnight but who visits a hospital clinic (day hospital). The term is also used to describe a facility for diagnosis or treatment of such patients.
Primary healthcare team comprises the general practitioner (GP), practice nurse and community staff (such as community nurses or physiotherapists).
Quality of Life is the subjective perception of one’s life in the socio-cultural context and in the context of the values belonging to the environment in which he/she lives and in relation to his/her own needs, desires, concerns, expectations and goals.
Respite Care/short breaks may offer the whole family an opportunity to be together and to be supported in the care of their child or it may offer care solely for the child, young person or adult patient.
It serves three main functions:
• to provide the patient with an opportunity to enjoy social interaction and leisure facilities
• to support the family in the care of the patient in the home or an alternative community environment such as the hospice
• to provide siblings and family members with leisure opportunities and receive support in their own right
If the patient has complex needs or is technology dependant specialist short break care can be provided in the home or in a setting such as the hospital, long term care facility or hospice.
Stable describes a patient’s situation when symptoms are controlled, needs are met by the current care plan and the family situation is secure.
Symptom management is the control of the physical aspects of symptoms in palliative care, it also includes attention to psychosocial and spiritual aspects of symptoms (for example anxiety) where appropriate.
Transition is the process that children and young people go through as they move from children’s services to adult services.
Young person/adolescent describes a person between 13 and 18 years of age.
Young adult describes a person after their eighteenth birthday.
Technology-dependent describes persons who need both a medical device to compensate for the loss of a vital bodily function and substantial and on-going nursing care to avert death or further disability.
Terminal illness is most frequently used to describe all patients with life-limiting illness in addition to those with life-threatening illness when death becomes inevitable. Some groups use the term ‘terminal illness’ only to describe patients who are in the process of dying. The use of this term can be misleading (e.g. in the case of apparently well person affected by illness such as Cystic Fibrosis or Batten disease) and can result in confusion regarding the difference between ‘palliative’ and ‘end of life’ care.
Unstable describes a patient’s situation when symptoms and overall condition need regular review because they are unpredictable and at risk of worsening quickly.