GLOSSARY

This section is to help families, carers and those who would like to understand more about palliative care, have a common understanding of the definitions currently in use:

A B C D E F G H I L M N O P Q R S T U V Z

 


C

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

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.

Children’s palliative care 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. The others will suffer conditions ranging from cerebral palsy and muscular dystrophy to mucopolysaccharidoses and neurodegenerative conditions. 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 need.

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D

Daunorubicina farmaco antitumorale di colore rosso

Day hospital (DH) Regime di ricovero ospedaliero in cui le prestazioni mediche si effettuano durante il giorno e al termine delle quali il paziente può fare ritorno a casa.

DEA Dipartimento di emergenza e accettazione.

Delirio condizione psichica durante la quale si ritengono veri visioni o voci o situazioni totalmente immaginifiche. Può essere causato da farmaci o condizioni non psichiatriche di malattia

Deontologia professionale Complesso dei doveri inerenti all’esercizio di una particolare professione. Nell’ambito della medicina si fa riferimento al Codice di deontologia medica che, attraverso una serie di norme, anche di natura etica, regola l’agire del professionista e i suoi rapporti con i colleghi e con i pazienti.

Depressione è una sindrome caratterizzata da un insieme di sintomi psichici e fisici persistenti nel tempo, consistente principalmente in una diminuzione da lieve a grave del tono dell’umore, talvolta associata ad ideazioni di tipo suicida od autolesionista. A questa sintomatologia principale possono accompagnarsi deficit dell’attenzione e della concentrazione, insonnia, disturbi alimentari, estrema ed immotivata prostrazione fisica.

Dermatologia scienza relativa alle malattie della pelle

Dermatologico che riguarda il derma (pelle)

Desametazone tipo di cortisone in grado di attraversare meglio di altri la barriera tra sangue e cevello (emato-encefalica)

Diagnosi Definizione di una malattia compiuta attraverso l’analisi di sintomi e segni, l’anamnesi del paziente, i risultati degli esami di laboratorio e strumentali.

Diamorfina (eroina)utilizzata nei paesi nei quali è autorizzata come oppioide somministrabile per via parenterale

Diarrea perdita di liquidi con le feci da cause varie, anche farmacologiche

Diazepam farmaco appartenente alla classe delle benzodiazepine, utilizzabile come ansiolitico e a dosi più alte come induttore del sonno

Dipendenza fisica Condizione fisica causata dall’assunzione di alcune sostanze (oppioidi, alcool, nicotina, ecc.) caratterizzata da comparsa di crisi di astinenza in seguito alla sospensione dell’uso di quella sostanza. Non deve essere confusa con la dipendenza psicologica o tossicodipendenza.

Dipendenza psicologica Stato psichico e talvolta anche fisico di dipendenza da una sostanza, caratterizzato da elementi fisici e comportamentali che spingono la persona ad assumere quella determinata sostanza in modo continuo o periodico al fine di trarne sensazioni ed esperienze particolari.

Disestesia sensazione alterata (per esempio sentire caldo un oggetto freddo)

Disfagia Difficoltà a deglutire e a ingoiare cibi solidi e liquidi. Può essere associata a senso di ostruzione o dolore dietro lo sterno ed essere causata da alcuni farmaci o dallo sviluppo della malattia stessa.

Disidratazione perdita di acqua da varie cause, pericolosa nel bambino piccolo

Dispnea Difficoltà a respirare a cui si accompagna ansia e affanno e che può portare alla cosiddetta “fame d’aria”.

Dolore totale Insieme di sofferenza fisica, psichica, sociale e spirituale che caratterizza il dolore nel malato alla fine della vita. Per quanto riguarda gli aspetti non strettamente fisici è dovuto alla perdita del ruolo sociale che la malattia determina con l’allontanamento dal lavoro, dagli impegni sociali; al diverso modo di presentare agli altri il proprio corpo a causa di terapie o interventi chirurgici che possono modificarne l’aspetto (ad es. dei capelli, del viso, la perdita di peso, ecc.); al modo di sentire il dolore e al legame che si crea con esso; al modo di ripensare esperienze di vita vissuta, alle preoccupazioni per il futuro, alla difficoltà nel dare un senso alla sofferenza e all’intera vita vissuta.

Drenaggio Tecnica chirurgica necessaria per derivare all’esterno liquidi fisiologici o patologici.

Duchenne malattia su base genetica, una forma di distrofia muscolare trasmessa come carattere legato al cromosoma X, per cui si manifesta nei maschi e no nelle femmine. Determina degenerazione progressiva delle fibre muscolari. Dovuta all’assenza di una proteina detta Distrofina. L’assenza di questa proteina determina una serie di eventi che portano a degenerazione del tessuto muscolare, che viene sostituito da tessuto fibroso e adiposo. La conseguenza clinica è una progressiva perdita di forza muscolare con conseguente progressiva perdita delle abilità motorie.

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E

End of Life is the final stages of a terminal illness. Definition of its beginning is variable according to the individual and professional perspectives. In some cases it may be the patient or family who first recognises its beginning. In other cases the principal factor may be the judgement of the health/social care professional/team responsible for the care of the patient.

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.

End of Life Care Services are services to support those with advanced, progressive, incurable illness to live as well as possible until they die. These are services that enable the supportive and end of life care needs of the 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. This is not confined to discrete specialist services but includes those services provided as an integral part of the practice of any health or social care professional in any setting.

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F

Family includes informal carers and all those who matter to the patient regardless of genetic relationship.

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H

Hospice care/Home care is an integral component of palliative care. Hospice/Home care is a term commonly used to describe a service which 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 child’s acute hospital specialist if appropriate, and other agencies.
  • Specialist respite care.
  • 24 hour End of life care.
  • Bereavement support.

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.

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L

Life-limiting 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.

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R

Respite is temporary relief for caregivers and families who are caring for those with disabilities, chronic or terminal illnesses, or the elderly.

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S

Symptom management is the control of the physical aspects of symptoms combined with attention to the psychosocial and spiritual aspects of symptoms.

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T

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. In the case of apparently well children affected by illness such as Cystic Fibrosis or Batten disease, the use of this term can be misleading.

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