In dealing with your child’s illness, you may hear words or terms that are confusing. Here are some helpful definitions for some of these words.
Acute condition or acute illness
A medical condition of short duration that often starts quickly and may only change the person’s ability to function for a short period of time. This is different to a chronic condition (see below).
Allied Health Professionals
Health professionals, including psychologists, physiotherapists, pharmacists, social workers and occupational therapists.
Advance Care Planning
Advance care planning is a process of discussion and reflection about goals, values and preferences for future treatment in the context of an anticipated deterioration in the child’s condition with loss of capacity to make decisions and communicate these to others.
Bereavement is the total response to a loss and includes the process of ‘recovery’ or healing from the loss. Although there are similarities in people’s responses, there are also marked differences. Each person will grieve and ‘recover’ in their own way.
A carer is generally a family member or close friend who provides for the needs of the patient.
Chronic condition or illness
A medical condition which has persisted for a long period of time.
Care of the Dying
Care of the dying is the care of the child and family in the last days and hours of life. It incorporates four main types of care: physical, psychological, social and spiritual, and supports the family at that time and into bereavement.
Together for Short Lives’ description of a care pathway approach to working with children who have life-limiting or life-threatening conditions is a way of engaging with a child and their family’s needs. This Care Pathway can be used to ensure that everything is in place so that families have access to the appropriate support at the appropriate time.
Children’s hospice services
Children’s hospice services provide palliative care for children and young people with life-limiting conditions and their families. Delivered by a multi-disciplinary team and in partnership with other agencies, children’s hospice services aim to meet the needs of both child and family – physical, emotional, social and spiritual – through a range of services
- 24 hour end of life care.
- Support for the entire family (including siblings, grandparents and the extended family).
- Bereavement support.
- 24 hour access to emergency care
- Specialist short break care
- 24 hour telephone support
- Practical help, advice and information.
- Provision of specialist therapies, including physiotherapy as well as play and music therapy.
- Provision of information, support, education and training where needed to carers.
- Children’s hospice services deliver this care in the home (commonly termed ‘hospice at home service’) and/or in a purpose built building.
Children’s Palliative Care/Paediatric Palliative Care
Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through to death and beyond. It focuses on enhancement of quality of life for the child/young person and support for the family and includes the management of distressing symptoms, provision of short breaks and care through death and bereavement (TFSL, 2009).
Clinical psychologist provides a range of services that can help parents understand the nature of their child’s illness and identify meaning and hope in their own situations. They can:
- Encourage families to understand the unique experience of the child, parents, carers, and siblings within the family’s unique cultural background
- Help families adjust, cope and learn new parenting strategies
- Help families to accept and manage their feelings as well as spiritual issues
- Communicate with local services on your behalf if you choose
Complex care/continuing care
Complex care, sometimes known as continuing care, is an individualised package of care beyond what is available through standard health services. It is provided to children with highly complex health care needs or intense nursing care needs.
Complex Palliative Care Problems
Complex palliative care problems are defined as those that are severe and intractable, involving a combination of difficulties in controlling physical and/or psychological symptoms, the presence of family distress and social and/or spiritual problems. They exceed the resources of the generalist palliative care provider to meet the needs and expectations of the patient/carer/family.
Community services refer to a service that an individual or organisation performs within the local community. This might include community children’s nurses (CCNs) who deliver nursing care and support within the local community including visiting a patient’s home. Community services may also include some of the services delivered by the Health Service Executive.
Complementary or traditional therapies
Complementary therapies can be used in conjunction with conventional therapies and include a broad range of treatments including vitamins, minerals, nutritional and herbal supplements, massage, aromatherapy, music therapy and homoeopathic medications.
The term traditional in this context, refers to the treatments that have been recognised by different cultural groups and peoples.
The range of treatments prescribed or practiced by medical health care providers.
A government officer who investigates, by way of an inquest, any death not clearly due to natural causes. The work of the coroner is determined by laws and officers are therefore required to request such activities as autopsies in certain circumstances.
The process of identifying a disease by its signs or symptoms through the use of various diagnostic procedures, such as reviewing patient history, physical examination, scans, and laboratory tests. Not all illnesses have a complete diagnosis.
The end stage of palliative care, where the patient is very close to death. Palliative care does not begin at the end of life but is involved from the time a person is diagnosed with a life-limiting illness. (See palliative care) It is a continuum of palliative care and is offered during the period when death is imminent, and life expectancy is limited to a short number of days, hours or less. This maybe the view of the health care team, but may also be recognised first by the child or their family.
“End-of-life care” is an imprecise term but implies time-defined care. It is a quantitative rather than qualitative descriptor that excludes the purpose of care. In contrast, palliative care is not time-confined but goal-oriented.
The discipline of palliative care helps patients to “live until they die” whenever that occurs. The Palliative Care programme is of the opinion that promotion of the term “end of life care‟ as a descriptor of palliative care practice will send a message to the general public that care is limited to the imminently dying. We also are concerned that the phrase will promote among potential referring physicians a transitional “discontinuous” care model rather than a more desirable seamless “collaborative” care with early referral.
Therefore, the programme recommends that the term, end-of-life care is used to describe the care that is offered during the period when death is imminent, and life expectancy is limited to a short number of days, hours or less. “Palliative care‟ is the preferred term of the programme when describing care which is focused on improving the quality of life of patients and their families facing the problems associated with life-threatening illness.
The term ‘family’ includes parents, other family members involved in the child’s care, or other carers who are acting in the role of parents. Family are not necessarily blood relatives and includes informal carers and all those who matter to the child/young person.
Futility of treatment
This term reflects a recognition that continued invasive aggressive treatment is not in the child’s ‘best interests’ or that continued invasive aggressive treatment confers more burden than benefit.
Generalist Palliative Care Providers
Generalist providers refer to all those services, health and social care providers who have a primary or ‘first contact’ relationship with the person with life-limiting illness and palliative care needs. The use of the term ‘generalist’ in this context refers to general practitioners, primary care team members and staff of residential care services. It also includes other specialist services and clinical staff of emergency departments and acute care hospitals.
Doctors, specialists, nurses and allied health professional workers who are specially trained and also recognised by an appropriate registering body.
The physical, emotional, spiritual, social, and cultural aspects of a person’s needs.
A special place set up to care for people with life-limiting illnesses. A hospice provides coordinated holistic care in a home-like environment.
Hospice care is a term that is often used to describe the care offered to patients when the disease process is at an advanced stage. The term may be used to describe either a place of care (i.e. institution) or a philosophy of care, which may be applied in a wide range of care settings.
Hospice at home
Hospice at home is a term commonly used to describe a service which brings skilled, practical children’s palliative care into the home environment. Hospice at home works in partnership with parents, families and other carers.
A person who works with you to plan, coordinate and communicate the care provided by the different members of the care team. Key working or care co-ordination is a service, involving two or more co-ordinated agencies. It encompasses individual tailoring of services based on assessment of need, inter-agency collaboration at strategic and practice levels and a named key worker, often the child’s Outreach Nurse for the child and their family.
An illness where it is expected that death, before adulthood, will be a direct consequence of the illness and therefore is expected to shorten the child’s life.
Life-limiting conditions, sometimes known as life-shortening conditions, are those for which there is no reasonable hope of cure and from which children or young people will die. Some of these conditions cause progressive deterioration rendering the child increasingly dependent on parents and carers.
Life-limiting condition means a condition, illness or disease which:
- Is progressive and fatal;
- The progress of which cannot be reversed by treatment
Life-threatening conditions are those for which curative treatment may be possible but can fail, such as children with cancer.
Medical staff includes paediatricians general practitioners, palliative medicine physicians, other medical specialists (such as oncologists and cardiologists). Their tasks often involve:
- Symptom control—such as pain, nausea, or constipation
- Arranging meetings to develop your child’s care plan
- Providing advice to local services involved in care of children with life-limiting illnesses
A range of drugs used to address symptoms.
Drugs taken by mouth used for the treatment of an illness.
A team of health professionals who work together to develop and implement a plan of care. Membership varies depending on the service.
Occupational therapists can help children realise their full potential. Within the palliative care context, occupational therapists work to maintain the quality of life experienced by the child by:
- Encouraging and maximising independence and participation in everyday activities
- facilitating age-appropriate play skills
- maintaining comfort and support
- helping with the supply of equipment
- assisting with home management strategies.
- Provides relief from pain and other distressing symptoms
- Affirms life and regards dying as a normal process
- Intends neither to hasten nor postpone death
- Integrates the psychological and spiritual aspects of patient care
- Offers a support system to help patients live as actively as possible until death
- Offers a support system to help the family cope during the patients illness and in their own bereavement
- Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
- Will enhance quality of life, and may also positively influence the course of illness
- Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Palliative care team
A interdisciplinary team which may include nurses, doctors, social workers, volunteers, chaplains, allied health workers and other complementary health therapists.
The term ‘parents’ is used to mean any carer for a child whether that is a married or unmarried couple, a single parent, guardian or foster parent.
Care provided by a person trained in providing spiritual support for a child, their family and carers.
Physiotherapists provide support to children and families by:
- Assessing and monitoring muscle strength and mobility, and providing programs to help children maintain their physical abilities
- Providing splints, gait retraining, walking aids and rehabilitation to maximise a child’s potential
- Conducting a respiratory assessment and developing a care plan to help your child breathe as easily as possible
- Providing education and support to parents and carers in the physical tasks that may be required to deliver care at home
- Teaching techniques to enhance pain management.
Play therapists are skilled in child development and can assist children and families with palliative care needs in many ways:
- In hospital, during admission, or appointments
- Provide support in relation to adjustment to hospital
- Assist with recreation activities
- Prepare children for medical procedures
- Teach coping strategies for pain management in the home
- Support the child and family in the home environment by teaching coping strategies for pain management
- Assisting with recreation activities.
A medical examination to determine the exact cause of death
A person who provides the primary support role for the patient. When the patient is a
child, the primary carer may be the mother, father, a carer or a combination of these.
Prognosis refers to the doctor’s expectation of how a patient’s disease will progress. This judgement is based on their knowledge and experience with patients with similar medical conditions.
Specialist Palliative Care Services
Specialist palliative care services are those services with palliative care as their core specialty and which are provided by a multidisciplinary team, under the direction of a consultant physician in palliative medicine.
A service which provides temporary care for the patient. Respite can be in a hospital, hospice or the home.
A medical action aimed at returning someone to life when their heart or breathing has stopped. Resuscitation may or may not be successful.
Sick child/seriously ill child
These terms are used in this book to indicate a child who has a life-limiting illness.
Specialist palliative care provider (including nurses, doctors, counsellors)
A health professional that is trained as an expert in assessing and addressing the needs of a person with a life-limiting illness, and of their family and carers.
Specialist palliative care nurses
Specialist palliative care nurses have advanced training in caring for people with a life-limiting illness. They provide care, advice and support for children and their families and carers, including:
- Direct care in the home, hospital or hospice
- linking families with support services
- helping determine what respite care services are available if required
- assisting with accessing equipment and supplies required for care at home
- advocating for children and families who require palliative care.
Symptoms are signs of an illness and include such things as pain, fever, nausea, fatigue and breathing difficulties.
Health professionals with a range of training and skills, working together as part of a multidisciplinary team.
A term that describes a broad range of activities to improve health or comfort, and includes medications, tests, surgery, counselling or massage therapy.
Unstable is where the patient experiences the development of a new problem or rapid increase in the severity of existing problems, either of which require an urgent change in management or emergency treatment, and/or the family/carers experience a sudden change in their situation requiring urgent intervention by the specialist palliative care team.