There is often a lack of consistency in the way we speak about children’s palliative care and the services and supports provided to them. We hope that the following will help us as professionals move to a better understanding between stakeholders and decrease the level of confusion associated with the use of palliative care terminology.
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).
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.
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.
ACT’s 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, which 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 interdisciplinary 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/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 (ACT, 2009).
Chronic condition or illness
A medical condition which has persisted for a long period of time.
Health professionals, including psychologists, physiotherapists, pharmacists, social workers and occupational therapists.
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.
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.
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 includes informal carers and all those who matter to the child/young person. In the context of palliative care, the family is defined as any person who is significant to the patient.
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 team of health professionals who work together to develop and implement a plan of care. Membership varies depending on the services required by the person.
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.
Life-limiting condition means a condition, illness or disease which is progressive and fatal; and the progress of which cannot be reversed by treatment.
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-threatening conditions are those for which curative treatment may be possible but can fail, such as children with cancer.
Medical staff includes general practitioners, palliative medicine physicians, other medical specialists (such as oncologists and cardiologists), and nurses. 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.
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.
Paediatric palliative care/Children’s Palliative Care
Care to maximise the comfort, well-being and quality of life of children with life-limiting illnesses, and of their families and carers.
Specialist care provided for a person living with a life-limiting illness. The primary goal is quality of life. Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
- 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 Approach
The palliative care approach aims to promote both physical and psychosocial well- being. It is a vital and integral part of all clinical practice, whatever the illness or its stage, informed by a knowledge and practice of palliative care principles.
Palliative medicine is the appropriate medical care of patients with active, progressive and advanced disease, for whom the prognosis is limited, and the focus of care is the quality of life. Palliative medicine includes consideration of the family’s needs before and after the patient’s death.
Palliative care team
An 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.
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.
Specialist Palliative Care Services
Specialist palliative care services are those services with palliative care as their core speciality and which are provided by an inter-disciplinary team, under the direction of a consultant physician in palliative medicine.
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.
A term that describes a broad range of activities to improve health or comfort, and includes medications, tests, surgery, counselling or massage therapy.