Palliative care language and definitions
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“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 or 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”.
Note: The World Health Organisation (WHO) also provides additional principles relating to palliative care for children. This includes: “Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.”
The Palliative Care Victoria booklet, ‘Living, dying and grieving well: A guide to palliative care’ includes the following descriptions:
- “Palliative care is specialised care that helps you live well with a life-limiting illness.
- “The aims of palliative care are to make you comfortable, to improve your quality of life, and to support family and friends involved in your care.”
In relation to the role of specialist palliative care services, the booklet notes:
- “Palliative care services work with you, your family, your GP and other health services to provide the best possible care. The type of support available to you will depend on your needs and the services in your local area.
- “Depending on your needs, palliative care services may help with a specific issue for a short time, or they may become involved over a longer period of time”.
Palliative care is not just about the very end of life. The World Health Organisation (WHO) definition includes that palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.
The Victorian Government’s end of life and palliative care framework notes that palliative care can be provided at the same time as other treatment intended to reverse or resolve particular conditions.
In this website, including the Services Quickguide, among the range of terms used to describe an illness (or condition) where death as a consequence of that illness can be reasonably expected in the future – including terms such as ‘life-threatening’, ‘terminal’, ‘progressive’ and ‘incurable’ – we have chosen to use ‘life-limiting illness’ as a general descriptor.
Examples of life-limiting illnesses include many types of cancer and other conditions such as Chronic Obstructive Pulmonary Disease (COPD), Motor Neurone Disease (MND), liver disease, renal disease, heart disease, dementia, and many more.
There are a number of different definitions of palliative care used in Australia and internationally. For example, ‘hospice’, ‘end of life care’ and ‘supportive care’ are sometimes used interchangeably with palliative care.
In this context hospice care doesn’t refer to a specific place of care, but rather a concept of care focused on creating a natural and comfortable end-of-life experience for those living with a life-limiting illness.
A ‘palliative approach’ is sometimes used to describe palliative care provided by non-specialist palliative care services (e.g. aged care facility staff).
Sometimes ‘end of life’ care is used to describe the last weeks/days and hours of life. At other times, end of life care is used to describe care from early in the course of an illness through to death and post-death support for carers.
The Victorian Government’s end of life and palliative care framework defines end of life care with a 12 month time-frame: “the care needed for people who are likely to die in the next 12 months due to progressive, advanced or incurable illness, frailty or old age” (p5).
Sometimes family carers and friends are specifically included in definitions of palliative care, but sometimes they are absent from the words used. However, in practice, all approaches to palliative care include support for family carers and close friends, including with bereavement support.
The definitions used in the Victorian Government’s end of life and palliative care framework include:
- End of life care: “the care needed for people who are likely to die in the next 12 months due to progressive, advanced or incurable illness, frailty or old age” (p5).
- Palliative care: “an approach to care that improves the quality of life of people and their families who are facing the problems associated with a progressive illness. It does this by preventing and relieving suffering through early identification and assessment, by treating pain and other physical, psychosocial and spiritual problems and by addressing practical issues” (p5).
- Specialist palliative care: A designated sector “funded to provide care for those with the most complex end of life and palliative care needs” (p5). Also noted is that: “Often the most valuable role palliative care specialists play is supporting other healthcare teams and professionals through consultation, advice and support to provide end of life care to their patients” (p5).
The Palliative Care Outcomes Collaboration (PCOC) is a national program that utilises standardised clinical assessment tools to measure and benchmark patient outcomes in palliative care. The PCOC dataset includes five defined palliative care phases:
The PCOC website summary of phase definitions indicate the phases are “a clinically meaningful period in a patient’s condition”, that is “determined by a holistic clinical assessment which considers the needs of the patients and their family and carers”.
- A palliative approach to care aims to improve the quality of life for residents with life-limiting illnesses and to support their families. The usual time to start a palliative approach is when treatments given to cure a condition are no longer working or when the resident chooses to stop their curative treatments.
- The focus of a palliative approach is on comfort and maintaining or improving quality of life so that residents can live as well as possible until they die in an atmosphere of care and support.
The specifics of a ‘good death’ vary for each individual and defy neat definition.
In a British Medical Journal editorial (January 2000), ‘A good death: An important aim for health services and for us all’, Richard Smith discussed the following twelve principles of a good death published the previous year in a UK report on the future of health and care of older people.
- To know when death is coming, and to understand what can be expected.
- To be able to retain control of what happens.
- To be afforded dignity and privacy.
- To have control over pain relief and other symptom control.
- To have choice and control over where death occurs (at home or elsewhere).
- To have access to information and expertise of whatever kind is necessary.
- To have access to any spiritual or emotional support required.
- To have access to hospice care* in any location, not only in hospital.
- To have control over who is present and who shares the end.
- To be able to issue advance directives which ensures wishes are respected.
- To have time to say goodbye, and control over other aspects of timing.
- To be able to leave when it is time to go, and not to have life prolonged pointlessly.
Source: Debate of the Age Health and Care Study Group (1999) The future of health and care of older people: the best is yet to come. London: Age Concern, quoted in Smith, R (2000) ‘A good death: An important aim for health services and for us all’. BMJ Volume 320, pp 129-130.
*Hospice care in this context doesn’t refer to a specific place of care, rather a concept of care focused on creating a natural and comfortable end-of-life experience for those living with a life-limiting illness. For example, in Victoria, community palliative care services are designed to support people to stay living at home as long as possible and to die at home if that is their wish. In some parts of the world, community palliative care style services are known as ‘hospice in the home’.
In line with the World Health Organisation (WHO) definition of palliative care including the focus on early identification, quality of life and the role of carers and family, additional principles of a good death may include:
- To have access to support to enhance quality of life and to live as actively as possible until death.
- For family and close friends (primary carers and others involved in providing informal care and/or supporting the primary carer) to have access to a support to help them in their caring role and with their own psychosocial, spiritual and bereavement needs.