Glossary

People living with life-threatening illness, their families and caregivers can face challenges in accessing a number of different types of supports, such as access to:

• palliative care services through diagnosis by their health care provider,

• technology and supports to allow them to receive palliative care in the setting of their choice,

• financial supports such as the federal Family Caregivers Benefit, the Employment Insurance Compassionate Care Benefits,  the Canadian Pension Plan Disability Benefit, or various provincial and territorial drug plans, respite care plans, etc.

A process people can use to: think about their values and what is important to them with regard to their health care choices; explore medical information that is relevant to their health; communicate their wishes and values to people close to them, their substitute decision-maker and health care team; and record their health care choices and decisions in the event they can no longer speak for themselves. The process may involve discussions with their health care providers and people who are significant in their lives.

A caregiver is a family member, partner, friend, or neighbour who provides care for a critically ill person without pay. Family is considered to include the biological family of "blood relatives" as well as the "family of choice" based on close relationships with the person who is ill. A caregiver may provide care and support at home or in another care setting where the critically ill person is receiving care. Caregivers are sometimes called informal caregivers, and /or family caregivers with the understanding that "family" can include anyone that the ill person or relatives consider to be close.

Community engagement is a process that aims to build a broader network of support around an individual with a serious illness and their family.  It can involve raising public awareness, education and skills training, connecting with existing resources, building alliances, and creating new approaches to challenging issues through collective action.

The Government of Canada is required under the new Framework for Palliative Care Act to define what palliative care is. There are several accepted definitions used internationally and in Canada:

Hospice Palliative Care: Hospice Palliative care is a set of services offered in many settings.  The service can look different based on what the person is dying of (disease trajectory), setting of care (including acute care, Long term care, residential hospice, home and community care, shelters and prisons) and the capacity of family and friends to help care. 

Integrated Approach to Palliative Care: Care that focuses on meeting a person’s and family’s full range of needs – physical, psychosocial and spiritual – at all stages of a chronic progressive illness. It reinforces the person’s autonomy and right to be actively involved in his or her own care – and strives to give individuals and families a greater sense of control. It sees palliative care as less of a discrete service offered to dying persons when treatment is no longer effective and more of an approach to care that can enhance their quality of life throughout the course of their illness or the process of aging. It provides key aspects of palliative care at appropriate times during the person’s illness, focusing particularly on open and sensitive communication about the person’s prognosis and illness, advance care planning, psychosocial and spiritual support and pain/symptom management. As the person’s illness progresses, it includes regular opportunities to review the person’s goals and plan of care and referrals, if required, to expert palliative care services.

World Health Organization (WHO) Definition of Palliative Care: 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.

Palliative care:

• 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 interventions needed to better understand and manage distressing clinical complications.

World Health Organization (WHO) Definition for PalliativeCare for Children: Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows; the principles apply to other paediatric chronic disorders (WHO; 1998a):

• 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.

• It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.

• Health providers must evaluate and alleviate a child's physical, psychological, and social distress.

• Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.

• It can be provided in tertiary care facilities, in community health centres and even in children's homes.

End-of-Life care includes all forms of care received at the end of life, including hospice palliative care, acute care (intensive care), and so on.

Grief is a natural emotional reaction to any significant loss, especially the death of someone close to us.  It may involve a range of emotions, and while there are similarities in most people’s expression of grief, each person will experience it in their own way.  Bereavement is a period of mourning after a loss, such as a death; it may specify a certain time (such as employment bereavement leave benefits) or rituals in cultures or religions.

Home care is care provided in the home, usually with support from public or private health care providers. Community-based care is care provided in the community rather than in hospital; it can include home care or care in a long-term care facility or group home.

Patient-centred care recognizes that the patient is the most important consideration in health care. “Patient-centred care is seamless access to the continuum of care in a timely manner, based on need and not the ability to pay, that takes into consideration the individual needs and preferences of the patient and his/her family, and treats the patient with respect and dignity.”  (CMA/CNA definition)

A residential hospice is a community-based facility offering hospice palliative care for live-in patients and support for their loved ones, people with life-threatening illnesses and support for their families and friends. The hospice may admit people as in-patients, provide out-patient services, or provide visiting or other supportive services.

Respite is defined by the Canadian Association for Community Care as a break, time out or relief for the informal caregiver.

Special populations include people who have unique needs that may make access to palliative care more difficult than the average Canadian. Included in this definition are: perinatal, infants, children, adolescents and youth, Indigenous peoples, the elderly, socioeconomically disadvantaged, homeless, immigrants and refugees, racial or ethnic minorities, LGBTQ2, people with mental and or cognitive impairments, people with diseases other than cancer, or people living in rural and remote communities. Challenges in access may be due to lack of understanding about the goals of palliative care or how to access it, lack of knowledge about or access to Canadian health care systems, inability to speak in Canada’s two official languages, lack of insurance due to unstable housing, untraditional or unpredictable illness patterns, and geographical barriers, to name a few.

The personal information you provide is protected in accordance with the Privacy Act and collected under the authority of the Department of Health Act and the Public Health Agency of Canada Act.  Your personal information will be collected to help inform the development of a federal framework on palliative care.  You have the right to request access to and correction of your personal information. You also have the right to file a complaint with the Privacy Commissioner of Canada if you think your personal information has been handled improperly. For more information about the handling of your personal information, please contact the Privacy Management Division at 613-948-3179 or hc.privacy-vie.privee.sc@canada.ca.