Definitions
Palliative Care:
The Canadian Hospice Palliative Care Association defines palliative care as "care aimed at relief of suffering and improving the quality of life for persons who are living with or dying from advanced illness or are bereaved. 1
Palliative care is a special kind of health care for individuals and families who are living with a life-threatening illness that is usually at an advanced stage. The goal of palliative care is comfort and dignity for the person living with the illness as well as the best quality of life for both this person and his or her family.
According to the World Health Organization the goals of palliative care include:
- Relief from pain and other distressing symptoms;
- Affirming life while regarding dying as a normal process;
- Neither hastening or postponing death;
- Integrating the psychological and spiritual aspects of patient care;
- Supporting patients to live as actively as possible until death;
- Supporting families to cope during the patients illness and in their own bereavement;
- A team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- Efforts to enhance quality of life, and positively influence the course of illness;
- Applied early in the course of illness in conjunction with other therapies that are intended to prolong life, including investigations aimed at better understanding and managing distressing clinical complications.2
Vulnerability:
Vulnerability can be defined in different ways depending on who you are and how the world sees you. Vulnerability comes from a feeling of being at risk and is almost a universal experience, particularly among people who know they are close to dieing. Some may argue that all people at the end of their life are vulnerable. However, people can be made to feel more at risk than others because of the circumstances in which they live and the assumptions that society holds about them. People may be vulnerable under the law, or as a result of inadequate social and emotional supports, physical, psychological or intellectual functional limitations, or limited advocacy skills.3
Vulnerability becomes important in people’s lives when social relationships and their physical emotional and spiritual wellbeing are damaged by societal attitudes and assumptions.
Vulnerabilities can often lead to more types of vulnerability. Physical, psychological or intellectual limitations can result in more barriers, such as economic, legal or knowledge vulnerabilities.4 This spiral of vulnerability, together with a health care environment that is not designed to understand or respond to these vulnerabilities, results in bad end of life care.5
In our research we look at how vulnerability for people with disabilities is produced through the use of language, which is underpinned by certain values held in the general population and healthcare providers, and how these get translated in healthcare practice.
Vulnerable populations:
In our research our initial focus was on "vulnerable populations" defined as individuals with physical, psychological and/or intellectual impairments or disabilities. The VP-NET team looks at these vulnerabilities in among specific populations, including the frail elderly; individuals whose terminal illness is associated with a long trajectory of decline and increasing impairments; and people with longstanding disabilities approaching the end of life.
We hope to use what we learn about the intimate or long term experience of people with disabilities with socially constructed vulnerability to come to an understanding of what vulnerability means throughout a number of populations. In the future we will explore vulnerability for people in a wider variety of marginalized populations including racialized minorities, women, and/or people from the economic south.
These populations are made vulnerable because they are treated as outsiders in society and their experiences and needs are not taken into consideration in policy and the design of important systems like healthcare. This often means that health care providers are not aware of the needs of these individuals. Some people may even assume that they do not need complete health care services because they are not seen as "whole people". This makes people with physical, intellectual or emotional differences more likely to have other health-related concerns, including harm and neglect, which need to be addressed. 6
[ Back to Concepts ]
[ Top ]
