Service Provision/ Clinical
Rsearch summary Dignity Conserving Care
This section is dedicated to outlining the areas we have identified where people working in palliative care can focus their energy to improve end of life care for vulnerable populations. These approaches can help prevent suffering from becoming a defining characteristic of someone living with a long-term disability. Relieving suffering resulting from socially constructed vulnerability, marginalization and isolation makes the justification for withdrawing life sustaining treatment less ‘rational’ and also ensures better care for persons with disabilities at the end of their lives.
The four main areas discussed are:
Education
Education and awareness among physicians who provide end of life care, or decide when ‘end of life’ begins, is essential to improving palliative care for people with disabilities. A knowledge of illness is not enough; physicians are members of society who have a lot of power which means palliative care specialists must understand and address the social side of disability. This means taking into account the context of a society that can be very hostile to people labelled ‘dependent.’40
Supports
Palliative care specialists and the disability community must work together to give support to persons at the end of their life by providing information about available supports along with emotional support and open communication in end of life decision making 41 appropriate supports and accommodations are necessary to realise the autonomy of people at the end of their life because “Wheelchairs can liberate, diapers and catheters can alleviate distress; assistance with eating and transportation can allow the continuance of quality existence.”42
Communication
Communication is a pivotal part of good palliative care for people facing increasing impairment.43 It is necessary that curriculum for nursing and palliative care workers and physicians be revised to focus on communication and interpersonal skills. Advances in technology can also facilitate communication at the end of life. More resources, in the form of training for staff and funds for these equipment and services are needed.
Decision-making
Dignity can be protected when patients believe themselves to still be valued in their communities and social support networks. This can be achieved by demonstrating that their opinions are acknowledged and heard among friends, family and care providers. 44
[ Top ]
