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Karen

Karen Glaetzer AM

Year of Award: 2013 Award State: South Australia Health And Medicine > Disabilities, Impairments And Injuries
Health And Medicine > Palliative Care
The Dr Dorothea Sandars and Irene Lee Churchill Fellowship to study methods of improved care for individuals with intellectual and/or physical disability who require palliative care - UK, Ireland, Netherlands
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Palliative Care is active care that aims to relieve suffering and promote comfort when cure is no longer possible. Palliative Care offers a positive approach to caring and encourages people to live as full a life as they are able when faced with a life-limiting illness. This care provides physical, psychological, social, emotional and spiritual support for patients, families and their friends (WHO, 2002). The majority of individuals and their families referred to palliative care services are able to consent to referral and participate in decision making in relation to the care they receive and where this care is provided. This is not always the case for vulnerable groups of people in terms of the care they receive, the way that decisions are made by and for them, the policies that guide care, and how societal perceptions affect the availability and accessibility of palliative and end-of-life care (VP-Net, Manitoba). Individuals with intellectual or long-term physical disabilities are a particularly vulnerable population in this regard.

In my current role as a Palliative Care Nurse Practitioner I case manage clients referred to the palliative care service who have overwhelmingly complex needs. These clients have a life-limiting illness as well as a co-morbid condition such as a severe persistent mental illness, intellectual and/or long-term physical disability. Many of these clients reside in supported accommodation, community group homes or are being cared for by family members.

The project I undertook focused on the unique care needs of individuals with intellectual and/or long-term physical disability who require palliative care. This Fellowship gave me the opportunity to explore the models of care, ethical considerations, communication issues, advance care planning, approaches to care, management of specific conditions (such as Down Syndrome) and care options.

My early work on this topic revealed three significant issues:

  1. Historically, many individuals with congenital or acquired disabilities rarely survived beyond childhood, but increasingly, many are now surviving into adulthood and as a result are faced with multiple co-morbid conditions normally associated with ageing. Despite this they are generally a younger population when they develop these co-morbid conditions.

  2. The de-institutionalisation of disability care to the community setting, where the focus is predominately on their day-to-day living needs, has frequently resulted in inadequate management of the health care needs of this group. The response to any acute change in their medical condition has been transfer to hospital and often inappropriate treatment is instigated due either to the lack of advanced care plans or an identified decision maker.

  3. Many of these people are not consulted or are unable to participate in decision making about their care and frequently inconsistencies in this management occurs.

Initial meetings with Disability SA (the provider of disability services in South Australia), prior to undertaking this Fellowship, produced a very positive response and a willingness to develop a partnership between palliative care and disability services. This work would begin with a review of current care provision.

New knowledge and information gained through the Fellowship is positively contributing to this process and enhancing this collaboration to ensure individuals with intellectual and/or physical disability receive optimal and ethical care at the end of their life.

Awards and Honours 

  • 2018 awarded Member of the Order of Australia for significant service to nursing, particularly in the field of palliative care, to people living with Motor Neurone Disease, and to professional groups.
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