Introduction
Ethics
is that aspect of human thought and behaviour that is
guided by standards and principles of right conduct.
It involves the commitment to do the right thing. Ethical
decision-making is guided by values, which are beliefs
that influence attitudes, actions, choices and decisions.
Each person may view an ethical issue differently. Each
person's view of an ethical issue is shaped by many factors,
including a person's life history and culture.
An
ethical dilemma is a situation in which:
- one
is unsure of what to do;
- two
or more values may be in conflict;
- some
harm may be caused, no matter what one does.
When
making an ethical decision there is usually consideration
of:
- the
obligation to act;
- the
available options;
- the
best option, taking into consideration one's authority
to act, one's values, the consequences and concern
for others.
In
1997, the Alzheimer Society of Canada released a set
of Ethical Guidelines in a document titled, Tough
Issues. These guidelines were meant to stimulate
dialogue among people with the disease, their families,
health-care professionals and researchers. For some issues,
there were recommended solutions. For other issues, it
was not possible to outline specific recommendations,
only factors to consider in making decisions.
The
original Tough Issues was the result of two years
of consultation with people with Alzheimer's disease, their
families, health-care professionals, researchers and
other national organizations. Tough Issues was
well-received by thousands across Canada. It is now time
for a new Ethical Guidelines document.
In
the six years since those first cross-country consultations,
there has been much change in the area of Alzheimer's disease.
Increased awareness of the disease, earlier diagnosis
and current treatments have provided new insights and
understanding of how people experience Alzheimer's disease.
Also, people with Alzheimer's disease are becoming more
proactive in their search for information and support,
and in their willingness to share their experience with
others. As well, researchers are trying to identify where
Mild Cognitive Impairment fits into the continuum of
Alzheimer's disease. Is it the early beginnings of Alzheimer's disease? Would treatment be helpful? When does Mild Cognitive
Impairment end and Alzheimer's disease begin?
To
assist the Society in updating the Ethical Guidelines,
consultations were held in the fall of 2001 and 2002
with people with Alzheimer's disease, caregivers, health-care
professionals, researchers, and staff and volunteers
of Alzheimer Societies across the country.
An
Advisory Committee was struck, made up of experts from
the medical, legal, research and nursing communities,
as well as a person with Alzheimer's disease, family caregivers
and Alzheimer Society staff. The committee reviewed the
responses of the consultations, and also established
a set of values and guiding principles to assist them
in addressing the identified issues. These values and
guiding principles are outlined on the following pages.
As a result of this extensive process, a new set of Ethical
Guidelines has been created.
As
before, these revised Ethical Guidelines are designed
to provide information and guidance to people with Alzheimer's disease and related dementias, their families, health-care
professionals and researchers as they navigate the difficult
issues raised by Alzheimer's disease.
Note:
The
term "Alzheimer's disease" has been used throughout
to indicate Alzheimer's disease and related dementias.
However, the "Genetic Testing" guideline refers
only to Alzheimer's disease.
The
term "family member" is used to refer to relatives
of the person with Alzheimer's disease.
The
term "caregiver" is used to refer to the primary
person providing care to the person with Alzheimer's disease.
This person may be a family member, friend or other person.
"Health-care
professionals" refers to those who provide care
in a formal way, such as physicians, nurses, and management
and staff in long-term care facilities.
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