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[Please
note that the material on this page was current when
it was first posted. For up-to-date information on this
topic, visit the ethical guidelines pages.]
[From
our 1997 Ethical Guidelines media kit]
Facing
the Tough Issues -- Alzheimer Ethical Guidelines
Some
days, Molly Blake thinks everyone around her is crazy.
She often forgets that, like many of the other residents
in the nursing home where she now lives, she has Alzheimer's disease.
"We
both knew something was wrong," says Ellen Agger,
whose mother Molly was diagnosed with the disease during
a stay in hospital last spring. "Mom was having
a lot of problems living alone. She was no longer taking
her epilepsy medication properly and she could no longer
manage money. I often found rotten food in her fridge
because she would forget she'd bought it and would order
more from the grocery store.
"I
didn't want to force her to move into a long-term care
facility, but I knew it wasn't safe for her to continue
living alone in her apartment."
Agger
says she's just now beginning to fully grasp the depth
of the effects of Alzheimer's disease -- a progressive,
degenerative disease of the brain that robs people of
their ability to think, reason, communicate, and, eventually,
to take care of themselves. She sees how it is dramatically
changing both her mother's life and her own.
"I'm
overwhelmed by the continual stream of decisions I have
to make for my mom," says Agger, the sole family
caregiver for her mother, age 67. "Each decision
leads to many others. I feel like I'm living two people's
lives now, even though mom is being taken care of in
a nursing home."
This
past January, Agger struggled with the decision about
whether to consent to further invasive medical tests
when she was told her mother may also have cancer. "It
was very difficult separating what mom would want from
what I want. I wasn't sure what questions to ask and
how to make the difficult decisions mom's doctors were
asking me to make."
To
help families like Agger's, the Alzheimer Society of
Canada has developed a set of ethical guidelines (the
first of their kind in Canada) that address many of the
sensitive and difficult issues that come up over the
course of the debilitating illness.
"Families
have been asking for some kind of direction," says
Marg Eisner, president of the Alzheimer Society of Canada
and chair of the Task Force on Ethics that developed
the guidelines.
Made
up of family members and experts from the medical, legal,
research, ethics, nursing and caregiving communities
across Canada, the task force drafted guidelines and
solicited input from across the country. A remarkable
550 responses were received from Canadians and each was
considered in the final development of the guidelines.
The
guidelines help families begin to discuss and clarify
some of the more difficult decisions that must be made
by both the family and the person with the disease. They
also serve as a starting point for discussion with health-care
providers and researchers.
The
guidelines discuss issues such as:
- when
a person with Alzheimer's disease should stop driving
- what
family members should think about when considering
genetic testing and risk assessment
- how
families can balance the need to make decisions while
respecting individual choice
- whether
it's ever justified to use restraints to keep people
with Alzheimer's disease safe
Other
issues that the task force tackled include quality of
life, end-of-life care, participation in research and
communicating the diagnosis.
One
issue that is particularly sensitive to many dealing
with Alzheimer's disease is driving, as it is often central
to family life and independence. Judie Witney experienced
this firsthand when she realized her Aunt Elma could
no longer find her way driving four blocks to downtown
in the small Ontario town where she had lived all her
life.
Witney
agonized for months over whether to raise the issue with
her aunt's doctor. "I felt like I was making a decision
in a vacuum. I could have used guidelines like these
to help me figure out what to do.
"Aunt
Elma's doctor finally took her licence away. She hasn't
spoken to me since. As tough as that decision was, I
probably saved someone's life."
Tough
decisions like this are not always made by one person.
Family dynamics, different values and views within the
family, and religious beliefs all play a part in the
many decisions families must make.
The
guidelines offer some practical help in making these
decisions. "They take difficult ethical issues out
of the academic boardroom," says Dr. Carole Cohen,
Clinical Director of the Community Psychiatric Services
for the Elderly at Sunnybrook Health Science Centre in
Toronto and member of the task force. "There may
be more sides to the story than you might have thought
about. The guidelines help people look at the other side
of the coin."
For
Joan Pelham, looking at both sides of the coin meant
deciding whether to tell her husband Norman, age 62,
about his diagnosis. She says Norm knew something was
wrong, but he didn't know what. "I knew a long time
before he knew."
Pelham
says she wanted her husband to have some quality time
before he found out he had the disease. "I don't
know if I was right or wrong."
Families
agonize over such decisions. Dr. Serge Gauthier, a neurologist
at the McGill Centre for Studies in Aging in Montreal
and member of the task force, advises that it is important
to be sensitive when telling someone he or she has Alzheimer's disease. In addition, the guidelines advise that the
person with the disease and the family should be directed
to appropriate support services if they need help understanding
the disease and planning for the future.
As
the disease progresses, families often find they are
called upon to make more and more decisions on behalf
of the person with Alzheimer's disease. "Families
don't expect to have to take on the responsibilities
of making decisions for others," says Dr. John Dossetor,
Chair of Bioethics at the University of Alberta and member
of the task force.
The
guidelines help prepare people to take on these responsibilities
and begin to work through these tough decisions as their
caregiving role increases. Dossetor advises that families
may also find it helpful to get professional help and
to talk to other caregivers who have faced these issues.
"These
guidelines will be very helpful for me as my mom's disease
gets worse," says Agger. "Unfortunately, there
is no black and white in many of the decisions I now
have to make. I need to understand and consider all the
options.
"I'm
learning that there are no easy answers. I just have
to keep asking the questions. And get all the help I
can."
The
guidelines on ethical issues are available from your local
Alzheimer Society or you can read
them here.
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