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Decision-making:
Respecting Individual Choice
Background
Making
decisions and controlling one's own life are important
for each of us. It is no different for the person with
Alzheimer's disease or a related dementia. However, the
extent to which a person with Alzheimer's disease can make
simple or complex decisions varies greatly and will depend
on the person's personality and the extent to which the
disease has progressed.
The
issues
For
people with Alzheimer's disease:
Opportunities
to make decisions: A diagnosis of Alzheimer's disease,
in itself, does not mean that a person is immediately
incapable of making decisions. However, as the disease
progresses, a person's decision-making abilities will
change. With this change in abilities, caregivers may
choose to make all decisions and not present people
with Alzheimer's disease opportunities to make decisions
of their own. This may occur not just with simple day-to-day
decisions but also decisions relating to a person's
future care and support.
Respect
for the person's wishes: Sometimes those making
decisions on behalf of the person with the disease
do not use the person's wishes as a guide and put their
own interests first.
For
family members and caregivers, substitute decision-makers
and health-care professionals:
Assessment
of abilities: Those who provide assistance and
support may be unable to determine the extent of a
person's decision-making capabilities and may prematurely
begin making decisions on that person's behalf. Alternatively,
family members may find it difficult to confront the
person about the loss of decision-making abilities.
They may choose not to take action even though they
know that the person is making poor decisions.
Decision-making
strategies: People who provide care may not be
aware of strategies that help make it easier for people
with Alzheimer's disease to make many of their own decisions.
Or perhaps caregivers find the strategies time-consuming.
Also, they may not realize how important decision-making
can be to maintaining a person's confidence and self-esteem.
Challenges
of substitute decision-making: As a person loses
decision-making capabilities, decision-making will
involve others, such as family members, substitute
decision-makers and health-care professionals. It can
be difficult and highly stressful for them to make
decisions on another person's behalf. This is particularly
so when the values and wishes of the person with Alzheimer's disease are unknown, unclear or impossible to follow.
Also, the wishes of the person may conflict with those
of the substitute decision-maker, family or society.
For example, a person could express a wish to live
at home, but unsafe smoking could put that person and
neighbours at risk of fire. Also, if several caregivers
are involved in decision-making, they may not be able
to agree on what the person's wishes are.
Preferred
choices
- Recognize
abilities
Recognize
that the person still has abilities. These abilities
should be respected and encouraged. Caregivers and
family members should support the person in making
decisions independently, and involve the person in
decision-making while capable. As well, it is important
to draw up a plan for the time when the person will
not be able to make independent decisions.
- Plan
for the future
While
able, the person with the disease and the substitute
decision-maker should ideally take the opportunity
to discuss openly and frankly issues relating to
future health care, personal care and financial decisions.
Wherever possible, legal paperwork should be completed
to ensure that the wishes of the person are recorded
and a substitute decision-maker is named. Laws about
advance directives and substitute decision-making
vary from province to province.
- Adjust
to changing abilities
As
the disease progresses, those involved in care should
identify what abilities the person still has, break
down complex tasks and decisions into more easily-managed
options, and respect the person's choices.
- Respect
a person's values and wishes
When
the time comes that a person is no longer able to
make decisions, the substitute decision-maker should
follow the expressed wishes of that person. When
these wishes are not known, the substitute decision-maker
should make the decision based on what is thought
the person would want. As well, depending on the
type of decision, the substitute decision-maker may
have to weigh the risks and benefits of the decision,
and assess how it will affect the person's quality
of life and well-being.
Strategies
to facilitate decision-making
- Personal
involvement
Feelings
of independence and self-esteem are encouraged when
people are able to control or have a say in the day-to-day
details of their lives. As the abilities of the person
with Alzheimer's disease change, those who provide
care and support need to ensure that the person continues
to be involved in making as many decisions as possible.
Strategies to achieve this include:
- Reducing
the number of options at any one time. For example,
ask, "Would you like to have your bath now
or later?" rather than, "When do you
want a bath?"
- Providing
step-by-step guidance. "Would you like to
go for a walk now?" "Would you like to
wear your blue or red sweater?" "Shall
we go to the garden or park?"
- Listening
and being sensitive to messages that a person with
Alzheimer's disease can convey by facial expression,
tone of voice and body language. Feelings and emotions
remain intact long after words have lost their
meaning. The person with Alzheimer's disease can
communicate meaning to anyone who learns to read
the emotional signals conveyed.
- Open
discussion
Most
people are not comfortable about making plans for
a time when they will be unable to make decisions
and have control of their own lives. Discussing personal
values in relation to illness and death, finances
and living arrangements, for example, is difficult.
But silence on these issues can result in people
being denied the opportunity to express and realize
their wishes about their own care.
While
able to make decisions, people should be encouraged
to discuss their choices and who their substitute
decision-maker will be with their family members.
Family members and substitute decisions-makers should
be aware of what the person values and how the person
defines quality of life. Discussion of these matters
helps give the person a sense of control over future
decisions, and provides support and reassurance to
future substitute decision-makers.
- Substitute
decision-making
Substitute
decision-makers should be selected. It could be one
person. Or, it could be someone for health-care decisions
and someone else for financial decisions. In choosing
substitute decision-makers, consider their availability
to take on the role, understanding and respect for
the values and wishes of the person with the disease,
ability to work with others, and ability to resolve
conflicts. Once the substitute decision-maker is
chosen, the person with the disease and the substitute
decision-maker may want to talk about how disputes
might be resolved if they arise. Laws about substitute
decision-making vary from province to province. Contact
your local Alzheimer
Society for more information.
- Advance
directive
The
person's values and wishes can be written down in
an advance directive. This is a document that records
a person's wishes about the preferred type of future
care. Should the person become incapable of making
decisions in the future, the advance directive will
provide direction. Other terms used for an advance
directive in Canada include living will, or enduring
or durable power of attorney for health care. Laws
about advance directives vary from province to province.
Contact your local
Alzheimer Society for more information.
- Competency
assessment
For
some major decisions, it may be necessary to have
experts assess the person's ability to make that
particular decision. Regulations governing competency
assessment vary from province to province. Contact
your local Alzheimer
Society for information about the relevant regulations
in your province.
- When
decisions become difficult
If
the time comes that a substitute decision-maker is
called upon to make a decision on behalf of the person,
the expressed wishes of the person must be followed
whenever possible. If conflict develops, or, if the
person's wishes are not known, are unclear or are
impossible to follow, there should be a review of
the decision based on:
- the
values of the person with Alzheimer's disease;
- the
weighing of risks and benefits of the decision
to the person, caregivers, family members and others
who may be affected;
- the
effect on the physical and emotional well-being
of the person;
- the
effect on the quality of life of the person, caregivers
and family members.
If
there is disagreement between the needs and wishes
of the individual and those expressed by family members,
caregivers and/or health-care professionals, an impartial,
trusted third party should be consulted to assist
in resolving the issue. With some decisions, a resolution
may take some time.
Some
topics for discussion
Future
health care
What
kind of treatment would the person want for other major
health problems, such as heart disease or cancer? Would
elective surgery, such as cataract removal, be considered?
Decisions should take into account the effect the treatment
would have on the person's physical and cognitive health.
End-of-life
care
The
following chart outlines different approaches to treatment
that need to be understood when making decisions for
care in the later stage of the disease. Knowing in advance
the person's wishes for these difficult situations can
ease the burden of making decisions. However, health-care
professionals may never offer some choices if they would
be ineffective or may cause more harm than good.
| Approach
to treatment |
What
it means |
| Aggressive
medical care |
Goal:
To prolong life using all available types of treatment.
This
could happen in either the hospital or at home.
For example, using tube feeding when swallowing
is no longer possible, or keeping a person on a
respirator when no longer able to breathe properly. |
| Conservative
medical care |
Goal:
To maintain or improve current health status.
Care
that is considered routine or usual practice. For
example, using blood pressure medication to treat
high blood pressure, giving insulin for diabetes
or antibiotics for an infection, or setting a fractured
hip. |
| Comfort
or palliative care |
Goal:
To provide active and compassionate care when cure
is not the goal.
The
priority is symptom and pain control, as well as
meeting the physical, emotional, spiritual, social
and cultural needs of the person and the family. |
Finances
Person
responsible: Has someone been named to look after
the person's financial interests? This may or may not
be the same person responsible for decisions relating
to health and personal care.
Financial
documents: Are financial and legal documents, such
as wills, insurance policies and bank accounts, gathered
together in a safe location?
Financial
priorities: Have financial priorities been set?
For example, a person with Alzheimer's disease might
indicate that the top priority for financial resources
be the promotion of the person's comfort and well-being.
Personal
care
Language: What
language should be used in communicating with the person
with Alzheimer's disease?
Food: Is
there a specific type of diet the person wishes to follow?
Examples: vegetarian, kosher.
Hygiene: Is
keeping well-groomed important? Are there specific routines
that the person wishes to be followed? Examples: hair
dyeing, beard trimming.
Clothing: Are
there specific garments the person wishes to dress in?
Examples: a favourite sweater, prayer shawl, turban.
Daily
routines: Are there daily habits to be followed?
Is the person a morning person or a night person? Examples:
having tea before breakfast, watching the news every
evening.
Health
routines: Are there any practices related to health
that the person wishes to be continued? Examples: taking
daily vitamins, special dental care.
Activities: Does
the person want to continue to pursue certain activities?
Examples: daily walks, golf, quilting, music.
Fears: Is
there anything the person is especially afraid of? Examples:
dogs, storms, loud noises, spiders.
Provision
of care: When extra help is needed, are finances
available to provide this? When living at home is not
possible, what type of care facility would the person
prefer? Examples: small, large, culturally-specific.
In
closing...
Recognizing
the abilities of the person with Alzheimer's disease is
the key to supporting decision-making that respects the
person and offers opportunities to promote independence
and self-esteem. When the person can no longer make decisions,
the individual's values and wishes need to be respected.
These needs and wishes may have to be balanced with the
needs and wishes of families, substitute decision-makers
and health-care professionals. Keeping the balance is
not always easy. Considerations such as family relationships,
the number and availability of caregivers, legal, cultural,
religious and financial factors may influence the decision-making
process.
Resources:
- Contact
your local Alzheimer
Society for province-specific information on:
- Substitute
decision-making for health care and finances
- Advance
directives
- Competency
assessment
- Let
Me Decide. William Molloy et al, Newgrange Press
(Canada), May, 2000. For ordering: www.newgrangepress.com or
(905)628-0354.
- The
Moral Challenge of Alzheimer's Disease. Ethical Issues
from Diagnosis to Dying (2nd ed.). Stephen Post,
The Johns Hopkins University Press, 2000. For ordering: www.press.jhu.edu.
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