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Nursing Manual
Medical Decision Maker, Informed Consent
Capacity and Capability
All people are allowed to make all decisions for which
they are capable. However, capability to make medical decisions may be difficult
to determine. When
working within the DD service system, many will look to the nurse for guidance
in these difficult situations. Determining capability can require the input
from numerous people and heated discussions. The following are helpful reminders
that must be considered:
- A person's receptive language skills are frequently better than their
expressive skills.
- Be sure to talk to the person who knows the individual's communication
best. This frequently is a direct care staff who has known the person for
a long period
of time.
- Informed consent involves the ability to understand the consequences
of one's actions/decisions. When the consequences are serious, a person
needs a deeper
understanding of those consequences. A person may be very able to give consent
(or refuse) to take a cold medication, but not truly understand the consequences
of forgoing life-saving treatment.
- Capacity/capability is not an "all or none" phenomena. The
person may be capable of making a simple decision but not complex ones.
- A person who physically and vocally objects to going to a health provider's
office or receiving a treatment may simply be communicating that they are
afraid of people in white coats, have been hurt in similar environments,
etc. They may
not be communicating a true informed decision and rejecting medical care.
- Use simple, concrete language. If possible, demonstrate the complex
area (e.g. show them someone with a tracheostomy). Do not ask leading questions.
- Talk directly to the person with a developmental disability. Ask for
help interpreting from the accompanying person if necessary.
- People in our society are allowed to make bad personal decisions within
certain limits. People with disabilities also are allowed to make bad personal
decisions,
but, again, the person should have the capability of understanding the consequences.
- Substitute Medical Decision-Makers
When a person is not capable of making a medical decision themselves,
the team may have to look for an alternate decision maker. The following
are points that
deserve consideration:
Guardian
- Not all parents of adults are guardians.
- Make sure the guardian has authority over medical decisions and that
the guardianship is current. Guardianship papers may have a specific time
limit. They should be
kept in the person's chart and kept current. If unsure of the status of the
guardian, call the person's case manager.
- Health Care Representative appointed by the person.
- A person with a disability may not have the capability to make complex
medical decisions but may be very capable of knowing who they trust to
make those decisions.
This is available to anyone in any living situation.
- Use the health care representative forms obtained from your local hospital,
Home Health Agency, or Oregon Health Decisions at 1 (800) 422-4805.
- The person and only that person can make the decision to appoint a Health
Care Representative. Two witnesses are required.
- Employees or owners of any type of residential service (group home,
supported living, foster home, etc.) are prohibited from becoming the Health
Care Representative,
unless related by blood or marriage.
- Health Care Representative appointed by the ISP (Individual Support Plan)
team.
- This is available only to individuals with developmental disabilities
who live in group homes or supported living sites (or foster homes with
a variance.)
- As a safeguard, the rule requires team consensus for significant medical
decisions, including surgery.
- This health care representative is prohibited from withholding or withdrawing
life support or gastric/jejunostomy tubes.
- Two members of the ISP team, one of which must be the case manager,
must complete training offered by the Division before appointing a health
care representative.
- Withholding or withdrawing life support can be authorized through Oregon
state law (ORS 127.635).
- Applicable in situations where the person/ patient is terminal (will
die even with treatment), permanently comatose, or end-stage Alzheimer's-like
diseases.
- Creates a safe harbor (protection against law suits).
- Uses a hierarchy of family and friends.
- Family or friends
- Not authorized or prohibited from making medical decisions by state
or federal law (statute or rule).
- Never been challenged in Oregon courts.
- Based on the premise that family and friends know what the person would
have decided (substitute decision) and they hold the person's best interest
at heart.
Nurses should be cautious if family or friends give evidence otherwise.
- The definition of family and friends has been stretched at times to
include the ISP team or members of that team.
Presumption of Consent
If there is no adequate substitute medical decision maker, the presumption
should always be that the person would desire complete, aggressive therapy. Exceptions
to this should only be made after input from all who know the person well. Examples
of instances where people would commonly refuse aggressive therapy include people
with terminal diseases and people who have had irreversible loss of many activities
that they desire.
In Oregon state law (ORS 127.580), there is a presumption of consent to a gastric/jejunostomy
tube. There are ways that the presumption can be overcome/overturned. If you
are faced with this situation, make sure that the case manager is actively involved.
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