Download Major Ethical Issues

Major Ethical Issues
Informing the patient
Protection from unproven endangering therapies
Medical power of attorney in the event of cognitive
impairment
Therapeutic trials
Genetic testing
Institution of tube feeding
Assisted and Permanent ventilation
Terminating ventilation and end-of-life decisions
Assisted suicide
Telling the diagnosis
•A patient sent to a clinic labeled ‘ALS’
would certainly realize that ALS is a
possibility
•The ALS name might inhibit physicians
from referring patients if they were not
certain of the diagnosis
•Unfortunately, this practice likely delays
diagnosis
•But most patients have a strong feeling
they have ALS
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How much to impart
Important to assess what each individual
wants or can take in at first visit
Usually better to have a follow-up in 7-10
days for in depth discussion
Hard time lines and prognosis should be
avoided - cross bridges as they come
The diagnosis is highly suspect but
uncertain be up-front about this
Doctor-Patient relationships
• Paternalistic - doctor makes all the
treatment decisions and patient passively
acquiesces
• Informed - doctor informs patient of all
the treatment options with risks and
benefits but makes the decisions
• Shared - doctor and patient share in all
decision making attempting to come to a
consensus mutually agreeable to both
The ALS Patient is
BOSS
• It is the patient that has the final say
–
• Not the physicians
• Not the spouse
• Not relatives, friends or others
PROTECTION FROM
UNWARRANTED, DANGEROUS OR
EXPENSIVE UNPROVEN
THERAPIES
Clinical Trials
• Consent form must be comprehensive,
non-coercive and patients must be
allowed to withdraw at any time
• The risks posed by the trial must be
minimal and not decrease quality of life
or natural disease progression
• Results must not misrepresent or overinterpret results and false hope must be
avoided
Genes and ALS/FTD
(Now 29 genes identified)
Ethics of Genetic Testing
• Diagnostic tests determine the cause of
disease in a patient with ALS
• Predictive tests are those in which a person
is at risk for ALS, has no symptoms
Difficult Issues
• Is it better to know or not to know that
you have the gene(s) for ALS and may
develop the disease?
• Age of consent
• Having the test does not mandate that
you have to know the result
• Treatment needs to be available
Prophylactic role for gastrostomy
in preventing nutrition-related
weight loss
• Maintaining adequate nutrition
increases survival in ALS
• gastrostomy is a safe alternative to
oral feeding.
• If the vital capacity is less than 50%
the risks of a gastrostomy may
outweigh its benefit.
Gastrosomy tube does not
preclude eating by mouth
• It is important to introduce the idea of
gastrostomy soon after the development
of any bulbar symptoms.
• This allows the patient to feel active in
the decision rather than under pressure
before further respiratory decline.
Permanent Ventilation
and End of Life Decisions
• Timing is all-important
• Major issues should never be discussed as an
emergency
• Too often ALS patients are admitted to ERs
because of sudden respiratory distress and
undergo tracheostomy without prior full
discussion of the consequences.
You have ethical and
legal rights
• Permanent ventilation implies to patients they
do not have legal right to withdraw from its use
in the future - you do.
• Patients can accept life-sustaining therapies
such as short-term or long-term mechanical
ventilation knowing that they have the legal
and ethical right for cessation
• This can be accomplished without suffering,
using deep sedation
ASSISTED SUICIDE
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Euthanasia "painlessly killing to relieve
suffering." But the exact meaning of this
phrase remains up for interpretation.
Assisted suicide the patient performs the last
act with assistance of a physician or other
Withdrawal of life support withdrawal of life
support, such as turning off the ventilator at the
family's request, is normally not considered
euthanasia and is legal.
Stephen Hawking