HF3255 Testimony for Civil
Law Committee, Minnesota House of Representatives
03/27/06
My name is Janet Conn.
I am the president of Compassion & Choices of Minnesota,
an organization supporting the individual’s right
to make his or her own end-of-life choices.
I am speaking in opposition to HF 3255 because it is bad medicine
and because it violates the rights of patients, families and physicians.
On the positive side, Compassion & Choices
is a strong supporter of advance Health Care Directives,
and would be happy to see a statewide public campaign promoting them.
HF 3255 has been labeled the
Starvation and Dehydration of Persons with Disabilities Prevention Act,
a misleading and inflammatory title.
The issue it attempts to address is not the nonexistent practice
of starving to death the disabled - the blind, the deaf, the
wheelchair-bound.
No one is doing that.
Rather, the issue is what to do about food and water
for people in persistent comas or vegetative states,
patients who are permanently unconscious.
The bill seems to be based on the assumption
that it is cruel and inhumane not to supply nutrition and hydration
to a patient who is in a persistent vegetative state (PVS)
or who is dying, but this is not the case.
Forcing food into dying or PVS patients
causes much more distress, adverse reactions and suffering.
The medical profession recognizes many circumstances
in which it is appropriate to withhold or withdraw artificial hydration
or nutrition.
I have included attachments from medical sources
with my printed statement to provide more details,
since this is not a medical committee.
This committee is charged with examining the impact of the bill
on the rights of the citizens of Minnesota, and a severe, negative
impact it would be.
HF 3255 would require a particular course of treatment
for patients who cannot communicate their wishes.
In fact, it dictates that we presume
that is what they would have wanted, what they think.
It grants an exception for someone with an advance directive
that spells out her instructions with regard to nutrition and
hydration,
but this could be challenged as not “applicable” in this case.
And if I have completed a directive and named an agent to make
decisions for me,
but have not been specific about nutrition and hydration?
Section 145b and c - the living will/healthcare directive statutes -
give my designated health care agent, or proxy,
the power to direct treatment on my behalf.
The bill under consideration takes that power away,
denying me the right to have the person I want saying what will happen
to me.
And if I do not have a directive, this bill overrules
what my family and my doctors think would be best for me.
It expressly denies everyone - proxy, parent, spouse, physician -
the authority to decide to withhold or withdraw hydration or nutrition.
Under existing law, it is their right, even their responsibility,
to make decisions in my best interest
and in accordance with their understanding of my wishes,
when I cannot make or communicate decisions for myself.
HF 3255 takes away that right and that trust.
The bill does allow two exceptions:
there could be a medical decision that such treatment
“would not contribute to sustaining that person’s life
or to providing comfort to that person”,
or there could be “clear and convincing evidence”
that this was the patient’s decision prior to becoming incapacitated.
Both of these conditions depend on opinions and interpretations
that could and would be argued indefinitely in protracted court cases
while the tubes stayed in place, as in the Terri Schiavo case.
After years of being kept “alive” with feeding tubes,
Schiavo’s brain was found to have withered to a truly ‘vegetable’
state.
A person kept “alive” like this is further denied the right to die with
dignity.
If there are people who would want this kind of existence for
themselves,
let them have it, but please don’t force it on the rest of us.
Up to now, Minnesota has recognized, respected and protected
the right of a patient to refuse any given medical treatment;
the right of a competent adult to designate an agent for healthcare
decisions;
the right of families to make treatment decisions in the absence of a
legal agent;
the right of physicians to advise patients and their families
about those decisions based on the best medical practices.
I urge you to reject HF 3255 because it violates all those rights,
and does so based on medical misinformation.
By telling doctors how to treat their patients,
it actually violates the patient’s right to the best, most appropriate
medical care.
Attachments to Testimony on HF 3255 by Janet Conn
I. Excerpts from:
Withholding and Withdrawing Life-Sustaining Treatment
RICHARD J. ACKERMANN, M.D. Mercer University School of Medicine,
Macon, Georgia
From American Family Physician October 2000
Published by the American Academy of Family Physicians
Are physicians legally required to provide all life-sustaining measures
possible?
No. To the contrary, patients have a right to refuse any medical
treatment,
even life-sustaining treatments such as mechanical ventilation,
or even artificial hydration and nutrition.
Is withdrawal or withholding of treatment equivalent to euthanasia?
No. There is a strong general consensus
that withdrawal or withholding of treatment
is a decision that allows the disease to progress on its natural
course.
It is not a decision to seek death and end life.
Euthanasia actively seeks to end the patient's life.
Physicians have difficulty with the decision
to initiate or continue artificial nutrition and/or hydration.
Food and water are symbols of caring,
so withholding artificial nutrition and hydration
may be misperceived as neglect.
Some physicians may find it unethical
to withhold or withdraw these interventions;
however, strong legal support is in place
for thoughtful withholding or withdrawal of fluids and nutrition at the
end of life.
11 Table 31 lists situations when withdrawing/withholding
artificial nutrition and hydration may be appropriate.
Potential reasons to withhold or withdraw artificial hydration or
nutrition
The patient or decision maker, after being provided appropriate
counseling and options,
decides against this intervention to reflect personal values.
When the primary goal of the patient is palliation of symptoms
When the intervention is bound to fail
(e.g., in patients with a disease that is uniformly fatal)
When the patient is dying, and the intervention
is merely prolonging the dying process or causing suffering
When a patient has moderate or severe, irreversible cognitive
impairment
(e.g., Alzheimer's dementia or vascular dementia)
When the intervention causes complications
(e.g., agitation requiring sedation or physical restraints, infection,
multiple tube obstructions or withdrawal, aspiration pneumonia)
To help relieve symptoms of fluid overload
(e.g., dyspnea, diarrhea, urinary frequency or bowel obstruction)
in terminally ill patients
When the patient has end-stage organ failure (e.g., respiratory,
cardiac, renal)
When other end-stage diseases, such as metastatic cancer
or advanced acquired immunodeficiency syndrome, are present
When a patient has had a stroke, is profoundly impaired
and does not recover useful swallowing function
When the risks exceed the benefits
When the quality of life is poor, as defined by the patient
Information from Education for Physicians on End-of-Life Care Trainer's
Guide,
Module 11, withholding, withdrawing therapy.
In: Emanuel LL, von Gunten CJ, Ferris FD.
Education for physicians on end-of-life care/
Institute for Ethics at the American Medical Association. Chicago, IL:
EPEC Project, The Robert Wood Johnson Foundation, 1999.
Misperceptions are common.
The family may believe that a lack of appetite and poor oral intake
is causing the current disability, assuming that
"if only Dad got more fluids and nutrition, he would be stronger."
Clear, simple language will focus on the true cause of the situation.
For example, statements like
"The cancer is taking all of your strength,"
or "The fact that your heart is so weak is causing you to lose your
appetite and feel so tired"
will help clarify the cause of the patient's lack of appetite and oral
intake.
In equivocal cases, a monitored clinical trial of hydration may be
warranted;
however, artificial hydration may worsen physical symptoms
such as edema, breathlessness, diarrhea, vomiting or incontinence.
Near the end of life, patients and families may naturally
be concerned that the lack of fluids and food will cause suffering.
While acknowledging their concerns, physicians can reassure them
that dehydration is a common, natural part of the dying process.
It does not affect the dying patient in the same way
as a healthy person who feels thirsty on a hot day or dizzy when
standing.
Trying to reverse a natural trend often leads to substantial
discomfort,
without affecting the outcome.16-18
If a patient is not hungry or thirsty,
then providing artificial fluids and nutrition will not relieve the
symptoms.
Some patients may even make a conscious choice to stop eating and
drinking.
This article is abstracted from the
Education for Physicians on End-of-life Care (EPEC) curriculum,
a program of the Institute for Ethics at the American Medical
Association.
© EPEC Project, The Robert Wood Johnson Foundation, 1999.
************************************************************************
II. From the website of the American Academy of Family Physicians,
familydoctor.org:
Artificial Hydration and Nutrition
When do people need artificial hydration and nutrition?
If a patient isn't able to swallow because of a medical problem,
he or she can be given fluids and nutrition in ways other than by
mouth.
This is referred to as artificial hydration and nutrition.
This is sometimes done when someone is recovering from a temporary
problem.
It may also be done when someone has an advanced, life-threatening
illness and is dying.
What is involved in artificial nutrition and hydration?
An intravenous (IV) catheter (a thin plastic tube that slides in over a
needle)
may be placed in the vein under the patient's skin.
Fluids and sometimes nutrition are given through the catheter.
Another method of artificial nutrition and hydration
is through a plastic tube called a nasogastric tube (also called an NG
tube).
This tube is put through the nose, down the throat and into the
stomach.
It can only be left in for a short time, usually 1 to 4 weeks.
If the tube has to be in longer, a different kind of feeding tube may
be used.
It's placed into the wall of the stomach (also called a PEG tube or
g-tube).
What happens if artificial hydration or nutrition are not given?
Persons who don't receive any food or fluids
will eventually fall into a deep sleep (coma) and usually die in 1 to 3
weeks.
What are the benefits?
A person with a temporary illness who can't swallow may be hungry and
thirsty.
A feeding tube may help.
Sometimes a person may become confused because of dehydration.
Dehydration is when the body doesn't get enough fluids.
Giving a patient fluids through a tube help dehydration
and may lessen his or her confusion.
Giving fluids and nutrition helps the patient as he or she is
recovering.
For a patient with an advanced life-threatening illness who is dying,
artificial hydration and nutrition may not provide many benefits.
Artificial hydration and nutrition in these patients
may make the patient live a little longer, but not always.
What are the risks?
There's always a risk when someone is fed through a tube.
Liquid might enter the lungs.
This can cause coughing and pneumonia.
Feeding tubes may feel uncomfortable.
They can become plugged up, causing pain, nausea and vomiting.
Feeding tubes may also cause infections.
Sometimes, patients may need to be physically restrained or sedated
to keep them from pulling out the feeding tube.
How do we decide whether to use artificial hydration and nutrition?
The patient and his or her family should talk with the doctor
about the patient's medical condition
and risks and benefits of giving artificial hydration and nutrition.
Each situation is different.
Your doctor can help you make the decision
that is right for the patient and family.
Some information in this handout comes from
Education for Physicians on End-of-Life Care Trainer's Guide,
Module 11, withholding, withdrawing therapy.
In: Emanuel LL, von Gunten CJ, Ferris FD.
Education for physicians on end-of-life care
/Institute for Ethics at the American Medical Association. Chicago, IL:
EPEC Project, The Robert Wood Johnson Foundation, 1999.
Source
Withholding and Withdrawing Life-Sustaining Treatment
(American Family Physician October 1, 2000,
http://www.aafp.org/afp/20001001/1555.html)