December 3, 2007
If you are legally an adult (age 18 or older), then:
"You have the right to make important decisions about your
own health care. Federal law requires all Medicare and
Medicaid-certified facilities to ensure that patients know
they have the right to receive or refuse care, and to
express these wishes in documents that are kept by the
If you are age 17 or younger, then who has the right to
make these decisions can be more confusing.
Abraham was 16 when his case received national attention.
"Doctors tell him he needs a second round of chemo to get
rid of the cancer that reappeared in February. Abraham says
no, and his parents are backing him up. Now the Virginia
family is in juvenile court, the parents are charged with
medical neglect and the Accomack County social services
agency has joint custody of Abraham. The agency asked the
court to order the boy to undergo chemotherapy."
While those who are legally considered competent adults
"have the right to receive or refuse care," those under 18
are not old enough to make those decisions for themselves.
"Although he is not old enough to cast a vote or buy an
alcoholic drink, Abraham argues that he is old enough to
make decisions about treatment to save his life. 'This is
my body that I'm supposed to take care of. I should have
the right to tell someone what I want to do with this
body,' he says. 'I studied. I did research. I came to this
conclusion that the chemotherapy was not the route I wanted
to take.' ... A lump on Abraham's neck discovered last year
turned out to be Hodgkin's disease, which has a high
survival rate with treatment -- 85% of patients are alive
five years later, according to the American Cancer Society.
Chemotherapy and radiation left Abraham bald, racked with
fevers and too weak to play tag with his siblings. 'His
legs would buckle under him. It pretty much devastated
him,' his mother says. Another round, at higher doses,
'would kill me, literally. No joke about it,' Abraham says.
'The first round of chemo almost killed me in itself. There
were some nights I didn't know if I would make it.'"
In the case of Abraham, he made the decision. His parents
backed him up, and the courts took action. This is not the
only case of "Medical Neglect" where legal action has been
taken against the parents.
"In Texas last year, a court ordered 13-year-old Katie
Wernecke to live in a foster home for five months while she
received chemotherapy for Hodgkin's disease. Her parents
wanted her to take intravenous vitamin C instead. ... Other
families refuse treatment for children for cultural or
religious reasons: In 1999, a Massachusetts court ruled
that a hospital could give 17-year-old Alexis Demos a blood
transfusion after a snowboarding accident even though her
Jehovah's Witness faith led her to refuse it."
In a recent case (November 2007), another blood transfusion
for a teenager was refused on religious grounds. This time,
the results were different.
"A Washington State judge allowed a 14-year-old Jehovah's
Witness sick with leukemia to refuse a blood transfusion
that could have saved his life, a decision that has stirred
controversy among medical ethicists. ... Superior Court
Judge John Meyer denied a motion by the state government to
force Dennis to have a blood transfusion, saying the
eighth-grader knows 'he's basically giving himself a death
sentence,' according to local media reports. ... Dennis'
aunt, Dianna Mincin, is his legal guardian and is also a
Jehovah's Witness. She supported his decision to refuse
treatment. The case forced the judge into a difficult
balancing act: weighing Lindberg's right to make his own
decisions with the need to protect him, medical ethics
How each case is handled varies. While the laws are clear
for adults, what happens when teens want to refuse medical
treatment (and/ or their parents want to refuse treatment
for them) can vary dramatically.
"Adults have the right to refuse medical treatment, and
courts typically will defer to the decision of a child's
parent or legal guardian ... But courts have frequently
forced young children to have blood transfusions against
the wishes of their Jehovah's Witness parents. Several
ethicists questioned whether a 14-year-old was mature
enough to decide to refuse treatment."
"Typically" will let the parents make the decision, but
"frequently" they have required children to have blood
transfusions that they parents refuse for religious
reasons. Different courts could hear the same case, and it
could go either way. For minors, the law is unclear. Once a
person reaches the age of 18, there is less confusion.
Hospitals make it clear that adults have clear rights.
"We respect your right:
If you are a minor, your family and/or legal guardian will
be involved in all treatment planning decisions for you."
- To participate in the development and implementation of
the plan for your care
- To give informed consent prior to the start of any test,
surgery, procedure or treatment
- To be given a full explanation before you are transferred
to another facility, should the need arise, such as needing
a service not provided by Meriter
- To refuse any procedure or treatment
- To discontinue current treatment. If you elect to refuse
treatment, you will be informed of the medical consequences
of your decision
- To have an Advance Medical Directive (Power of Attorney
for Health Care or a Declaration to Physicians / Living
Will), which gives directions about your future medical
care or designates another person to make medical decisions
for you if you are incapable of doing so. ...
This varies very little from hospital to hospital. Most
adults are considered capable of making decisions about
their own medical care.
"As a competent adult, you have the right to decide to
accept or refuse any medical treatment. 'Competent' means
you understand your condition and the results your decision
may have. As long as you are competent, you are the only
person who can decide what medical treatment you want and
do not want to receive. Your doctors will give you
information and advice about the pros and cons of different
kinds of treatment, but only you can choose whether to say
'yes' or 'no'. You can say 'no' even if the treatment you
refuse might keep you alive longer and even if your doctor
or your family wants you to have it."
A hospital is required to make sure that the patient has
all the information needed to make the decision, but the
the law clearly states that the final decision about what
care to receive (or not) is up to the patient.
"The 1990 Patient Self-Determination Act (PSDA) encourages
all people to make choices and decisions now about the
types and extent of medical care they want to accept or
refuse should they become unable to make those decisions
due to illness. The PSDA requires all health care agencies
to recognize the living will and durable power of attorney
for health care. The Act applies to hospitals, long-term
care facilities, and home health agencies that receive
Medicare and Medicaid reimbursement. Under the PSDA, health
care agencies must ask you whether you have an advance
directive. They must provide you with educational materials
about your rights under state law."
American Cancer Society
Advance directives? Living wills?
"Advance directives are documents signed by a competent
person giving direction to health care providers about
treatment choices in certain circumstances. There are two
types of advance directives. A durable power of attorney
for health care ('durable power') allows you to name a
'patient advocate' to act for you and carry out your
wishes. A living will allows you to state your wishes in
writing, but does not name a patient advocate. ... Many
people have strong feelings about the kind of medical care
they would like to receive or refuse in certain
circumstances. An advance directive allows you to clearly
state your feelings."
Questions of the Week:
Who should be responsible for making medical decisions for
teens and children? What if two groups (such as teens and
their parents, or parents and doctors) disagree? Should
children, teens, parents, doctors, courts, or someone else
have the final say? Who should determine at what age
children and teens become a part of the decision making
process? How might this age determination vary based upon
whether or not it is a life-threatening issue?
Please email me with any ideas or suggestions.
Note: Due to increasing amounts of SPAM sent to this account, please include "QOW" in the subject line when sending me email.
I look forward to reading what you have to say.
Health Community Coordinator
Access Excellence @ the National Health Museum