Question of the Week

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 hospital."

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 experts said."

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:

  • 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. ...
If you are a minor, your family and/or legal guardian will be involved in all treatment planning decisions for you."

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

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