Title
Respecting all human life with health care

The case of Terri Schiavo has turned national attention to the issue of futile care and quality of life.

Terri was 26 years old when she suffered brain damage from a sudden collapse. Terri receives her food and water by means of a feeding tube. According to Terri's family, Terri smiles, laughs and cries. Terri recognizes voices and responds.

Terri is not on a respirator or any artificial life support; however, her husband has worked for years to remove the feeding tube which provides Terri with basic nutrition and hydration. The feeding tube was removed, but on October 21, 2003, the Florida Legislature passed bill 35E, "Terri's Law," into law.

This law allowed Florida's governor, Jeb Bush, to issue an Executive Order allowing nutrition and hydration to be returned to the disabled Florida woman. Terri had been without nutrition and hydration for more than 6 days.

Terri's parents have not been given any information about her current medical condition, but she appears to be doing well and is responding appropriately to the presence of her loved ones.

Tragically, denial of basic sustenance to people with disabilities is neither unusual nor new in our country. Denial of treatment, including nutrition and hydration, to those who cannot speak for themselves is not uncommon. Terri's case is unique. Terri's parents have worked tirelessly to keep Terri hydrated.

The publicity of this case has encouraged people and families to investigate the reality of basic, proper health care.

After reading a newspaper article on futile care, Norma VanKuiken called Right to Life of Michigan to share her personal experience.

In February of 2002, Norma received a call that her father-in-law had fallen and needed help. He was a spry 89-year-old, active and vivacious, mowing his lawn and frequently visiting the family cabin.

"The best words to describe my father-in-law are extremely active," Norma said.

Norma's father-in-law was hospitalized. The VanKuiken family didn't know the status of his condition. The hospital personnel was very vague. What was clear, Norma recalled, is that her father-in-law had issues with his right side. "We knew something was wrong; it appeared to us to be a stroke," Norma said.

What was clear, Norma recalled, is that her father-in-law had issues with his right side. "We knew something was wrong; it appeared to us to be a stroke," Norma said.

The VanKuikens purposefully took measures into their own hands. The family insisted that a CAT scan be conducted. "We needed to know the extent of the damage so that we could evaluate treatment options," Norma said.

A neurological exam took place, too, due to the persistence of the family.
Unfortunately, doctors were not helpful and the lack of project management was affecting Norma's father-in-law's care. No one seemed concerned about keeping the family up-to-date with the situation. The VanKuiken family was asked to consider dignity and comfort for the patient.

The VanKuiken family did just that. It took four members of the family to actively advocate for proper care before it was given.

Thankfully, the VanKuiken family acted on their love and knowledge of their father's spirit. "We treasure the time we have with him."

Now, at the age of 91, Norma's father-in-law is doing incredibly well and was recently married. Norma said, "We fought for his care and now our memories together are extraordinary."

The VanKuiken family has no desire to share the names of the doctors or the hospital with which they worked; their only goal is to be of help and encouragement to others.

The families of patients should expect full and regular reporting from doctors in such circumstances. And as Norma stated, "Keep pushing and prodding for answers to questions."

Wesley Smith, an attorney for the International Anti-Euthanasia Task Force, noted, "Forewarned is forearmed. Patients and families need to be prepared to fight for wanted care if they are to surmount the barriers that the purveyors of the new medicine are increasingly erecting between defenseless patients and wanted life-sustaining treatment."

Futile care theory holds that when a physician believes the quality of a patient's life is too low to justify life-sustaining treatment, the doctor is entitled to refuse care as "inappropriate"—even if the treatment is wanted. Smith says, "Eventually, this will include all of us. We ignore the threat of futile care theory at our own peril."

As technology has made medical treatment increasingly complex, many people are interested in preserving their ability to have control over their medical decision. In general, everyone agrees that individuals have the right to determine what type of medical care they will receive and when.

Michigan law recognizes that competent adult patients maintain a right to accept or refuse any treatment that is being utilized or offered them. Public Act 312 of 1990 allows people, through a written legal document, to appoint a person to make medical treatment decisions for you if you become unable to do so. The document is called a Durable Power of Attorney for Health Care. Right to Life of Michigan offers a booklet, Protecting Your Rights as a Patient: Durable Power of Attorney for Health Care. The booklet contains information about durable power documents as well as a form which can be used as a Durable Power of Attorney for Health Care. To receive this information, please call the RLM State Central Office at (616) 532-2300 or e-mail info@rtl.org with your mailing address and request Protecting Your Rights as a Patient.

Back to the table of contents