The Durand family is unique. All six of the children have Marfan Syndrome in varying degrees, as does the father, but all the children can hear. Both parents are deaf.
The children learned to communicate with their parents through a combination of speaking/lip reading and American Sign Language. The parents also used email and texting. Thus, the family was able to communicate with one another without formal ASL training. The Durand family was faced with a difficult situation when one of the older children, Priscilla, brought her brother Shaun, 31, to the hospital after two major heart surgeries and a diagnosis of congestive heart failure. He was admitted to the ICU.
Relaying the patient's condition
Shaun had executed a healthcare directive when he turned 31 designating Priscilla as his agent for healthcare decisions. Priscilla always was the one to try to relay information concerning his condition to the parents.
Priscilla and another sister told their parents about Shaun's hospitalization and the parents immediately came to the hospital. The mother almost immediately requested a live ASL interpreter.
An advanced practice RN initiated a conference with the parents and Priscilla concerning Shaun's "comfort care," after which the hospital requested on-site ASL interpreter services. The parents and Priscilla met again with the APRN, who shared with them Shaun's grave condition and the limited medical options. The parents asked few questions and Priscilla did most of the explaining to her parents. Another meeting with the parents, Priscilla, the physician and the interpreter took place later that day.
Shaun's condition worsens
Unfortunately, Shaun's condition continued to deteriorate and interventions needed to be completed without an interpreter present, including deactivating Shaun's defibrillator. The patient also experienced seizures. Despite this deterioration, no one told the family Shaun might die that day.
The parents left the hospital, the father going to work and the mother home. The mother returned to the hospital later that evening and immediately realized Shaun was dying.
She requested a teletypewriter from the nurse on duty so she could contact her husband. The nurse initially denied her request, stating that TTYs are only provided to patients but did provide her with one after a second request. However, the mother did not know how to work the TTY, and while trying to contact her husband, Shaun died.
A lawsuit is filed
Shaun's parents and his sister Priscilla filed a case in federal district court alleging the hospital violated the Americans With Disabilities Act and state law for failing to provide sufficient auxiliary services (e.g., interpreters and TTY) for the parents and by relying on Shaun's sister, Priscilla, to "interpret" for her parents. They asked for a summary judgment against the hospital. The hospital asked the court to enter a summary judgment in its favor.
The district court carefully reviewed the facts and the applicable laws. It granted the hospital's motion for summary judgment and denied the Durand's motion.
The court opined the parents were not patients. In fact, they played no role in his healthcare. As a result, the hospital had no duty to ensure they received information about his healthcare. The ADA entitled them, the court continued, "to an equal opportunity to gain the same benefits accorded similarly-situated hearing visitors." The hospital did provide interpreters and the parents testified in their depositions they understood the focus of their son's care would be to comfort him. The allegation by the mother that the hospital discriminated against her when she initially requested the TTY also is without merit, according to the court. The mother had no plan to have one available. When she needed it, the hospital did ultimately provide her with one, but she was unable to operate it. Priscilla's claim she was discriminated against was based on the fact that she was the daughter of the Durands. The ADA does prohibit discrimination against someone who has a relationship with a disabled person. However, in this matter, the hospital fulfilled its obligation to the parents. And, the court pointed out, there was no evidence that the hospital discriminated against Priscilla due to her relationship to her parents. Last, the court opined the hospital did not "compel" her to interpret for her parents or even requested that she do so. Priscilla's "gratuitous" signing for her deaf parents was just that and the ADA does not protect such an individual. This case illustrates how a court must make decisions based on the "plain language" of a statute and of previous court decisions. It also illustrates what a nurses can do to protect themselves, patients and family members.
Keep these tips in mind
- Become familiar with the ADA and its mandates.
- Know your facility's policy on the use of interpreters and follow it without fail.
- Remember to treat all patients and families with courtesy and respect, whether disabled or otherwise.
- If uncertain about your obligations when working with any disabled patient and his or her family, seek guidance from your nurse manager or nurse supervisor.
- Never ask or "compel" a family member to act as an interpreter.
Take these courses on 'Marfan syndrome and communication issues'
CE715: Advance Directives: Conversations Matter (1 contact hr) Healthcare professionals have an important role in helping patients and families formulate advance directives. Despite intensive efforts, most Americans don't have an AD and may face a life-threatening illness without a plan to guide their healthcare providers or relatives. End-of-life care experts stress the need for major changes in the approach to promoting ADs, including a focus on promoting ongoing dialogue between patients and healthcare providers. As patient advocates, clinicians are in a strong position to work with patients and other healthcare professionals to make these important changes occur. CE487: Marfan Syndrome: Inherited Disorder has Far-Reaching Effects (1 contact hr) Marfan syndrome is an autosomal-dominant inherited disorder of the connective tissue, occurring once in every 10,000 to 20,000 births in the United States. Patients diagnosed with Marfan syndrome may experience involvement of the aortic valve, aorta, eyes, skeleton, and other organs and structures. Health problems vary among patients. Healthcare providers who work in diverse settings should be well informed about Marfan syndrome so that they can evaluate patients with signs for early diagnosis and appropriate treatments and interventions. Although there is no cure for Marfan syndrome, treatment can prevent or minimize complications. Knowing the importance of early recognition, diagnosis, and treatment can help healthcare professionals treat patients with Marfan syndrome and help these patients lead long and healthy lives.
