As she sat in her wheelchair, 95-year-old Karen Okada wrapped her delicate fingers around her 23-year-old grandson’s index finger while he talked to her during a recent morning visit.
"This is early for you, yeah, Bachan," said Kevin Okada, affectionately using slang for "grandmother" in Japanese.
He didn’t expect an answer.
Family members say Okada hasn’t been able to speak since she suffered a stroke almost two years ago, but is able to communicate in other ways: mouthing words, holding hands, nodding or shaking her head and blinking her eyes.
Last fall, when she caught pneumonia and became unresponsive, family members took her to the hospital, where she became the focus of a dispute over prolonging life artificially.
Okada said the family is pleased with the level of care and the personal attention she is receiving at a care home in Waipahu.
In her air-conditioned room, a framed photo of Okada and her brother sits atop her dresser near a twin bed covered with a lavender-and-cream-colored Hawaiian quilt. She apparently recognizes her brother, mouthing his name, Mitsuru, when she sees his image.
During a recent visit a caregiver walked in to check on her and massaged her calves and feet as Okada sat in her wheelchair.
Her face also lights up when family members visit, Kevin Okada said.
"We noticed a lot of improvement."
Long after the legal heat has faded, Okada’s experience continues to resonate in the death-with- dignity discussion: At issue is whether a patient would prefer to avoid extreme medical intervention that may prove futile or other artificial measures such as feeding tubes. Advance medical directives allow a person to make that choice clear before an emergency arises.
In 1998 Okada signed two documents: a declaration indicating that she did not want any artificial means of prolonging her life, and another document that gave her younger brother, former Honolulu City Council Chairman George "Scotty" Koga, power of attorney to make advance health care decisions on her behalf.
In 2011 she suffered a stroke. When she came down with pneumonia last fall, family members took her from Hale Nani Rehabilitation and Nursing Center to Kuakini Medical Center, where in December 2011 doctors placed her on a feeding tube.
"She was really unresponsive," said Koga’s attorney, Scott Makuakane.
Because she had signed two documents, it was unclear what her wishes were.
When she was transferred to the Queen’s Medical Center, doctors there wanted to remove the feeding tube. Attorney William Hunt, who represented Queen’s, said the hospital’s position was in line with Okada’s death-with-dignity declaration.
Koga, however, didn’t want his sister’s feeding tube removed.
The case found its way to Circuit Court but became moot when Okada’s family moved her to an Aiea nursing home with her feeding tube intact.
Makuakane recommends that families discuss their advance health care directives with one another to ensure their wishes are clearly understood.
"The more information you give them, the better," he said. "Don’t just have documents prepared. Talk about it with your family."
If a loved one doesn’t want his or her life to be maintained by artificial means, there needs to be a clear indication of whether the doctor or a family member should make the final decision, he said.
James Pietsch, director of the University of Hawaii Elder Law Program, said Okada signed her documents a year before Hawaii enacted the Uniform Health Care Decisions Act, which gives a patient a better ability to express treatment decisions, as well as who will carry out those decisions.
"The communication part is the most important between the treatment team, family members, spiritual advisers," he said.
Makuakane also advised people as young as 18 to have a written directive.
"You never know when something is going to happen," he said.
Okada’s condition has been up and down since her family took her out of Queen’s, first to an Aiea nursing home and then a Waipahu care home.
Kevin Okada said the caregiver often calls to update him on his grandmother’s condition.
Soon after she left the hospital, she gained 20 pounds and became more responsive.
But in early March she went into respiratory distress and spent two weeks at Straub Clinic & Hospital. She lost five pounds and now weighs 90.
Okada’s caregiver, who asked not to be identified, would like her to regain those five pounds.
"She’s more alert when she gains weight."