People around the country are watching Hawaii for a court decision concerning Karen Okada. In 1998, the now-95- year-old woman had drawn up a document known informally as a "living will," declining efforts to prolong her life artificially. The problem: That document clashed with what her family said would be her current wishes.
Those who file the current version of what’s now called an "advance care directive" may not have this problem because of revisions in the law, but the Okada documents predated all that. The interesting legal question the Hawaii Circuit Court must decide is: What directive will prevail?
Will it be the wishes expressed in the "death with dignity declaration," or the instructions issued by Okada’s brother, George "Scotty" Koga, a former City Councilman? Koga was designated as a proxy in a separate "durable power of attorney" document, authorized to take charge of his sister’s health care decisions if she’s incapacitated.
The case isn’t expected to resolve for several more weeks, said the family’s attorney Scott Mazdakean, who added that Okada is now in a nursing facility.
The complaint was filed in September by The Queen’s Medical Center, which has argued that Okada’s traumatic brain injury led to a permanent loss of capacity, and that the declaration must be followed. The family counters that she effectively revoked that declaration in July. According to court documents, a grandson asked her whether she wanted to get well and go home, and she pushed down her covers and made motions to get out of bed.
Setting aside the complexities of litigation, the human story is a more exquisitely personal conflict that could affect many families. Mary Steiner, whose nonprofit organization helps counsel families contemplating these issues, was reminded that she needed to confront them herself.
As the Hawaii campaign manager for the local branch of the national organization Compassion & Choices, Steiner already had a living will. But like Karen Okada, it had been drawn up 15 years ago. It was time to take another look at it.
"Most families do not talk about death or dying," she said. "This family thinks, the same way we talk about birth, we talk about death."
So about a week ago, Steiner and her husband sat across from each other at their dining table and reviewed their documents, and their attitudes. What was their paramount concern in their final stage of life? Loss of independence? Pain?
"We spent about two hours at it the other day," she added. "I thought we’d have different feelings about issues, but we’ve been married 35 years, and we were on the same page."
James Pietsch, a law professor at the University of Hawaii and director of its Elder Law Program, believes the legal landscape increasingly supports patient rights.
"The overwhelming response from the medical and legal professions is your preferences are primary and your agent should carry out your preferences," said Pietsch, who points to the enactment of the Uniform Health Care Decisions Act as a turning point. That happened in 1999, the year after the Okada documents were signed.
"It combines individual instructions for health care with the designation of the power of attorney," he said. "There are not two documents. It’s clear who has precedence."
The long-form advance directive is available for downloading from the Elder Law Program website (www.hawaii.edu/uhelp/healthcare.htm). Among the other resources (see story, page F4) is a briefer form, printable on a single sheet) known by the acronym POLST: Physician Orders for Life Sustaining Treatment.
This summarizes a range of medical instructions in a standardized way that can be easily understood by health care providers, from first responders to the surgeon in the emergency room. It’s not meant to replace the advance directive, but to be more portable.
The advent of electronic medical records that is being promoted through health care reform may take care of that portability. Meanwhile, Steiner said, she has uploaded her form to an free online storage site known as DropBox (www.dropbox.com), which makes it accessible from anywhere.
All of these improvements further bolster a body of state and federal statutes and case law that have strongly affirmed patient rights, Pietsch said. He cited a federal law, the Patient Self-Determination Act, that has served as a model for state legislatures in making it clear to individuals that they can control the use of life-prolonging treatments.
In Hawaii, he said, "the current law makes it easy for a person to execute a document and can make it very clear that an individual’s health care instructions are to be followed, and not overridden, by the health care agent.
"Doctors and other health care providers are required under the law to follow the patient’s wishes if they are clear," he added. "Individuals with older documents, prior to 1999, especially should consider making newer documents."
The advance directive gives the signer the option of providing information in five categories:
» Designation of power of attorney for health care. An alternate agent can be named in the event your first choice is unwilling, unable or unavailable to perform that duty.
» Expression of wishes about the provision, withholding or withdrawal of treatment to keep the patient alive, as well as pain-relief treatments and artificial nutrition and hydration.
» Decisions about the disposition of the patient’s body and organs.
» Selection of physician and facility to have primary responsibility for care.
» Instruction on any religious or spiritual considerations.
Unfortunately, Pietsch added, most people still don’t draw up such documents, or even think to do it until a crisis is upon the family. His suggestion: Draw up an advance directive as a gift to family and friends, "since you are the one making the health care decisions and appointing someone to carry them out rather than leaving it to chance, or to a court.
"It also helps preserve and extend your autonomy and self-determination when you are no longer able to communicate," he said.
People have more options to change their mind later on than they might think. The designation of the power of attorney needs to be made in writing or by informing the primary care physician, Pietsch said, but the individual instructions about end-of-life care can be revoked more casually, and verbally, by the patient.
It’s important to put those instructions in place. Not everyone feels the same way, which is why, Steiner said, choosing the right person to carry out your wishes and making sure they’re crystal-clear is critical in end-of-life planning.
"Communicate, communicate, communicate," she said. "Choose your proxy wisely.
"And every doctor you have to go to for any reason, let them know about your instructions and ask them if they could follow them."
It’s never too soon to do it, either. A life-threatening illness or injury could happen anytime, said Steiner, who pointed to the sad case of Nancy Cruzan, the subject of a "right to die" case in New York. Cruzan finally did die in 1990 at age 33.
"Take a look at the situation of a young woman on Long Island, taken off life support," she said. "You never know what’s going to come around the corner."