For the past 20 years, receptionists at St. Charles Bend and other hospitals have handed out forms giving their patients a chance to dictate how they want to die, the types of life-sustaining medical treatments they want their doctors to perform and who will make the ultimate call regarding life support.
Even with these efforts, a recent study has found less than a third of Oregon's adults and less than a fourth of its oldest residents had completed an advance directive, a physician order for life-sustaining treatment form (POLST), or any other document that spells out final wishes.
“Our mortality is at stake," said Dr. Laura Mavity, the medical director of St. Charles Health System's advanced illness management program. “It's hard for people to talk about these things, to carve out the time and think about 'what if?'"
But unless someone takes these steps, she argued, it's almost impossible for health professionals to determine what patients want. Their families could spend thousands of dollars a day on medical treatments, and that may be the exact opposite of what was wanted during the patient's final days.
For many older adults, death has become the elephant in the room — they know it's coming, but haven't taken the steps required to make sure they have some control over potentially life-prolonging medical interventions.
When she flipped her car coming home from work on Jan. 11, 1983, Nancy Cruzan become the central figure in the national debate surrounding a person's “right to life" and their right to choose how they die. Paramedics were able to restart her heart when they found her in a ditch next to her car, but they weren't able to prevent her from developing brain damage, because she stopped breathing for 10 minutes.
Doctors at the hospital diagnosed the then-24-year-old woman as being in a persistent vegetative state and hooked her up to a feeding tube for almost eight years. Her treatments cost the state of Missouri $125,000 a year, according to a 1990 New York Times article.
Four years after her accident, Cruzan's family decided it was time to have her feeding tube removed so she could die with dignity. A judge refused this request because there was no “clear and convincing proof" Cruzan wanted to die. The case went to the U.S. Supreme Court, which sided with the state of Missouri and against Cruzan's family's wishes in a 5-4 decision in June 1990. Cruzan was taken off her feeding tube the following December, but only after a few of her friends testified they once heard her say she did not want to live “like a vegetable."
The debate surrounding Cruzan's death prompted the U.S. Congress to pass the Patient Self-Determination Act, a piece of legislation that has required any health care facility that receives Medicare or Medicaid funding to inform patients about their state's laws regarding “right to life" issues and, if possible, give them an advance directive or a POLST form so they can put their wishes down on paper.
Under Oregon law, physicians must either comply with the wishes a patient has spelled out in his or her advance directive or transfer the patient to another physician or another health care facility if they deem the patient's wishes to be morally objectionable or medically inappropriate. Physicians who do follow a patient's advance directive are also shielded from any lawsuit that could result from their decision to discontinue his or her care.
More than 25 years after Cruzan was laid to rest, a U.S. Department of Health and Human Services report found only 18 to 36 percent of the country's adults had filled out an advance directive or a similar document. It delivered a stunning conclusion about the hundreds of thousands of people who had been placed on a ventilator or a feeding tube since Cruzan's accident:
“There is substantial evidence that the treatment people would choose to receive at the end of their lives is different from the treatment they receive," reads the report, which was presented to the U.S. Congress in August 2008. “Too often individuals (without an advanced directive) receive more aggressive care than they desire ~ Individuals' preferences for where they want to die (at home or in a hospital) are also often not met."
Dodging the conversation
Oregon residents fall near the middle of the range quoted in the Health and Human Services Department's report, according to the 2011 Oregon Health Insurance Survey, which found only 23.7 percent of the state's adult population has completed an advance directive (see “Advance directive").
These statistics worry Mavity because doctors and physicians have many different ways they can treat a patient's illness, extending lives if need be, or, at the opposite end of the spectrum, giving a chance to have a quiet and peaceful death without aggressive medical care.
“We're at a real weird time in our country right now," she said, explaining why it's important for people to have an advance directive or a similar document. “Our health system's really complicated and it's really important to know what someone wants."
Advance directives are also important because they can save a person's family members a great deal of stress, said Kelly Lapp, executive director of Oregon Health Decisions, a nonprofit organization that publishes the state's current advance directive guide.
“By completing their advance directive and having these discussions in advance, (people) are really giving a gift to their loved ones by making their wishes clear and known," Lapp said. “Many times (the opposite) happens and people experience great grief and guilt over not knowing what their loved ones wanted."
But Lapp also understands one of the main reasons people don't want to fill out these forms.
According to Oregon Health Decisions, many people don't have an advance directive because they are afraid of death and do not want to talk about it with their friends and family members. People may also think they are “too young to die" and because there is no rush, often set the forms aside even if they are given one at the hospital or another environment.
“The message we want to tell people is that whether you are 18 or 80 it is important to complete your advance directive," said Lapp. She says it's best for people to have these conversations before they “reach a certain age" or face a medical crisis so they have plenty of time to think it while avoiding the emotional turmoil.
Lapp said people also don't fill out their advance directive because they don't understand the form, which asks a number of questions about when a person would be placed on life support or a feeding tube, and the medical situations they apply to. It's also a common misbelief that people need a doctor, a lawyer or a notary to fill out the form, she said, adding all they need is a pair of witnesses, one of whom cannot be a relative.
Lapp's organization has sought to combat these issues with its “Key Conversations Planning Guide," a 31-page booklet that includes a copy of the state's advance directive, a series of discussion questions and a worksheet people can use to detail their final wishes.
Oregon Health Decisions has distributed this packet, which can be found on its website www.oregonhealth decisions.org, since 2008. Estate and financial planning professionals, church groups and long-term care facilities have also been handing the packet out, Lapp said, because people are often in an uncomfortable and scary situation when they check into a hospital and that may not be the best time to talk about their mortality.
Lapp said once people have made these decisions, it's also important for them to put their advance directive in a place where it's accessible and easy to find — her organization recommends people do not put them in a safe because someone may lose their key or forget the combination — and give a copy to their doctor so it can be included in their medical record.
Her organization also includes wallet cards in its advance directive packet that let people know an individual has an advance directive, where it can be found, and how they can reach the person who has been chosen to serve as the individual's medical representative.