Study: Directives help patients get care they want

Study: Directives help patients get care they want

10:40 PM PDT on Saturday, August 21, 2010

By LORA HINES
The Press-Enterprise

Four years ago, Luana Olsen of Hemet faced death on her terms -- choosing to forgo kidney dialysis and die at home with her husband and daughter nearby.

At 62, Olsen, who grew up as a competitive surfer in Orange County, spent the week before her death saying goodbye to friends and planning memorial services, including one held at the surfers' Boneyard section of Doheny State Beach at Dana Point.

Olsen's health slowly deteriorated after she was diagnosed with diabetes in 2000. She lost almost all of her eyesight and, eventually, her kidney function. Dialysis kept her alive for three months until June 16, 2006, when she decided she had had enough, knowing that her decision to stop treatment would be fatal.

"I didn't even try to talk her out of it," said her husband, Dennis Olsen, on Aug. 9, the day after what would have been the couple's 46th anniversary. "She was so damn active her whole life. She had no quality of life."

Luana Olsen represents thousands of patients nationwide who opt not to extend treatments, allowing them to die the way they choose. However, many people who want that control don't get their way, sometimes because they haven't made their wishes clear to their families or health care providers.

More than 80 percent of patients say they don't want hospitalizations and intensive care during the late stages of terminal illnesses, according to the Dartmouth Atlas of Health Care, a nationally recognized independent, nonprofit health care research group.

Yet, more than half of the people who said they wanted to die at home instead died in hospitals. A reason for the disparity usually is lack of communication between patients, families and health care providers. People don't like to talk about dying, experts say. Sometimes doctors and families push for treatments to keep patients alive, especially those who don't have written directives.

Experts say people should approach the discussion differently, planning for the way they want to live rather than prolong their death. Those directives should be written and signed by doctors.

RECEIVING TREATMENT

Researchers have found that nursing home patients who document their end-of-life treatment wishes are more likely to receive the care and medical interventions they want than other patients.

A recent study found that patients with special forms -- Physician Orders for Life-Sustaining Treatment -- stating their desires for pain relief were 59 percent less likely to receive unwanted treatments than those who only had do-not-resuscitate orders.

Bruce Barton, Riverside County's emergency medical services director, said paramedics began following instructions on such forms about two years ago.

"If we have a patient who wants noninvasive treatment but is in a lot of pain, we have a duty to act there," he said. "This form really goes a long way. It gives some direction. We can give pain meds and breathing treatments, but we won't do CPR."

The Inland area started using the forms about five years ago. The forms are used in about 250 nursing homes, hospitals and long-term care facilities statewide, including 15 in Riverside, according to the California HealthCare Foundation, an independent, nonprofit organization.

The medical orders, signed by doctors, allow patients to specify whether they want CPR, hospitalization and treatments, including antibiotics and feeding tubes.

"It's the patient's choice," said Dr. Terek Mahdi. "We'll get on board with you. We want to keep you comfortable."

Mahdi heads the Inland Empire Palliative Care Coalition. Palliative care helps patients define the quality of their lives, set goals and identify treatments they want.

CHRONIC ILLNESS

An estimated 90 million Americans have at least one chronic illness, according to the Dartmouth Atlas. About 70 percent of people die from chronic illness. Few die suddenly, health experts say.

However, patients with chronic illnesses in their last two years of life account for more than 30 percent of Medicare spending, with much of the cost going toward repeat hospitalizations, the Dartmouth Atlas states. Medicare is the federal health care program for the elderly.

Mahdi and other Inland area experts in palliative and hospice care say America continually spends money on life-saving care, even for the terminally ill, because people don't like talking about death.

"Physicians are trained to fix and treat people," said Dr. Gina Mohr, Loma Linda University Medical Center's palliative care director. "They're not really sure what else to do. They don't want to give up."

Doctors and patients look to her to assess patients' understandings of their diseases. She consults patients to identify treatment expectations and re-evaluate them as conditions persist. Decisions are based on how patients define their quality of life, Mohr said.

"We will provide care if patients ask for it," she said. "We can't prevent death, but we can postpone it. Some people want that."

OPT OUT

Thousands of Californians, including Luana Olsen, opt for hospice, which allows terminally ill patients to choose pain management and refuse treatments to prolong life. The process typically allows them to die wherever they choose.

Of the 242,053 people who died in California in 2008, at least 36 percent of them were in hospice at the time of death, according to the California Hospice and Palliative Care Association. Medicare covers hospice care for its beneficiaries once a doctor determines a patient has six months to live. However, the average hospice stay was about three weeks.

Holly Swiger, chairwoman of the California Hospice and Palliative Care Association's regulatory committee, said she thinks more terminally ill patients would choose hospice sooner if they received all the information they needed from doctors to make choices. She also is spokeswoman for VITAS Healthcare Corp., a national hospice provider.

"People decide too late because doctors decide too late," she said. "We should be asking people, 'How do you want to live?' instead of how to die. It's not about wanting death."

Luana Olsen lived. The daughter of surfing pioneers, she was the first woman surfer in 1961 to be photographed for Surfer magazine. An enlarged copy of the picture hangs on her bedroom wall. Olsen's first surfboard, a Hobie, rests on the floor below the photo.

She cared for her family, worked, traveled, became a businesswoman and developed a passion for nutrition. Lena Patton, Olsen's daughter, said it's ironic that someone devoted to nutrition education would unknowingly suffer from diabetes for years until it affected her sight and mobility.

"She was helping other people get well," Patton said. "After she was diagnosed, we asked, 'Gosh, how'd that happen?' "

Patton took her mother to her last dialysis treatment the Friday before Father's Day in 2006.

"She was sitting by the door in her wheelchair," Patton recalled. "She had a different look on her face. She just kept quiet.

"I said, 'Mother, are you done?' " Patton said as tears welled in her eyes. "She said, 'Yes, I'm done.' "

Olsen and her family celebrated that Father's Day by making potato salad and having a barbecue, said Patton, who lives in Hemet. Hospice doctors and nurses managed Olsen's pain and comforted her family until her death the following Saturday.

"It was tough," said Dennis Olsen. "She called the shots. She's always made the decisions."

Reach Lora Hines at 951-368-9444 or lhines@PE.com

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