To treat or not? Question looms for elderly and sick

When Augusta Thomas was diagnosed with leukemia at age 82, doctors presented a life-or-death choice: chemotherapy or comfort measures.

She chose chemo, reasoning that she still travels, works as a national vice president of the American Federation of Government Employees and “enjoys life to the fullest.” But she adds that “everybody is different,” and the option of forgoing curative treatment is just as valid.

Millions of families in our aging nation face the same delicate decision about when to use life-extending but potentially-grueling treatment on the elderly and sick — and the medical world is responding. This year for the first time, Medicare began reimbursing doctors for having end-of-life discussions as a separate, billable service. And health experts are increasingly examining the issue, with three recent end-of-life studies in the Journal of the American Medical Association among the growing body of research.

“The culture has long had a belief that (doctors) can get everybody better no matter how sick, old or infected. But that turns out not to be true,” says Arthur Caplan, head of the division of bioethics at New York University Langone Medical Center. “Some people think giving up on treatment is tantamount to suicide,” he said, but in many cases it can be the right choice.

Experts say the U.S. medical establishment tends to overuse extraordinary technology because it’s there and because of a queasy attitude about death. While it makes sense for an active 91-year-old like former President Jimmy Carter to undergo extensive treatment for melanoma, they say, such measures make less sense for a bedridden patient with dementia. It often comes down to quality of life.

“The decision is frequently not, ‘Can we do something?" says Steven Etoch, a cardiothoracic surgeon at Norton Healthcare in Louisville. "It's, 'Should we do something?'"

For Vicki Rose, 71, the answer was no. Rose, a retired senior center director from Georgetown, Ky., has endometrial cancer that has spread throughout her body, but decided against chemotherapy and has been getting care from Hospice of the Bluegrass for about a week. "I prefer to choose dignity on my way out," she says.

Whichever path patients choose — cure or not — many doctors say they need to have more and earlier access to palliative care, which aims to ease symptoms and treatment side effects as well as related social, psychological and spiritual problems.

Forgoing treatment "is a very personal choice,” Rose says. “For me, I believe in heaven, and I know that’s where I’m going.”

High-stakes decision

While the choice is personal, there's a public cost.

Roughly 12% of U.S. health care spending overall is for care in the last year of life. And federal officials say about 15% of Medicare reimbursements are for spending during a patient’s last six months, at an average of about $30,000 a person.

Much of that goes to hospitals. Compared with other developed nations, U.S. per-person hospital spending on seniors 65 and older in their last 180 days was high — averaging $18,500 — even though a relatively low percentage of Americans die in hospitals, according to one of the recent JAMA articles. That’s partly because 27% of American seniors are admitted to intensive care in the last 30 days of life, twice the rate of other countries.

“We’re just very expensive,” says lead author Ezekiel Emanuel, a bioethicist and oncologist widely considered an architect of Obamacare. “We’re still using too much high-tech medicine.”

Emanuel says insurers don’t drive such decisions; they generally pay for what doctors recommend. Not only is Medicare prevented by law from interfering with the practice of medicine, experts say letting insurers have more influence is too politically fraught, evoking the controversial idea of “death panels.” So it’s up to doctors and patients to improve end-of-life care by talking about it earlier in the disease process than they do now, experts say.

At this point, Caplan says, most Americans haven’t created or updated advance directives to relay their wishes, and many don’t bring up the possibility of death with doctors because they don’t want to think about it. Meanwhile, he says, hospitals reinforce this attitude with advertisements such as “miracles start here.”

Even in Carter’s case, in which treatment put his cancer into remission, “it still doesn’t mean he will live forever,” Caplan says. “As a patient, I need to understand when my quality of life is poor enough that I don’t want anything else done.”

Quality of life

John Bischof, 88, had to face that reality. The Jeffersonville, Ind., man had congestive heart failure and was making frequent trips to the ER when he decided to live out his life in the assisted living facility that had become his home.

Bischof became a patient of the local hospice organization Hosparus, and stopped receiving diagnostic tests, intravenous diuretics and antibiotics. For four months before his death in 2013, he received visits from nurses, certified nursing assistants and others, and treatment to keep him comfortable.

Daughter Terri Graham, chief clinical officer for Hosparus, says the World War II Navy veteran, who used to play saxophone in a big band and love celebrations, was able to attend a luau just before he died. Although confined to a wheelchair and tethered to oxygen, she says, “he was able to enjoy life to the very end.”

Hosparus Medical Director Bethany Snider says today's physicians and medical students are gradually learning more about hospice and palliative care, and the new Medicare reimbursement rule creates another incentive to take the time necessary for end-of-life discussions.

She and other doctors say those discussions don’t usually center around age, but instead on overall health, life experience and hopes for the future.

Thomas, of Louisville, says she knew shortly after her December 2014 diagnosis that she wanted life-preserving treatment even though doctors told her she would need chemo for the rest of her life. Now 83, she can’t imagine slowing down any time soon. She recently took a business trip a couple days after a chemo session.

Martha “Lillian” Recktenwald, 82, also made the decision to seek curative treatment. When heart disease threatened her life, she chose to undergo a transcatheter aortic valve replacement, which involves repairing the valve by putting a new one within the old one.

“I prayed a lot about it, whether to go through it,” she says, adding that she's now able to get around better and looks forward to watching her grandchildren graduate from college. “I feel comfortable with my decision...very lucky and blessed.”