End-of-Life Choice, Palliative Care and Counseling

End-of-life conversations needed, survey findsby Jay

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By Michael Bamesberger
Lincoln Journal Star
July 27, 2012

It’s one of the most important conversations terminally ill patients can have with their doctors.

In the final months of life, should they pursue aggressive treatments or opt for noncurative hospice care?

According to a new study, it’s a conversation doctors aren’t having as often as Nebraskans would like.

The results of the 2011 Nebraska End-of-Life Survey, conducted by the Nebraska Hospice and Palliative Care Association, found that 70 percent of Nebraskans said they want their doctors to discuss their end-of-life care options, yet only 21 percent of Nebraskans had heard about hospice care from a doctor.

The survey, compiled from a random sample of 1,029 residents, paints a picture of patients’ views on medical intervention, end-of-life financial concerns and knowledge of end-of-life treatment options.

The results confirm what Lincoln physician Lisa Mansur has observed for years: As medical care has improved and specialized, a patient may be seen by many types of doctors — hospitalists, primary care physicians, specialists — many of whom focus on a small part of the patient’s health instead of looking at the big picture.

“They provide outstanding care, but they may not feel they are the best person to have that conversation,” Mansur said. “They take care of their tree, not the entire forest.”

So many terminally ill patients, at their doctors’ suggestions, choose aggressive and expensive treatments to try to prolong life for as long as possible — sometimes with little payoff, Mansur said.

“We spend a lot on our care, but our outcomes are declining,” she said. “For example, 25 percent of our (nation’s) Medicare budget is spent in the last week of a person’s life.”

For some patients, less expensive hospice care actually may provide better outcomes and help them live longer, she said.

“It’s not extraordinary — just days or weeks — but more importantly, they live more comfortably,” she said.

Mansur understands the issue well: Before serving as director of palliative care at BryanLGH, she worked for two decades in internal, critical care and pulmonary medicine.

Hospice care, she said, involves a team of medical professionals, social workers, counselors, bereavement staff and clergy, if the patient desires. The team works together to provide physical, psychological and spiritual care — not cures — for patients expected to live six months or fewer.

The number of Americans turning to hospice care has climbed from 25,000 in 1982, when the option was new, to 1.58 million in 2010.

But patients can only choose hospice care if they know how long they have to live and what their options are.

In 2010, New York passed a law requiring physicians who treat the terminally ill to inform patients or their families about end-of-life care options, including aggressive pain management, hospice care or further treatment, at the risk of a several-thousand-dollar fine.

That law addresses the problem, Mansur said, but it’s not the answer.

“We don’t need laws,” she said. “That’s our job as physicians.”

Instead, doctors of all specialties need to practice what she calls “informed consent” — laying out the risks, benefits and expected outcomes of all the patients’ treatment options.

A 2008 study found that patients who had end-of-life discussions with their physicians were more likely to accept that their illness was terminal and preferred medical treatment focused on relieving pain and discomfort over life-extending therapies.

“You ask the physicians, family members and patient if they would be surprised if the patient was gone in six months,” she said. “If they say no, it’s time to have that conversation.”

That conversation will help clear up many of the uncertainties highlighted in the survey. For example, Medicare pays 100 percent of hospice costs — a fact 67 percent of Nebraskans said they didn’t know.

In Lancaster County, a day of routine care — one of four levels of hospice care — costs an average of $150.

Jennifer Eurek, associate director at the Nebraska Hospice and Palliative Care Association, said patients and family members shouldn’t be afraid to start the conversation.

“It’s a two-way street,” she said. “There’s always going to be new medications, new technologies to try, but it’s important that everyone involved look at both quality and quantity of life going forward.”