Compassion & Choices » survey

End-of-life conversations needed, survey finds

Jay — Fri, 27 Jul 2012 22:06:34 +0000

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.”

Hawaii Doctors Form Aid In Dying Advisory Council

Blaine — Tue, 03 Apr 2012 17:25:25 +0000

Honolulu Civil Beat

By Chad Blair 04/03/2012

In his 35 years as an oncologist, Dr. Charles Miller has seen a lot of patients with breast, prostate, colon, lung or ovarian cancer.

For those at the end of their lives, most are either in lots of pain or experiencing a poor quality of life.

“They say to you, ‘Doc, I want to get this over with. I just want to finish this,’” said Miller. “And it is a decision between the patient and the physician.”

Dr. Charles Miller

Typically, a patient will be in a hospice and a nurse will call the doctor to get permission to increase a morphine dose so that the patient will not wake up.

“But that does not give the patient control or choice,” said Miller. “I know that there were patients who wanted to have more control — who wanted to say, ‘Doctor, I want to do this.’”

The problem has been uncertainty among many doctors about how to provide that control, and whether there is a legal risk.

To help doctors, Miller has helped form a new group called the Physician Advisory Council for Aid in Dying, or PACAID. The four-member council will help doctors “empower” their terminally ill patients, including prescribing lethal barbiturates.

PACAID is likely to have an impact locally on the socio-political debate over aid in dying.

So-called Death With Dignity legislation has met with strong opposition from churches, some social-service agencies and end-of-life care providers at the Hawaii Legislature, and lawmakers have repeatedly heeded their concerns.

But PACAID’s establishment also comes in the wake of a January survey by QMark Research of Hawaii that found 76 percent of doctors agree that “people in the final stages of a terminal disease should have the right and the choice to bring about their peaceful death.”

Equally important, say supporters of the aid-in-dying movement, is a growing belief that the courts and state and federal governments do not have to be involved.

Groups like Compassion & Choices, which has a local chapter, argue that there are already laws on the books that favor autonomy when it comes to end-of-life decisions.

“The bottom line, in overhwhelming numbers, people are saying this is not the government’s business, that this is between a patient and their doctors,” said Dr. Robert Nathanson, another member of PACAID. “So, if that’s the case, doctors need to have some kind of guideline. And we felt that PACAID was needed.”

Rigorous Process

PACAID is described as first-of-its-kind in the nation, and physicians in Montana are in the process of starting a similar council.

Beside Miller and Nathanson, PACAID’s other founding member was Dr. Max Botticelli, who passed away last month.

Two other Hawaii MDs — Clifton S. Otto and John Samuel Spangler — are also council members. PACAID will also lead and support a larger a network of supportive physicians.

While PACAID doctors could prescribe life-ending medication, that is a decision that must go through a rigorous process. PACAID members have adopted best-practice guidelines from states like Oregon and Washington where aid-in-dying laws exist. An Aid-in-Dying Practice in Hawaii—Physician Guide and pro-bono legal counsel will also be provided.

“We see the council as an advisory and consultative source, and one of the guidelines is that we would never write any prescription without collaboration and getting all that medical information,” said Miller. “We would be willing to write a prescription, but ideally it would be best if the primary doctor writes it.”

Miller added, “We do understand there are physicians who are not comfortable with this for what ever reason. So we see us as helping the patient, to give support to them for their choice for end-of-life care.”

Compassion & Choices Hawaii — a 501(c)(3) — will provide staffing to support administrative needs of PACAID physicians, who are volunteers and do not receive compensation.

How PACAID and its mission will be received is unclear.

While PACAID and Compassion & Choices believe Hawaii law allows doctors to advise patients on ending their lives, Hawaii Attorney General David Louie issued an opinion in December stating that one of those laws — a 1909 statute regarding Hansen’s disease patients — does not make doctor-assisted suicide legal.

The opinion came at the request of state Sen. Josh Green, an MD, who has held hearings on Death With Diginity.

One critic of Death With Dignity, Allen Cardines Jr., executive director of the Hawaii Family Forum, was alarmed to hear of PACAID’s formation.

“This is the first I’ve heard of it, but, top of mind, I would be very concerned about a bunch of doctors going around providing aid in dying,” he said. “I think doctors should provide aid in living, not aid in dying.”

Not Expecting Flood of Applicants

QMark Research of Hawaii conducted phone and fax interviews from Jan. 5-23 by sampling from MD listings in each county.

The specialities were cardiovascular disease, family and general practice, geriatrics, immunology, infectious disease, internal medicine, nephrology, oncology, hematology and pulmonology.

The sample size was small — just 43 doctors completed the interviews, yielding a margin of error of plus 15 percentage points. But three out of four agreed that people in the final stages of a terminal disease “should have the right to bring about their peaceful death and the decision to receive medication to help is a personal decision between patient and doctor.”

And nearly nine in 10 doctors agreed end-of-life decisions “should be an individual decision and the medical community, rather than government, should establish practice guidelines to prevent abuse.”

Just 57 percent of doctors, however, favored allowing their terminally ill patients the choice to request and receive medication from their doctor “to bring about a peaceful death.”

PACAID’s Miller and Nathanson say they are not worried about legal repercussions.

They also do not expect to be flooded with requests for lethal doses. They base that on the experience of Oregon, which, in the 14 years since it passed a Death With Dignity law, saw only 525 patients actually use the medication.

“All the concerns are way overblown,” said Miller.

“There may be a few requests, but I am willing to bet that a majority of them won’t quite understand what the regulations are,” said Nathanson, who adds that he has turned down requests from friends. “The only reason they wanted the pills is because they are elderly, but they are perfectly healthy. I told them, ‘You don’t qualify and I hope you never do.’”

Nathanson, who rejects the argument that prescribing lethal medication is enabling suicide — “Terminal people don’t have a choice, they are going to die from disease” — said the drugs may actually produce an unexpected outcome.

“One of the paradoxes is that when a patient gets the medicine, they frequently will live longer than expected,” he said. “The hospice nurse will tell the family that their mother who wasn’t eating hardly at all or watching TV or reading or interacting is now eating like a horse and now doing those things. It’s because the person no longer has that toxic anxiety. They know that they are empowered if things become intolerable. And the definition of that is whatever the patient says is intolerable.”

Read the story at its original location: Honolulu Civil Beat