MSNBC Article "Most cancer doctors avoid saying it's the end"

[RNWithAHeart]

This article was posted as the lead story on MSNBC.com today:

Most cancer doctors avoid saying it's the end

http://www.msnbc.msn.com/id/25176326/

One look at Eileen Mulligan lying soberly on the exam table and Dr. John Marshall knew the time for the Big Talk had arrived.

He began gently. The chemotherapy is not helping. The cancer is advanced. There are no good options left to try. It would be good to look into hospice care.

"At first I was really shocked. But after, I thought it was a really good way of handling a situation like that," said Mulligan, who now is making a "bucket list"-things to do before she dies. Top priority: getting her busy sons to come for a weekend at her Washington, D.C.,

Many people do not get such straight talk from doctors, who often think they are doing patients a favor by keeping hope alive.

New research shows they are wrong.

Only one-third of terminally ill cancer patients in a new, federally funded study said their doctors had discussed end-of-life care.

Surprisingly, patients who had these talks were no more likely to become depressed than those who did not, the study found. They were less likely to spend their final days in hospitals, tethered to machines. They avoided costly, futile care. And their loved ones were more at peace after they died.

Law requires straight talk

Convinced of such benefits and that patients have a right to know, the California Assembly just passed a bill to require that health care providers give complete answers to dying patients who ask about their options. The bill now goes to the state Senate.

Some doctors' groups are fighting the bill, saying it interferes with medical practice. But at an American Society of Clinical Oncology conference in Chicago earlier this month, where the federally funded study was presented, the society's president said she was upset at its finding that most doctors were not having honest talks.

"That is distressing if it's true. It says we have a lot of homework to do," said Dr. Nancy Davidson, a cancer specialist at Johns Hopkins University in Baltimore.

Doctors mistakenly fear that frank conversations will harm patients, said Barbara Coombs Lee, president of the advocacy group Compassionate Choices.

"Boiled down, it's 'Talking about dying will kill you,'" she said. In reality, "people crave these conversations, because without a full and candid discussion of what they're up against and what their options are, they feel abandoned and forlorn, as though they have to face this alone. No one is willing to talk about it."

The new study is the first to look at what happens to patients if they are or are not asked what kind of care they'd like to receive if they were dying, said lead researcher Dr. Alexi Wright of the Dana-Farber Cancer Institute in Boston.

It involved 603 people in Massachusetts, New Hampshire, Connecticut and Texas. All had failed chemotherapy for advanced cancer and had life expectancies of less than a year. They were interviewed at the start of the study and are being followed until their deaths. Records were used to document their care.

Of the 323 who have died so far, those who had end-of-life talks were three times less likely to spend their final week in intensive care, four times less likely to be on breathing machines, and six times less likely to be resuscitated.

About 7 percent of all patients in the study developed depression. Feeling nervous or worried was no more common among those who had end-of-life talks than those who did not.

That rings true, said Marshall, who is Mulligan's doctor at Georgetown University's Lombardi Comprehensive Cancer Center. Patients often are relieved, and can plan for a "good death" and make decisions, such as do-not-resuscitate orders.

"It's sad, and it's not good news, but you can see the tension begin to fall" as soon as the patient and the family come to grips with a situation they may have suspected but were afraid to bring up, he said.

From an ethics point of view, "it's easy-patients ought to know," said Dr. Anthony Lee Back of the Fred Hutchinson Cancer Center in Seattle. "Talking about prognosis is where the rubber meets the road. It's a make-or-break moment-you earn that trust or you blow it," he told doctors at a training session at the cancer conference on how to break bad news.

People react differently, though, said Dr. James Vredenburgh, a brain tumor specialist at Duke University.

"There are patients who want to talk about death and dying when I first meet them, before I ever treat them. There's other people who never will talk about it," he said.

"Most patients know in their heart" that the situation is grim, "but people have an amazing capacity to deny or just keep fighting. For a majority of patients it's a relief to know and to just be able to talk about it," he said.

[BlueRidgeHomeRN]

it's pathetic that there needs to be a law forcing md's to do their job. i sometimes think the doc's who avoid this either need to grow a pair, or are so convinced of their own power that they consider it a personal insult that the cancer is gonna "win".

:angryfire

old hospice joke:

q. why do they nail coffins shut?

a. so the oncologist can't get in that "last round" of chemo.

[llg, PhD, RN]

My immediate reaction to seeing that article over the weekend was, "That's basic Nursing 101 stuff that I learned back in nursing school in the 1970's." It's such a shame that physicians tend to be so incompetent in this area.

I know it's true though. While my Mom was dying from pulmonary fibrosis a couple of years ago, she and I (and most of our family) could see that she was fading fast. But her docs seemed to be in some sort of denial. Every treatment, every step of the way came 2 or 3 weeks AFTER she should have gotten it. She finally met with the hospice folks 1 day before she went into the hospital for the last time -- 1 week before she died. She could have gotten so much help that she was entitled to (and could have benefitted from), but they just wouldn't acknowledge that it was time.

That's my one big regret about her death. I lived several hours away and was only seeing her every few weeks. Each vist, I would see that she had declined and needed more support -- support that would finally come a week or two after I left (having stomped my foot and insisted on it.) I would come back a few weeks later and find that she had moved on to the next stage and needed more -- and have to insist again. etc. etc. etc. So sad ...

... and sad for our country.

[leslie :-D]

working in inpt hospice, i can't tell you how many chemo pts i get, who are soooo sickly that when we finally get them in a good place, they die.

and hospice is not about addressing just the physical presentation.

it irks me to no end, to care for these pts who have been robbed of precious time in preparing for a good death.

i talk about a 'good death' a lot...

and all it entails.

mostly time.

by doctors either fearfully or arrogantly persisting w/futile txs, it denies the pt of a whole, other beginning in transitioning from here to there.

sound silly?

it's not.

i have experienced this phenomena for sev'l yrs.

and much happens in a matter of only a few months...

something too many pts have never experienced, all in hopes of buying extra time, however miserably.

let me work with a confident, knowledgeable onc or hospice/palliative care doc anytime.

they understand 'the' and 'their' realities.

leslie

[marachne]

Having spent the last year on a palliative care team, I both have more frustration and better understanding... The oncologist note that said -- no more tx available, but in the next breath says that if they regain X amount of function we can revisit options. Wha??? Let them be!

The heart clinic that didn't want to be involved in a study that involved "end-stage heart failure patients" because "we don't use that term." (Which can also be a reason that some studies describe their participants as "seriously ill," b/c we "can't use that terminal language.")

OTOH, as I said, I worked palliative care, when we (unfortunately) are often the first person who has been able to have a meaningful conversation about what would it take for a person to say "enough." And people have no clue what that would look like. They say they're a "fighter" and "as long as there's any possibility I'd want it."

Or their children, such as the person recently who wanted the meeting with the doctors to be before her brother arrived b/c "he'd have had him buried 3 years ago." This man had failed 2 kinds of chemo, had TTP renal failure, swallowing problems (looks like he has maybe weeks), and the daughter's asking about experimental tx from Mexico!

Finally, we just had our annual all-state Palliative Care Conference and the plenary speaker was Susan Block. As part of an in-depth study of medical students, residents, faculty experiences with patient deaths in two east coast medical schools, one finding was that most medical students do not see dying patients (either because it's too complicated or b/c "nothing is happening, they're dying), so they're not learning about dying patients in practice (and they interns and residents aren't supported in their learning either. The other thing that was particularly interesting was their talking about the “Hidden curriculum” in oncology training. In a national survey:

• 2/3 taught by attendings that working with dying is not rewarding
  
• 25% taught to remain emotionally uninvolved with patients
  
• 40% taught that it is not acceptable to express feelings about death of a patient

Isn't any wonder that oncologists don't know how to talk to patients or stop futile tx?

[leslie :-D]

Finally, we just had our annual all-state Palliative Care Conference and the plenary speaker was Susan Block. As part of an in-depth study of medical students, residents, faculty experiences with patient deaths in two east coast medical schools, one finding was that most medical students do not see dying patients (either because it's too complicated or b/c "nothing is happening, they're dying), so they're not learning about dying patients in practice (and they interns and residents aren't supported in their learning either. The other thing that was particularly interesting was their talking about the "Hidden curriculum" in oncology training. In a national survey:

• 2/3 taught by attendings that working with dying is not rewarding
  
• 25% taught to remain emotionally uninvolved with patients
  
• 40% taught that it is not acceptable to express feelings about death of a patient

Isn't any wonder that oncologists don't know how to talk to patients or stop futile tx?

very telling, isn't it?

death has always been the great taboo in our society.

we do everything humanly possible to deny, downplay and/or delay its inevitability...

which obviously, has carried over into the curriculum at med schools.

the irony is, while everyone continues in acting hastily and frantically, it is denying these pts of the very services that are due to them.

shameful, and yes, very frustrating.

leslie