Do We Need to Ration End-of-Life Care?

In the days and weeks before they die, fifteen to twenty percent of terminally ill cancer patients receive “palliative chemotherapy.” Their doctors do not expect chemo to cure them. Why then, do they receive it?

In “The Role of Chemotherapy at the End of Life: When Is Enough, Enough?", Drs. Sarah Elizabeth Harrington and Thomas J. Smith explain: “Chemotherapy for metastatic solid tumors such as lung, breast, colon, or prostate cancer rarely if ever cures patients. The indication for such chemotherapy is to improve disease-free or overall survival, relieve symptoms, and improve quality of life.”

In the article, which appeared in the most recent issue of JAMA, Harrington and Smith tell the story of Mr.L., a 56-year old businessman who is determined to fight the lung cancer that has spread to his spine and brain. Even when his oncologist recommends that it is time for Mr. L. to shift over to hospice care, Mr. L. refuses.   

“You know my husband was extremely determined to remain positive, and he never was going to give in [to the fact] that this could eventually kill him,” his wife reports proudly. “It didn't really dawn on my husband that he was going to die until he was in the hospital with pneumonia, which was two weeks before he passed away.”

Near the very end of Mr. L’s life, the hospital staff called in a palliative care specialist to help Mr. L. face the fact that he was dying and to consider his options.

Chemotherapy had helped him during the first eight months after he was diagnosed, but during the last six months of his life, as his condition deteriorated, the medical staff felt that because the cancer had spread to his brain, “he was not making informed choices and had lost opportunities to do other  important things with his remaining time while pursuing further  chemotherapies and clinical trials.”

The palliative care specialist believed that he should have been called in sooner. Arguably, Mr. L. needed an oncologist like Dr. Peter Eisenberg, who I quote in part 1 of this post: “Most oncologists don’t talk about the important stuff. They just say, ‘In six to eight months, if this doesn’t work, we’ll try Plan B…”

By contrast, Eisenberg levels with his patients: “I ask them: ‘How do you want to spend the rest of your foreshortened life? Do you want to spend it hanging out with me and my staff [going through another round of chemo]—or do you have something else that you want to do?’”

Because Mr. L. insisted, he received another round of chemo just six days before he died. At the end of part 1, I ask: “Since Mr. L.’s oncologist was quite certain that his patient was close to death—and would derive no benefit from the treatment—should he have refused to continue the chemotherapy?”

I think there is an alternative to “rationing” end-of-life care by saying “No” to the patient. I doubt it would have been necessary to tell Mr. L. “You can’t have more chemo” if the oncologist had found a way to make it clear to Mr., L. that he was in fact dying, and that another round of chemo would do no good.  If the oncologist had called in a palliative care specialist much sooner, that might well have helped.

Once the two doctors spelled out the prognosis, Mr. L. and Mrs. L. accepted it quite quickly.  “When I went in on Saturday morning, it was a totally changed picture,” the palliative care specialist recalls. “The patient and his wife were now demanding to go home on hospice. “

Mr. L’s oncologist suggests that Mr. L. should have realized that he was dying when he heard “that he couldn't get into a clinical trial because physically he wasn't up to the standards of the trial. That, I thought, would have allowed Mr. L to accept hospice care sooner than he did.”

But as Mrs. L. makes clear, Mr. L. was in denial. Her grown children also were shocked when the palliative care specialist told them that their father might die in a matter of days or weeks. As for Mrs. L herself: “You always hope that he can come out of this by some miracle.”  Until the palliative care specialist arrived on the scene, it seems that no one had been completely candid with Mr. L.’s family.

Honesty

In “The Role of Chemotherapy at the End of Life: When Is Enough, Enough?" Smith and Harrington acknowledge that many doctors don’t want to say –and many patients don’t want to hear—the “D” word: “The conundrum for today's oncologist is that moving on to third- or fourth-line chemotherapy may be easier than discussing hospice care; the patient and family may be less upset, and they may prefer to not discuss the issue with the oncologist.”  It’s worth noting that even Smith and Harrington refer to “death” as “the issue.”

It’s simply easier to continue palliative chemo. “Adverse effects of chemotherapy may be minimal, discussions take more time, and chemotherapy intervention is better compensated than are discussions,” Smith and Harrington observe.  “However, without a clear goals-of-care discussion, patients like Mr. L and their families may be unprepared for what the final few months, weeks, or even days may bring.”

Nevertheless, as Smith and Harrington conclude: it is only “Through honest and respectful communication about the last stages of cancer that physicians can give patients a genuine choice about how to spend their last phase of life.” [my emphasis].

Perhaps Mr. L. would have liked to spend a month at home with his family, receiving hospice care to control his pain while listening to his favorite music. Maybe even two months. It is not at all clear that the treatments he received during those final months either bought him more time  or improved the quality of his life.

“In our experience, many families and patients who choose, like Mr. L, to enroll in hospice wish they had done so sooner,” Smith and Harrington write. “The median length of stay on hospice has declined from 29 days in 1995 to 26 days in 2005, with one-third enrolling in the last week of life and 10 percent on the last day of life (http://www.nphco.org.)...In the most recent and largest study, among those with hospice stays of less than 30 days, 16% percent of families said they were referred too late.” And “the perception of being referred too late…was associated with more unmet needs, lower satisfaction, and more concerns. One study found that patients would have liked palliative care consultation earlier in their course of treatment.”

But cancer patients often “find it hard to get or accept truthful information about the benefits and harms of palliative chemotherapy,” Smith and Harrington observe. “In the largest study of 95 consecutive patients receiving palliative chemotherapy, prognosis was discussed by only 39% of medical oncologists.”

In another survey of patients suffering from small cell lung cancer, “Thirty-five patients reported learning more about their prognosis from other patients in the waiting room than from their health care professionals. [my emphasis].  Physicians did not always want to pronounce a ‘death sentence,’ and patients did not always want to hear it.”

Yet another study revealed that “if terminally ill patients requested survival estimates, physicians said that they provided them only 37% of the time. Physicians reported that they would provide no estimate, conscious overestimates, or conscious underestimates 63% of the time.”

And even when oncologists are candid about the limits of palliative chemotherapy, “at least one third of patients and families reported they did not believe the information given them that  treatment was not curative despite receiving such information. Another study showed that physicians may ‘collude’ in this hopefulness by giving such a wide range of outcomes that people choose the most favorable.” [my emphasis]

Here Smith and Harrington stress: “It is critical to understand that people looking death in the eye have a different perspective.”

You or I might think that we would never agree to a risky, potentially painful treatment that offered only a tiny hope of providing “some” benefit. But you and I have not been told that we have cancer.

The instinct to survive is stronger than we realize. This is why so many patients will grasp at straws. Indeed, Smith and Harrington report: “Highly educated and motivated patients enrolled in phase 1 studies at the National Cancer Institute said that they would be willing to take an experimental drug—with a 10% mortality rate—for an unknown, small chance of benefit. “

Honesty and Hope

There is much to be said for honesty in the doctor-patient relationship. But does a physician really have the right to dash a patient’s last hopes? Harrington and Smith are firm: “No data are available that show hope can be taken from patients, as was once thought, or that patients are harmed by carefully provided information. As the Education Physicians End of Life Care for Oncologists (EPEC-O) curriculum states, ‘Information carefully shared is a gift to the patient and the family who want it and minimizes the risk that patients will distrust the cancer care team.’”

What Can Clinicians Do When the Patient Wants to Continue  Chemo?

“In the difficult situation faced by Mr L’s oncologist , when the oncologist thinks further chemotherapy is no longer indicated, a number of strategies may be tried,” Smith and Harrington advise. They suggest “holding family conferences to identify the decision makers in the family and getting the same information to all involved; informing people of and giving them access to the actual medical research studies and results; or writing the options down in concrete terms.

“Much of the time, patients and families may simply need more time to adjust to a difficult situation. Sometimes, they just have a different perspective that must be valued as much as the health care professional’s.” 

“In our opinion,” they add, “oncologists should note the availability of hospice from the beginning, as part of routine good care of the seriously ill patient. Unfortunately, families often receive little information from physicians about hospice. In one study, physicians initiated the discussion about hospice about half the time, while patients or families initiated one-third of the discussions. (A list of the resources that hospices can provide to patients can be found online [http://www.getpalliativecare.org].)”

The Economic Issues: Why Oncology is Different 

Both physicians and patients must face the cost of palliative chemotherapy. Too often, a few rounds of futile treatment can leave a family buried in debt. Palliative chemotherapy regimens cost up to $100 000 a year, and even insured patients may have to make a 20 percent co-payment.

Even if Medicare pays the whole amount, that only means that eventually, as the cost of palliative chemotherapy mounts, Medicare will have to boost co-pays and deductibles for everyone. Alternatively, Congress could hike FICA payroll taxes that help fund Medicare. But those taxes already place a great burden on the middle class. Meanwhile, according to Smith and Harrington: “Patients with cancer already account for about 40% of all Medicare drug costs, totaling an estimated $5.3 billion in 2006.” And each year, cancer drugs become more expensive.

“Some drugs (oxaliplatin for metastatic colon cancer and docetaxol for metastatic prostate cancer) have acceptable cost-effectiveness ratios in which treated patients gain several weeks or months of life, at a cost less than $100,000 per additional year of life saved.” Harrington and Smith write. “But for Medicare, these are [still] new costs to pay.

“For Mr. L,” Smith and Harrington note, “his last dose of intrathecal cytarabine given 6 days before his death would cost $3400 at our institution.”

These physician-researchers also question the degree to which financial incentives encourage overtreatment: “Over the past 10 years, oncologists have become some of the highest paid medical specialists…Oncologists are reimbursed more for administering chemotherapy than for engaging in lengthy discussions about prognosis and palliative care options,” they note. “This potential for conflict of interest has been the subject of controversy.”

How Far Are We Willing to Go in Rationing End–of- Life Care?                                          

Given finite resources, there are only a few ways to reduce the cost of cancer care.  Smith and Harrington list possible solutions:

• Reduce the services provided (e.g. institute "stopping rules," in which no more than 3 lines of chemotherapy would be given for refractory metastatic breast cancer or no erythropoietinlike drug treatment for anemia would be given unless the hemoglobin is <10 g/dL)
     
  
• Reduce requested services by increasing patient co-payments (Note: private insurers offering Medicare Advantage already are quietly doing this. If Medicare followed their example, we would be rationing end-of-life care based, not on how effective that care is likely to be, but on how much money the patient has.)
     
  
• Reduce the amount that Medicare or insurers pay for chemotherapy and supportive care drugs, health care professional services, or hospitalizations”  so that doctors are less likely to administer chemo and hospitals are more likely to send dying patients home.
     
  
• Prevent or delay new drugs from entering the market, or delay reimbursement for them. (Perhaps, before letting new drugs into the market, we need to better understand how to use the drugs we have in a way that most benefits the patient.)
   
• Reduce the payment to oncologists for administering chemotherapy and supportive care drugs, perhaps influencing the type of chemotherapy administered. (Ideally, we might use the money saved to pay oncologists and palliative care specialists more to counsel patients and families.)

At present, I doubt we are willing to take drastic steps to ration end-of-life care. But as a society we do need to face the realities of death and dying—not just the cost of futile treatment, but the unnecessary suffering that patients endure when both they and their doctors pretend that they can somehow “beat death.”

In the meantime, we should be taking a much closer look at new cancer drugs coming to market, insisting on unbiased research showing that they are truly more effective than the older products that they are trying to replace. And we should be questioning $100,000 price tags. Other developed countries negotiate discounts.  We may be the richest country in the world, but this is no reason to let drug-makers gouge dying patients—or the taxpayers who pay Medicare’s bills.

Finally, what is certain is that every large acute-care hospital in the U.S. should offer palliative care. As I explained in an earlier post palliative care doesn’t mean cutting off treatment. But it does mean that a palliative care team (usually a physician, a nurse and a psychologist) helps dying patients make informed choices about how they want to die.