According to a national survey of patients with cancer and their
families, 25% exhausted or nearly exhausted their savings in treating the
Even among families with health insurance, 33% of respondents to the
survey conducted by the Kaiser Family Foundation and the Harvard School of
Public Health said they struggled to pay medical bills. Among those who had
ever been uninsured, 27% delayed or skipped treatment because of financial
The NIH has estimated that Americans spent $89 billion on direct costs
for cancer care in 2007, with that expense expected to increase as the baby
boom generation ages.
The cost of cancer care is even higher in the last weeks of life.
Medicare spends one-third of the cost of treating cancer in the final year, and
78% of that spending occurs in the final month.
Lowell E. Schnipper, MD, is chair of
ASCOs Cost of Care Task Force. ASCO released a guideline on the cost of
cancer care in June.
Photo by Bruce Wahl, Beth Israel
Deaconess Medical Center
The experts interviewed for this story about the cost of cancer care at
the end of life were unanimous in saying the expense is untenable. In a
two-part series, HemOnc Today will explore why costs are so high
and the difficulties involved in bringing them down.
Part one looks at the difficulty of predicting death, the importance of
the end-of-life discussion and the need for comparative effectiveness research.
Part two, which will be published in our Oct. 10 issue, will look at the
possibility of rationing health care, including the state of Oregons
experience with drafting and implementing a health care plan that includes
Although there are some clues, especially functional status, physicians
do not really have a good idea about exactly when a patient is likely to die,
said Vivian E. von Gruenigen, MD, associate professor in the division of
gynecologic oncology at University Hospitals MacDonald Womens Hospital in
Cleveland. Von Gruenigen has studied terminally ill patients to determine the
optimal time to switch treatment from curative to palliative. She said that
more research dollars and attention should be focused on developing predictors
of the end of life.
As a physician caring for women with ovarian cancer, endometrial
cancer and cervical cancer, when it comes to the point in their journey when
theyre toward the end of life, they all die differently, she said.
There should be certain predictors that are developed through prospective
research that would help physicians qualify and quantify when their patients
are near the end of life.
Aggressive treatment at the end of life is expensive and it is becoming
more common. In results published in 2004, Earle et al found that in 1996, 5.7%
of patients in the study started a new chemotherapy regimen within 30 days of
death compared with 4.9% in 1993 (see chart).
From 1993 to 1996, they found that the average number of days from the
start of a new course of chemotherapy to death decreased (140.5 days vs. 127.7
days) and that the percentage of patients still getting chemotherapy in the
last two weeks of life increased (13.8% vs. 18.5%).
Joseph W. Shega, MD, assistant professor in the division of
hematology/oncology at Northwestern Universitys Feinburg School of
Medicine, said the number of things done to patients such as treatment
in the intensive care unit and the use of ventilators makes end-of-life
care more expensive.
As patients get sicker and we maintain our curative intent, we
tend to do more and more high-tech and expensive things, he said.
That drives most of the cost.
Aggressively attacking a patients disease near the end of life
usually does not work and often lowers the patients quality of life.
Results of a study published in Archives of Internal Medicine in
March showed that higher medical costs in the final week of life were
associated with more physical distress and worse overall quality of life.
Moreover, in the study, Zhang et al found no survival benefit associated with
the higher spending.
Results of a study published in 2008 by Alexi A. Wright, MD, and
colleagues showed that, even after correcting for severity of illness, patients
who did not receive aggressive care in their final weeks had a mean quality of
life score of 6.4 out of 10 compared with 4.6 for those who received at least
three aggressive therapies.
Holly G. Prigerson, PhD, director of the Center for
Psycho-oncology and Palliative Care Research at Dana-Farber Cancer Institute
and senior author on both studies, said that overly aggressive care at the end
of life amounts to little more than buying misery.
In the Wright paper, we found there was a dose response: The more
aggressive procedures received at the end of life, the worse your quality of
life, she told HemOnc Today. The longer youre in
hospice, the better your quality of life. End-of-life care costs appear to be
purchasing misery rather than buying better care.
The flip side of the argument is that, sometimes, aggressive treatment
Obviously, there are specific circumstances where even late in a
disease, a novel treatment might have a very unexpected, terrific result,
said Lowell E. Schnipper, MD, chief of hematology/oncology at Beth
Israel Deaconess Medical Center and chair of the ASCO Cost of Care Task Force.
That was the case with imatinib (Gleevec, Novartis). In very advanced
cases of sarcoma or leukemia, imatinib helped.
Douglas Yee, MD, director of the Masonic Cancer Center,
University of Minnesota and a member of the HemOnc Today Editorial
Board, discussed a patient with terminal breast cancer he treated recently. A
mother with three young children, she had undergone several rounds of
chemotherapy and presented at the hospital with increasing shortness of breath.
By any measure, she was a good candidate for hospice, Yee said.
The ICU team looked at me like I was nuts for continuing to give
chemotherapy after 10 regimens, he said.
But after going on a ventilator and getting treatment for lymphangitic
disease due to her breast cancer, she eventually left the hospital and lived
for another year.
Even though physically she wasnt asymptomatic that year,
that was a very meaningful year for her and her family, Yee said.
If we had made an economic decision a year ago that we had to stop
treating her and let her succumb to her disease . . . It really is an
impossible call to make for both the patient and the physician.
I would venture to say the last year or six months of her life
were pretty expensive, but if we try to make hard and fast rules of when you
can and cant do anything, its going to be very difficult to define
the value of life, Yee said.
Can we do the calculation like they do in the United Kingdom, when
you have to have X number of dollars for six months of life saved for a
particular drug? Thats a hard thing to communicate to patients; that a
regulatory agency doesnt think we can afford to take a chance at
extending your life.
Von Gruenigen argued that these kinds of stories highlight the need for
more research into finding ways to predict death more accurately. She noted
that the National Cancer Institute website has extensive information on
treating cancer, but says little about treating dying patients.
There is nothing. It stops at salvage, she said.
Theres all this research at diagnosis how to operate, what
type of chemotherapy to give, the different options for drugs at recurrence
but there is nothing on those schemas after that; there should be
information to guide physicians on when to stop therapy.
For most patients, research shows that end-of-life discussions both
improve quality of life and reduce costs. In the Zhang study, the researchers
found that costs were 35.7% lower (in 2008 dollars) for patients who had
end-of-life discussions compared with those who had not. Prigerson said the
cost savings could be even higher.
[That study is] a very conservative estimate of the difference in
cost savings that are likely to occur, she said. We didnt
include opportunity costs, such as the cost for a family member to miss work to
perform home care. We didnt factor in costs for visiting nurses,
equipment or drugs. This is just a very gross estimate of being on a
ventilator, being resuscitated, being in the ICU, going to hospice vs. being at
home without hospice, etc.
The problem is that most patients are not having these conversations:
Only 31.2% in the Zhang study. For the most part, said the experts who spoke to
HemOnc Today, oncologists are not trained to tell patients that
further treatment is likely to be futile, are not comfortable having that
conversation and have few incentives to do so.
Oncologists werent trained to have those end-of-life
discussions, Prigerson said. They didnt go into oncology to
tell people there is nothing more they can do to cure their cancer.
Schnipper agreed: There is some very, very fundamental lack in
generating these discussions on the part of physicians. Whether the primary
issue relates to physicians being trained into being active interventionists
and pushing the frontiers of disease back, were not sure what the problem
is, but clearly its a problem.
Its not that you abandon care; its that you switch
care from anticancer treatments to support treatments. By doing that, fewer
people with terminal cancer will be in ICU, fewer people will get inappropriate
treatments that are toxic and expensive. But we really have a challenge ahead
of us to make it happen, he said.
Hospice use, which saves money, does not happen as often or as early as
it should because physicians are not having these end-of-life discussions.
Hospice use in cancer patients has gone up substantially, but the
issue is that its only in the last three days of life that patients get
enrolled, Shega said. The referrals are so late that patients and
families cant benefit from hospice as they should. The conversation is
usually framed as What else can we do? and that may lead to
discussions about another line of chemotherapy or more chemotherapy, instead of
talking about what the goals should be based on how the patient feels.
The other problem, Yee said, is that neither physicians nor
administrators have a financial incentive to stop treating disease. The current
fee-for-service payment model pays for treatment, not what are likely to be
multiple long and complicated conversations.
If anything, physicians are encouraged to give more therapy
because with our fee-for-service reimbursement pattern, we have no disincentive
to stop chemotherapy, Yee said. In most hospital systems, revenues
from chemotherapy are a substantial part of the hospitals financial
well-being. If I were a hospital administrator, Id be even more in favor
of giving expensive therapy because, and this sounds very cynical, its
healthy for our hospital system. Its not healthy for our country, but
its healthy for our system.
What would save money, according to Yee, is better comparative
effectiveness research. The Obama administration has set aside $1.1 billion to
examine not only the clinical efficacy of a given treatment but also whether
one treatment is actually superior or more cost- effective than another.
As it stands now, physicians use drugs with no idea if they are working,
If I had to say what health care reform could be done to help us
we should encourage people to enroll in clinical trials to
answer some of these questions regarding predictive factors to identify benefit
from individual therapies, he said. The number of people that go
into clinical trials in the United States is vanishingly small.
ASCO released a guidance statement on the overall expense of treating
cancer in June. In it, ASCO encouraged oncologists to discuss the potential
cost of care with patients. Schnipper said that does not mean physicians should
necessarily discuss the price tag on each treatment, but they should strive to
educate patients about the financial realities of fighting cancer.
By ASCO making this suggestion that cost be included in
discussions between patients and doctors, were not suggesting that
oncologists speak about medical-social policy, Schnipper said. The
issue is that the rising cost of novel drugs places a huge burden on the
patient. In many instances, the fractional benefit over less expensive standard
treatment is so small that it is important that the patients have an
understanding of the potential difference between two treatments and the
potential impact those differences are likely to have on their familys
The committee also reached a conclusion similar to Yees, and said
the current health care system in the United States does not promote use
of the most cost-effective medical care.
Its fair to say that were operating in a nonintegrated
health care system in which the incentives are aligned with doing more in terms
of interventions and not necessarily providing impetus for the kind of
cognitive discussions that are the essence of being a good physician,
An end-of-life discussion, however, is the wrong time to bring up cost
for the first time, he said.
There is a substantial risk for misinterpreting the interests and
the goals of the care team. There is always the fear that somebody could
misinterpret a discussion, raising the issue as, Theyre trying to
save money rather than save Dad, he said.
What oncologists at that juncture need to do most is not so much
talk about cost directly but talk about whats right for the patient and
the family. Whats right for somebody whos likely beyond the
positive benefits of the treatment is to spare that patient the toxic effects
of treatment that just make the quality of ones life even worse, and care
for them in ways that help treat the things that are much more effectively
treatable like pain, infection or difficulty breathing, Schnipper said.
The most obvious way to lower costs is to ration care those who
can afford expensive treatment get it and those who cannot get something else.
It is also the least likely to be implemented in a wide-scale manner. Even if
comparative effectiveness research can show that an expensive course of
treatment does not help a particular population, the idea of denying health
care for financial reasons is anathema to most Americans, some experts contend.
Patients and doctors in the United States are so proud of trying
new and novel treatments offering hope, I have trouble envisioning a system
that would deny that, Prigerson said.
Yee added, Our country has decided, and rightly so, that
ones income level should not dictate the level of care one gets.
But the state of Oregon has implemented a plan to ration care to those
with Medicare coverage. The health care systems in Canada and the United
Kingdom, populations with admittedly different expectations about health care
and ideas about the role of government in society compared with the United
States, also ration care. In part two of this article, HemOnc
Today will look at how those systems work. by Jason Harris
Should oncologists discuss the cost of treatment with patients?
For more information:
- Earle CC. J Clin Oncol.
- Huskamp HA. Arch Intern Med. 2009;169:954-962.
- Keating NL. J Clin Oncol.
- Kim P. J Clin Oncol. 2007;doi:10.1200/JCO.2006.07.911.
- Matsuyama R. J Clin Oncol.
- Meropol NJ. J Clin Oncol.
- Naik AD. N Engl J Med. 2009:360:1929-1931.
- Wright AA. JAMA.
- Zhang B. Arch Intern Med. 2009;169:480-488.