US cancer patients face varying care
- From: ** <**@.org>
- Date: Tue, 31 Jul 2007 13:38:40 +0800
US cancer patients face varying care
Denise Grady
NEW YORK
31-Jul-07
THE first doctor gave her six months to live. The second and third said
chemotherapy would buy more time, but surgery would not. A fourth offered to
operate.
Karen Pasqualetto had just given birth to her first child last July when doctors
discovered she had colon cancer. She was only 35, and the disease had already
spread to her liver. The months she had hoped to spend getting to know her new
daughter were hijacked by illness, fear and a desperate quest to survive. For
the past year, she and her relatives have felt lost, fending for themselves in a
daunting medical landscape in which they struggle to make sense of conflicting
advice as they race against time in hopes of saving her life.
"It's patchwork, and frustrating that there's not one person taking care of me
who I can look to as my champion," Pasqualetto said recently in a telephone
interview from her home near Seattle. "I don't feel I have a doctor who is
looking out for my care. My oncologist is terrific, but he's an oncologist. The
surgeon seems terrific, but I found him through my own diligence. I have no
confidence in the system."
It was a sudden immersion in the scalding realities of life with cancer. This
year, there will be more than 1.4 million new cases of cancer in the United
States, and 559,650 deaths. Only heart disease kills more people.
Cancer, more than almost any other disease, can be overwhelmingly complicated to
treat. Patients are often stunned to learn that they will need not just one
doctor, but at least three: a surgeon and specialists in radiation and
chemotherapy. Diagnosis and treatment require a seemingly endless stream of
appointments. Doctors do not always agree, and patients may find that at the
worst time in their lives, when they are ill, frightened and most vulnerable,
they also have to seek second opinions on biopsies and therapy, fight with
insurers and sort out complex treatment options.
The decisions can be agonising, in part because the quality of cancer care
varies among doctors and hospitals, and it is difficult for even the most
educated patients to be sure they are receiving the best treatment. "Let the
buyer beware" is harsh advice to give a cancer patient, but it often applies.
Excellent care is out there, but people are often on their own to find it.
Patients are told they must be their own advocates, but few know where to begin.
"Here it is, a country with so many different breakthroughs in treatment, but
even though we know things that work, not everybody who could benefit gets
them," said Dr Nina Bickell, an associate professor of health policy and
medicine at the Mount Sinai medical school in Manhattan.
Death rates from cancer have been dropping for about 15 years in the United
States, but experts say far too many patients receive inferior care. Mistakes in
care can be fatal with this disease, and yet some people do not receive enough
treatment, while others receive too much or the wrong kind.
"It's quite surprising, but the quality of cancer care in America varies
dramatically," said Dr Stephen Edge, the chairman of surgery at the Roswell Park
Cancer Institute in Buffalo. "It's scary how much variation there is."
In March, cancer organisations tried to address the problem by issuing the first
set of quality measures that can be used to judge whether hospitals are giving
patients up-to-date care for breast and colon tumours, two of the most common
cancers.
The list of measures calls for treatments that seem so basic even to a layperson
that it is shocking to think any hospital would skip them. For instance, it says
that women under 70 who have lumpectomies for breast cancer should also have
radiation, and that doctors should consider chemotherapy for people with colon
cancer that has spread to their lymph nodes.
Dr Edge, who worked on the measures, said, "While they're fairly simple and
straightforward, and they seem very basic, it's quite surprising how many people
do not get the care that's recommended".
Treatment guidelines approved by experts already exist for 70 to 80 types of
cancer (http://www.nccn.org/), but the new measures are the first to be formally
endorsed by cancer organisations to assess whether hospitals are performing up
to par. The measures were developed by the American College of Surgeons'
Commission on Cancer, the American Society of Clinical Oncology and the National
Comprehensive Cancer Network, and are available online at
www.facs.org/cancer/qualitymeasures.html.
It took more than two years, Dr Edge said, before experts even agreed on these
basic principles. The first goal is to give doctors and hospitals a chance to
see how they stack up to national standards.
Karen Pasqualetto is exceptional not only for her determination and confidence
in dealing with problems that would intimidate many other people, but also for
her financial wherewithal.
So far her treatment has cost more than US$400,000, almost all of it covered by
health insurance from Starbucks, where her husband works in disaster-response
planning.
When she joined a cancer support group, she recalled, it saddened her to hear
other patients with advanced disease take the word of a single oncologist,
because she believes that if she had done that, she would already be dead. She
has come to think that survival may depend on money and access, and, she said,
on "your own drive and motivation".
New York Times
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