I wrote this column 1 week before our Presidential Election. I have been surprised at the paucity of health care policy discussion since it represents such a large part of the national budget. The only policy I have heard is the Republican desire to kill Obamacare, and even little of that. Furthermore, discussions, when they have happened, have dealt with macroeconomics-the national cost and inefficiencies of medical care and proposed solutions, largely through changes in public policy.
But as a physician-oncologist, I believe in discussions about cancer care (including the unfortunately-named "Moonshot" effort, which has lofty goals but, as yet, no plan) to eradicate deaths and suffering from cancer. But, ultimately, I believe they must begin and end with patients and what is effective, efficient, and prudent for them. We think we know, but sometimes our medical biases and economic interests get in the way. So I culled through my files on medical policy and the doctor-patient interface; some are years old but not much has changed. (I first mentioned this article in 2007.)
Unbalanced Cancer Care
The contrast of health care, quality, and cost in other countries is helpful when trying to grasp the problems. An article in the Wall Street Journal by Peter Landers (Jan. 11, 2007) on the intersection of health care policy and the patient was the seed for this essay; it is very instructive. The article was inspired by a speech made by Takashi Yamamoto to a session of the Japanese parliament. He announced to his fellow members that he had cancer and then he proceeded to denounce the nation's standard of cancer care. He pointed out that cancer is the No. 1 cause of death in Japan and that one in two Japanese will contract cancer and one in three will die of the disease. The article points out that the death rate from cancer in Japan has continued to climb since 1995, while it has slowly but steadily declined in the U.S. In 2004, annual Japanese deaths per 100,000 from cancer far exceeded the number in this country.
Yamamoto continued: "However, the level of cancer care differs among regions and facilities. Even when there are treatments [available], people are being told they will never get better. These abandoned 'cancer refugees' are roaming the Japanese archipelago. The health and labor ministry has set up an office for cancer policy...yet unfortunately it doesn't even have a grasp of...what level of care is being offered across the country." (We also don't have a sound and useful grasp of the quality of cancer care in our country.)
Yamamoto then spoke against Japan's low-cost medical system (reimbursement rates are typically lower than in the U.S.). "If we cut reimbursement rates any more, we will accelerate the departure from the health care front line of medical professionals, who are already suffering from overwork out of a sense of mission. Take a look at the medical expenses on the receipt you receive at the hospital. The fees for expert services...how low they are. We need to have more flexibility in setting reimbursement rates, and we need to take a fresh look at expensive items such as foreign drugs and medical equipment. Some in the government are studying a further cut in reimbursements. This will lead to the destruction of health care. (Amen, Mr. Yamamoto.) We must recognize that health care and nursing care contribute to the regional economies and create jobs."
Japan's View
So what was the response to this speech? Masaharu Nakajima, MD, a surgeon who once treated cancer patients and until recently was head of the Health Bureau of the Ministry of Health, Labor and Welfare, says Japan already offers excellent care. Mr. Yakamoto, a cancer patient and high level politician disagrees. He said that with the large national debt and corporations worried about higher taxes, Japan can't afford to throw money into treatments and training that offer little hope of significantly extending lifespans.
"If we keep going like this, Japan is going to be crushed under medical expenses." (If Nakajima is a representative of oncologists in Japan, it is a sad day for the medical profession and its values.) Concerning the demand for more medical specialists, Nakajima responded, "America did too much of this and that's why their medical costs have grown." (Our successes in treating cancer have grown even more. I wonder if Nakajima would have the same attitude if he got a serious cancer.)
The article then provides a framework for this Japanese debate. Health care spending in Japan is roughly one-half what it is in the U.S. and even lower than in Canada and Western European countries. However, Japan has the highest life expectancy in the world for women and the fourth highest for men, and it has one of the lowest infant mortality rates. Since introducing universal health insurance coverage around 1960, its policy has focused on providing a minimum standard of care for all. Japanese citizens and Japanese industry must pay monthly health insurance fees, but the central government sets the rules and reimbursement rates. However, unlike England, the doctors are in private practice, not government employees. In the WSJ article, Landers also points out that surgeons have an even greater role in determining the course of therapy than in the U.S., including whether chemotherapy is given.
Another important cultural issue was illustrated thus: Shintaro Abe, a politician and the father of Japan's Prime Minister at that time, Shinzo Abe, was widely known to have cancer for 2 years before his death in 1991, but he was not told he had pancreatic cancer until 2 months before his death. Withholding the diagnosis is common in Japan (19th century attitudes).
Thus, the health care culture in Japan differs substantially from other economically strong countries from many angles. There is emerging change, mainly among patients. Cancer patients are organizing and pushing for changes in accessibility to care and to effective new drugs. In May 2005, 2,000 cancer patients had their first meeting in Osaka. One of its organizers, Shoichi Miura, a physician and cancer patient, gave a speech recalling the rallying image of "cancer refugee" (gan nanmin). "While Japan has become economically prosperous, cancer patients are in the same position as refugees who wander in search of food, water and someone who can help." He died 7 months later.
These efforts have borne some fruit. In April 2006, for the first time, 47 doctors who passed a rigorous exam were certified as oncologists qualified to administer chemotherapy. But the government continues to reduce reimbursement and increase co-payments by patients. Nakajima, the former health official, reflecting the government attitude, is opposed to raising reimbursements because corporate "executives want to keep costs down." He also says that a diligent surgeon who bones up on the latest literature can do just as good as a licensed oncologist (no multidisciplinary teams there).
Solving Cancer Issues
Rather than react with smug superiority to the Japanese system, I was struck by how many of the issues are the same in our country. How do we balance the inherent conflict between patients' desire to obtain any care they wish and how to pay for such an open-ended system? How effective must therapy be to warrant financial support and who is to decide what therapy is effective? And how do we balance medically effective and cost effective? How do we assure patients a high standard of quality cancer care regardless of where they live? How do we assure the same standard of care for the economically disadvantaged? What are the appropriate statistics for making policy decisions in cancer care? Do longevity and infant mortality always trump other measures?
More than academic discussions of medical economics, this story highlights the issues faced by patients and policy makers. Japan's approach makes economic sense and is supported by their excellent health statistics for longevity and infant mortality, and by their strong and highly competitive economy.
But the rapidly aging Japanese populace and the related increase in cancer mortality have raised awareness to several aspects of human nature that they must deal with. Cancer is the most feared disease in economically advanced countries, Japan included. Because of this fear, cancer patients, compared to those with most other diseases, seem even more desperate for some hope to hang on to. This extraordinary fear has good and bad consequences. The good-patients often become very knowledgeable about their cancer, they are often willing to try new agents, and some become active in advocacy groups that raise awareness and funds for research and care. The bad-cancer patients in their desperation are highly vulnerable to the "try anything" approach offered by well-meaning physicians (or by charlatans), even if the approach has no rational chance of making patients' remaining days better.
We in oncology have not systematically addressed these very human issues of fear and hope. On the one hand, there is extraordinary fear and the vulnerability it creates, and on the other, how to offer reasonable hope based on intermediate goals when cure or remission is not in the cards. We need a better understanding and better tools for helping patients deal with their fears. We must not abandon patients once we know they will not respond to more cancer therapy. We must offer other kinds of hope without making the patients' remaining time a constant misery. We must always be "someone who can help."