The Devastating Impact of Sequestration on Medical Research

The primacy of science and the overwhelming belief in medical research by the American people has sustained the research community and improved quality of life roughly since the turn of the 20th century. Almost without exception, the American people have voted for politicians who promise improved quality of life through improved health care, and they vote against those who disagree. Politicians squander good will and legislate at their own peril if they fail to support medical research.

But now Congress has done just that, with this year’s spending cuts enacted under the Budget Control Act of 2011. (Table 1 below shows early estimates of the cuts involved; Congress has since made modest changes to reduce the sequester, but the bigger outlook still holds.)

Act of Violence

Across-the-board cutting of budgets for the National Institutes of Health (NIH), National Science Foundation, Centers for Disease Control and Prevention, Food and Drug Administration, and so many others constitutes the single greatest act of violence against present and future generations that a U.S. Congress has ever committed. Essentially, the cleaver against research is a weapon of mass destruction. How many lives will be lost or debilitated by disease with the wanton act of not using a surgical blade to cut rather than a cleaver?

Indiscriminant cutting is an act of legislative malpractice. Not only are critical projects left to lie fallow, but young scientists who might have the secrets of tomorrow’s cures are discouraged, rejected, or simply driven to leave basic and clinical research. Thus, not only has our government reduced research today, it may have destroyed our best opportunity for a better future for our loved ones, our future generations, and ourselves.

Furthermore, once money has been removed from the flow toward improved health, the money will never be replaced at the same level. If there is a reduction of $2 billion for 10 years, there will never be a quick infusion of $20 billion. Once the money spigot gets restarted, it will increase slowly at a percentage of the budget of the previous year.

If the National Cancer Institute (NCI) would have had a budget of $8 billion in 2023 without the sequestration and then would get a 10% increase (or $800 million) starting that year, after the insult of sequestration it would get a $600 million increase that year because it will have had its budget cut to $6 billion. Thus, the pain and destructive force of sequestration is prolonged well into the future.

Moreover, these $1.7 billion cuts are not being imposed on medical research that has been on a runaway path of consumption. These cuts come after a decade of nearly a 20% decline in real dollars after inflation has been taken into account.

Significant Consequences

Allow me to list just a few of the ramifications of our government’s actions (or inactions). Compared to 2012, beginning in 2013 and continuing as far as the eye can see:

NIH drives job creation and economic growth. NIH research funding directly supports hundreds of thousands of American jobs and serves as a foundation for the medical innovation sector, which employs 1 million U.S. citizens. Cuts to NIH funding will have an economic impact in communities throughout the United States. For every six applications submitted to the NIH, only one will be funded.

Personal Stake

We all have a personal stake in this. Certainly, all physicians (and especially oncologists) understand the need to keep the research pipeline going so that we may have newer and better medications with which to treat our patients. All of us have experienced a personal or loved one’s benefit from clinical or basic science research. Whether it is because of a 70% reduction in cardiac disease due to improved therapy (eg, development of statins), or millions of Americans living with a history of cancer, or reduced infectious disease rates due to improved vaccines or antibiotics, we all have a vested interest in funding research.

I am alive—thanks to a bone marrow transplant many years ago—because of the basic and clinical research performed and the volunteers who came before me and subjected themselves to risks with the questionable reward of research. If it were not for that research funded by the NIH, I wouldn’t be here to advocate for it today.

The stakes could not be higher. We must advocate for our patients, for our loved ones, for our grandchildren. We must stand for common sense. ■

Choosing Care Wisely: Efficiency and Quality

Is More Care Better Care?

It is often said, by Americans, that the United States has the best care in the world. However, there are many population-based statistics that do not support that humble opinion. We certainly spend more money than any other nation by far. In fact, we may spend more money than nearly all other countries in the world combined. This begs a number of questions:

(1) Are we getting our money’s worth?

 (2) Are patients being overtested and overtreated?

(3) Can we physicians together decide what is reasonable to discuss with our patients to avoid unnecessary treatments and tests, and yet simultaneously improve care?

Yes We Can

The answer to these questions is “Yes.” A program originally conceived by the National Physicians Alliance through an America Board of Internal Medicine (ABIM) Foundation Putting the Charter into Practice grant, created a set of three lists of specific steps physicians in internal medicine, family medicine, and pediatrics could take in their practices to promote the more effective use of health-care resources. These lists were first published in Archives of Internal Medicine.

Pursuit of Excellence

Over 50 national medical organizations have created discussion points that emphasize quality of care without overtesting and overtreating. ASCO has been a leader in this extraordinary pursuit of excellence and has created its own set of recommended topics for discussion and consideration.

As a demonstration of the perceived value of this effort, private companies have developed sets of discussion points that help guide patients at the time of tremendous stress.

Once again, and appropriately so, our physician colleagues are taking the leadership role in creating better care for our patients. It is now up to all of us to follow the guidelines.

Telehealth/Telemedicine: Join the Band(width)

Telehealth and telemedicine, sometimes the terms are used interchangeably, is the access point to medicine for millions of Americans, and will be greater every year.  ASCO members and all health professionals who are caring every day for those impacted by cancer have found or will find that electronic communication is a tremendous advantage that if used wisely, will lead to greater access and affordability  and quality convenient care.

Telemedicine Defined

"Telemedicine is the use of medical information exchanged from one site to another via electronic communications to improve patients' health status. Closely associated with telemedicine is the term 'telehealth,' which is often used to encompass a broader definition of remote healthcare that does not always involve clinical services. Videoconferencing, transmission of still images, e-health including patient portals, remote monitoring of vital signs, continuing medical education and nursing call centers are all considered part of telemedicine and telehealth."

The use of electronic communications is a huge business growing at an estimated 55% annually.  With the government mandating the use of electronic health records, the new health reform act (The Patient Protection and Affordable Care Act [PPACA]) bringing more than 30 million newly insured patients, the estimate that there will be a shortfall of tens of thousands of physicians, a Merritt Hawkins Consulting firm survey that it takes patients 2-6 weeks to obtain a consultation, the need for affordable, accessible, quality health care is not only a present crisis, it is only going to get worse...a lot worse.

Although telehealth is particularly well-suited for primary care, dermatology, cardiology, mental health, ophthalmology, pathology, radiology, and fetal medicine have all used electronic communication effectively.  In 2004, the last year data is available, there were 1 billion outpatient visits in the US, including 104 million in emergency rooms, 430 million seen in primary care offices and 403 million seen in specialists offices and another 63 million in hospital outpatient departments.  At least 100 million visits were for non-emergent health conditions for example 28 million were for symptoms of an upper respiratory infection.  Many of these could easily been treated via electronic communication.

Rural populations commonly have difficulty getting to primary care physicians, and specialty care is extremely difficult.  Telephonic or video consultations for acute, non-episodic, non-life threatening conditions are cost effective and convenient.  These patients deserve quality care and electronic communications do not replace a personal "hands-on" consultation when necessary, but they are not always necessary.

Telemedicine offers the opportunity to achieve many goals, but it is not the panacea that solves all of the seemingly insurmountable issues that are inundating our profession.  The government demands more care, yet provides regulatory barriers to creative solutions.  Fortunately, private insurance companies and government insurance are beginning to pay for telehealth consultations. 

The perfect cannot be the enemy of the good.  There needs to be alternative access to quality health care.  Thus, new, creative, affordable convenient care fills a need that is being created by the economics of medicine. 

Oncologists care for a critical subset of patients with special needs, some physical and some emotional.  Telehealth offers the opportunity for specialists to communicate and thus care for those patients who are unable to access high quality care in an affordable convenient manner. 

All health care is advanced and improved through robust communication.  The basis of the medical home is communication.  With electronic health records and secure HIPPA compliant interface, the patient and family can communicate with the oncologist to discuss any health issue.  Family conferences anywhere in the world can easily occur.  Patients fears can be allayed.  Routine follow-up visits can be easily occur without the hassle of travel whether urban or rural. 

Like all technology and medical advancements, health professionals must be at the forefront to control to be certain that it is ethically used with the patient being the center of the process.  It is our responsibility and will make our patients healthier and happier, and our practices more satisfying.

Financial Revamping of Medical Education

The American medical education system was in a state of crisis in 1910 when Abraham Flexner published his treatise, Report on Medical Education in the United States and Canada (Carnegie Foundation Bulletin Number Four).1 A century later, we face another crisis in medical education—not in terms of its scientific foundation or quality standards as in Flexner’s exposé, but in its financial basis.

According to a report from the Association of American Medical Colleges (AAMC), the median 4-year cost of attending a U.S. medical school ranges from $187,000 (public school) to $264,000 (private school).2 Moreover, the median cost of medical school has grown at almost twice the rate of inflation, and the median debt medical students have at graduation is staggering.

Squeezed Tighter Each Year

It is estimated that 86% of medical students have substantial educational debt; the average debt is $205,674 for osteopathic medicine students and $162,000 for allopathic students.3, 4, 5   According to the AAMC, depending on the repayment structure, a medical school graduate with $162,000 of debt would have monthly payments ranging from $1,500 to $2,100 after residency training.2

In addition, the Obama administration and some members of Congress want to cut the funding of resident training in more than 1,000 of the nation’s teaching hospitals. (Each year the federal government contributes about $9.5 billion in Medicare funds, and approximately $2 billion in Medicaid dollars, and the states add about $3.78 billion through Medicaid funds.6) So the costs and debt have been going up, while the training and compensation have been going down. The new graduates are being squeezed tighter each year.

The economic reality of medical school debt certainly affects decisions about choosing between primary care and one of the traditionally more lucrative subspecialties. A primary care position pays about $150,000 per year, whereas a surgical subspecialist may earn $400,000 or more. Thus, the cost of education and the incurred debt are public health issues.

The American Academy of Family Physicians predicts that the United States will require an additional 40,000 family physicians by 2020. It is little wonder that the aging population will be faced with a shortage of primary care doctors. In addition, if the medical home concept and accountable care organizations are to work in the future, the gap between the growing need and the expected primary care physician shortage must be closed.

Resolving the Debt

There are a number of methods of loan forgiveness: States help repay or forgive loans if doctors serve in rural areas, the NIH helps repay loans when doctors enter into research programs, and the National Health Service Corps also has loan repayment plans. There is even a proposal to charge subspecialty residents (by not giving them a residency salary) for their education, yet continue the annual stipend for primary care residents,7 and there are numerous medical schools in the United States and England that offer a 3-year medical school without any apparent reduction in the quality of the education.8

Only through creative, fresh approaches will the public health issue of medical school debt be resolved. Doctors are privileged in many ways, accounting for 18 of the 20 highest paid professions in the United States. But disincentives to enter primary care including relatively less income compared to their specialty colleagues and greater difficulty paying off debt, results in a reduction in exactly the physicians who we need to care for Americans now and into the future. 

Accountable Care Organizations: The New Normal?

The accountable care organization was introduced into our lexicon during a public meeting of the Medicare Payment Advisory Commission in 2006, and the term became ubiquitous when it was specified in the Patient Protection and Affordable Care Act of 2010. After the November 6 election, accountable care organizations became a fact of life. The principle that defines the reason for accountable care organizations is the near-uniform belief that health care in America is fractionated, too expensive, and demands creative reform.

Basic Principles

Through accountable care organizations, the Affordable Care Act envisions the transformation of current volume-based, potentially perverse incentives to overtest and overtreat, to value-based incentives for delivery of high-quality, lower-cost health care. These organizations are designed to coordinate care through a robust system of patient-centered primary care health professionals. However, medical and surgical specialists rapidly have become an integral part of these organizations.

Oncology, which accounts for 10% of health-care expenses, certainly will be impacted. Although the Affordable Care Act described accountable care organizations as a means of coordinating care for Medicare beneficiaries, private insurers are embracing the concept.

So, what exactly are accountable care organizations? Ideally, they are integrated systems of physicians and other health providers that increase coordinated care and improve patient outcomes. They can be independent physician organizations, integrated delivery systems (hospitals and their participating physicians), multispecialty group practices, physician-hospital organizations (nonemployee medical staff), or virtual physician organizations (commonly in rural areas). Theoretically, the money saved by a successful accountable care organization will be shared in certain undetermined percentages by the insurer (including Medicare) and the organization itself (including the doctors).

The Congressional Budget Office has predicted that accountable care organizations will save Medicare $5 billion over the first 8 years, by eliminating unnecessary or redundant procedures, sharing clinical information, and meeting quality metrics. However, the projected budget for Medicare in that same period of time is $6.2 trillion. Thus, the extraordinary effort to create accountable care organizations will save approximately 0.08% of the Medicare budget. This is known by the Congressional Budget Office as “budget dust.” In addition, the estimate of legal and consulting fees to create the existing and near-future accountable care organizations is $1 billion. Already, 20% of the savings is consumed, and the process has just begun.

In further evidence of the money involved, it is estimated to cost $10 million to $30 million to create a fully functional accountable care organization. Who has that kind of money? The answer is commonly, but not uniquely, integrated health systems—ie, the hospitals.

Added Rationale

H.L. Mencken famously said, “When somebody says it’s not about the money, it’s about the money.” Nevertheless, it seems clear that in the immediate future, there is little money to be saved or shared. Thus, the best reason to create and support the accountable care organization concept is for improved patient outcomes. But is there another reason?

Hospital systems have been buying practices at a rapid pace. In 2000, 20% of primary care doctors and 5% of specialists were employed by hospital systems. In 2012, 40% of primary doctors and 22% of specialists are employed. And this will continue until the vast majority will be controlled. It is highly unlikely that this extraordinary aggregation of physicians and the creation of accountable care organizations is a coincidence. Physicians have always been an uncontrollable and independent lot. That, like fragmentation of care and fee-for-service, will soon be a historical vignette.

Oncologists have a lot at stake. Throughout the nation, many practices are being purchased by integrated health systems. This may result in more oncologists integrating their practices into large single-specialty groups to preserve their independence and create outcomes and value-based oncology centers of excellence.

Accountability Question

The question on all physicians’ minds is: To whom are the accountable care organizations accountable? Physicians staunchly fight for the accountability to be to the patient, not the bottom line. Yet, one of the reasons for the Affordable Care Act is the crisis produced by the very system that physicians were central in creating.

There is no turning back. The federal health-care legislation may be slightly modified, but it is the future of health-care delivery. It is up to oncologists to honestly and transparently work for the benefit of the patient with cancer, but simultaneously understand that the status quo is over, and quality-based care that promotes improved outcomes will be the new normal. 

Patient-centered Care vs Health-care Economics

The great American scientist and physician, Dr. Irving Selikof, said that “Statistics are people with the tears wiped away.” At this year’s ASCO Annual Meeting, we will be introduced to new ideas, discoveries that open windows of opportunity for improving our patients’ quality and quantity of life, and creative methods of reducing the ravages of disease. Data, statistics, facts, and erudite discussions will inundate our week. But we must realize that all of this new information and all the biotechnologic marvels that are displayed in the convention hall are meaningless to the person with cancer unless we are patient-focused.

To paraphrase Dr. Otis Brawley, too many patients are dying, not because of a lack of research but because the research is not being applied to them. Translating research and applying compassion will save more lives, bring greater comfort to our patients, and bring greater satisfaction to our professional lives.

Wrenching Decisions

But how can our society pay for the scientific discoveries that may lead to cures, prolongation of life, or simply a slight delay of death? Like so many wrenching decisions being considered in the face of our nation’s debt, we need to consider economics when health care becomes too expensive and crushes other societal needs.

And how shall we pay for the new discoveries, the short- or long-term therapies, the potential cures, and the desired preventions? Should economics be further introduced into the decision-making of the care we render? If a patient and family were told that a therapy being offered has a 50% chance of prolonging life by 2 to 4 months, would the patient endure the further care? If that care were to cost the patient or his/her future estate $100,000, would that alter the decision? For patients who can afford such therapy, should society be asked to fund it, essentially funding the monies passed down to the patient’s heirs? At what point does society state that decisions impacting the economics of health care are no different than those involving the economics of other aspects of life?

Where clinical studies have proven that a therapy (medication , radiation or surgery) clearly prolongs a quality productive life , particularly in the young, society should provide the care when insurance is not adequate.  However, when the treatment is limited in its ability to improve life, the patient and his/her family should consider all the implications. 

I will never forget the elderly patient with widely metastatic prostate cancer who came into my office with his wife of 50 years.  He had Medicare, but no other insurance.  He was faced with the decision of whether to continue his depot LHRH agonist, because of the co-pay of several hundred dollars.  He tearfully said that he could no longer live with the idea that the medication may prolong his life a few more months, but he believed his memory would be sullied in his wife's mind because she would have less money to live on  when he was gone.  I tried to dissuade him and spoke to the company for compassionate care, and it responded favorably, but the patient refused and died soon thereafter, satisfied with his decision.

Considering that a significant amount of one’s lifetime health-care expenditure occurs in the last year of life, and that there is not a limitless amount of money, personal health-care economics may need to be considered as our nation struggles with controlling the debt.

The Impatient Patient

Whether we are in research, clinical care, or both, our goals are to provide the best care for our patients. There is no reasonable method of determining whether a discovery will lead to a cure, or better and longer health for patients. So the pursuit must continue with greater energy, enthusiasm, and funding. That is critical. The public has been convinced of the primacy of science and the real value of research. Our nation has made the decision to fund biomedical research at the expense of other less valued services and industrial output. But there seems to be a limit, and the ultimate consumer, the patient, is getting impatient.

Some Americans believe that they are not getting their money's worth. Science for the sake of science may be peaking in its perceived value. Application and translation of science for the betterment of health has begun to take hold of the political (and the kitchen table) discussion. Is the country improved by funding remarkable discoveries that will have no chance of improving anyone’s health? Scientists often say that one cannot predict what small finding will lead to major changes, and that is true. But there are limits to the logic, and with limited funds and a crushing debt, one must use common sense.

Consider Risk-sharing

Thus, we must continue advancing the discoveries, the exciting science, the exhilaration of lighting the darkness of the unknown, but we should consider risk-sharing. If projects are worthy and show the promise of translating into long-term therapies, preventions, or cures, the nation must promote them. But those who benefit—whether businesses or patients—and have the means must also be willing to cover the cost through risk-sharing, direct payment, or probate.

On Mentoring: Looking Back with Gratitude and Paying It Forward

Upon graduation from medical school, doctors are given a gift that lasts a lifetime—the gift of respect. That respect needs to be re-earned every day, but it is accompanied by other rewards that come with caring for people: the ability to gain another’s trust, to reverse illness that alters the patient’s life, to hold fast an individual’s innermost secrets, and to gain enormous satisfaction in so doing. These are the rewards of being a physician.

My father was a physician, approximately 40 of my direct relatives are or were physicians, and I am also the extraordinarily fortunate “son” of innumerable professors and mentors who educated me. How do I repay those who came before me and gave me so much?

Repaying Our Benefactors

When I asked if I might repay my father for providing me with the opportunities for a great public school and medical education, he said the only repayment necessary was to see to the education of my children, and I have. But what is my responsibility to those, in addition to my daughter, who followed me into medicine? As far back as Hippocrates, doctors have been given the responsibility to not only care for others but also to teach and mentor the “sons” and “daughters” who enter medical practice after them.

Our schools also deserve our gratitude. We may have been excellent, hard-working students, but the schools we attended did not have to admit us, educate us, and pass their imprimaturs onto us. We owe those schools our support, both in thanks for our education and in the interest of educating future students.

Compassion and Wisdom

The answers in medicine constantly change, but most of the questions never do. Likewise, there will always be a place for the art of medicine, built on compassion and judgment. Keeping current in the science of medicine never replaces the need for compassion, and the art of medicine is a special gift that must be conveyed to younger physicians. It is our responsibility to convert those who do not know the art of medicine to those who understand and practice this essential skill. 

As we grow older, hopefully we grow wiser. Wisdom, in my estimation, is knowledge plus experience. One cannot have the judgment to know when and when not to treat without having treated many before and learning from the experience. The patient relies upon that wisdom the doctor derives from experience.

We can help so many more by passing on what we have learned; old mistakes need not be repeated. Our hands may not be as steady, our stamina may not be as reliable, but we can still identify symptoms and help make diagnoses, and patients as well as a future generation of physicians can profit from our insight.

Our Legacy

So once we are entrusted with the gift of being a doctor, we owe it to our parents, our teachers, our profession, and ourselves to pay it forward. Mentoring is the link from the past to the future. Our legacy should be to prepare our children and the physicians of succeeding generations, for the benefit of all.

The Art and Grace of Just Letting Go Options after a career in oncology

Like a breeze rippling across a lake, the end of your career is approaching and you cannot escape its path. You can see it coming, and before you know it the inexorable movement will rush past you. You have two choices: Build a sail so that you can capture the energy and move with it, or remain unprepared and be left behind as it sweeps by.

The trick is to seamlessly move from full-time practice to the next chapter in your life, while fulfilling your philosophical, physical, and emotional goals and going to your strengths. It is an enormous waste of wisdom for doctors who have gathered decades of knowledge and experience to simply walk away from medicine. It is actually a public health disaster. For the first 30 to 40 years of your life, you were educated to care for the public, and the payoff for society was an equal number of years of service. However, if there are opportunities for the doctor to continue to give back to society for another 10 years, that payoff increases by 25%.

Planning for Transition

Every physician knows that a professional career must come to an end. Some hang on longer than is safe for them or their patients. They hang on because of the fear of the future. There is an art but also honor and grace in just letting go. However, with planning—which should start years if not decades before the inevitable transition—the plans become a natural extension of life rather than an abruption of it.

In my particular situation, I became involved with national politics 20 years before my forced retirement. I planned for a seamless shift from urology private practice and public policy to consulting exclusively in public health policy. I did not know at the time that I would be forced to retire early due to the ravages of malignancies and their complications, but I was ready. I built my sail for the oncoming winds of change and was able to take advantage of even the unexpected dire circumstances. I am recommending the same to you.

The Value of Teaching

Teaching has always been a responsibility of physicians. Whether we teach our patients or teach students and/or residents, we fulfill our oath and satisfy an inner longing to pass our knowledge, experience, judgment, and wisdom to those who follow us. This is our duty to ourselves, our teachers, and the patients who will be treated in the future. As in the Hippocratic oath we swore upon receiving our medical degree:

I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment, the following Oath and agreement: To consider dear to me, as my parents, him who taught me this art; to live in common with him and, if necessary, to share my goods with him; To look upon his children as my own brothers, to teach them this art [italics added].

There is a medical school, a teaching Veterans Administration hospital, or a community clinic (federally qualified or not) within 50 miles of almost all physicians. It is very satisfying to teach and care for those who are underinsured or uninsured, whether for compensation or as a volunteer. It is a graceful and dignified exit from a career that has been the pride of your professional life.

Other Opportunities

There are also financially productive and professionally adventurous routes by which to expand your horizons just as your practicing medical professional career is in its denouement. The knowledge and experience that is gained during the 30 to 40 years of practice allows you to effortlessly provide value to businesses that engage in the health industry. Since 16% of the American economy is derived from health care, the opportunities are vast.

Decisions that would take weeks of focus by the uninitiated, non-physician executive would have immediate clarity to an experienced physician. Furthermore, there is a greater chance that you—as opposed to the non-physician businessman—would make the correct decision based on your judgment. That is why so many businesses understand the value of physician executives. The doctor needs to recognize his/her strengths in this context as well and provide a compelling argument to prospective employers.

Your responsibility to yourself and family is to build a sail that is ready to take you to the next chapter of your life. Get ready; the wind is coming your way.

The Other Side Of Healthcare

“Birth is a beginning

And death a destination.

And life is a journey:

From innocence to awareness

And ignorance to knowing;

From foolishness to discretion

   And then, perhaps, to wisdom;

From weakness to strength

Or strength to weakness–

      And often back again;

From health to sickness

      And back, we pray, to health again;

From defeat to defeat to defeat–

Until looking backward or ahead,

We see that victory lies

Not at some high place along the way,

But in having made the journey, stage by stage,

      A sacred pilgrimage.

Birth is a beginning

And death a destination,

And life is a journey,

A sacred pilgrimage--”1

After both giving and receiving care, the true meaning of health becomes evident.   Besides the sacred Oath that physicians take upon entering the medical profession, Hippocrates also wrote,  “A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from illness.”2 

We all face the reality of life and death, but few extend the understanding to both themselves and their patients.  When I was in the throes of my life threatening illness, a physician told me that my experiences were meaningless to others because that unless it is personal, that knowledge will not change one's insight.  I hope that is not true for all.

For 30 years I have been caring for patients with every type of genitourinary disease, but particularly malignancies.  In September 1995, I discovered a malignant melanoma on my right knee.  It was quickly removed, and then widely excised.  That was just the beginning.

 Six weeks later, I developed left chest pain that was quickly evaluated.  A 20-cm non-Hodgkin’s lymphoma was subsequently removed from my abdomen along with my spleen and a portion of my pancreas.  After seven courses of chemotherapy, a bone marrow biopsy revealed a minimal residual lymphoma. 

After several consultations at major medical centers, I agreed with my truly astounding physicians and aggressively treated the disease with a autologous stem cell rescue therapy (transplant).

Douglas MacArthur said that the 2 words that summarized all lost battles were, “Too late.” Just as in war, I thought that the treatment for my cancer must be more aggressive than the disease, or else the disease would win.

The experience of being as sick as a person can be, and still believe that there is a chance for not only recovery, but also cure is an extraordinary physical as well as philosophical experience.  Profound exhaustion due to inadequate, restless sleep, anemia and weight loss sapped my life.  I literally saw my life disappear day by day. When you are uncontrollably losing weight, you are losing your body . . .you are losing your life.

However, I kept my optimistic eyes on the prize - the future good health, enjoyment of family, friends and profession.  Denial is only pathologic if it interferes with one’s life.  I may have used denial to ignore the present and look toward the future.  In fact, this mindset allowed me to ignore the potential fatality and the certain miseries.  I was able to live at that time so that I could live in the future. The entire health care team, including family promoted the feeling that I would recover.  Their confidence and encouragement gave me the strength to endure.

Thus, by projecting a positive attitude toward patients, the doctor gives more than life-sustaining medicine; the doctor gives life-sustaining hope.  The patient will identify with the doctor’s positive attitude immediately, and live by his or her words, in fact, live because of the words.  Hippocrates wrote:  “For where there is love of man, there is also love of the art.  For some patients, though conscious that their condition is perilous, recover their health simply through their contentment with the goodness of the physician.”3   In my experience, the patients or their families that are the most appreciative of my efforts, are the ones that I scientifically help the least.  If the physician has no medications or surgery, there is only one thing left to give . . . to give of oneself.    The inner strength that transfers from physician to patient overcomes many deficiencies in science.

It would be dishonest if physicians were not realistic in the assessment of the prognosis, but confidence and positive attitude may improve the patient’s chance for life and future quality of life.  Clearly, it will not hurt.

The personal time the physician spends is the lifeblood of the doctor-patient relationship.  We are all one diagnosis away from being on the other side of the doctor/patient relationship.  The patient’s emotions and knowledge, and possibly his life hang on every word you say.  By placing yourself in the patient’s position, your bedside manner, your compassion and empathy will improve and give your patient and you greater satisfaction.

If it were not for the personal care giver, a spouse, a friend, a child, or a sibling, there would be no survival.  It is nearly impossible to endure a transplant or severe illness alone.  The patient gets all the credit, but it must be shared.  There is no quality life without the survivor having the caregiver to share the survival.  Thus, the care receiver and the caregiver are inexorably linked forever.

Just as the patient’s personal caregiver is forever linked to the patient, the physician is also linked to the patient and brings the life force to the true meaning of the word “doctor.”  Though time will pass and I will be physically and mentally in a different state, my physician is with me; for I am the embodiment of his art and science.  I am proof that science, art, and acts of human kindness lead one from the grips of death to the ecstasy of  life.          

Some pass through a challenging time, others learn from it.  Understanding life means grasping its meaning, and appreciating that personal experiences impact on interpersonal relationships.  I always tried to be a compassionate physician, yet I wrapped myself in the protection of objectivity.  However, now as I tell my patients about their illness, perhaps their malignancy, I identify with them physically and emotionally. Further, and what is more important, the patient identifies with me.  They sense that I would not order a test or a procedure without first understanding how these would affect them and possibly cause pain or discomfort.  However, they also know that these tests may mean . . . hopefully mean . . . a passage to health again.  They also know that as soon as the tests are complete, I will tell them the results.  Physicians who do not immediately report to the patient results of crucial blood tests, x-rays or especially a biopsy when anxiety and well being are hanging by the results, have never waited for test results on themselves or their families.  The simple act of human kindness of calling the patient the day of the test can save an enormous amount of anxiety. 

I survive because of those who came before me.  I live because of the research performed by others, often funded by the generosity of the American people.  But the generosity is beyond their tax dollars supporting research; I live because others participated in clinical trials that may not have helped them.  By volunteering for clinical research, they helped push back the unknown and shed light upon the darkness of the undiscovered.

Our patients are our professors.  They teach us every day about the disease processes we treat.  But they also teach us about the subtleties of life and of illness.  They teach us how to live with disease with dignity, and how to die with disease with dignity.  For that, we owe them our livelihoods, but more important, our spiritual understanding of life and death.

Our Patients, Our Teachers

There is no greater professional satisfaction than the knowledge that you have cared for a patient and the care brought an improvement in the patient's health.  Regardless of the level of appreciation, whether the patient is cured or not, and even if the patient's sense of well-being may be psychological rather than physical, we as physicians gain from the interaction.  All economics aside, this is the essence of being a doctor.

The Doctor-Patient Relationship

Patients have taught me so much about courage, spirituality, and dignity.  Enduring surgery, chemotherapy, and radiation therapy takes a singularity of thought and a leap of faith.  The lessons learned from my patients gave me the understanding and fortitude I needed when I was ill.1 Being with a patient who has accepted the inevitable end of life with dignity and resolve has taught me how to help others in the same situation.  These experiences cannot be taught in medical school lectures or books. There is a palpable connection that clearly defines the doctor-patient relationship.  Nothing else in professional life can match it.

Dignity

I remember an elderly patient with widespread metastatic prostate cancer who tearfully told me that he could not afford the copay on the LHRH agonist that I prescribed. He did not want to spend the money that his wife would need once he was gone, and he did not want to sully his memory by her thinking that the copay for the medication he was receiving was causing her to struggle.  Even though I beseeched him to continue and offered programs through various agencies or the pharmaceutical company, his determination and pride resulted in him no longer accepting the medication. This man embodied resolve and dignity.  He lived and died as he wanted to be remembered.

Compassion

I remember a bedridden man who had aphasia due to a stroke.  I saw him and his wife of 65 years engage in a lifetime of memories and conversation simply by looking into each other's eyes.  The nonverbal communication was more than a thousand words could have conveyed. That experience taught me that how I present myself to my patients can enormously impact the confidence they have and the words I speak.

Patients who donate their organs, whether as living or deceased donors, have impacted my understanding of selfless love for the future.  Living related donors are remarkable, but living unrelated donors are awe-inspiring.  And those who donate organs upon their death demonstrate an immeasurable sense of hope for the future.

Patients whose emotions and personalities have evolved from childhood innocence to adult maturity and to fighting critical illness have taught me about the necessity of embracing friends and family. 

Wisdom

A doctor is an aggregate of experiences.  Wisdom is knowledge plus experience.  The thousands of interactions I have had resulted in the development of my personality, philosophy, and a measure of wisdom.  I have gained enormously from listening to my patients. Their stories-landing on Normandy, living through the hell of Iwo Jima, suffering through the jungles of Vietnam, losing a loved one or a job, enjoying life to its fullest, or not being able to enjoy even one minute-these are the stories that make up the tapestry of life.

I am a better person and physician to have been in the privileged position of confidant and doctor to so many people.  I am very fortunate to have been on the receiving end of my patients' teachings. It has made me who I am today. 

Prostate Cancer, Pediatrics, and Priorities

America has the best health care that money can buy, but there is not enough money. Is it reasonable to have our nation pay for sipuleucel-T (Provenge), a $10,000/month medication that will prolong the life of a Medicare patient with widespread metastatic prostate cancer by maybe 4 months and yet not have the money to immunize children? For example, availability of a vaccine (palivizumab [Synagis]) to prevent respiratory syncytial virus in children is severely restricted, although it is proven to prevent a potentially life-threatening pulmonary infection.

The estimated cost is $10,000 per child for 5 months of the cold season. Is it reasonable to have a national policy that any medication approved by the FDA is also paid for with public funds? Perhaps, but there are consequences.

Sipuleucel-T is not only a new treatment; it has become an example of advancement of science without regard to the economics of medicine. It is a metaphor for possible

misappropriation of limited resources and priorities.

Should we have an open discussion about the ramifications of balancing the budget on the back of health care? When members of Congress vote against suspending the sustainable growth rate (SGR) due to the cost, are they willing to say that they are for prioritizing or rationing care?

Some of the politicians who recently railed against “death panels”—something that was never proposed—are the same ones who have rallied crowds around the belief that the debt is unsustainable and that there must be control of the budget. For those politicians who want to eliminate the SGR and thus not reduce money going to health care, are they willing to say that the $250 billion (and growing) cost of not implementing the SGR is not a concern to the economy? Is the national debt and voracious borrowing from China acceptable?

The nation cannot have it both ways. The reason why there is such contention is that these are very tough choices. The American way of solving the healthcare crisis should be to prevent, diagnose early (using advanced biomarkers), and cure our way out of the problem.  This would reduce costs, democratize healthcare by having cures (inherently much cheaper than prolonged treatments) available to all, and solve the fundamental issue—that the cause of the healthcare crisis is the cost. It has been estimated that if

medical science could push back the onset of Alzheimer’s disease by 5 years (not even

prevent it), the Medicaid crisis would be resolved because Medicaid nursing homes

would be emptied.

Where the Money Is

When asked why he robbed banks, Willie Sutton reputedly said, “Because that’s where the money is!” Two other adages—“Show me the money,” from the movie Jerry McGuire, and “If they say it’s ‘not the money,’ you know it is the money”— are also instructive when it comes to the cost crisis in health care. There are only a few places in the U.S. economy that, if reduced, will make a real difference in the debt. Medicare and Medicaid make up 20% of the budget today. In 2050, they will consume 40%. If Americans are unwilling to solve the entitlement problem, the country will eventually be bankrupt, and even China will not be able to buy us out of it.

There must be consistency in our thinking.

Sipuleucel-T is a potentially valuable medication to a subpopulation of patients with metastatic prostate cancer refractory to hormones, for whom other chemotherapies

have probably failed. These unfortunate individuals will gain an average of 4 months of life, although the quality of extended life might not be very satisfying. If

budgets are ever to be balanced, this questionable benefit would likely result in others

not being treated.

So let us have a real debate about the cost of health care and the choices (including

sacrifices) that need to be made to pay for it. Health-care economics must

be viewed not in a vacuum, but rather, in a fiscal universe of choices and limitations.

Let our priorities dictate that when there are limited funds, the children are first to receive the care they richly deserve. And finally, we should focus on applications and translational research that will bring prevention, early diagnosis, and cure to patients, thereby eliminating prolonged, costly, chronic treatments.

How Do We Eliminate Unnecessary Treatment for Prostate Cancer?

Prostate cancer was diagnosed in nearly 200,000 American men in 2009. Approximately 50% to 62% of the men who were diagnosed have low-risk prostate cancer defined as: (1) prostate-specific antigen (PSA) of 10 ng/mL or less; (2) Gleason histologic score of the primary and secondary microscopic patterns each assigned a value of 1 to 5 (an indication of the tumor's potential aggressiveness) and less than a total of 7 (with no patterns of 4 or 5 in biopsies); and (3) no more than 10% to 50% cancer (various opinions) found in no more than 2 of 12 biopsy cores.

Over the past 30 years, nearly 1 million American men have received radiation therapy and/or radical prostatectomy for prostate cancer that would have a very low risk of ever leading to their death. These men, however, have been subjected to the attendant morbidity associated with therapy-morbidity that may have resulted in a decline of their quality of life.1

Willet F. Whitmore, Jr, Chairman of the Urology Service at Memorial Sloan-Kettering Cancer Center for more than 30 years, said of prostate cancer in 1990, "Is cure possible? Is cure necessary? Is cure possible only when it is not necessary?"2 It may be that nothing has fundamentally changed in the past 20 years.

Surgical or radiation treatment for early-stage disease cures 98% of men at 10 years. Those men who receive no treatment for low-risk prostate cancer have a 98% survival rate. What has been accomplished? It is time to rethink our approach to this disease.

Concerning Data

Annually, 30 million men are screened using PSA criteria. But two recent U.S. studies1,3 have thus far not shown any reduction in the death rate from prostate cancer. And European investigators reported4 that only 1 death could be prevented for every 1,400 men screened and 48 treated. Also, studies have shown that for patients with low-risk prostate cancer, a 10-year delay occurs between the time the cancer is detected by PSA and the time there would be physical evidence of the disease.5,6

Radical prostatectomy was performed nearly 60,000 times last year.7 Approximately 80% of surgeons performed fewer than 10 procedures per year, and 25% of men who underwent surgery had a surgeon who performed only a single such procedure in a year. This paucity of experience has been found to translate into poorer outcomes,8 higher complication rates, and a higher risk of postoperative incontinence and impotence. At least 30% of men given curative treatment for prostate cancer experience negative quality-of-life consequences.

In 2009, radiation therapy was used to treat approximately 85,000 patients with prostate cancer (55,000 by external-beam radiation therapy and 30,000 by brachytherapy), the majority with low-risk disease. Radiation therapy and surgery are associated with equivalent 10-year outcome data, but radiotherapy avoids the potential risks associated with anesthesia. Nevertheless, this modality has not produced a significant reduction in the death rate in patients with low-risk prostate cancer.

Relative Treatment Outcomes

Active surveillance or "watchful waiting" offers an option for some men with low-risk prostate cancer,9 in avoiding the potential adverse quality-of-life consequences from treatment. In several large studies of active surveillance, only 2% to 5% of patients had tumor progression and 16% to 25% had a significant rise in PSA.10 This approach has resulted in very few men requiring further therapy, no change in mortality, and of course no complications from surgery or radiation therapy. Thus, no treatment has the same effect on outcome as aggressive therapy.

Yet NCI's Surveillance, Epidemiology and End Results (SEER) data demonstrate that over the past 20 years, marked increases in the use of radiation therapy and radical prostatectomy (compared to no therapy) have been observed. This may be because more men are being screened for elevated PSA. In addition, improvements in both surgical and radiation therapy and over-marketing by the health-care industry have given the public the perception that the treatments today have a greater success rate and fewer complications.

In support of surgical treatment, Holmberg and colleagues reported a randomized Swedish trial designed to determine whether radical prostatectomy reduces the risk of death due to prostate cancer. They observed a statistically significant difference in the risk of death due to prostate cancer after radical prostatectomy, as compared with watchful waiting, but no significant difference between the two groups in the overall survival rate.11

Finding Treatment Criteria

It has been widely reported that prostate cancer deaths have been reduced recently, but this is a reflection of the increased number of men diagnosed because of PSA screening. Actually, it is the proportion of men with prostate cancer who die that has decreased. The percentage of men who die with prostate cancer has declined because the number of men who have been diagnosed through screening has massively increased. In other words, the numerator (deaths) has stayed the same while the denominator (incidence) has risen. In 1975, 1993, and 2005, respectively, approximately 90, 240, and 170 American men per 100,000 were diagnosed with prostate cancer. The number of Americans per 100,000 dying of prostate cancer today is actually higher (~25) than it was in 1930 (~18).12 Wholesale screening results in earlier detection and treatment of a disease that would never cause harm. This is not progress; it is overtreatment13 due to over-screening.

Histologic Grade Determines Treatment

The histologic grade should determine whether the patient is treated. A Gleason grade totaling 6 or less for the primary and secondary areas commonly indicates that the disease will not cause the patient's death. However, when the pattern results in a score of 7 or greater, the cancer has a much more aggressive course. For every one-level increase in histologic grade of either the primary or secondary pattern, there is a reduction in survival of 20% to 50% in every age range over 5, 10, and 15 years. These data are substantially true regardless of treatment.14

Does this imply that the patient's survival is determined at the time of the diagnosis? Should patients who are diagnosed with a Gleason score of 7 to 10 be treated but have a higher expectation of prostate cancer leading to their death, and those with Gleason 6 or less be left untreated? Perhaps. What is absolutely certain is that there are tens of thousands of men who are needlessly or inappropriately treated (any treatment, wrong treatment, or treatment by an inexperienced doctor), either because they have low-risk prostate cancer, an expected survival of less than 10 years, or advanced disease.

Need for Research

Billions of dollars are expended annually in overscreening, overdiagnosis, and treatment of tens of thousands of American men,15 resulting in loss of quality of life. Only a tiny fraction of desperately needed money is focused on research.

Recent studies in genetics at the University of Michigan,16 Memorial Sloan-Kettering,17 Texas Southwestern,18 and Harvard19 have identified DNA signatures that are more prevalent in aggressive tumors. This type of critical basic research could lead to an understanding of which patients should be observed and which should be offered curative therapy.

Basic research must be expanded to determine which patients need treatment; medical decision-making must be based upon evidence and outcomes; and men should be treated by experienced doctors only if there is the likelihood that prostate cancer may cause their death. ■

References

1. Welch HG, Albertsen PC: Prostate cancer diagnosis and treatment after the introduction of prostate-specific antigen screening: 1986-2005. J Natl Cancer Inst 101:1325-1329, 2009.

2. Whitmore WF Jr: Natural history of low-stage prostate cancer and impact of early detection. Urol Clin North Am 17:689-697, 1990.

3. Andriole GL, Crawford ED, Grubb RL 3rd, et al: Mortality results from a randomized prostate-cancer screening trial. N Engl J Med 360:1310-1319, 2009.

4. Schröder F, Hugosson J, Roobol SJ, et al: Screening and prostate-cancer mortality in a randomized European study. N Engl J Med 360:1320-1328, 2009.

5. Draisma G, Boer R, Otto SJ, et al: Lead times and over detection due to PSA screening: Estimates from the European Randomized Study of Screening for Prostate Cancer. J Natl Cancer Inst 95:868-878, 2003.

6. Tornblom M, Eriksson H, Franzen S, et al: Lead time associated screening for prostate cancer. Int J Cancer 108:122-129, 2004.

7. Blum RH, Scholz M: Invasion of the Prostate Snatchers. New York, Other Press, 2010.

8. Savage CJ, Vickers A: Low annual caseloads in US surgeons conducting radical prostatectomy. J Urol 182:2677-2679, 2009.

9. Klotz L: Active surveillance for favorable risk prostate cancer: What are the results, and how safe is it? Los Angeles, Prostate Cancer Research Institute. Available at http://www.prostate-cancer.org/education/localdis/klotz_activesurveillance.html.

10. NCI Cancer Bulletin, January 12, 2010. Available at http://www.cancer.gov/aboutnci/ncicancerbulletin/archive/2010/011210/page2. Accessed October 4, 2010.

11. Holmberg L, Bill-Axelson A, Helgesen F, et al: A randomized trial comparing radical prostatectomy with watchful waiting in early prostate cancer. N Engl J Med 347:781-789, 2002.

12. Jemal A, Siegel R, Jiaquan Xu, et al: Cancer statistics, 2010. CA Cancer J Clin 60:277-300, 2010.

13. National Comprehensive Cancer Network: NCCN Clinical Practice Guidelines in Oncology: Prostate cancer. V.3.2010. Available at www.nccn.org. Accessed October 4, 2010.

14. Albertsen PC, Hanley JA, Gleason DF, et al: Competing risk analysis of men aged 55 to 74 years at diagnosis managed conservatively for clinically localized prostate cancer. JAMA 280:975-980, 1998.

15. Saigal CS, Litwin MS: The economic costs of early stage prostate cancer. Pharmacoeconomics 20:869-878, 2002.

16. Palanisamy N, Ateeq B, Kalyana-Suldaram S, et al: Rearrangements of the RAF kinase pathway in prostate cancer, gastric cancer and melanoma. Nat Med 16:793-798, 2010.

17. Taylor BS, Schultz N, Hieronymous H, et al: Integrative genomic profiling of human prostate cancer. Cancer Cell 18:11-22, 2010.

18. Kong Z, Xie D, Boike T, et al: Downregulation of human DAB2IP gene expression in prostate cancer cells results in resistance to ionizing radiation. Cancer Res 70:2829-2839, 2010.

19. Min J, Zaslavsky A, Fedele G, et al: An oncogene-tumor suppressor cascade drives metastatic prostate cancer by coordinately activating Ras and nuclear factor-κB. Nat Med 16:286-294, 2010.