MD ANDERSON
Last week, I went to Houston, Texas where I was seen by highly skilled, involved, competent physicians associated with MD Anderson's Cancer Center. Neither my time, resources or energy were wasted as I (with my spouse and a son)  saw thoughtful knowledgeable consultant after consultant, visited the laboratory for highly refined tests not generally available elsewhere and the radiologic service for a scan which had not been done before but which was important for the consultant's planning of future health care treatment and procedures for me.

MD Anderson is incorporated in a health care neighborhood, hospital next to hospital, clinic next to clinic and facilities readily accessible to patients and their families.  Patients' and their families' needs are carefully considered as clinics, labs, imaging centers, food services, and even transportation and social services are made accessible and appropriate.  Although the building are on a large scale, it seems as if every effort has been made to consider the patient  - and patients' families -  in the focus.  The environment feels large, but the patient remains the attention point of the physicians, house staff trainees, nurses and staff who provide the important human element of care.

Not everything could be concluded during my actual presence at MD Anderson in Houston.  But I felt satisfied that major steps towards understanding the complex issues I present as a patient were made, that attention had been paid by skilled physicians and staff, and that I would receive an appropriate set of recommendations when they had discussed and considered my medical issues.  Was I  guaranteed a cure? No.  Did I feel that I received proper medical care and consideration in this early stage of my MD Anderson experience? Yes.  Based on my experience would I recommend the MD Anderson Melanoma Center? Yes.

A LOT IS GOING ON

Melanoma is not a disease that stands still, and as it moves into its more aggressive phase, planting metastases hither, thither and yon, it is essential to have opinions from a variety of experienced physicians in different medical disciplines regarding treatment options, prognosis and expectations.

So, during the last several weeks, my physicians have been collecting scans and laboratory data and tissue samples and doing those things which help shape their professional opinions as to what's next.  I have been impressed by the strong advocacy positions expressed by my physicians, not in their interests, but in mine.  E-mails, telephone calls, and messages (including consultations) from my physicians, and their staffs, have been enlightening and valuable.

Family, close friends and the communities in which I function have been outstanding in their support and realistic encouragement which makes my days more meaningful and endurable. I hope that each person suffering from an aggressive malignancy experiences the types of  personal contact which I have gained. That support and contact is not a cure, but is an essential component of helping me to live with a bad disease.

I expect to have some new experiences in new venues shortly. I will share some of that information with my readers.

QUERY: Are you wearing a hat outdoors and applying sufficient sunscreen?

HIGH PRIESTS AND PHYSICIANS

The genetic patterns, Torah documentation, and experience, going back more than 3000 years, are consistent. Our family line was charged, not only with priestly functions, but with the ethical, moral, diagnostic and therapeutic functions of physicians.  Lepers were our responsibility, and in a sense, modern-day lepers remain our responsibility.

In the DeNardo lecture series, at Santa Clara University last night, Stanford's Abraham Verghese, MD, brought this long tradition into current practice.  His emphasis on the human values of focused concentrated listening to, and observation of, patients through touch, emotional contact, and allocation of time and attention were not in conflict with our electronic age. Verghese recognized electronics, computers and many other modern technologies as adjuncts (sometimes distractive) to care, rather than as the essence of care.  Patient care requires humanity, maturity, exquisite professional knowledge and a willingness to take the risks of professional closeness.

Verghese merged the priestly and physician function required to properly care for patients, continuing the tradition which has produced great doctors, comfort and healing, and appropriateness of care and resources.  The message is old and contemporary.

GIVE AWAY A HAT AS A FOLLOWUP TO EARTH DAY

No high cost, complicated medical procedure.  Just a simple gift to a family member or friend or someone you meet on the street.  Give that person a hat, a black hat a white hat, a red hat, a nice hat or an ugly hat. But be sure it has a wide brim and protects against ultraviolet radiation which causes melanoma, a disease which will strike 70,000 Americans this years.  Don't give away your baseball cap - throw it away because it doesn't protect the sides of the face from damaging environmental UV radiation (particularly against the sun that comes in through your side car windows). Your gift can protect against a serious fatal environmental disease, has no side effects, doesn't make people fat doesn't raise the cost of health care or taxes, and will protect someone you know and may love.  I just gave a hat to a family member.  Next, I'll put a tube of sunscreen aside as a followup gift.

Do it.  And put your own hat and sunscreen on!  It's an act of love!

A COST SHIFT DOESN'T MEAN A SAVING

Today's New York Times repeats the crowing claims by Medicare of how much money it will save by reducing "waste" related to diabetic testing strips through competitive bidding.  An hour after reading the Times article I received a call from my supplier of diabetic testing strips telling me how many hundreds of dollars it would cost me, under the rules now laid out by Medicare, to fill my supply and allow me to perform the testing that keeps me from succumbing to the complications of rapidly shifting blood glucose values which mark my day in this time of my serious illness.  I have spent countless hours filling out Medicare appeals and requests for reconsideration, entreating my physician to provide data (a costly process in a medical office) but the costs I, my physicians, and the medical system incur are not acknowledged in the bureaucratic self-hyping Medicare release.  It is the little folk, the vulnerable folk, who are now bearing the cost of the "saving" which our government is so gleeful about.  It's a cost shift - not a saving!

A few months ago I wrote about the diabetic test control solution provided by a large company which was clearly defective.  The government sent me no inquiry about this potentially injurious product for which it was paying more than $10 per defective container. I received no notice that the company had self-reported its defective product distributed to diabetics. Strange disconnects 

Perhaps our government needs to pay more attention to the business of government and less to Columbian prostitutes and Las Vegas parties. And the question - when taxpayer money is involved - is whether anyone in the system is being paid a bonus or incentive, directly or or indirectly - for savings incurred by cost shifting from Medicare to our sick taxpayers?

THE DEATH TEAM
A few months ago, one of the political parties characterized participants in end-of-life discussions with patients as death teams.  In my service, for years, in various biomedical ethical roles, I never found that characterization to be accurate: the discussion among patients and physicians and nurses were always done carefully, with a full sensitivity to the needs of all concerned, and without pressure on patients and their families to take steps which would inflict harm.

But there are death teams.  They are the bureaucrats who, without having taken an oath to do no harm, sit in their cubicles administering the financial and utilization protocols their superiors have provided to them which may result in a denial of services or equipment or - ultimately - of life.  This is not an issue of the content of the Affordable Care Act: it is an issue of arrogance, contempt and a lack of humanity.

This morning I received a call from the company which has recently provided me with diabetic testing equipment. They said they were sorry, but that  government organization has placed a moratorium on the company's ability to provide diabetic testing supplies for type 2 diabetic and now strictly requires extensive paperwork from physicians and institutions to justify continuing to supply. Physicians who have had their incomes cut by Medicare are being asked to supply more time and paperwork. Patients suffer,the  costs of hospitalization, dialysis, wound treatment, neurologic disorders and other diabetic conditions suffer.  But the bureaucracy grinds on. 

This is not an issue of one party or the other.  It is an issue of governmental inadequacy, in which financial control and power have replaced common sense, medical ethics and judgment. 

I'M TOO SICK, BUT ....

Sometimes, illness becomes an additive affair. The original serious problem becomes complicated by another serious problem- or problems) which confounds doctors and patient, alike.  A difficult practice issue is whether one problem's complexities makes it difficult - or unwise - to use the potent therapeutic firepower which might ordinarily be invoked. So that's my situation.  I will see my doctor in a few days because his advice is given with integrity and competence.

In the meantime, life is made more complicated by messages from a Medicare review agency which has decided that I don't qualify for the blood sugar frequency that my doctor has prescribed through the years.I guess that the money Medicare is saved because the testing allows my doctor and me to carefully control my sugar levels, avoid hospital emergency room treatments, hospitalizations for heart attacks and strokes, loss of vision, loss of kidney function (then dialysis) and bodily  injury from auto accidents doesn't count. What does count more and more these days is a bureaucratic review system, administered by anonymous people in far off places, in which arbitrary decisions seem to be issued (appeal is allowed, but physicians who have had their Medicare reimbursement cut may be grudging participants in the bureaucratic paperwork process of their patients and hiring an attorney seems cost-ineffective).  Sick people don't have the strength or resources to fight this impenetrable system.

If you have never read Kafka's "The Trial" click for a link.  Kafka described your brave new world.