Sorry I missed my Friday deadline.  As you know, Fridays are now dedicated to the healthcare reform debate instead of a Weekly Cancer News Round-up.  Once we get something passed, we’ll return to the original schedule. But I feel strongly that the stakes, especially for those of us with serious illnesses, are way too high.  The subject cannot be ignored.  It will not just fade away.

The national dialogue continues to be quite active in my Midwest neighborhood. Two of my neighbors are traveling to Washngton in separate groups to protest the reform.  At the same time another neighbor told me that she and her husband, both self-employed, have decided to drop their insurance coverage since the monthly premium rose to $1700.  He is a property manager and commerical real estate agent.  She does daycare in her home.  Both are close to my age, approaching sixty.  Although both are healthy, both of their risk factors for illness increase with age.  But then again spending over $20,000 per year for health insurance is a pretty significant burden.

Last week Tish and I were at a garage sale in a fashionable upper middle class neighborhood.  We bought a number of children’s items from a woman in her fifties.  She also had done daycare in her home until serious degenerative spinal disease and chronic pain caused her to close her business.  Her husband had died of cancer four years previously.  Among the garage sale items were porch ramps, a wheelchair and several varieties of crutches.  Her two-story brick home had five bedrooms and two baths and was worth in the $375,000 range – a sizable sum in our locale.  She had stopped seeing her medical specialist because she owed him money.  And her home was ready to go into foreclosure.  Hence her series of garage sales each weekend.

Another young man we know, 23-year old, works full time but has some chronic issues with diabetes.  He was crashing into ketoacidosis several times a year.  Each time required a trip to the emergency room for hydration and stabilization of his glucose.  His home almost went into foreclosure due to mounting medical bills.  This despite the fact that he had insurance through his small business employer.  The hospital’s diabetes specialist ordered a ct-scan in an effort to discover why he was having these potentially life-threatening episodes.  His insurance company refused to pay, saying it was not pre-approved.  Yet another bill to pay.

These and other stories lately, stories that I just happen upon in casual conversations with neighbors and shopping at garage sales, really reinforce in me the belief that our healthcare system is in need of urgent reform.  What I am witnessing is in Middle America not in slums or rundown neighborhoods.  I like to exchange ideas and opinions with people like my neighbors who have opposing views.  This is healthy.  This is what a democracy is all about.

But it seems as if the national debate has been hijacked by a national hysteria, at least in some quarters.  It seems like the subject of healthcare reform has been rolled into some larger view that the country is under threat of super conspiratorial forces.  Parents did not want their children to listen to President Obama’s speech encouraging young people to work hard, stay in school, and have belief in themselves.  They feared that this might be the start of political indoctrination leading to Nazi-like youth camps.  People still rant that the president is not a citizen, that he somehow hoodwinked 300 million people and our 230 year old system of democracy.  He is accused a being a secret Muslim or Communist or Fascist, without even realizing that these are  mutually exclusive belief systems.  Views on death panels and national euthanasia programs persist.  Some gun enthusiasts believe that there is a secret plan to forcibly seize all weapons in midnight raids around America.

I might think that this is all laughably sad if it were not distracting so much from changes that are critical to our healthcare system.  If left untouched, the crisis will widen and the health of our people, of our children will decline.  America is better than that.

Shamelessly offered for sale - anybody interested?

The debate rages on. President Obama is scheduled to address the nation and both Houses of Congress next Wednesday evening. Debate continues among neighbors on my street. Earlier this week Tish and I listened to speakers at a rally at the local university. There was an article in this week’s edition of Newsweek (September 7) offering detailed explanations of the five biggest misconceptions about healthcare reform.  These are “You’ll have no choice in what health benefits you receive;”  “No chemo for older patients;”  “Illegal immigrants will get free health insurance;” “Death panels will decide who lives:”  and “The government will set doctors’ wages.” Note that NONE of these assertions are true.

Unfortunately nearly all of the debate concerns not how healthcare is actually delivered.  Instead most of the debate centers on issues related to how healthcare is to be paid for – a single payer system, private insurance by for-(mega)-profits, competition between government and non-government plans, or any number of sometimes odd mixtures of private insurance, public insurance, and proposed co-operatives.  How our care gets paid for is truly important for it has many implications about who is eligible, who gets left behind, what conditions and treatments are covered, how many citizens go bankrupt due to medical bills, as well as the general health of the citizenry, an issue with national security implications.

But in all this we hear little about reform relating to how care will be delivered, how costs (heading for 22% of GDP) can be better managed, and how we might improve the country’s general health.  As noted last week among industrialized nations, the U.S. spends more than any other nation, have the shortest life expectancy, the highest infant mortality rate, the highest obesity rate, and rising incidence of some cancers, diabetes, and heart disease in women.

Typical readers of this blog have all had experiences like long waits in the emergency room, waits getting admitted to the floor, answering the same innumerable questions each time we visit a doctor or hospital and sometimes several times to several individuals during a single visit.  We have gone to specialists who order tests that we know we have already had performed.  In hospitals we have to guard against being given the wrong medicine or the wrong dose.  We have had to wait to have our call lights answered because of overworked staff.

There is a nursing shortage that will get worse as we baby boomers continue to age.  Something that I  noticed when I practiced nursing – a significant number of experienced nurses traded their nursing uniforms and long, difficult hours at the bedside for a chance to wear nice street clothes, work nine-to-five, no weekends and predictable lunch breaks working for insurance companies, reviewing charts and pressuring physicians to discharge patients.  There are a lot of insurance companies and each needs its own “utilization review” nurses.  That’s a lot of nurses not contributing to people’s health but rather, by extension, contributing to insurance company profits.

In the dentist office last week I came across a March issue of Time magazine whose cover featured an article “So You Think You’re Insured – Think Again”.  A Time staffer wrote about her brother’s medical problems.  He had a $2500 deductible so he avoided going to see a doctor for months for mild but unusual symptoms.  After his primary care physician was unable to discover the cause, the man again put off going to see a high-priced specialist.  He was in medical debt $14,000 before he even had a diagnosis.  Then his insurance company, to whom he faithfully paid monthly premiums, decided that his life-threatening condition wasn’t covered.  The author cited a 2005 Harvard study of more than 1700 bankruptcies.  Researchers found that medical problems were behind half of them – and three-quarters of those bankrupt people actually had health insurance.  As Elizabeth Warren, a Harvard Law professor who helped conduct the study, wrote in the Washington Post, “Nobody’s safe … A comfortable middle-class lifestyle? Good education? Decent job? No safeguards there. Most of the medically bankrupt were middle-class homeowners who had been to college and had responsible jobs — until illness struck.”

I have had two bouts of leukemia, a bone marrow transplant, and a variety of treatment related health problems over the past four years.  I am now in fair health and am even starting to believe I may be cured of this hellish disease.  I have something new to worry about.  As I continue to live and to age, if I do become ill again with the same or even a different disease, could be coverage be capped off.  It is hard to say how much has been spent on my health in the past seven years.  My bill for the drug that saved my life, Campath, alone approaches $200,000.  All those weeks in hospital, all those transfusions, CT scans, biopsies, and hundreds of blood tests probably puts my total on the near side of a million dollars.  How much is a life worth?  I don’t know.  But all that was worth it to me, worth it to Tish, and to my children and grandchildren.

Some balk at the estimated $600 to $900 billion dollars.  Why was there not the same level of complaint at the $1 trillion we have spent on fighting in Iraq?  Why is there always money for wars and never enough for healthcare or education?

As I said last week, I have a more global view of healthcare system.  I have seen the good, the bad, and the excellent in a score of countries.  And again, I don’t pretend to have the answers.  No single person does.  The issues surrounding the delivery of quality care to 300 million Americans are enormously complex, nearly as complex as the human body of which we have just a partial and imperfect understanding.

If doesn’t take a genius to see that we have major problems with our current healthcare system.  But not having all the answers is no excuse not to actively participate in this debate, to study the issues and proposals with critical and inquisitive minds, to write to our Senators and Congressmen, and to demand the best plan that they can devise, that gives the best outcomes to the greatest number of citizens at a cost our country can afford.

cancer

Today is my second birthday this month. Good news and bad news – I am sixty-two years old. Bad news because I really don’t want to be this old. Good news because I really am glad to make it this far. I didn’t think I would live to see 60, or 58, or even 55. So every birthday – since diagnosis with a disease typically described as “aggressive and invariably fatal” – every new birthday is a blessing. This is something that everyone in this virtual audience can relate too. My other birthday was a few weeks ago as you may recall. The fifth anniversary of my rebirth, my transplant day. How lucky can you get!

The family had a birthday dinner for me tonight. Before I blew out the candles, I made a wish. In truth it was for a 2006 sapphire blue Jaguar S-Type sedan with beige leather interior and burled walnut trim. But a car does not make for a good post, especially since Friday is now political opinion day. This day is reserved for weightier matters than a new car.

So to make this theme work my next wish would be for effective, affordable, equitable national healthcare reform. Last week inAdvance Directives vs Death Squads, I tried to deal with misperceptions involving euthanasia.  This week, with some help from author T.R. Reid,  I thought I might try to clear up some misinformation about healthcare in other nations, especially industrialized countries.  I am not an expert here.  On the other hand I have traveled extensively in my professional capacity as a nursing educator.  I have been to both developed countries and developing countries.  I have visited hospitals  in Great Britain,  Austria, France, Panama, Guatemala, Honduras, Israel, Cyprus, Jordan, United Arab Emirates, India, Norway and Switzerland.  I have met with and worked with oncologists and nurses  from even more countries.  I have attended and organized international conferences on cancer.  These stories could make a series of interesting posts  but such is not my aim today.

Wishing for Reform

It is just to suggest that I have had wider experience and perspective than many in this national debate.  There is much to like about our present healthcare system – at least to the extent one has access to it.  It is by far not the worst I have seen, but it is not the best either.  I have been to a cancer center in Bangelore in India, the Kidwai Cancer Institute, that, while a little shabby in appearance, offered a wider variety of services to cancer patients than is typically seen here at hospitals here in the US.  The same is true of Tata Memorial in Mumbai.  I am not a citizen of the U.K. but I was able to secure an hour long consultation with one of the world’s authorities on my rare disease (T-PLL).  And I was not charged a cent (or pence).

The point is that there are a lot of models of healthcare delivery out there.  Not all are single payer models, in fact, single payer systems are a minority.  Many countries have systems based on private insurance, or a combination of the two.  Our own healthcare system costs more per capita than any other nation.  This might be justified somehow if we excelled in most other measures.  Most of the time the US does not rank in the top 5, top ten, or even top twenty when it comes to indicators of the actual health of its citizens.  We rank worst of all the industrialized nations in infant mortality. But again I am not an expert.  So for the remainder of this post I would like to look to T.R. Reid, a noted columnist and author, who has researched this area extensively.  The following article appeared in last Sunday’s Washington Post.

5 Myths About Health Care Around the World

As Americans search for the cure to what ails our health-care system, we’ve overlooked an invaluable source of ideas and solutions: the rest of the world. All the other industrialized democracies have faced problems like ours, yet they’ve found ways to cover everybody — and still spend far less than we do.

cancer

Searching for Answers

Something that I have thought about, and I suspect that many of you have also, is what happens if my cancer should relapse, for me getting leukemia for the third time.  Each time a cancer returns the statistical chances of beating it are reduced.  This happens for a variety of reasons.  My body will be older.  My body and immune system will have been weakened by chemotherapy, radiation, multiple other drugs, and by the disease process itself.  The cancer cells that return (in fact they have never left but remain sequestered in some hidden part of my body) tend to return in strength.  These cells are the strongest, the most adaptable, the most resistant because they have survived all previous attempts to eradicate them.  It’s survival of the fittest at its worst.

This is not to say that I cannot prevail once more.  But it does mean that this battle will be harder than the others.  On the positive side, by now perhaps a new and more effective treatment may have been developed.  Or not.  But what if I do not prevail?  What if the tide begins to turn against me?  What if we reach a point where we have tried all the fighting strategies available?  If I come to the point where nothing is working and the cancer is winning, what do I want my family and healthcare team to do?

Do I want to be admitted to an intensive care unit?  Do I want to be connected to a ventilator?  Do I want to receive transfusion after transfusion?  If I stop breathing,  do I want a team of doctors, nurses, and technicians to rush into my room, start CPR, use a pair of defibrillator paddles to shock my heart into some kind of rhythm again?

Another option at this point might be to remain at home.  I could be with my family, lie in my own bed with my dog at my feet, look out my window at those familiar green trees.  We could set it up so that nurses, chaplains, social workers would regularly show up to assist my wife and family through these last stages.  If I were in pain, I would receive medication.  If I had difficulty breathing, I could be administered oxygen.  If I developed an infection, I could receive antibiotics.  This is what we call hospice.

So there are at least two options.  But the most important point is that I will have decided which option to take.  I will have made that choice ahead of time, made the choice when I was not in terrible pain, when I was not gasping for breath or was no longer able to think clearly.  I will have made my own decision.  My family would be be left with the very difficult decision of what to do next, of trying to guess what I would have wanted them to do.  This is what “advanced directives” or “living wills” are all about.

I have been there.  I have been in both capacities – as someone diagnosed with a terminal cancer, and as a nurse having to carry out those last wishes, whatever they were.  I have worked both in the ICU and in oncology.  Believe me, this is another area in which cancer can be a blessing.  The cancer diagnosis brings us closer to our mortality.  We all have taken pause to consider the possibility, at least, that we may not survive this.  While working in the ICU many years ago, I stood on the sidelines while families agonized over this decision, especially when the patient was taken early and unexpectedly by a major stroke, heart attack, and serious trauma.  For cancer patients our future seems foreshortened and we have confronted the possibilities.

I think we all have a responsibility almost to confront the possibility of losing our battle against the “beast”.  We need to spare our loved ones this potential added suffering.  We need to consider all possibilities.  We need to make our own decision, need to give direction to our oncologists and the healthcare team.

This is just my opinion.  But again I am a survivor and a nurse with twenty years of experiences.  I have been witness to more deaths than most people.  I have seen good deaths and bad deaths.  And my wish for everyone would be a “good death”.

The reason I am thinking and writing about this today is the continued hysteria and misrepresentation I hear related to the healthcare reform debate.  I suppose that I thought after countless clarifications in the media about this particular issue, the debate would shift back to more reasonable aspects of the national discussion.  But just yesterday I saw one young woman at a town hall meeting asking about what she perceived as “Nazi elements” in the reform bill.  Worries about the prospect of euthanasia if the government has any role in healthcare (as if the government did not already administer Medicare and the Veterans Administraion) seem to have developed a life of their own.  And Sarah Palin fans the flames of this hysteria with the talk of “death panels”.  What “death panels”?

The fact behind these fictions is merely a provision on one of the three bills that, if you wanted to make a separate appointment with your physician or oncologist to discuss advanced directives or a living will, then Medicare would pay for it. This is just a discussion between you and the doctor of your choice so that you can make the decision which is right for you and your circumstances.  You can change or alter your decision at any time.  There is no conspiracy here, no Nazi-style extermination plan, no death camps, no death panels, no one knocking at your door.

These end-of-life issues are personal, intimate, and, at times, painful.  It is a disservice to all of us with cancer to have these issues needlessly misrepresented in order to serve questionable political agendas.  The saving grace of the controversy is that it does offer us an opportunity to educate ourselves about these critical questions.  Hopefully in doing so we will discover some measure of peace.

cancer