Boreal B[l]og

I just know the man was younger than I.

And early last summer, he was healthy, or at least so he thought.

Today, I read his obituary in the paper.  He had been diagnosed with “brain cancer” (a glioblastoma, likely) six months earlier.

It gave me a moderate jolt.  These sorts of things do.

There is death, and there is death.  For those who are demented, death is a release for them and their families.  It is sad, but it is a release.  Society often doesn’t allow us to say that, but many of us think it.  When my mother-in-law died at 94, one niece cried for hours.  My wife and I just said, “It’s finally over.”  My mother-in-law had been widowed twenty years earlier, was never the same, moved out of her house to assisted living 8 years later, had become slowly demented and had been ready for death for years.

I have seen too many who did everything they could to forestall death, when it was not only going to be the outcome, it needed to be the outcome.  I wasn’t popular, but I had the respect of nurses who dealt with these issues first hand.  When I practiced, I once had eight dying patients simultaneously in an ICU.  I had to deal with eight families, each of whom had members who were dealing with a family death for the first time.  I don’t remember what I got paid for it; suffice it to say that my total bills for the entire 8 were less than an average inpatient surgery at the time.  Surgery takes skill; dealing with death?  Well, that is another story.  That’s just talking to patients or families, not taking a knife and curing them.  Talk is cheap, and talking about death isn’t paid for at all.  Remember Death Panels?  That was just paying for the discussion with people about how they wanted to die.  You’d think from the uproar that elderly people had never thought about the concept before.  I submit talking about death is far more important ultimately than a good deal of procedures Medicare does pay for.  Perhaps if it were reimbursed better, the discussions would be better, but I am out of date.

Here in Oregon, people who are competent and terminal can choose the time of their death, not passing, for passing is a euphemism that makes us think that the non-existence of a former sentient being is something other than non-existence.  About seventy-five people choose that option here every year, not many.  These individuals know full well what they are doing.  They know they are dying soon, and they don’t wish to go through the indignity, often painful, to reach the end result—death.  Some use “assisted suicide” to describe this law, but suicide has a different connotation in our language, and “planned death” is a better term.  The individual is dying soon from a disease, not a medication, and they don’t wish to go through the whole disease process to the bitter end.  There are strict controls, and people die when they are ready, having had for some time the knowledge that they could choose or not to choose to use the drugs that would allow them to die.  A third never use the drugs.

A death from a bad disease in a younger person is a particularly bad tragedy, even if it is were not preventable.  It is a message to those of us who hear about it to be sure we are doing what we want with our lives.  It is a message to end estrangements, if possible, to fight only those battles that are meaningful, to leave behind something good, to live and to be able to say to yourself or even aloud, “I am alive!!!!”

I don’t live in a perpetual state of angst about death, but I find myself discussing events in the next 1-2 decades with the caveat, “If I am still around.”  Mind you, accidents, which can occur at any age, can cause sudden, unexpected deaths.  In one’s 60s, however, there are a lot more things that can kill.  Pneumonia is suddenly not just a minor inconvenience; it is life-threatening.  One nurse told me a two years ago that a cardio-thoracic surgeon we both knew developed leukemia at age 60 and was dead 6 weeks later.  I probably had my mouth open for a couple of minutes.  Suddenly, the problems of the world don’t seem so pressing.  Indeed, Oliver Sacks, who recently admitted he has cancer metastatic to the liver, has stated just that.  He no longer watches the news.  I can’t say I blame him.  I don’t watch it much, either.  I try to deal with the things I can control, not worrying about the many over which I can’t control.  I wish I could stop worrying about the weather and climate change.  I can’t change it, but it still hurts to see it happening.

That means I support the Humane Society, but I turn off commercials and don’t look at posts that show animal abuse.  I simply do not have the time, resources or energy to deal with every needy individual in the world.  Further, the sheer volume of these requests overwhelms me and shuts me down.  I feel like a failure that I can’t fix the world. I am not going to try, and if that makes me a bad person, so be it.  I try to choose my battles, decide where my money, time, effort should go, and am glad I am in a position to do all of these.  I have my own list of things to do; another list, much shorter, are those few things I have done in life that I believe have defined me as a person who existed and which have mattered the most.  The first list is written down, not ordered.  I discuss it should people ask and make it a point to do the things on it when I can.  The second is far more private, and it is very much ordered.  I am deeply clear what those items are.  Others may have seen me as a different person, but this list describes how I see myself.

I don’t know how much time I have.  I just know that every year needs to count for something, and something on one of those two lists needs to be part of every year.

A friend of mine in another state told us his mother died about a month ago.  I met his mother once, and found her a lovely, friendly person.  But we all get old, and her old age was complicated by strokes and gradual deterioration.  For those who say age is just a number, it can be a crappy number.  She was a widow, too.  A great majority women over 85 are unmarried; half of men.  Just a number?  No, real numbers.  Sad facts.

When she went to hospice, after another stroke, she developed disordered breathing, hyperventilation, which could have been due to the stroke or early pneumonia.  To me, it really didn’t matter, because once a person is in hospice, they are to be kept comfortable until they die.  That may require morphine.  Yes, morphine, addicting morphine that slows down breathing, suppresses coughing, and might actually hasten death.

Can’t have that, say some.

Admittedly, the feds have a schizophrenic approach to pain management, because the medical profession failed to manage pain adequately at both ends of the spectrum.  We gave too much pain medicine to the wrong people for whom it was not helpful and addicting, and we under-treated others, who needed more analgesia than they received.  It is entirely possible one day to be in a hospital, where smileys for amount of pain are measured, and 1 smiley is good.  A day later, one may be out of the hospital and pain medication strictly controlled so he doesn’t become a medication abuser. I may exaggerate, but not much.

Pain or agitation control, when a person is dying, should be easy.  You give whatever it takes to control it.  This lady, mother, grandmother, wife, was dying.  Her life was ending.  She, like my late mother-in-law, lived far too long.  Yes, that happens to many people.  Hey, it’s just a number, right?  Life is sooooo precious, until when one is ready to die and won’t.  Sort of like Dustin Hoffman in “Little Big Man.”  But this is real.

Or won’t be allowed to, naturally.  We say that not treating a pneumonia is “playing God,” but we resuscitate people who don’t want to be resuscitated.  I’m not a believer, but if I were, I would say that is much closer to “playing God.”  The Bible and the Qu’ran don’t say 300 joules to shock the heart, when a person with dementia suddenly has a heart arrhythmia.  My friend’s mother would have liked to have lived a long, healthy life, but the second adjective was not to be.  She was ready to die.  She had nothing left to live for.

I hope I am that brave, should I reach that situation.

I hope I don’t end up in a hospice where morphine is “metered out,” in small amounts, because someone fears they might be accused of killing somebody, by making them comfortable in their final hours, even if the final hours were shortened.  If that is wrong, then the world is wrong. Fear of the patient’s dying as a result is NOT a contraindication to give morphine.  Addicted?  The person is going to die, not seek drugs.  They are going to cease to exist.  It is the way of the world.  The verb is “to die”; the noun is “death.”  Use them, not euphemisms.

A sick person in hospice should never, and I repeat never, be denied medication to keep them comfortable.  If hospice workers do not agree, they should work elsewhere. Sadly, this is too often the case in America today.  Ask Barbara Mancini, who was prosecuted for having handed her father morphine, when it wasn’t even clear he was suicidal.  Because that particular hospice was a place where “death is an option in America” occurred, her father suffered hospitalization for four more days before he died.  He didn’t even need to go to the hospital.  Naloxone reverses morphine.  Indeed, I used it in the Navy in the Gulf of Thailand once, and it was the only clear life I ever saved. Ms. Mancini was arrested in the hospice and put through hell for a year and $100,000 by a prosecutor who may be in Congress, now.  The judge who threw the case out of court wrote a scathing 42 page report, if I remember correctly.

Fortunately, the medical profession is beginning to come around more and more to the idea that sometimes we need to allow patients to die.  We need to do whatever necessary to keep people comfortable, even if it means shortening their life.  And in five states, the patient who fulfills certain conditions can choose to shorten his or her final hours, because the end result is the same.

Let’s be clear about semantics, here.  This is not assisted suicide, Dr. Gawande.  Your book was well-written, except for the short shrift and the wrong term you gave to Death With Dignity.  This is an individual who is dying, soon, and does not wish to prolong the process.  This is a individual who is aware what is happening and chooses not to continue.  It is not assisted suicide. The disease is killing the person; they want to live.  But they want to shorten the agony of their final hours.

We can argue as to whether palliative care or hospice can deal with these conditions rather than a Death With Dignity Act.  Maybe they can, but in far too many places in this country, they are not.  That is a fact.  It may be religion, misguided, or financial.  I personally don’t think palliative care can deal with the conscious person with pancreatic cancer, sees the end in sight, and doesn’t want to live it out. I hope I don’t have to find out personally.  In my home state of Oregon and four other states, I don’t have to.

Any hospice that fails to give an elderly woman morphine, because her family members are upset by her breathing, should be closed down.  The lady is beyond knowing, but her family is left with a bitterness that will never heal.  I am both angry and astonished that addiction or “mustn’t give too much morphine to a patient” still exists in the 21st century, when somebody is dying.

It’s nice that Dr. Gawande and others are finally aware at the state of dying in America today.  Welcome aboard the train.  I boarded it 40 years ago in on the third floor of Presbyterian Hospital in Denver. I’ve been riding it ever since.  I’ve known when to quit, and I know how to do it.  I count things, and I think it’s high time we counted the number of people who die at home, the per cent who have living wills, the number whose living wills are violated, the per cent who used hospice, and how long before death they used it, and the number of “Schöner Tod” (beautiful death, a German term).  Everybody dies; on the death certificate there should to be a place for “Living will used,” “hospice,” “hospice at the appropriate time,” and since we are so in love with smiley faces for pain scales, whether the pain scale the last week of life was 1.  Dichotomous question.  Easy.

I wrote about it a decade before you, Dr. Gawande.  Did it in fewer words.  Here’s the link.  It’s in a reputable medical journal.  Welcome aboard.

I’ve been waiting.

My wife read a CT Scan of the heart, done to look for coronary artery calcification, and told the referring physician the patient had breast cancer.

Whoa!  What does that have to do with heart disease?  The answer is nothing, and that is my point: we need radiologists to read films formally, not clinicians, and I say that as a former neurologist who read CT head scans well.  A medical group may own an X-Ray facility and clinicians may read the images.  But every image must have a formal reading by a radiologist, an unbiased individual trained to look at everything on the image, every corner, every part.  There is no law in nature that says a person will have only one disease process.  It is entirely possible for a neurologist to look at an MRI of the spine and miss a large abdominal aortic aneurysm.  We see what we expect to see.  Seeing isn’t believing.  Believing is seeing.  We believe something, and we tend to look for it.  We also are pattern recognizers, often useful, but leads us astray when some see Jesus on a pizza or the “The Face on Mars.”

A CT scan of the Chest has a side view.  This isn’t a mammogram, but it certainly is capable of showing a breast cancer.  In addition to the breast cancer, there was a “ground glass” area in the lung suggesting there might be an early lung cancer, too.  Wow.  A CT scan of the heart is done for coronary disease, and two primary cancers are discovered.  Maybe the cardiologist would have found those, but I doubt it.  I doubt when I read CT scans of the head that I would have found a throat cancer, even though the throat was scanned and on the film.

In my defense, I was once asked by a cardiologist to see a man who had presented with a brief spell of unconsciousness, or syncope. Neurologists are frequently consulted for syncope, and it is usually due to a non-neurological problem.  The man had recently driven 1500 miles (2500 km) from Minnesota to Arizona. I examined him, noting his breathing was faster than normal. His neurological examination was unremarkable. I obtained an arterial blood gas, since we didn’t have pulse oximetry back then, and found pronounced hypoxia.  Thinking a cardiac arrhythmia might cause unconsciousness (strokes seldom do), thinking a pulmonary embolus could cause both an arrhythmia and hypoxia, I obtained a lung scan, since that was once the “gold standard” test. The man indeed had pulmonary emboli, likely because of venous clots in the legs occurring during prolonged sitting on his long drive.

It seems trite to talk about the “good old days,” when they were not always so good.  We didn’t have the technology we have today.  On the other hand, I think our physical diagnosis—history and physical exam—was a lot better than today.  We didn’t have scribes writing down findings and ordering a plethora of tests, many of which require a lot of radiation.  More than once, my wife has told me of head CT scans or MRIs with a specific lesion.  When I asked her what the history was, she usually answered:  “It was part of a complete body work up.”

That approach makes modern medicine foreign to me.  I ordered tests I thought I needed, and if I weren’t clear in what order I should order them, I called the radiologist.  I always wrote much information about the patient on the requesting slip, back when we used paper and still knew how to write, because a radiologist could give me a better reading when they knew the area of the brain or spine in which I was interested.  When I could, and I usually made sure I could, I would look at the films with the radiologist, when we still had films, so I could see for myself and learn more about reading images.  It made the radiologist better and feel more useful; I believe it made me a better neurologist.

So, when the MRI of my neck, done because of a concern about a pinched nerve, was unchanged from 9 years earlier, that was good news. I was chagrined, however, when the radiologist told me that I had a two thyroid nodules that were missed by even the radiologist back then.  It never occurred to me look for thyroid disease on my neck MRI.  It is sort of like people’s being surprised when I tell them the Moon is visible in broad daylight.  “It is?” they say.

“It’s there, isn’t it?”  I reply.  The thyroid nodules were definitely there.  Once I looked, there they were, quite obvious, like the first quarter Moon in the southeastern sky in the afternoon.  Try finding the Moon in daylight, if you haven’t ever noticed it.  The Moon is above the horizon half the time, and other than 2 days on either side of new, it is visible, day or night. You will discover a whole new world—literally, and wonder why you never noticed it before.  That’s the problem.  We notice only what we are willing to notice.  If we learn to notice many things, it opens a door to a new world.

Sometimes, we notice a thyroid nodule.  Sometimes, we don’t.  I was lucky; the nodule was benign.  Had it not been, my thyroid cancer’s discovery would have been much later than it should have been.

Sometimes, life itself lasts longer when people notice things.