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To Have or Have Not

by on May 10, 2014

To Have or Have Not
by Marco M. Pardi

“The house of delusions is cheap to build but drafty to live in.”
A.E. Houseman (1859-1936) Lecture before the Faculties of Arts and Laws and of Science, University College, London,
3 October 1892.

“Far more crucial than what we know or do not know is what we do not want to know.” Eric Hoffer. The Passionate State of Mind. 1954

I have often mentioned starting a Death & Dying course in the early 1970’s. I will not reprise that here except to focus momentarily on one issue. In several classes I asked a question:
“If some irrefutable source could tell you when you would die, would you want to know?”

The answers were generally spread between two sparsely populated extremes, with a large amount of expressed uncertainty in the middle. True, the question itself was somewhat circumscribed by realistic conditions of the day, but it remained largely valid in stated principle. The question also calls for two steps to be taken, not one: 1. Accept the infallibility of the source; and, 2. Decide whether to receive information from this source. Note too, the question did not address how, or from what, one would die.

While this may have seemed academic, or merely driven by curiosity at the time, we have rapidly moved into an era in which such a question has become increasingly efficacious. And, with some notable exceptions, we are moving away from the all too easy dodge of, “Well, what could you do about it anyway?”

In 1983 I accepted a position with the U.S. Federal Centers for Disease Control soon after the, then, mysterious HIV (Human Immuno-deficiency Virus) had displaced the dreaded Herpes Simplex Type II as the sexual de-stimulant of the day. At first commonly thought to be a “Gay disease”, it quickly appeared in heterosexual populations, particularly minorities. Being a retro-virus, able to change its structure from person to person, the outlook for treatment appeared bleak. Also of concern was the fact that initial contraction and incubation were largely unremarkable; no distinctive signs or symptoms reliably signaled the spread of the virus.

While it is not possible to definitively document the degree to which the Evangelical community influenced federal policy toward this emerging threat, the federal response betrayed at least a sympathy toward views which spoke of “those people” and “divine retribution”. Funding for research into treatment and possible cure was grudgingly sparse; serious prevention efforts had to await the coming of the Clinton presidency – hence the little noticed name change from Centers for Disease Control to Centers for Disease Control & Prevention.

Still, States took up the fledgling federal effort at sero-prevalence studies. Public health STD clinics began offering HIV testing bracketed by pre-test and post-test counseling. Early tests were somewhat hampered by reliability, with either false positives or false negatives. The venue for the testing, STD clinics, already skewed results on the basis of high risk populations.

But the bottom line was that people were being asked if they wanted to acquire information about their status relative to what was, at the time, a basically untreatable and incurable condition which, in all likelihood would kill them along with partners they infected. To allay accusations of undue pressure in the clinic settings, patients were repeatedly assured their participation was strictly voluntary. Many took the test (and the results were stunning) and many – perhaps at the highest risk, did not. Perhaps they did not want to know. Of those who took the test, were Positive, and received in-depth post-test counseling regarding their health and the danger to others, many returned to the clinic a short while later with freshly acquired STDs indicating they had unsafe sex. They either did not understand the message or they did not care.

Testing, genetic or otherwise, has improved by orders of magnitude over the past two decades. “How’s your PSA?” (Prostate Specific Antigen) could almost be a greeting between men. Many efforts, including The Human Genome Project, have mapped, identified and parsed our deoxyribonucleic acid (DNA), our telomeres, antigens, blood chemistry and other things we did not know we had. Complicating this is the proliferation of less costly mechanisms to do so. Not long ago x-ray computed tomography (CT) machines turned up in shopping mall walk-in centers. More generally known and more easily used than positron emission tomography (PET) or single-photon emission computed tomography (SPECT), the “CT” entered the vernacular displacing CAT (computed axial tomography). The shift to this more modern neologism was apparently not accompanied by awareness of the massive amounts of radiation rendered. “Blue Light Special” took on new meaning. Shoppers at Mall A could go on to get multiple “opinions” elsewhere limited only by their knowledge of other testing venues and their wallets.

PSA, and CT scans, particularly for lung cancer have come under fire. Much of prostate cancer is slow growing, meaning the man will die of something else. It has been said that, if men only lived long enough they would all have prostate cancer. Thus, reactive treatment can be premature, and an especially bitter realization when the treatment turns out to be worse than the problem, which it often does. The digital exam is still the gold standard, like it or not.

CT scans have been especially troubling in that they light up calcium nodes that cannot be distinguished from cancer, necessitating ultimately unnecessary biopsy to be certain. And, lately it turns out that up to 30% of cancerous lung cells detected by CT are similar to prostate cancer cells; they are so slow growing as to be manageable over a very long period indeed. Oh, and by the way there is a new blood test to detect the antigen specific to lung cancer.

Sometimes it’s safe to wonder if technology is getting ahead of our wisdom in using it. When we were kids my brother and I enjoyed quite a few moments staring at our metacarpals in shoe store fluoroscopy machines. We had no idea of the nature of x-rays except that the machine allowed us to wiggle our toe bones in real time.

After several years in the “memory unit” of an assisted living facility our mother died of (clinical) Alzheimer’s. I say clinical because, in those years, without a cranial (brain) autopsy we could go only by the presentation of a syndrome of symptoms. My brother adamantly refused to allow the autopsy. Much has been learned about Alzheimer’s since then. In fact, you guessed it, there is now a promising blood test for it, as simple as a cholesterol test. Given that there are strong indicators of familial risk factors, including genetics, a close family history of the condition is considered a risk factor.

We come from a remarkably narrow family tree; more an Italian Cypress than a spreading Olive, albeit with two British grandmothers perched in the branches. To our knowledge, our mother is/was the only one diagnosed with Alzheimer’s. But, as was eventually discovered with HIV, the condition may have been around a lot longer and was either not recognized or the person carrying it died earlier of something else.

The two basic parameters against which tests are measured are: Sensitivity – does it detect what it should detect; and, Specificity – does it narrow the apparent results to that condition, reducing or eliminating misdiagnosis. Current declarations regarding the blood test for the biomarkers indicative of Alzheimer’s cite a 90% “accuracy” rate. While this does not clarify whether one parameter or both are questionable, it leaves significant room for concern. Yet, these current declarations also claim that 1 in 9 Americans 65 and older now have Alzheimer’s in some stage. So, should I have the test? And, if so, why? If not, why not?

I’m certainly not alone in pondering this question. Many neurologists favor the test because, although there is no definitive prevention and certainly no cure, it may, in their view, be delayed by scrupulous adherence to “healthy lifestyles.” No need to belabor that term here, but there is a proviso Mom did not prescribe: keep mentally and socially active. (Write blogs?) Evidence favoring healthy lifestyles based on high risk patients with no signs or symptoms is conjectural at best. But, there is evidence that patients clinically diagnosed, including those by PET scan, can somewhat retard the advance of the condition by such lifestyle adjustments. Fine, but that does not address the question of whether someone with only a single case family history should have the test.

Bioethicists, as befitting their profession, have examined that question from both sides. The affirmative side is supported by logic pointing out that early diagnosis, albeit symptom free, can enable the prospective patient to make and adhere to lifestyle changes, to explore, discuss and even plan for financial, familial, and supportive contingencies. The financial factor can be significant for many. In the 1990’s my brother and I paid $3,600.00 per month for several years for our mother to be in the “memory unit”. Not a problem for us, this would be out of reach for many. Familial considerations then enter in when financial considerations force keeping the patient at home for as long as possible. These may include early retirement (if possible) for the caregiver. And, figures vary from 6 to 8 years of lost life expectancy for in-home caregivers. Adequate foreknowledge, presumably, might mitigate some of these effects.

The negative side tends to focus on the person so diagnosed. As cited earlier, there is a 10% margin of misdiagnosis in the prototype test. A person could be delivered into a sense of doom for no reason or the truth could be missed, canceling out the affirmatives cited above. And, the sense of doom may be a motivator to an even higher level of involvement in high risk behaviors and lifestyles, even if based on an accurate diagnosis. There is no direct evidence that a person so diagnosed will say, “Gosh. I’m going to die. I better straighten up my lifestyle.” Further, bioethicists point to the realities of everyday life, such as simple distraction and forgetfulness, warning that such events might then be taken as indicators, further plunging the person into a downward spiral of self imposed doom.

Am I sitting here flipping a coin? No. I’m looking at the fact that the test will not be considered for general application until it is confirmed by other independent research teams. When it is confirmed it will be offered first to high risk persons, a category which may or may not include a single family case. And, I am heeding the advice of the bioethicists that until we have a definitive way of slowing or stopping the disease the reasons not to test exceed the reasons for testing.

I do admit, though, it’s scary.

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16 Comments
  1. Dana permalink

    Marco, this raises some interesting and important questions.

    For me, I think ignorance is bliss. There are some things I simply do not want to know, particularly if there is little, if anything, I am able to do about it.

    • Thank you, Dana. Somehow I see you as knowing (as the time draws near), even if you don’t want to. You are far too aware.

  2. When I was at the VA taking to one of the doctors about my medical condition; I had to tell her that I wanted to know everything about my state of health, no matter now dire. It is not that I am in dire straights now, but I can read the writing on the wall, some of what I have is going to affect me in a few years, and may shorten my life below the mid-eighties that males in my family tend to live to. I do better knowing, if nothing can be done about it, I worry less, don’t have to figure it out.

    Marco, you did bring up a good point about how short sighted we can be about our health. Or how we can endanger others, because of that short sightedness. I have known people who should not drive because of their condition, yet they do, not considering that others are also part of their problem, if they and their family are in an oncoming car when something happens.

    I noticed that I have hit an age spurt. For instance my weight has jumped quite a bit, so I am trying to deal with that. My lungs, liver are changing. Even though I don’t smoke nor drink nor take drugs, I have lung problems and a bum liver, though I doubt it will kill me. I have the lungs of an 83 year old, not that bad actually because I don’t smoke.

    Do I want to know the day of my death? Since it is impossible to know, for me that is not a variable question, however I would like to have three months to prepare for my death. I for some reason don’t want to just go, but to experience it…..I know that sounds strange, but that is the way I am. Even if did not believe in any kind of existence after death, I believe I would still be the same, I would want to know and prepare, and to be conscious if possible when death comes. Though that is not likely of course, I have been with too many people who have died to think that is even probable.

    After a certain age, death stares us in the face, it is the as you would say, the 800 pound elephant in the room that needs to be addressed, but many won’t until backed into a corner…..perhaps that is a good thing for most. I do know that there is a good chance, that one day I will walk into the doctors office and he will tell me that I actually have 3 months to live, more or less….it will take time to adjust to that. to move into the no mans land between life and death. I am sure the view is different, knowing that in a few weeks one’s life will cease.

    As for the test that can say that I ‘might’ get a disease because of my DNA, not sure that is helpful. I know some people whose whole life is about that, constantly watching what they eat, taking mounds of herbs and other pills, and over all, being very fearful and afraid to enjoy the life that they have. Of course I am speaking as an aging male, if young I might think differently about it.

    when young, I had an intuition not to smoke, take drugs or drink. Our family doctor told me that was a wise choice, for I would have been dead by now if I had. My mother, her siseter and died of lung disease, now my oldest brother has it. They all smoked.

  3. Mark, Your news is disturbing. I’m uncomfortable with the idea of my “younger brother” dying, particularly because you have been so good and I – well, not so good. Life has been strange, the decisions we made that we now look back on and don’t know whether to take credit for or be thankful they were somehow made for us. When I describe you as one of the very few people I know who would be able to fully and consciously transition into death in a fully understanding way I am not referring to your faith, but to the lifetime you have lived in a courageous quest for ultimate understanding. I know you would describe yourself as a man of faith. But, while that is certainly true, you are many, many fathoms deeper than men standing next to you making the same claim.

    Neither of us knows our reach. But it’s hard to imagine my world without you. Marco

    • Sorry Marco, I doubt I am near death, it is more a chronic condition than anything else. Though I have no doubt it will shortened my life a bit. I am truly honored that a man of your caliber and intelligence considers me a friend….thank you my friend.

      Peace
      mark

  4. I would definitely like to be conscious when passing through to my other life, yet at the same time, i would rather die quickly 🙂 contradiction ?? maybe so.
    The fact is that it is the pain process involved in a slow death that scares me more than death itself.
    So how am i going to stay conscious in an instantaneous death ???
    Well, that is the question ….that is `MY` big question !
    Will let you know from the Other Side if i ever succeed ! 🙂

    • Thank you, FOAL. As you know, I also idealize a fully conscious and aware dying process. Yes, possible pain is an issue, particularly if suppression of that pain would entail impairment of sensibility. For me, decades of chronic and often severe pain lessen my fear of possible pain in the dying process. For you, there is hope in the current advances in pain management that mean you will likely not have to choose between cognitive impairment for comfort and a fully conscious and appreciative participation in what, in the view of many, will be the most meaningful and fulfilling moments of life – when we finally get to put it all together. After all this studying, I sure don’t want to miss the Final. Marco

  5. diannejoydiamond permalink

    Yesterday I typed a full commentary on this blog, my favorite of the Marco blogs yet. But for some reason, the internet decided I must have needed more time to think over these questions (a matter of life and death as it were) because that comment never appeared. And in the 24 hour interim, I may have changed my answer. At first I replied that I would like to know (if answer were actually irrefutable) just when I were going to die. Perhaps that is influenced by the way a dear friend of mine passed away this December. He knew almost to the day when he was going to die, that there was no cure for his condition. He proceeded to live his life as fully as possible, writing poems and emailing for political activism almost to the day he died. He was a follower of Buddhism, and he wanted to die mindfully, and yet he continued to live as fully as possible until the hour was upon him. And perhaps he appreciated every day because he knew it was almost his last. But now, after re-reading your blog, perhaps I wouldn’t care to know. Perhaps I can live fully even without that knowledge. But I would like time to say goodbye to all those whom I have loved, and to put my material “house” in order while opening to the wider opening of spirituality and transcendence.

  6. It’s been more than twenty years since I saw a doctor; my reason being that if they don’t tell me I’m sick, then I’m not sick. Despite my overall good health, this has been denial at its finest. My life will end in the time and manner for which it is destined, whether or not I know of it in advance. That being said, I believe I would like to know far enough beforehand to make the best of my final days.

    When my brother Billy knew with certainty that he was dying of cancer, he set out to make the best of what was left of his life. He spent time with those he loved most, building memories which would live beyond him. He spent his money buying gifts for those he would leave behind. He was not afraid. He did what needed done and said what needed said, and I believe him fortunate to have been aware of his imminent mortality, because it gave us all the chance to say goodbye.

    So, curable or not, I want to know if something has the potential to take my life. If it can be fixed, then fix it. If not, I want every moment possible in which to set my life straight; to make sure that all those who have brought joy into my life are made aware of how much better that life was because of their presence in it.

  7. Thanks, Rose. Your comments make me want to start now. I agree. I would like enough warning to accomplish what you suggest.

  8. My experience has been those people I know older than me do not wish to know if they have a terminal illness. The people younger will seek out the diagnosis. My mother was diagnosed with cancer. She gave her doctor orders he was not to tell her if it was terminal. Visiting a specialist it was clear he was coming in to discuss her cancer was. She jumped up, covered her ears and ran out of the office humming loudly. It was never discussed. A friend of mine just found he has cancer and probably has less than two weeks to live. He didn’t have a clue. He said he was happy to know and has some time to make plans. His great aunt is furious the doctors told him. And I have a brother-in-law, much older who clearly has something very wrong. He refuses to go to a doctor because he knows it is going to be bad news. So instead he sits home in tremendous pain. It is definitely an interesting area of study. Thank you Marco for another thought provoking article.

    • Wow, Mary. Almost enough for a comparative psychiatric study – lower numbers are used in those. It certainly calls the question of why there would be such a marked disparity. Some people say they enjoy life more as they age, but there seems to be something more going on here. Thank you.

  9. pouryabakhtiyar503 permalink

    I have almost always been your student that, when the topic has arisen, thought I would much rather know. For the sake of my family mostly, but also for the sake of precautions. Also, I would always find it humorous to see the indecisive ones walk out of the classroom afterward in deep thought. Although I change my mind quite frequently as well on the matter so I’m not much one to talk lol.

    • Thanks, Pourya. Observing “the wheels turning” during class discussions and topics I can well appreciate your analysis of your own reactions and those of others. You often seemed on the verge of speaking, but you held back and took in more information instead. Too bad we likely won’t have more opportunities like those, but I’m so glad of your input here. Marco

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