This isn’t nice … it isn’t “fair” … but it’s true … and it’s important …

According to an article from Kaiser Health News on the CNN web site today, “People with advanced cancer don’t know enough about their disease to make informed decisions about treatment or how they want to spend their remaining time.” This is not any sort of “new discovery”. However, it is something we commonly choose to avoid thinking about or dealing with.

We aren’t going to repeat all the information in this article. Rather, we encourage our readers to have a close look at this article for themselves. It contains information and facts that we all need to understand and be aware of.

Only a small percentage of all the men who get prostate cancer actually die from this disease, but all men who get diagnosed with prostate cancer live, for at least a short period of time, with the fear that it may kill them, and if they “don’t know enough about their disease to make informed decisions about treatment or how they want to spend their remaining time”, then they are going to let themselves and the people around them down, and they and their loved ones may not be able to deal very well with the consequences.

From our point of view what this emphasizes is the general failure or perhaps unwillingness of modern American society to deal with the realities of sickness and death, and the ways in which this can affect the patient him- or herself; the conversations that we have with people about our or their illness (and in our case about prostate cancer, particularly if it is aggressive or advanced); the questions that we ask our doctors; and the questions our doctors are willing to ask us as patients.

So … and this is going to be blunt … here is a list of what your sitemaster believes to be 10 very clear facts and principles related to sickness and death:

  1. We are all going to die, sooner or later. It is one of the very few absolute certainties about life!
  2. We have a responsibility to others to “die well” if we can, by which I mean that we should each plan for our deaths to whatever extent we are reasonably able and make sure others understand exactly what our intentions and expectations are so that they can help us to fulfill them (when possible).
  3. We should understand and appreciate that by planning for the ends of our lives, we are actually helping the others around us to accept our deaths and be able to move on after we are gone.
  4. Every single one of us probably has slightly a different perspective on what we are willing to do (or put up with having done to us) in the interests of staying alive … but very few of us would actually choose to die filled with tubing in an intensive care unit and in a drug-induced coma with little to no idea of what is happening to us.
  5. If we are responsible for helping others who are dying or at risk for death — e.g., because they have metastatic, castration-resistant prostate cancer (mCRPC) — we should be listening to them carefully to hear what they want as opposed to what we want for them, and we should be helping to make sure that they know and appreciate what their reasonable expectations should be.
  6. If one is a physician, one has a responsibility to a dying patient and his or her family to be very clear about what is happening and what can and can’t reasonably be expected. (This includes the fact that it is nearly impossible to tell any particular patient with advanced prostate cancer how long he might be able to live well with such a diagnosis.)
  7. Not understanding that one may have a very limited life expectancy because of a condition like mCRPC can and all too often does very easily lead to seeking and receiving overly aggressive forms of therapy that can cause pointless pain and suffering.
  8. All conversations between physicians and patients about those patients’ treatment options and their prognoses should be in straightforward, day-to-day language and avoid “medicalese” to the greatest extent possible. Most patients “don’t speak medicine” … in  English or any other language around the world.
  9. Every dying patient is entitled to “care” first, as a priority — above and beyond “treatment”.
  10. None of this means that we should be minimizing “hope”. We should always have, believe in, and foster hope, because miracles do happen … but miracles don’t happen for most people most of the time.

18 Responses

  1. A man in our support group is having radiation immediately following surgery for advanced prostate cancer. He asked “What does metastasis mean?” That’s the level of information he had received from his urologist prior to his treatments.

  2. Jon:

    On the upside … at least he was wise enough to ask at the support group!

  3. Thanks for the comments. While I agree with them, we need to revisit how to minimize the number of men that have to die from prostate cancer.

    (1) Screening is effective at identifying men at risk for prostate cancer. This starts the controversy; however, looking at the SEER data it is clear that in the years following PSA screening life expectancy started to increase.
    (2) When PSA screening started, most men diagnosed with prostate cancer were symptomatic with disease that had progressed beyond a single modality for management.
    (3) Men need to understand the risk of not being screened. Who should be screened? This is a choice that is best made by informed men. How can the influence of special interests be be minimized?
    (4) The decision to have a biopsy is complex and needs to be made by men who are informed of the risk and benefits. Special interests need to take a back seat. The patient delivery of biopsy results should a tumor board approach including each modality to eliminate the effects of special interest influences.
    (5) Men need to understand the risk and benefits of each modality for prostate cancer management.

    Informed choices will improve patient outcomes and quantity of life.

  4. Dear Viperfred:

    I don’t disagree with you — although I would quibble with some of your statements. For example, when widespread PSA screening started, which was pretty much in 1990 with the beginning of Prostate Cancer Awareness Week, there was a large proportion of patients being diagnosed with symptomless but advanced forms of prostate cancer. However, there was also an immediate and massive jump in the number of men who started to be diagnosed with localized forms of prostate cancer (and particularly low- and intermediate-risk forms of localized prostate cancer) who were believed to be eminently suitable for single-modality treatment.

    However, there is a whole other issue, which might be exemplified by your own risk for type 2 diabetes (given your age). How familiar are you with the indicators of risk for type 2 diabetes, and have you ever discussed that with your doctors? There are some who believe (and I am one of them) that we are now massively over-treating very early forms of diabetes when what we should actually be doing is simply eating less and better, drinking less alcohol, and exercising more.

    Type 2 diabetes presents a significantly higher risk for death than prostate cancer, and so does cardiovascular disease. And yet most men aren’t getting screened for these disorders either.

  5. One small remark now, although I hope to write more later. Point 10 is inapproptiate. Some of us are atheists. We do not believe in miracles, or anything having to do with faith. I would leave any doctor who uttered the content of 10. It is no different from being told that there is hope that Jesus will save me. Or whatever dogma (in the technical sense of “doctrine”) a medical person wishes. Given today’s science there is no hope in these cases of prostate cancer. Don’t lie to them.

  6. Reblogged this on Dan's Journey through Prostate Cancer and commented:
    I’m not trying to get ahead of myself by posting this, but this article is something everyone should think about.

    My mother had a really great outlook on death and dying, and was very open about her feelings (Item #3). I truly believe that her openness did, in fact, make it easier to come to terms with her death. She even created a little to-do list that started, “When I croak…” Seriously.

    The hospice team was astonished by the level of openness in our conversations. There was no denial. We talked openly of end-of-life decisions, and my mom even had a hand in writing her own eulogy.

    As the author said in Item #1, none of us are getting out of here alive, so planning for the end, especially if you have a disease like cancer, is important and shouldn’t be neglected.

  7. Dear George:

    In case you hadn’t noticed, sometimes the strangest things happen, and patients respond unexpectedly to therapies that (arguably) have little hope of producing the results that they do. It is commonly the case that science cannot explain these outcomes either at the time or even later.

    The term “miracle” doesn’t always have to be seen in the context of religion or faith at all. The Oxford English Dictionary gives multiple definitions of the word “miracle”. One, indeed, is:

    — “a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency”.

    A second, however, is

    — “a highly improbable or extraordinary event, development, or accomplishment, that brings very welcome consequences”

    Please note the lack of any reference to “divine” anything in that definition.

    Since I am also also an atheist, I respectfully consider your comment to be inappropriate. You selected a specific definition of the word miracle that was in no way implied by the writer!

    I would also suggest that there is a better form of the first definition above anyway, which is:

    — “a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered (by some but not by others) to be the work of a divine agency”.

    Finally, let me note that the origin of the term miracle is the Latin word “miraculum”, which is best translated simply as “object of wonder”, and again has nothing to do with religion or faith.

  8. Dear Sitemaster:

    Good reply but here are some points.

    1. The phrase ” surprising and welcome event that is not explicable by natural or scientific laws…” is inapproptiate in this contex unless followed by, e.g. “at this time.”

    2. But then any suggestion of something contranatural vanishes. For to say that divine intervention might explain an event that cannot be scientifically explained at this time is a sign of incredulity or of a defect in critical thinking, namely an irrational leap of faith to a pseudoexplanation. We can always fillow that sentence with e.g.”Hopefully science will explain it in future.”

  9. Dear George:

    Respectfully, you are dancing on the head of a philosophical pin. Thousands if not billions of things have happened over time which we have never been able to explain “scientifically” … starting with how human brains work, which kinda underlies the whole issue since you are basing your comments the highly arguable premise that if something cannot be explained at a particular point in time it is a sign of “incredulity or a defect in critical thinking”. I don’t accept that premise at all — and neither would most people who define themselves as “artists”.


  10. Dear Sitemaster,

    You misunderstand that premise. It claims that recourse to divine intervention just because something cannot be scientifically explained now, is a sign of incredulity (or of gullibility, or a leap of faith …).

    I know I was being philosophical. My degrees are in it, with a lot of philosophy of science and logic. It’s part of my job to point out faulty reasoning. In this case by pointing out the need to restrict claims of “cannot be explained” to a claim about our current lack of knowledge.

    About the brain, you are right about our lack of knowledge about how it works. But even if we will de facto always lack that knowledge, the brains may still be totally governed by natural laws. For our brains might be just too complicated for us to know how those laws apply to it. Here again, recourse to faith is not needed; one can leave the matter as I just wrote.

    In the second half of the 19th century the religions in the West were losing influence to science and humanism. That slowed down or stopped after World War I. Religions and other irrationalisms are on the increase in many places. They should be kept out of medicine.

  11. Dear George:

    But you are the person who raised the issue of religion and faith, not me. I was using a definition of the word miracle that is specifically accepted linguistically by the OED! You then placed a philosophical interpretation on my use of the English language that I consider to be inappropriate and irrelevant. You are at liberty to choose to use the term “miracle” only in relation to issues of religion and faith. However, you also need to accept that this isn’t how others necessarily choose to use that word. Language evolves all the time and is not necessarily subject to this type of philosophical interpretation.

  12. The OED is not always reliable about current usage. A few years ago they did update it for many words, mostly swear words! But here I was reacting to an American use, which encourages regressive claims that ‘everything happens for a reason.’

  13. Kaiser Health News will probably never do an article about how I had to ask for a digital rectal exam and a PSA at age 52 (results normal), and then never had any other prostate tests or screening while I was with the HMO. By the time I was in great pain in an emergency room at age 65 with a PSA of 5,006 and multiple metastases to bones and lymph nodes, it was far too late. My early death and suffering despite multiple FDA-approved treatments for advanced metastatic prostate cancer is now statistically assured. Needless to say, my family and I have since, by necessity, become very informed about the risks/benefits of treatment options, quality of life, and end of life planning issues.

  14. Dear George:

    Re: “I was reacting to an American use, which encourages regressive claims that ‘everything happens for a reason.’ ”

    I think if you actually lived in America you would change your opinion about that quite quickly. Again, your opinion is coloring your perspective.

  15. Sorry Charles,

    Your story is an extremely sad example of a healthcare system’s failure to provide basic care. Prostate cancer is treated like a normal part of aging and a disease that is best treated by watchful waiting or ignoring. This is a disease that can be effectively managed if detected early and treated with therapies that have very high control (no one likes to say cure) with very low to no toxicity, no recovery time required, outpatient therapy, low cost, and high quality of life. It is called SBRT or CyberKnife. As patient 67 in the Stanford clinical trial started in 2003, I was treated at the end of April 2008 and the outcome was a miracle, in my opinion. No lasting side effects, great quality of life, and PSA below 0.4 ng/dl.

    Men need to be informed to make healthcare choices that are best for them. I did not listen to my primary care provider as I knew my family history; my father had the same outcome as Charles. Before PSA screening prostate cancer was typically diagnosed when patients were symptomatic. Again, men need to be informed to make choices that are in their best interests.
    We must take personal responsibility for our health, diet, exercise, drinking smoking, family medical history, etc. I think life is a miracle that is best served by caring for others, respect for self and others, integrity, intellectual development, and kindness.

  16. Dear Viperfred:

    While I am delighted to hear that SBRT was apparently a highly successful form of treatment in your case, I think we also need to caution that it may well not be either appropriate or so successful in other cases (i.e., appropriate patient selection is a key issue); that the risk for side effects is actually significant — particularly in the hands of under-experienced providers; and that SBRT can actually be carried out using a variety of equipment, and does not necessarily have to be carried out using a CyberKnife.

  17. My husband is at the 5-year mark since diagnosis of Stage IV metastatic prostate cancer. He has had all of the treatments available — and while he is doing OK, he’s definitely not himself. Has anyone heard of any new treatments coming up for this type / stage of prostate cancer?

  18. Dear Ellen:

    May I suggest that you (or your husband) join our social network, where we are able to discuss (in an open forum or privately) individual cases in detail and (sometimes) are able to make helpful suggestions and recommendations.

    You can join that forum either anonymously if you wish — either by using a pseudonym or by just using an unidentifiable version of your name, such as ELM.

    It is likely that there are at least trials of new drugs that your husband could consider participating in, but participation will depend upon the individual details of his condition.

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