Do No Harm?

I’m frustrated and mad the more I think about this.

My grandmother started doing strange things in 1992. She was in her 80’s and we thought it was just her getting old. We took her to the doctor that was her and my mom’s family physician. He said she was fine, just getting older.

Then she got to the point that we had to take the keys away from her so she couldn’t drive. She almost got herself and my mom killed by crossing lanes on a 4-lane highway with a large median and heading toward a tanker truck that was coming towards her. My mom had lost her vision due to diabetic retinopathy, so she depended on my grandmother for transportation.

Then a few years later we were eating at the table. My mom, her sister and family were gathered around. Nana (that is what we called her) had lost the capability to cook (she was the only one who did the cooking when I was growing up), the doc once again said it was just old age, “old timers” as he called it. We asked about dementia. Nope, she was just getting old.

My Nana was no fancy smancy lady, but she had manners. So the night when she went out on the porch (we lived on the “mill hill”) and squatted in front of God and all the neighbors and took a pee I called BS.

We took her back to the doc the next day and explained what had happened. Nope, there was no problem. This went on for 6 years. Now I have no medical degree and neither did anyone in our family, but we knew that something was up.

One day Nana fell and wound up in the hospital. Guess what??? The attending physician referred a neurologist to visit her in the hospital and the dementia diagnosis was given. Seems we were right, she had battled the disease when we first suspected it. I never could understand why the doctor couldn’t see it. But is was too late. 6 months later she was dead.

Granted, when we would take her she did act decent and as though she were in her right mind. She could answer the simple questions that he asked. But the doc should have figured out that we may know a little bit about what we were telling him. Had he pressed her more he most likely would have discovered there was more than meets the eye. Even having her do a battery of tests could have been warranted that would have tested her mental capacities.

Fast forward to today. I’m talking to a local Alzheimer’s advocate about why people aren’t getting diagnosed earlier in the stages of this disease. She told me, “most of the doctors simply do not want to acknowledge that the patient has something that can’t be cured. They are trained to fix things, and (as of the time I’m writing this), there isn’t a fix.” So the doctors choose not to tell. They may prescribe the medicines, but they will either forego explaining what the med does, or they will tell them it is for something completely different, even though they know it is a lie.

DAMN! Now, do you see why I’m mad?!?!?!?!?

Here is the Hypocratic Oath that was adopted in the 1960’s.

     I swear to fulfill, to the best of my ability and judgment, this covenant:

    I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

    I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism. (notice that they will apply their knowledge and ALL FREAKING MEASURES that are required and it is for the BENEFIT of the sick. If you don’t tell the patient, how can you expect them to benefit???) I’ll talk more on this point later.

    I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. (IN OTHER WORDS, LISTEN TO THE PATIENT AND THEIR FAMILY!!!!)

    I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery. 1 WORD “REFERRAL”

    I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God. “enough said”

    I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. (When the family doesn’t know for sure, they can’t prepare adequately, therefore you are not keeping your oath doctors when you fail to talk candidly with the family and loved ones about the patient and what may lie ahead.)

    I will prevent disease whenever I can, for prevention is preferable to cure.

    I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

    If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help. (Herein lies the problem. “may I long experience the joy of healing those who seek my help.”) DOCTORS, you CANNOT skip over the other parts of this oath and cling to this one, writing off those you know where there is no cure!

Here is another way to look at it.

Scenario 1: A patient comes in and through testing you find that they have a cancer that is stage 1 (whatever). No patient has ever been cured, but there are drug therapies that have shown promise at greatly slowing the disease. You choose not to tell them what is wrong, you simply tell them that they are tired and hurting but you can prescribe something that will make them feel better. They go home and take the pill, but the disease progresses until stage 4 and too many of their loved ones are suspecting cancer because of the signs. You “run” some tests again and tell them that they have stage 4 cancer. No treatment will be effective at this stage, but if they’d like you can try it, or you’ll refer them to hospice where they can be comfortable until they pass. Many cancers feed on SUGAR and will EXACERBATE the condition, but this person won't know to at least change their diet BECAUSE YOU DIDN'T TELL THEM!

Scenario 2: A patient comes in complaining of symptoms that could be the flu or at least a pneumatic problem. Through your talk with them you discover that they have multiple partners and hate the thought of having to use any protection. A blood test will confirm your worst fear, HIV. Knowing the stigma that HIV brings, you tell them that they have some sort of infection affecting their breathing and give them a drug that has shown promise in HIV patients. You explain that it may take a while to feel better, hoping that the medicine will buy them time. BUT, you’ve now sent someone on their way who can continue to go our and unknowingly infect many others because of their lifestyle.

Scenario 3: A patient comes in complaining of tiredness, trouble going up hills or walking any distance at all. You run tests and discover that they have Congestive Heart Failure. There is no cure, but there are treatments with oral drugs that can be given. A diuretic will draw the fluid off and make them feel better. You admit them overnight in the hospital, run IV diuretics for a day, pull down 15-20 pounds of fluid. The patient feels great. You send them home with the pill, maybe combined with a blood pressure med (tell them they need this bp med as it is newer and better) and hope for the best. Meanwhile the person who needs to step up their activity and cardio strengthening goes back home to the couch where they have resided for the past few months. They continue to battle the buildup, but you never tell them until the heart attack happens and it is too late to do anything.

DOCTORS! Answer me this. Would you really do any of these situations? If so, which of the 3 do you think is OK? NONE YOU SAY?!?!? Well then, why are you doing the same thing to patients who have other incurable diseases, just because of the stigma that may be attached.

I’m not one who likes to think about government regulation. I think that the government needs to butt out of people’s business. But when it comes to deception, which is what this is, the powers that be need to hold someone accountable.

I would like to see a bill passed either at the state level for each state, or preferably at the national level that would prevent any of these scenario’s from ever happening again. I would call it the “Right To Know” Act. It would state that the moment a physician knows or suspects a diagnosis, they are required to tell the patient and/or the family about what they suspect or have found. This would put the burden on the family and patient. The physician would give them all the options and they could choose. If they don’t do anything about it, then the physician is relieved of any responsibility. But any physician that fails to do as such, would be subject to a license review and possible forfeiture.

BUT, let me say this. I’m not saying all doctors are bad. There are plenty of them that are upfront and tell the patient and the family what is going on. I’m lucky enough to have that kind of medical care. I understand no doctor wants to be faced with something that can’t be fixed. They don’t want to feel like they failed someone because they could not provide a cure.

But withholding information is failing someone. It is preventing someone from actively searching for the next steps and developing a plan and solution for their care going forward. Deception is rarely excusable unless the reveal could cause irreversible traumatic damage.

We have to move forward and get more doctors and families to be more proactive in the patient care to the utmost fullness that is humanly possible. How do we do that? Like I said, I hate adding more regulations, but unless we’re going to put this at the forefront of the healthcare sector of our nation, this is needed to stop the madness before more people have to suffer needlessly.

What are your thoughts on this? I welcome your thoughts and what you have witnessed through watching and experiencing these situations with your friends and loved ones. Together we can make a change for the better, but we need to start the conversation NOW!

As always, #AlzSux #HydroWarrior4Ever! #EndAlz