What is a bad prognosis?

It was recently pointed out that one of my partners had made an error in a patient’s electronic hospital chart.  Did I want to correct the mistake?  Curious, I looked at the computer screen.  There in 12-point-Cambria-black-on-white was the culprit documentation.  The words were:

“Our therapy goal is palliative.  Prognosis is good.”

Now, this was clearly not what the author had intended. In common practice when someone is so sick that we are focusing on purely palliative ends, comfort care, it means that the patient’s prognosis is limited, bad, even grim.  Generally, if the prognosis is “good,” we have more lofty goals than just quality of life.

Nonetheless, it occurs to me that it is a matter of definition; what do we mean by “prognosis?”  For most of us, it means the likelihood of healing, rebuilding or cure.  A bad prognosis means there is little chance for recovery. Someone with a good or excellent prognosis is probably going to get better.  Does this really make sense? What if “good” meant something else?

Pro – no – sis: the likely course of a disease or ailment. A forecast of the course of a disease, ailment or situation. Origin: pro = before + gignoskein = know. To this we add the judgment; good, bad or even terminal.

However, what if we start with the basic idea that all life ends, that even the most excellent prognosis is terminal?   What if we also accept that disease is a natural life event?  Then something absolute, such as death, is not good or bad.  It simply is.  Can one have a “good prognosis” even while actively dying?

Joe and Jim both have prostate cancer.  Their cancers are growing despite treatment and both have three months to live.  Most of us would say, “They have a bad prognosis.”  Joe receives the benefits of a sophisticated pain regimen, nursing support, a robust family system and first-rate hospice care.  Jim is poorly connected to caregivers, uninsured, has limited access to food, let alone pain medications, and lives alone in a substandard, poorly heated, apartment. Do these men have the same “prognosis?”

Their prognosis, “likely course of their ailment,” is quite different.  Joe may be able to stay at home with his family, his pain in control and perhaps enjoy social events and support.  Jim will be alone, probably ending up on a hard gurney in a crowded, noisy late night emergency room with limited palliative care, likely in continuous pain, poorly ambulatory with bed sores down to bone and will not able to enjoy a single meal, let alone a holiday repast.  Joe has a “good prognosis.”  Jim, not so much.

We cannot change the final infinite prognosis. Death is not the enemy.  Sometimes not even disease.  Suffering is the ultimate evil. Therefore, prognosis is not just about length of life or therapeutic result, but about quality of life.  If we always define life as a fight against illness and time, we will not be able to optimize final planning or care.  If we set our goals to achieve the best in life, realizing that “good” means more than “heal” or “recover,” we make possible precious quality time, even at life’s end.

10 Comments

  • Margaret Hughes
    Beautifully said.
  • meyati
    Thank you for pointing out the differences between the 2 patients. I belong to several cancer blogs, and the different regions seem to have different standards, precepts in care. Then as you state patient finances also make a difference. There's nothing like griping about something-trying to find out what the norm is, trying to find resources, get advice, etc. and have people that probably go to Mayo tell me that I'm crazy, I must be a trouble maker, because that just doesn't happen. I live in a state with one of the lowest Medicare payment rates to doctors. This gives us doctor shortages, and while I've been very lucky in getting good doctors, there are a lot of bad doctors here-well maybe not bad- but not good. I'll be blunt, my first team sucked. The Nurse Navigator made 3 appointments for me in the same hour on the same day. I kept the one that I couldn't reschedule, and rescheduled the other 2. I tried to talk to her, and to her supervisors, they all said that they'd get back to me. They didn't. I sit down on the phone, and called ACS to find out what I needed to do for maintenance of this type of cancer and location. I went through lots of sites to get information. On the advice of the ACS legal line, I threatened to sue if I didn't get a new oncologist. The front of my chart says that I'm a trouble maker, non-compliant. My doctors told me that. They are also saying that I'm kind, intelligent, proactive to try to counter act the early mishaps. I rounded up my own team. I set up my own schedule. When I went into a new office, I quickly explained that I didn't have a Nurse Navigator, and they'd have to deal with me. If that was unacceptable, please let me know now. I've been met with kindness and understanding almost every where. I don't know if this situation is caused by my lack of finances, by the type of cancer on my face (I've talked online with others that felt they were run out of a clinic by this, and it's incurable). I don't know if it's finances caused by current federal reimbursement laws-or what-- I'm terrified of when things go south for me. I don't think that my family can handle this. Right now I'm antsy anyway, I go in Monday for my scan with contrast. I'll find out if the nodules became reactivated. The skeleton area always hurts- surgery problem. This article expresses my fear, and I don't have anybody that I can talk to about this. So thank you for writing the truth-that all things are not equal or fair, but they should be.
    • God bless and comfort you. I am a good listener. Shoot.
  • Well said. Beautiful sentiment. Makes me feel more calm and settled about what is happening to my body, from getting older(gracefully?), to dealing with Waldenstrom's Macroglobulinemia, not curable but under control. This is the day......
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  • Liz
    I don't buy into the we will all die anyway so lets trivialize (which is what this is doing) dying of cancer or (something else that is cutting life shorter than it otherwise would be) both by saying we all will die anyway so the death part isn't relevant and by redefining the usual definition of prognosis. If you are going to die soon the prognosis sucks. That you would eventually die anyway of "old age" does not change that if you are sick enough you are going to die soon does not then change the prognosis for living from poor to good. Quality of life is not prognosis. Quality of life is about how you are living with what time you have left. Don't confuse the two. I am sure many/most of us with a cancer that will kill us don't. I'd bet many of their family and friends don't either. Don't essentially tell me, which you are doing by this blog entry, that because I will die much earlier than the other members of my extended family, that this won't matter since we all die anyway; that if I can make my remaining time fall under "good quality of life" then my prognosis is good. Really? I will still die "early". Like "quality of life" is going to somehow "make up" for a very much shortened life? That is utter and complete BS. Sure we would all prefer a "good quality of life" - sick or not. Sure suffering is an "enemy" (and I hate the war analogies people seem to always attach to cancer that they don't seem to attach to other diseases, including those that can or will kill you), but so is a premature death. I would suspect that most cancer patients would rather not have cancer and for a subset of them die a premature death. The death part matters to many of us. Don't hijack that and cover it up with quality of life issues. Don't redefine "prognosis" and in the process fold two concepts into one, where you are focusing on the quality of life, trivializing the soon to die part. In either example the prognosis is poor. The quality of life between the two examples is different. The truthful way to represent these two people is "Our therapy goal is palliative. Prognosis is poor.” Then add that one patient has the supports in place for a reasonable quality of life; the other does not.
    • D Someya Reed
      I agree with you 100%, Liz. On this one the doctor's "hospice (leaning and background) is showing." Just as hospice attempts to convince us the "redefinition of hope" is something desirable, in actuality it is misdirection from the inevitable conclusion of a terminal prognosis over which they (hospice) have absolutely no ability or desire (by their own philosophy) to change or avert. Now, Dr. Salwitz is opining that we change the definitions of more words we find distasteful, or that make us feel bad or make us feel powerless. But, as with hospice, it sounds better when they say that "hospice is not about giving up hope" as opposed to the more truthful words of Cicely Saunders (founder of modern hospice) that "You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die." But, obviously, somebody didn't like the "help you die" part and decided that a better marketing catchphrase was needed. Now we get statements like, "At the end of life, at the sacred transition to the afterlife, a mindful presence and attention to physical, spiritual, and emotional needs is required to ease the transition with the full dignity that it deserves." This is an improvement? So now we should redefine "prognosis" or "good?" For the benefit of whom? Patients? Don't see how that would improve anything for them. Or is it to make those surrounding and/or involved with the terminally ill feel just a little bit better about what they may or may not be doing for those patients? If hospice is true to its philosophies (such as, that no one should die alone) then it should be racing to provide assistance and comfort for "Jim" no matter where he is. If we continue down this path of fantasy, all those stories of dystopian societies and dismal futures (for the old, the sick and the dying) will likely come true sooner than we think (or want them to). How easy it becomes to believe what we are doing is always right when we simply change definitions to fit (not the facts) but the desires. And whose desires will we choose?
      • Liz
        I think the other thing redefining prognosis to mean quality of life does is that it doesn't help family members (or at times patients) in denial or having trouble accepting that the person (or they themself) is dying. It supports denial and misleads both the patient and family about the ultimate outcome (impending death). In the end doing so will cause more pain and regret for the family and/or the patient that they didn't get to do things they wanted to do, say the things they wanted to say... because the "prognosis is good"…'But his/her prognosis was good. I didn't think he/she would die…" or "If his/her prognosis is good why is he/she in hospice?". It may well encourage more useless chemo and treatments that cause more agony than good...And of course what I have already said from the patient point of view - if I am going to die soon my prognosis is NOT good and to state otherwise is, in my opinion, complete and utter BS, unethical and cruel; my quality of life may or may not be good but that is totally different than whether or not the ultimate outcome will be good (live) or not (death). Call and ace and ace. No doctor should even think about lying to me about my ultimate prognosis when my time comes for whatever twisted reason the doctor is using to deny the truth to themselves; soften the blow to themselves that yet another patient is dying… or whateverreason they are using to justify redefining the word prognosis. This blog post really, really pisses me off.
  • Iris
    “Our therapy goal is palliative. Prognosis is good.” Truthfully, an MD could be talking about me. I never know when my body will explode. I slipped off my bed in Feb, 2014 and half of me was stuck under my bed. I couldn't get out! I know I bumped my head 2x, but I wasn't bleeding...just real cold.. Apparently my kids finally realized something must be wrong with me because I work at home and I'm stage 4 Lung cancer, Non Cell, aden;, the entire shebang...oh, Lupus and every autoimmune problem. Meanwhile I was dreaming or actually having a nightmare. (I still know everything....) All of a sudden my son walked in with the paramedics. I called out, "Hi"....This was almost 3 days of laying on the floor. The alert button fell off my wrist. I was dreaming that a person was trying to kill me and I fought like a crazy person and used every muscle I had developed from tennis. The problem was I was actually fighting my own son in the ER with someone else. I was told I was sick. They told my son to call relatives because my prognosis is very poor. I was dreaming I was on a cruise ship and a killer was still after me. I kept looking for my son and doctor. BUT even though the hospital MD was planning my demise.... NO WAY!! They were doing 100 tests, but they really couldn't pin point one reason why. I also was running 105 fever. I met that same woman doctor in the rehab. Some people were asking how they were...I did that too. This is what she said to me, "AS I TOLD YOU IN THE HOSPITAL< YOUR PROGNOSIS IS STILL POOR".... Me talking to her: LADY< I NEVER SPOKE TO YOU IN MY LIFE!! WHAT A WAY YOU SPEAK TO A PATIENT!!! After spending 1 month in rehab, these people screamed all night and cry. I push for the nurses and they dont come so I made my self a caregiver. The patients liked me as their nurse. It's hard being a patient and also hard for the nurses. One man made me upset... He was yelling for his wife! That's it! I lost it..He was going home the next day!!! I went home a month later..My brothers all flew out or drove home....my daughter went back to Ca,, I think they keep people as long there is insurance or medicare. It did take me a long time, though, to realize there was no boat...but a hospital bed. I just want you to all know that there is a life afterward. I have seen it, heard people, and there isn't a hell I saw. God wanted to experiment to see if humans would be kind and listen starting with Adam and Eve, and we all know what happened there. If there is a person/people that are cruel...they are sent to a cleansing area. An action brings a reaction and not the persons fault. They don't remember anything and are new again. I always felt I had someone next to me. I was saved from drowning, started to skid down a hill in my car and the list goes on and on. Don't be afraid. Your loved ones are safe and happy. They are definitely not hurting in any way. I don't know why I feel and hear some and not others, but that's the way I have always been. It's your 6th and 7th sense. Lets say, I felt as if I didn't shut something off...I will go back and check. Animals and little children can do it too. When my daughter was 4, we passed a hospital and she looked at me and said, "I remember being there. I was a boy and I had a lot of things stuck on me. But you're a girl I replied. She then said I used to be a boy. As a youngster I loved going into a Church down the street and lit all the candles. In another Church I thought the place where the people washed their hands...smelled good and put it all over me thinking it was perfume. God Bless All Of You~~~~~
  • Iris
    I just wanted to add one more thing....Palliative good/poor prognosiss. I am a palliative patient. I didn't want my right lung cut out. I couldn't take the chemo. I took it two times: My teeth were killing me...they were moving...and my two front teeth spread apart and what was left turned yellow. Now, my LC will not go away, but I am just being myself. I have no pains, no bleeding from my mouth, no headaches, I am going to go on a diet asap! And I don't have a cough. The only thing I use is aspirin once in a while, a wig when going out because the lupus is definitely working its job, and no extra saliva in my mouth. For depression..yes, I take meds. For sleep, I also take meds. Some people take ambien...my Dad and I both couldn't take it. No sleep at all! That is palliative patient with poor pronosis. Everyone thought I would come down with MM because my IGG was so high but I didn't. Three of my family members came down with MM, two had Waldenstroms, the rest heart. I have no family left, The good thing is I am a grammy to 3 babies and my son's wife is pregnant. Regarding morphine to help or not? If most docs were saying NO and then turn the morphine all the way up....GOOD. That is helping the patient! THey just don't want to admit it. That's what I call a wonderful doctor. To kill the pain. They should give ballots out, with no names allowed on the paper, and then count them. Ask the caregivers of the patients what they would prefer? Then ask the patients. My Dad passed the exact time he wrote in his calendar "going home today".... I often wonder when their pets are so sickly and are in pain, do the people that love take them to the DVM to put them at peace...or do they watch them at home suffering. I have rescued the abused and sick dogs all my life. I loved each and every one of them, and I cry hysterically when they pass. When a human passes, I never cry. This is not the end of their life; it's the beginning.

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