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Keepingmyword Asked December 2014

What to do when a doctor really screws up bad in prognosis?

The doctor also strongly urges that we put Mom on hospice then another says maybe not.
My sister and I were told by a doctor at the hospital she was in ICU at that she had absolutely no kidneys left and that even if we kept her on dialyses her chances of living past 6 months were not there. he suggested we put her in hospice and give her all she needed to be comfortable and let nature run it's coarse. so this was on a Saturday and they had just finished the last treatment that evening. We talked with her and she agreed to do the hospice but wanted to do it at home. We all agreed and went with that plan. My sister and i came home and rushed to get the apt ready for her to come home. We knew it would probably take a bit being it was the weekend then the stress really began because we really hoped we could get her home before her non kidneys and no treatments took her before we could get home. Then come Monday I finally get an assessment by a provider to get the ball rolling and I go to the hospital and we have the talk with her again presenting her the option of staying on the treatments and maybe living a bit longer but in a nursing home away from family and on a machine every other day which she already hated anyhow...or to quit the treatments and come home and die as she wanted to with help and meds for comfort. She asked how much time would keeping up with the treatments give her...I again told her what the doctor had said and she said ok let's do the hospice. Now mind you this woman is only 68 years old...
Then after we have all the papers signed and plans made i was on my way home to wait for the equipment to be delivered when i get a phone call from a different doctor that said he had been caring for her since she got there and that maybe we should know that he had seen an improvement in her that day and that maybe she could last a few years MAYBE on the dialysis and to consider that before having her discharged.
The first doctor had no doubt in his mind that she would not last the 6 months...we made our decision based on that. now this doctor says well maybe we were wrong...?
Do they not understand what they have done to this poor woman by blaintenly giving her a wrong prognosis and making this already insanely difficult situation just that much harder?
Should I seek out legal counsel on this? I feel I should. This kind of mistake is just plain unprofessional. And sadistic.

Francis Apr 2015
I forgot to add that even if you don't believe in God, try praying anyway, He may surprise you.

Francis Apr 2015
If you believe in God, pray about it and talk to your mom and family, calmly. Keep the idea of law suit out of your mind because what is really important here is your mom's life.

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mistaes Apr 2015
Im telling you this because mistakes some on here are calling them little mistakes guess what "MISTAKES KILL PEOPLE" Seek a lawyer!!!!Do not listen to the bullshit some of these hosptitals spew out thre mouths because thats all it is.Trying to get you to feel better so you dont do what should be done sometimes go get a lawyer.The hospitals do not listen to you.There smarter than you im the Dr. I went to scholl for 9 years i know its all bullshit!!

ladypamelade Dec 2014
No...I wouldn't, Pam, but my issue with your statement was that you could cause someone who may well live, with the help of dialysis, for more years in relatively good spirits and health. As I said, dialysis is certainly not wonderful; especially for people on hemodialysis. The day before they are scheduled for dialysis they are exhausted and nauseated, after they've been dialyzed, they're very tired. Then they have a good day and the next day the nausea and exhaustion begins all over again. There aren't those highs and lows with CAPD as dialyzing four-five times a day keeps the patient stabilized - each exchange takes about 40 minutes.

I personally have no intention of languishing in a nursing home. I did volunteer work in both nursing homes and hospitals; sick, elderly people were kept alive as though death was an enemy. When the quality of life is gone, they should be allowed to gently, painlessly leave this earth. The way my life ends will be my choice. I was Bill's caregiver for all those years - I will not have a caregiver when I can no longer live independently.

I would never live with my son and his wife and my daughter as a divorced mother who shares custody of of her two pre-teen sons with her ex has a job that requires she travel 10 days a month has way too much responsibility already to have an ailing, aged mother on her hands; I wouldn't do that to her. I don't believe in "life, no matter what!!!" I plan to either take a long walk into the ocean or to simply stop eating and drinking should I be diagnosed with a debilitating disease which would eventually make me dependent on others. Bill wanted to live as long as possible and I made that happen but at great cost. I was hanging on by my fingernails when he died. Had a breakdown several months before his death; doctors wanted to put me in the hospital but of course I couldn't go so instead I had counseling twice a week until six months after his death. No...I don't plan to "gift" the responsibility of keeping me alive, to anyone.

So many people who write in this website say how they've come to hate the person they're responsible for taking care of. Caregiving is by far the hardest job anyone can do. You lose yourself. You're so many things to so many people and your responsibilities never end. Even thinking about what you need or want isn't an option. You don't count; there's no time for you. You haven't the energy, you're too exhausted and are so stretched to the limits of endurance that "you" disappear. I've shed tears over the messages I've read in this website because I understand so well what the caregivers are going through. The toughest responsibilities, by far, are those taking care of someone with Altzheimers. At least I was spared that! My profound admiration goes out to every single caregiver! God bless you!

sherry1anne Dec 2014
Dear Keeping My Word - The nocebo effect is like an opposite of the placebo effect. I have been reading a very interesting book about how, when given a negative diagnosis and a short time to live, people die. Later autopsy confirms that they were not afflicted with the disease at all. It's the effect of the diagnosis and the practice of giving doctors GOD status that causes people to behave in exactly the way the doctor predicted. I'm 68 and fortunately I'm in good health. The thought of being sent home to die is too much. Do the U-turn as someone suggested above and get a second or a third opinion.

pamstegma Dec 2014
Lady Pamelade, good to hear about your hubby. But the option being given this patient is not living at home, but tethered to a dialysis unit in a Nursing Home with only a maybe for any extension of survival. Would you do that?

ladypamelade Dec 2014
A post script to my comments about dialysis. "Life isn't black and white, NOR is dialysis. Look up CAPD - that's the method of dialysis my husband used. There are many choices now with CAPD. Of course dialysis isn't something someone would choose if they didn't have to, but for many people, its a viable solution to the grim alternative of dying.

ladypamelade Dec 2014
Pamelastegman, you can't make a blanket statement like that. In the first place there are more kinds of dialysis than hemodialysis. My husband dialyzed at home four times a day using glucose. He lived 11 years - he could pretty much eat what he wanted and was able to drink more fluids that patients who have to go to the hospital three times a week and spend hours on a machine. He was contented - he had no kidney function whatsoever, he had conjestive heart disease but he was not unhappy. He enjoyed being taken care of; he went for walks and played with the dogs, he slept a lot but he wasn't suffering. For you to make such a brutal blanket statement about dialysis being pure hell is absolutely wrong. There are people who would rather continue to live and dialyze than to die and leave loved ones. I live in an over-55 building - three people here are on hemodialysis - the hospital is across the street. Two of these people work part-time and drive themselves to stores, to work, etc. They are contented. I met many, many people during the years my late husband was on dialysis. When he first became ill, following two heart attacks and losing kidney function, the doctors said he would only live 3 years - he lived 11 and until the last 6 months, he was able function and have a quality of life. At the end, death became a friend because his condition suddenly took a nose dive and it was obvious he was dying. You need to be careful what you say in these columns. You're helping to influence others to make a decision which may be the wrong one for them. Life isn't black and white, not is dialysis. There are so many methods for people dialyze at night with a machine that switches bags all night long so people don't have to dialyze during the day, thus enabling them to go to school or work. Educate yourself on what's out there for people with kidney failure before telling people the horrors of dialysis. Please!

ferris1 Dec 2014
Now you know why medicine is 80% art and 20% science. Kidneys that are truly failing, do not spontaneously resolve overnight. I have had my own issues with hospital doctors recently, but fortunately, I am a nurse and I know my husband of 30 yrs. better than a doctor who just treated him two days. I took him off the Xarelto (have you seen the deaths & bleeding into the abdomen reports?) and replaced it with aspirin 81 mg. 2x day. He is doing so much better and I will never return him to that hospital. Without knowing how much medical education you have, it is hard to recommend what to do, but since she is 68 yrs. young, I would get a nephrologist's opinion outside the hospital (BUN and creatinine levels can be deceiving), and then ask your mother what she wants to do. Get legal papers signed giving permission to someone to make decisions should she not be able to respond. Rather than go the legal route, save your energies on taking care of your mother's health. Trying to prove the doctor acted in malice and with criminal intent is extremely difficult and unless you have a very large bank account, your energies can be utilized elsewhere.
Again, I am sorry she is having two different opinions, but the human body can surprise even the most gifted doctors. Keep being her advocate...

LME Dec 2014
Could you get a 3rd opinion, since the two you have are so different.

blannie Dec 2014
I agree that medicine is an inexact science. And different doctors have different opinions. The important thing to remember is that no decision you make right now is cast in concrete. Bring your mom home and wait a few days and consider your options. She can try dialysis and if she doesn't like it or she's too weak or doesn't want to go through with its demands, then you call in hospice. But I agree that at 68, you can take time to explore some options that if your mom was 90 wouldn't make sense.

Doctors are human and make mistakes and have different honest opinions. And I think there are two kinds of doctors - ones who avoid the notion that their patient may be dying and others who are very honest and realistic. You've heard from two very different perspectives and right now you don't know which one is right. But you can still take some time to explore options - again, nothing is cast in concrete. I'm just sorry that you and your family (and mom) have to go through this very difficult time.

Veronica91 Dec 2014
Agree with Pam. Dialysis is totally draining. First of all you may have to travel a lond istance to get to the center then spend several hours hooked to machines then get home again and usually collapse into a useless rag. you have to do this three times a week. If you are doing it to stay alive until a kidney transplant can be done that is one thing but if you are simply trying to squeeze a few more miserable weeks out of life that is another. Drs are notorious for not accepting the fact that their patient is dying. i have seen it time and time again when i have seen a patient and told the family it is time to call the relatives and let them know the end is near."But Dr X said he might have another year and he was so looking forward to fishing next spring" I don't know if they don't have the guts to tell the patient or they hate to admit defeat, but they are very happy to leave their dirty work to the hospice nurse.

Christine73 Dec 2014
Sorry, cont'd. PCPs often are a wealth of knowledge and can accurately direct you to the right person to talk to and right questions to ask. Good luck to you.

Christine73 Dec 2014
Is there are ready good PCP (even if he/she is yours) who you can trust to level with and advise you? I'd start there. You need professional advise form someone you can trust. I'm so so sorry.

Keepingmyword Dec 2014
this thing is just h*ll! i dont know who to talk to or who to trust. i need an advocate who knows what the heck to do. Im so lost.

pamstegma Dec 2014
Dialysis is Hell. Pure Hell. Ask someone who is on it. I'm going to guess the first MD was being honest and direct. The second MD is probably the one who gets brownie points for selling dialysis and needs the additional enrollment for his yearly report. Pardon me for being cynical.

freqflyer Dec 2014
I agree with EaseLiving's post above that medicine is not an exact science.

You can have one medical case with two different opinions from two different doctors, and of course we would all go with the doctor who gave the best answer even though in the end the other doctor could have been 100% correct.

And in the mean time while trying to decide which doctor is correct, that patient could have an unrelated medical emergency that takes the life of that patient... such as a heart attack or brain embolism.

If the patient is still of clear mind, have the patient decide what she wishes to do in this situation.

Christine73 Dec 2014
Jeannegibbs, I am so so sorry for your sudden loss and the fact that the news saw delivered so harshly. Sadly, some doctors are really lacking in the "being a human being" department. If anyone should be sued, I'd sue his PCP who was not on top of things enough to detect the cancer when it was in an earlier stage, but instead did an elective procedure on a terminally ill person. I'm not a lawyer, but I think you may have a suit there.

jeannegibbs Dec 2014
How terribly distressing for the family and for your mother! But a ray of hope has been introduced. I hope that mitigates the distress somewhat.

My father was in the hospital but wasn't recovering as expected from minor elective surgery. An oncologist came into the room, told us Dad had inoperable lung cancer and had 3 to 5 days to live. This is the first suggestion any one had made of cancer. We were shocked. Dad's geriatrician was still acting like Dad would be going home some. My brother was livid that this doctor we had never heard of breezed in with such harsh news and left. He talked about suing the oncologist for the distress he was causing us. My father died 3 days later, of lung cancer.

You do not know yet, Keepingmyword, how long your mother will last on dialysis. The first doctor's prognosis might still be correct. That there was some improvement needs to be taken into the decision-making process. But you still don't know whether Mother will live another 4 months or 4 years. Even if you get both doctors in the same room and they talk it out, you will still not know. Predicting life expectancy is something a necessary act, but accuracy can never be guaranteed.

We were told that our mother would probably not last the week and she needed to be on hospice care right now. We went that route. She was dismissed from hospice care four months later, greatly improved. My husband was on hospice care at home and the nurses and I all thought he had several more weeks. They were really surprised when I called to tell them he died.

Predicting life expectancy is pretty tricky business.

I am so very sorry that your family is facing this stressful and challenging decision. Hugs to you all.

Countrymouse Dec 2014
What a mess. Dear me!

I can only say what I would do - a brake-screeching U-turn when I got the call from the second doctor. I should go back to the hospital, gather all of your mother's notes, get both doctors in the same room and bang their heads together (metaphorically speaking, of course).

Forget complaints for the time being. Far more important than that is getting to the bottom of your mother's condition and sorting out what care she needs now.

Just one thing: no doctor deliberately gives his patient or their relatives completely wrong information for the sheer heck of it. They get things wrong, and in this case clearly they can't both be right. The first doctor made an assessment and told you what he believed. The second doctor, a little while later, has made his assessment and come to a radically different conclusion. Why in God's name they're not talking to each other I cannot explain, but neither is setting out to distress you or your mother.

Nevertheless, the outcome is distressing and you must be frantic. I hope you'll get some sensible answers out of them very soon. Best of luck, please update.

EaseLiving Dec 2014
I understand your frustration for sure! But you have to remember that medicine is not an exact science. There is no final answer for anyone on prognosis, recovery time etc. Each doctor was speaking based on their knowledge and past experience.

cwillie Dec 2014
Some one I know was told by ER docs on two different occasions that her dad only had days to live because his kidneys were shutting down. Both times he improved and lived several years after the initial prognosis. You don't say why your mom was in hospital, or if the kidney disease is something new or a chronic condition. Still, at 68 I would not give up the fight yet. No one should have to make such a decision without taking time to weigh all the options, and usually a hospital stay is at a time of crisis. If you continue with dialysis now she can still make the choice to call hospice later if her quality of life is intolerable.

BarbBrooklyn Dec 2014
If I follow your post correctly, your mother's kidney function started to improve AFTER you had made the hospice decision, not before? Or do I have the time line wrong?

Who are these two doctors? one the hospital is and one the nephrologist, ie, the kidney doctor? The important question is, who is looking at the whole person and not just her kidneys? Is there a Palliative care team at the hospital who could give you an opinion?

I often find it helpful to ask physicians, if this was your mom, what would YOU do?

What does your mom hate about dialysis? Has she been on it long? Extended periods of being without kidney function can cause very fuzzy thinking. You might want to consider keeping her on dialysis for a bit longer to see if her outlook improves. Unless she has other physical impairments, I think I would encourage her to try to get used to a new normal.

I'm so sorry for all the stress you and your family are going through. We recently had a situation in which one hospital doctor wanted to do extensive followup testing and intervention for my mom's lung problems. She's 91. His older partner said, stop poking holes in your mom.

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