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

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.

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.

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.

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.

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.

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...

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.

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!

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.

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!